About

I’m a man in search of a dream, both literally and figuratively.

My dream is to sleep again.

In the solitude of that sleep, I will be able to dream and allow my brain and body to heal and enjoy life the way it’s supposed to be enjoyed.

It sounds simple, doesn’t it? Sleeping. Just close your eyes and drift off into another world and leave your current one behind.

For some of us, it’s the most difficult part of our lives.

I cannot sleep like a normal person because of muscle twitches and jerks at the VERY second I begin to fall asleep.

Every single time I begin slumber, a twitch and jolt from my rebellious body wakes me up.

I’m not alone either. Some call it hypnic jerks, or sleep myoclonus, or sleep starts. I call it torture.

This blog is to bring those of us suffering from this condition together. This is our voice. I’m finished suffering by myself and not knowing how to explain this to doctors or others. Let’s help each other gets our lives back. We don’t have to feel alone and helpless anymore.

1915 thoughts on “About”

  1. Interesting article on cortisol and the effects of disrupting the normal cycle of cortisol levels:

    https://experiencelife.com/article/the-cortisol-curve/

    So far this makes the most sense to me about why I’ve been suffering from this condition for over 15 years. It addresses how my stress/anxiety and alcohol use could perpetuate the problem but also pointed out a few new things. One of the things that frustrated me the most was how I’d have periods where the jerks weren’t as bad and then out of the blue they’d become worse again. I’d become excited when they’d get better thinking I was doing something right but then boom they’re worse again. As far as I could tell it followed no pattern or time line.

    Now after reading this article I’ve identified several things I’d been doing that could be disrupting the normal cortisol cycle. Specifically the low carb diet, which I’ve done for a LONG time, but also my intense focus of staying on schedule. At times randomly I would eat more carbs and perhaps that helped my “better” times. I also went through all 3 cortisol levels referenced here and never realized that was what was happening. Seems my “bad” times would usually end with adrenal fatigue before I would start cycling through them all again.

    It’s really worth a read if you have the time. Hope it helps some of you.

    • Are u taking anything to help u sleep? If so what? I’ve just developed this 3 months ago after a really stressful time. I’m a mother of three and it is debilitating my life.

      • Anonymous said:

        Try eating black pepper and garlic.

      • Ok I feel compelled to write something here.

        In back tracking through recent posts our friend Jen has been having a heck of a time dealing with hypnic jerks and 3 children, one of which is a new born. I’m 15 years removed from my last endocrinology course so don’t know how post partum affects this.

        That being said Jen had mentioned that she’s tried the following: klonopin, seroquil, trazodene, Mirtazapine, ambien, and others. These drugs are either a form of sedative or antipsychotic. I believe she said the klonopin helped as have others on this board. klonopin is a tranquilizer with the potential for dependency thus not a good long term strategy. She didn’t comment on whether the anti-psychotic drugs helped or not so let’s say they didn’t.

        So what we have here is a mother of 3 suffering from anxiety that can get sleep by using a tranquilizer. My guess is when the drug wears off the jerks begin again. I was able to obtain similar results for years using alcohol. Then we hope that one day we’ll wake up and our problem will be gone without changing anything else. For some that may be but it has not been the case for me. So while I’m sure the suggestion of garlic and black pepper was made with good intentions, I find that laughable. What exactly is that supposed to do? All of us on this board are deficient in garlic and black pepper? That’s why we are suffering from these jerks?

        This idea that we can take something, whatever it is, and our jerks will go away is a fallacy. Bryan2 said it best in that we need to make life style changes if we want this to go away. We are doing something, providing a stimulus likely daily that is leading to these jerks. My theory is that it stems from a disruption of normal cortisol cycles due to stress/anxiety. Anxiety is the common theme on all boards dealing with hypnic jerks. You can take all the drugs, supplements, and garlic you want but if you have unchecked, uncontrolled anxiety you are still going to suffer the ill effects from it.

        It is a known fact that people with insomnia have increased secretion of cortisol through sleep-wake cycles. Anxiety leads to higher levels of cortisol, which will keep you jazzed up til you run out. Then you crash. If this occurs during the day your body starts making more and will probably peak sometime in the night, keeping you awake when you’re supposed to be asleep. Learn to manage your stress and read this article if you haven’t to see how to help re-establish normal cortisol cycles.

        https://experiencelife.com/article/the-cortisol-curve/

      • Anonymous said:

        healthyeating.sfgate.com/effect-black-pepper-brain-8604.html

        http://www.livestrong.com/article/526381-raw-garlic-for-depression-anxiety/

      • Anonymous said:

      • At best I can call these two references weak in supporting your argument. The first starts off saying there’s little to no evidence to support garlic helps anxiety and the second suggests garlic improves memory. I don’t need to a memory boost to know what kind of hell living with this condition is.

        But you miss my point. I’m not refuting the health benefits of garlic or other nutritional foods/supplements. And while I might sound harsh I feel people are wasting their time trying to find the next magic bullet to fix this. Referencing Jen again, she mentioned she tried 6 or more different medications to help this. According to her she’s getting several hours of drug induced sleep a night. Is it that her doctor just hasn’t prescribed the right pill yet? Or rather is it that these drugs are either not going to do more than they have or are treating the wrong thing? My opinion is if drugs were going to work they would have already. Help get you to sleep? Sure. Fix the problem? I doubt it.

        Proper nutrition is important for health. Supplements and other things have their place too. But telling someone that eating garlic and black pepper is going to resolve this condition is ludicrous.

      • Anonymous said:

        They both increase serotonin levels, that was my point. These are not the only articles that exist that support that. Eating black pepper and garlic might be helping me correct low serotonin levels thus, helping my jerks.

      • I concede your point anonymous.

        However, WHY is your serotonin level low? I’m beginning to sound like a broken record here but most boards, including this one, cite stress or anxiety when they talk about developing or having jerks. I found this quote off the livestrong site you referenced earlier:

        “Stress is a common cause of low serotonin levels, resulting in a snowballing feedback cycle of disrupted sleep, depression, anxiety and fatigue during the day, according to clinical psychologist Joseph M. Carver.”

        So my point is looking for something to take while ignoring the cause is the wrong approach. If a person is over weight they can add Ginseng or other natural weight loss supplements to their diet, but if they continue to eat the same way and not exercise it probably won’t do much good.

        So perhaps what you said will help serotonin levels. What did it do to help reduce one’s stress and anxiety? Sure you’re boosting your serotonin but what did you do about the reason it dropped to begin with?

      • I suffered from hypnic jerks about a year ago and it was one of the worst things I’ve ever been through. I’m happy to say I’m now “cured.” Here’s my story…

        I was going through a stressful time and my anxiety was getting the best of me. I started having panic attacks at random times during the day. Then I started fearing them, so naturally I developed panic disorder and life became a nightmare. I consulted Dr. Google which brought up a myriad of results which freaked me out even more and I became a complete wreck. Then I started having jerks when I was drifting off to sleep. I consulted Dr. Google again (always a mistake). That led me to this website. The stories of people’s suffering didn’t make me feel any better. In fact, this website did more harm to my mental state than any other. I was scared of having jerks forever, getting hooked on addictive prescription drugs, and going crazy.

        I found a Doctor that would prescribe me Klonopin. It helped some, but wasn’t a silver bullet, and left me anxious during the day. I then found another Doctor, whom was much better than the first, that prescribed me Lexapro 10mg. He instructed me to take it every day and take the Klonopin only as needed, with the goal of eventually tapering off the Klonopin. The next few months were hell but I stuck with the plan. Slowly but surely my sleep started to improve, with inevitable setbacks along the way. Then I went to see a sleep doctor the specialized in CBT-I (cognitive behavioral therapy for insomnia). She explained to me that the insomnia and sleep fragmentation were leading to jerks, and the jerks were leading to insomnia and sleep fragmentation. She put me on a sleep restriction plan and it was instantly beneficial. With time my sleep got better and better and the jerks got less and less frequent and intense. I started welcoming the jerks and not fearing them, which of course made them less frequent.

        It took about 4 months on Lexapro and the sleep restriction program to get my sleep habits to a satisfactory level. It may have taken less time but I was also trying to taper off the Klonopin slowly.

        Then I did something silly. I tried to taper off Lexapro, which was fine for a couple of months but then my anxiety and sleep issues started return. My doctor said to go back on it for a while. So here I am. Still on Lexapro 10mg daily, sleeping fine, meditating and enjoying life. I’m not worried about being on Lexapro. It’s a safe drug with minimal side effects (regardless of what Dr. Google tells you). I’ll try to taper off in another year or so.

        I hope someone reads this and gets on the road toward wellness again. My advice is to stay away from the negative forums. Read insomnia success stories. Trust medical professionals. Believe in yourself. You will find peace again and when you do you will be a better person for having gone through this.

      • I have good news to tell everyone. My hypnic jerks are down 80% and my doctor cut my dosage of gabapentin from 600mgs a day to just 300 mgs a day. Last year at this time I jerked all night and even felt the electricity go up and down my body. I told a Canadian pharmacist about my problem and he recommended I take wheat germ oil to soothe my nerves and rebuild them. I am allergic to gluten so I had to find gluten free wheat germ oil which is made. I have been on it for about 3 weeks now. Soon I will be off the the gaba. I wish you all the best of luck.

      • Wow Juan this sounds amazing. So it’s something you buy at the pharmacist?

    • Hi kdoc. I’m 51 and I’ve started suffering from this condition 3 weeks ago and have been off work since. I think it is in relationship to chronic fatigue also. Cannot sleep due to jerk at the exact time of drifting off. I can only sleep for about an hour until something awakes me, presumably another jerk. Have been thinking I have had everything from a brain haemorrhage to mental illness.

      After weeks of awaiting blood test, being turned away from A&E, being fobbed off by doctors I finally found your blog. My GP has now prescribed Mirtazapine. This seemed to work on the first night, but last night, the 2nd night did not help. I’m now again dreading tonight. I’ve had half a dozen nights with less than 1 hour sleep and it is killing.

      Thank you for your blog which has helped me understand I’m not going insane to about to die.

      Mark

      • That’s how hot all started with all of us. Before bed drink a big glass of water and report back please.

      • Try it, but you’ll just end up going to the toilet more. I’ve tried 1 glass 2 glasses and nothing but worth a shot. The adrenaline surges makes you want to go to the toilet more. How much mirtazapine are you taking? The lower dosage like 7.5mg.thr the better for sleep.

      • Mark H, mirtazapine did not help me either at first, but once the jerks settled a little it helped but that was close to 6 months. Zopiclone,(sleep med) got me through the first 6-9 months combined with mirtazapine. Read some of the older posts, there is plenty of information on what people took, what worked and what didn’t. Remember, everyone is different. Staying off heavy benzos helps but you might need them if it gets really bad and you have no other choice. I started on Valium, then Ativan to get me through also. It’s one of the worst conditions, and I got it out of the blue also.

      • Thank you Mark and Ck for your responses.

        I have been drinking a lot more water than I usually do and now always have water beside bed. It does make he go to loo a lot though.

        The GP prescribed 15mg mirtazapine just before going to bed at my normal bed time 10.30. She also suggested not trying to nap or sleep during the day. Last evening was very hard so I went to bed at 8 thinking to myself you have to sleep or you’ll die. This seemed to let me sleep – I have two jerks, one was when trying to nod off, the other was almost like immediately after nodding off and it was a tripping over and falling dream type thing. I woke at 10 and then took the mirtazapine and then was successful with 4 or 5 periods of dream sleep with no jerks until morning.

        I had been using Nytol diphenhydramine for a few nights which helped a little. I might need to try again in conjunction with the mirtazapine (perhaps just 7.5 mg if that is better)

        In addition I have booked in to see a hypnotherapist today. Not hopeful about that though.

        Thanks again for your support. It’s good to know that you’re not alone. I will keep going back through the blog posts too. I’ll report back soon.

      • Hi Mark H; You might want to try a sleep study before spending time and money on anything else. Sleep apnea is the culprit for some of us here, including me. I had that same jerking as soon as I started to drop off, sometimes went on for hrs. Was finally diagnosed with sleep apnea. Many doctors don’t think of it if you’re not overweight and don’t have the most common symptoms. Now after 8 mos. of cpap, on most nights, the jerking, restless legs and other nerve problems have subsided. Now I only get the jerking when I’m very stressed out from my husbands major health problems. I’ve also gotten some relief from chronic insomnia, but it took time and patience. Some people give up too soon.

      • I suffered from hypnic jerks about a year ago and it was one of the worst things I’ve ever been through. I’m happy to say I’m now “cured.” Here’s my story…

        I was going through a stressful time and my anxiety was getting the best of me. I started having panic attacks at random times during the day. Then I started fearing them, so naturally I developed panic disorder and life became a nightmare. I consulted Dr. Google which brought up a myriad of results which freaked me out even more and I became a complete wreck. Then I started having jerks when I was drifting off to sleep. I consulted Dr. Google again (always a mistake). That led me to this website. The stories of people’s suffering didn’t make me feel any better. In fact, this website did more harm to my mental state than any other. I was scared of having jerks forever, getting hooked on addictive prescription drugs, and going crazy.

        I found a Doctor that would prescribe me Klonopin. It helped some, but wasn’t a silver bullet, and left me anxious during the day. I then found another Doctor, whom was much better than the first, that prescribed me Lexapro 10mg. He instructed me to take it every day and take the Klonopin only as needed, with the goal of eventually tapering off the Klonopin. The next few months were hell but I stuck with the plan. Slowly but surely my sleep started to improve, with inevitable setbacks along the way. Then I went to see a sleep doctor the specialized in CBT-I (cognitive behavioral therapy for insomnia). She explained to me that the insomnia and sleep fragmentation were leading to jerks, and the jerks were leading to insomnia and sleep fragmentation. She put me on a sleep restriction plan and it was instantly beneficial. With time my sleep got better and better and the jerks got less and less frequent and intense. I started welcoming the jerks and not fearing them, which of course made them less frequent.

        It took about 4 months on Lexapro and the sleep restriction program to get my sleep habits to a satisfactory level. It may have taken less time but I was also trying to taper off the Klonopin slowly.

        Then I did something silly. I tried to taper off Lexapro, which was fine for a couple of months but then my anxiety and sleep issues started return. My doctor said to go back on it for a while. So here I am. Still on Lexapro 10mg daily, sleeping fine, meditating and enjoying life. I’m not worried about being on Lexapro. It’s a safe drug with minimal side effects (regardless of what Dr. Google tells you). I’ll try to taper off in another year or so.

        I hope someone reads this and gets on the road toward wellness again. My advice is to stay away from the negative forums. Read insomnia success stories. Trust medical professionals. Believe in yourself. You will find peace again and when you do you will be a better person for having gone through this.

    • This would explain why my jerks are far worse when I tried to go ketogenic and reduce carbs. Anything that disrupts my blood sugar makes the jerks worse.

      I was hoping a low carb, keto diet would help with the jerks as it seems to help epileptics. Have you tried it?

      • Hi Lee, how long have you had the jerks and how did they come about?

      • 3.5 years now. I was given a Lorazepam to help me sleep one night. I had no sleep issues prior to taking it. L-Theanine (100mg) gives me 4 hours but getting back to sleep is the hardest part. Usually a glass of wine helps. I am currently experimenting with Taurine, Glycine, NAC and Lithium Orotate. I have found Peter Smith to be the most knowledgeable and helpful fellow: http://www.balancingbrainchemistry.co.uk/peter-smith/1/Brain-Chemistry-HOME.html
        If you have any recommendations, please let me know!

      • Hi Lee, that’s pretty much how my night goes. On good nights I get 4hrs straight then very dreamy wakefulness kind of rest with twitches thrown in. I have had luck getting longer sleep with small dosage mirtazapine, but do my best to fight this condition med free which is extremely hard. Many, including myself have tried all the vitamins you mentioned. Some have had some success others not. I personally haven’t had any success with vitamins and have tried so many and used to get them compounded at the chemist.

      • So you got the jerks after just 1 lorazepam?

      • Yes, and I still don’t understand why. I was vegan for 18 months prior at the time and so have been taking B12 for the last 3 months but to no avail.

      • Lee,

        Has anything improved since this started for you? I got my condition from taking a few months worth of clonazepam. It has made my life a living hell. Are you on any other prescription drugs?

      • So I took the Lorazepam, got the myoclonic jerks, then they put me on mitrazapine for 6 months. I came off it and was fine for around 3 months. Then it suddenly came back one night and I still don’t know why. The only things I can think of is I was stressed at the time, I did a liver flush and I also stopped my magnesium. Any ideas why it came back? I could not sleep for 3 days in a row. Its improved since then, but not enough.

      • Lee,

        I thought I responded to your last message but can’t find it anywhere…

        Anyhow, I also took mirtazipine for 6 months following clonazepam. I don’t think it made my issue worse but I’ve read that it can cause this type of condition. How long ago did you take it? Maybe your body is reacting to getting off of it? Also, people can go into withdrawal from things like magnesium too. I have been drug and supplement free for many months and still suffering with this nightmare. Were you on anything else leading up to lorazepam? Its so nuts that one dose did it, but anything seems possible. If you were on an antidepressant its possible the lorazepam was just the icing on the cake to start things up.

      • I’m sure I’ve posted here before about carbs and how it’s affected me. I found eating carbs, especially low glycemic load carbs, through out the day helps lower my anxiety and before bed helps me sleep better. For me, better means less severe/frequent jerks, not normal.

        Lee, if you read this board you’ll find numerous postings from people. If we focus on the “success” stories you’ll see there were many different things that have helped people. Magnesium, breathing techniques, drugs, neurofeedback, time, avoiding certain things, as well as other supplements and natural remedies. I am convinced there are numerous causes for this, hence the different means to success posted.

        I’ve said it before, this board is place of hope. People sharing what worked for them in that maybe it’ll help someone else with this sh*t. Problem I have is that most of this doesn’t work for me. I’ve always ate pretty healthy so supplementation didn’t really help at all. Nor did some of the more, shall we say less traditional suggestions on other things to ingest. Meditation and breathing helps some, I still do it today, but never got rid of the problem. I was hopeful on neurofeedback, but after 8 treatments it had 0 effect on my sleep… perhaps made it worse.

        The one thing neurofeedback DID do for me was help me think clearer. And in doing so I came up with the idea of propping my neck up while in bed (if you want to see why scroll down to one of my MANY postings, I explained it there.). This more than anything is making a difference. I’m still not normal but sleeping better than I had in years.

        In my explanation I had said it’s possible I have a condition called Arnold Chiaki Malformation. I’m being seen by my PCP on Friday to talk to him about it, but I’m staring to doubt that’s what it is. At least in my case. I’m now leaning toward sleep apnea. But all these other things do have an effect on sleep. I’d suggest reading what others posted and see what makes the most sense in your case. Try out different things cause chances are someone on this board may have the answer for you.

      • Simple Carbs increases Setetonin. Try 25 MG Zoloft.

      • Is this helping Mark?

      • It’s possible . Lots of sides I would try 25 only . Low seretonin could be the issue . For some or all . Also try l Argenine precursor for nitric oxide. Read up on the sleep benefits of it .

      • I’ve Been off testosterone 2 yrs got back on 2 months ago sure enough true jerks came back. But I think it exacerbates whatever this is . It’s excited Cns. Neurotransmitters. Try a bit of Zoloft give it 3 weeks

      • Mark, what does the zoloft do to help? Does it stop the jerks?

      • Arnold CHIARI malformation. Stupid auto correct.

        Ha, funny. Just below this post I see a different post I had back in early November. Back then I was convinced my problem stemmed from a cortisol imbalance. I worked hard to correct that, and believe it’s doing better. But it did not fix the problem.

    • Hi kdoc, did your myoclonus actually go away after resetting your hormones?

    • I have good news to tell everyone. My hypnic jerks are down 80% and my doctor cut my dosage of gabapentin from 600mgs a day to just 300 mgs a day. Last year at this time I jerked all night and even felt the electricity go up and down my body. I told a Canadian pharmacist about my problem and he recommended I take wheat germ oil to soothe my nerves and rebuild them. I am allergic to gluten so I had to find gluten free wheat germ oil which is made. I have been on it for about 3 weeks now. Soon I will be off the the gaba. I wish you all the best of luck.

  2. Hi Jen

    There are numerous posts on this board with regards to taking things to help you sleep. Anything from magnesium supplements, to herbs, medication, and others. In addition there are numerous opinions on why we are suffering from these hypnic jerks. I invite you (when you have time) to read the different posts on this board because maybe you’ll read something that will strike a cord with you.

    My current opinion is that this stems from a disruption of the normal cortisol cycles due to stress but also other factors. Stress/anxiety seems to be a common theme among suffers of hypnic jerks. If you read my previous post I put a link for an internet article that sums up what I’m talking about in regards to cortisol and offers advice on how to restore the normal cortisol rhythms.

    I happen to be a health care provider and know that there is no one answer to solve all conditions. Two people can present with very similar problems but have totally different causes of their condition. That’s why I suggest you read the article I posted and see if that makes sense to you. If not, please read what some of the other people have posted as they might have a better suggestion for you as to what to do.

    I have great sympathy for anyone who has this. I myself have been dealing with it for over 15 years. So don’t take this the wrong way, but I feel it’s a mistake to ask “what can I take to help me sleep.”. the correct question should be “what is causing this to happen?”. In understanding what is going on you can effectively correct your problem. Taking something treats a symptom and ignores what is the cause, thus not fixing it. If you slept normal up until 3 months ago something has happened caused this change. What stimulus or stress are you introducing that is causing you to have hypnic jerks? You mentioned you are a mother of 3 and are under stress. To me, it’s very plausible you have a problem with your cortisol cycles caused by stress. You need to restore proper cortisol cycles and better manage your stress. Read the article.

    Good luck

    • Hello, are you on any medication at the moment. Find your article very intetesting.

      • no medication. aside from “self medicating” with alcohol, i’ve never taken any medications for this condition. i’ve found a tiny benefit from taking magnesium coupled with an electrolyte drink. anything else supplemental i’ve taken had little to no effect.

        i currently am taking high doses of omega 3 and multi vitamin for the vitamin C and B. this is NOT to directly help me sleep better but rather to support my adrenal glands, which i believe have been malfunctioning for years.

    • Hi guys, everyone is different but for me the cause of my twitches/jerks are definitely linked to anxiety, SEVERE anxiety. I had a sleep study done recently and only managed to get two hours of sleep. Since I’ve been quietly following this post for a while, I know my results of the study won’t reveal much. Still haven’t received the results though. But out of desperation, I’ve been doing anything and everything to find help. Anyway, life has been so hard to live when sleeping only a few hours every night. I mean a few months ago, I had to hit the snooze button on my alarm clock 2 times to wake up. Sleep used to be my best friend!!! So I’ve been praying desperately to Jesus! My church has been praying relentlessly as well. Just as I was going to go to a treatment center, another option was given to me. I believe an answer to my prayer. It’s not medication, it’s not supplements, it’s not food. Rather, it has more to do with the brain and anxiety. So I had brain mapping done by a neuroscientist. Ive been to three sessions and surprisingly, I’ve been feeling less anxiety during the day and last night I even cut my 25 mg seroquil in half and was still able to sleep and better than the night before. My twitches/jerks felt lighter and fewer. I actually felt more rested the last two nights as well. I’m going to keep trying it out and I’ll check back in about a week or so. If this is the cure, you all will definitely be one of the first to know! Pray that this is the cure. Please seek Jesus for all of us because He is the only one to cure us all! Heal me, LORD, and I will be healed; save me and I will be saved, for you are the one I praise. -Jeremiah 17:14

      • That’s great Jen. I’m nearly convinced that unchecked stress/anxiety is the key to fixing this. If brain mapping works to reduce your anxiety, then keep it up and with time I believe your body will heal.

      • I suffered from hypnic jerks about a year ago and it was one of the worst things I’ve ever been through. I’m happy to say I’m now “cured.” Here’s my story…

        I was going through a stressful time and my anxiety was getting the best of me. I started having panic attacks at random times during the day. Then I started fearing them, so naturally I developed panic disorder and life became a nightmare. I consulted Dr. Google which brought up a myriad of results which freaked me out even more and I became a complete wreck. Then I started having jerks when I was drifting off to sleep. I consulted Dr. Google again (always a mistake). That led me to this website. The stories of people’s suffering didn’t make me feel any better. In fact, this website did more harm to my mental state than any other. I was scared of having jerks forever, getting hooked on addictive prescription drugs, and going crazy.

        I found a Doctor that would prescribe me Klonopin. It helped some, but wasn’t a silver bullet, and left me anxious during the day. I then found another Doctor, whom was much better than the first, that prescribed me Lexapro 10mg. He instructed me to take it every day and take the Klonopin only as needed, with the goal of eventually tapering off the Klonopin. The next few months were hell but I stuck with the plan. Slowly but surely my sleep started to improve, with inevitable setbacks along the way. Then I went to see a sleep doctor the specialized in CBT-I (cognitive behavioral therapy for insomnia). She explained to me that the insomnia and sleep fragmentation were leading to jerks, and the jerks were leading to insomnia and sleep fragmentation. She put me on a sleep restriction plan and it was instantly beneficial. With time my sleep got better and better and the jerks got less and less frequent and intense. I started welcoming the jerks and not fearing them, which of course made them less frequent.

        It took about 4 months on Lexapro and the sleep restriction program to get my sleep habits to a satisfactory level. It may have taken less time but I was also trying to taper off the Klonopin slowly.

        Then I did something silly. I tried to taper off Lexapro, which was fine for a couple of months but then my anxiety and sleep issues started return. My doctor said to go back on it for a while. So here I am. Still on Lexapro 10mg daily, sleeping fine, meditating and enjoying life. I’m not worried about being on Lexapro. It’s a safe drug with minimal side effects (regardless of what Dr. Google tells you). I’ll try to taper off in another year or so.

        I hope someone reads this and gets on the road toward wellness again. My advice is to stay away from the negative forums. Read insomnia success stories. Trust medical professionals. Believe in yourself. You will find peace again and when you do you will be a better person for having gone through this.

  3. Hello again. It’s me, Captain Cortisol. I see that I’m beginning to take over this board so this will be my last post until I have something more to tell you. Hopefully good news.

    I think I finally formulated a solid argument for my theory that our problem is due to a disrupted cortisol cycle. While there can be different reasons for this I believe the primary reason is stress/anxiety. So here it is, please let me know what you think.

    Cortisol, also known as the “stress hormone,” is released by the adrenal glands. It has numerous functions but the one I’m going to highlight is it’s function in the wake/sleep cycle. The normal 24 hour rhythm of cortisol is that it is supposed to peak around 8 am and then slowly diminish through the day until it hits its low 3 AM the following morning. From there it should ramp back up to its high at 8 AM, cycle repeat. The peak level seems to have a stimulatory effect on the brain and body thus waking you up, so obviously you want it high in the morning and low at night.

    It is known that stress and anxiety will have an effect on cortisol levels. Short term stress is usually addressed with adrenal but long term stress is met with increased production of cortisol. If you suffer from long term anxiety/stress your body begins to produce more cortisol. After prolonged period of this you will lose that normal rhythm and fall into random depending on your stress levels. What likely happens is you use up what cortisol you have during the day, due to stress. Then you will likely experience a crash when you are out of cortisol (adrenal fatigue) in the afternoon. From then on your body will work furiously to produce more cortisol which will peak at night when you’re supposed to be at your lowest level thus waking you up.

    As to those horrible jerks and feelings of energy surges, rapid heart beats and other panic type symptoms. I found one article that said the longer your keep over producing cortisol, eventually your adrenal can’t keep up with the demand as they get fatigued. So instead, if you’re out of cortisol your release another hormone from your adrenal glands: adrenaline! This certain makes sense to me as the more tired I am (think low cortisol or adrenal fatigue) the worse my jerks are. Likely because I’m secreting adrenaline now instead of cortisol.

    I’ve also found these other tidbits about increased cortisol levels that would explain some of your other postings on this board:

    1. Cortisol raises the level of free amino acids in the serum. May be why the 5htp is deficient and why the supplementation of it helps
    2. Cortisol acts as a diuretic. There have been posts of increased urination and benefit of supplementing electrolytes and other minerals. This could explain why we are low on these.
    3. Sustained stress resulting in high levels of cortisol reduces serotonin and other brain neurotransmitters (for my garlic munching buddy)
    4. Sustained use of alcohol for prolonged periods of time increases levels of cortisol in the body.

    Last night I decided to have a few drinks and had a horrible night. I’ve mentioned before that I’ve managed these jerks over the years by drinking alcohol. I now believe that even when I’m not drinking alcohol my body was so used to that stimulus of alcohol that it just automatically starts producing cortisol at night. In other words, I’ve created this malfunctioning cortisol rhythm by my drinking, but also I believe by my anxiety issues during the day.

    In conclusion, I believe many of us are suffering from a cortisol rhythm disruption due to stress and anxiety. I believe the only way to fix this is to address our anxiety and find a healthy way to diffuse it. In the article I had posted previously there were suggestions on other things we can do to re-establish the normal cortisol rhythm. If interested please read it.

    Finally, I want to thank all of you. I’ve had this condition for over 15 years and was resigned that it would never get better. Once I found this board I felt motivated for the first time to try and fix this. I’ve always had a supportive family for this condition, but they couldn’t know what I go through every night. What WE go through. Reading your posts and posting myself has been very therapeutic for me. From the bottom of my heart thank you, and hope this helps.

    • Pdoc-

      I agree with most of what you say, and quite honestly, its all very confusing to me even after 18 months of studying the heck out of my condition. I feel like this thing is way more complex than just a dysfunction in cortisol. I have had repeated tests to look at my adrenal hormones and everything was off, but not way off. Oddly, my daytime cortisol is normal and I absolutely cannot take a nap, ever, during the day. Why is that if its a cortisol issue? Well, of course it might be for some- but probably not for me. Like I’ve said before, clonazepam caused this for me. Clonazepam disrupts the natural production of GABA, among other things- a key neurotransmitter for sleep. It it also known to wreak havoc on the entire body, as it has done to me. My heart rate is high, I have neuropathy now, digestive issues and for the last 2 months I’ve had extremely long menstrual cycles. I recently had this checked out and they found a large polyp and also my uterine lining is too thick. What causes that is too much estrogen, which can be a result of low progesterone. So, now I’m thinking that I’ve got low progesterone, other abnormal hormone levels, and neurotransmitters that are all way off balance… With the latter being the cause of all of it. Serotinin, GABA and some other neurotransmitters are responsible for seizure disorders. I feel like my condition is s type of seizure as I see flashing lights at the moment of sleep, I get brain zaps and i feel electric shocks with the jerks. Many times i just get a jerk or an adrenaline rush too- its a mixed bag. It all sucks horribly and would love an answer that makes 100% sense. I’ve come to conclude its too complicated to figure out (otherwise we would all be on cortisol blockers or antidepressants, etc. and living our lives right now). Maybe for some, this boils down to one simple little thing like low serotonin. In those cases, I beleive the symptoms must be so mild that they can be fixed by garlic and whatever else. I highly doubt that this particular person has suffered in the same way as myself and some others on here. I’ve tried tart cherry juice and every supplement under the sun without results. Ugh. Anyway, having a bad day with this shit (only slept 2 hours).

      • Hi Jessica

        So sorry to hear about your condition. At my worst, I was having what I consider full on seizures for 30-60 seconds when i’d wake up. Thankfully that is no more but still plenty of jerks.

        At any rate, not trying to argue with you but your comments made me dig to further justify my theory. So here it goes:

        1. Having normal cortisol levels during the day isn’t the problem. It’s the night time cortisol levels that’s the problem. Though I have no answer why you can’t nap during the day.

        2. High heart rate could be explained by adrenaline. If you’re in adrenal fatigue from over cortisol production your body will release adrenaline instead.

        3. Cortisol stimulates gastric acid secretion. If you’re over producing cortisol I assume you’ll do the same for gastric acid, hence the digestive issues. Plus when cortisol is released, your body is in a state of fight or flight. Not the ideal state to be in to digest food.

        4. I had mentioned cortisol raises free amino acids in the serum. Amino acids are the building blocks of neuro transmitters. If they aren’t readily available your neuro transmitter production will likely be affected. I suspect that could cause or contribute to neuropathy.

        5. The flashing lights you see I find interesting. I found an article that says one of the two groups of cells responsible for producing slow wave sleep is called the ventrolateral preoptic nucleus in the hypothalamus. I wonder with the over excitability of your brain and deficient neuro transmitters if you are getting an excitatory spill over into the optic nerve?

        6. I stated that high protein diets (which I have been on for a long time) increase cortisol production. Well in a study with rats they found not only did high protein diets increase cortisol but also DECREASED GABA. Not sure if it was the high protein diet or increased cortisol that decreased GABA, but once again there is a connection. See article link below:

        http://paleoforwomen.com/protein-cortisol-and-gaba-why-moderating-protein-reduces-anxiety-and-lengthens-life/

        I’m curious if you’d be willing to share why you were put on Clonazepam? Was it for anxiety issues or seizures? Don’t feel pressed to answer if you don’t want.

        Starting the Cortisol experiment next week. Will likely be a month or more to find out if it works. Will be sure to keep you all posted.

      • Kdoc- no I don’t mind sharing (I’ve already aired my laundry all over the Internet with this stuff). My baby was two months old and I had a Normal case of insomnia. Couldn’t drop off to sleep right away between bottles (I had just stopped breastfeeding and my child was also sick, contributing to the problem). Never had anxiety or depression in my life. The sleep actually corrected itself after several weeks and I stopped taking the pills. I restarted it again a few months later when noisy guests in my house were keeping me from falling asleep. I reacted to the clonazepam almost immediately at that point. Stopping and restarting benzos is called “kindling.” Im very senstive to this type of drug and should have never taken it again. I was kindled and i am still paying for it, 14 months after my last dose. I had a neuropsychologist explain benzo damage to me and she confirmed that everything I’ve read online is true. Benzos stop the upregulation of GABA and disrupts serotonin and everything else. For me, I am convinced that this is my primary issue. Perhaps there is a cortisol issue too, but it all started with the brain damage.

      • Interesting information kdoc. I sometimes tend to wonder also whether high protein or eating alot of meat makes things worse. I had over 10 days of minimum jerks and twitches this week (first time in 10months) to the point where I felt like my old self for 10 days after 18months of this torture. I’ve been on a salad diet for dinner and whether it was coincidence seemed to have better sleeps. Last night we went out and I had some lamb which probably had spices on it and had a shocker of a night. My body felt like it was buzzing all night and the twitches on onset were horrendous. 200mg gabapentin later I managed 3 hrs. I also.noticed for the 10 days my tinitus was almost gone, but guess what last night it was back. I didn’t do anything different yesterday during the day. Managing to control.my stress and anxiety these days which has helped. I also still have thr problem with excess wax in both ears every day, It’s like a tap running and no ENT can figure it out other than some fungis in my ear and some drops. Castro issues also the last 2 months which I cannot work out from. It could be withdrawal from some of the meds I’ve stopped who knows. Anyway, keep us updated and hope we can find some relief in the future.

      • Thanks for sharing. So sorry to hear that. You are another victim of the Pharma machine. I believe my problem is self inflicted between the anxiety and drinking. Will let you know if I have any success.

      • Jessica; Has your gyn checked your hormones levels? If your estrogen to progesterone is out of whack, it can cause ongoing insomnia. That’s been my experience anyway, even at times when I was in my 20’s. Estrogen dominance could be the culprit and taking a light dose of HRT for just for a few months can help, and for me it started helping within a month. Just a thought. You’ve been off the clonazepam, etc. for a long time now so maybe it’s no longer the primary cause for your insomnia.

    • Thank you for your post and theory. If you find some way to reset your malfunction to cure the jerks please o please keep us all informed. Want to post that I saw third neurologist yesterday and was informed that clonazepam is the recommended therapy for hypnic myoclonus and idiopathic propriospinal myoclonus. Unless your paraneoplastic blood work shows some immune or other irregularity no other treatments are indicated. 😦 He did say he would do a literature review of this condition when the problem exists only during the sleep wake transition and call me if he finds something that would change his recommended stay on clonazepam.

  4. So begins the experiment. My goal to re-establish proper cortisol cycles begins today. For any of you wanting to give it a go I’m laying out my strategy below. Mind you, this is what I feel is best for me but likely some of the ideas would help you too. Also, I’m saying my goal is to lower cortisol levels and then re-establish it’s normal cycles. If you are of the persuasion that low GABA levels are to blame, whatever you do that lowers cortisol should simultaneously increase GABA levels.

    Diet

    I have been on a high protein, low carb diet for I don’t now how long. I’ve cited previously why this can cause an increase in cortisol levels. Previously I was getting close to 170 g protein a day (1 g from each lb body weight). I’ll now be going for .5 g per pound of body weight, cutting my normal intake by half. I’ve also been not good about eating carbs so will be boosting them considerably. I’m now eating a serving of carbohydrates with each meal (a serving = portion size of my fist). I wish this meant I could be eating candy, cookies, and doughnuts but will be using: sweet potato, potato, oatmeal, brown rice, and quinoa. Fat is also important for lowering cortisol levels so will be included with each meal. Cooking with REAL butter or olive oil and eating nuts will go with me supplementing fish oil (wild talk about under supplementation). Also giving up caffeine and alcohol.

    Try to eat higher carbs and minimize (or eliminate) protein before bed.

    Supplementation

    DISCLAIMER: I am not advising any of you do what I’m doing. Just letting you know what I am trying. To me this level of supplementation is meant to be temporary. I kinda view my condition as a car rolling down a hill and heading off the road. The supplements therefore are like adjusting the steering wheel, so that once I’m headed in the right direction I won’t have need to touch the wheel again. Also, nothing here is meant to be “taken” specifically to help me sleep. Rather, I’m using this to fix what I believe is out of control cortisol secretion. Once that is fixed, I’ll sleep better (or so I hope.)

    Rationale for this has been cited earlier so if curious look at old postings. I am taking high levels of fish oil (Omega 3), B vitamins, and vitamin C. All of those have been found to help lower cortisol and raise GABA. I’m leery to give specific dosages so will suggest you read some of the previous articles I posted for recommendations. But my timing of taking these is important. I take about 1/3 of the dosage first in the morning but then 2/3 right before bed. I think this makes sense as we are trying to decrease cortisol at the end of the day and increase GABA as is the natural rhythm of things.

    I’m still having trouble with my anxiety so for now am also using an herbal supplement 3 x day. I choose it for Valerian root but it also has other natural sedating things in it. Feel free to add or not if you think you need it.

    Anxiety/Stress

    This will perhaps be the hardest thing for me to fix. I realize that I have an almost Pavlovian stress response to daily things. Anything from going into work, being at work, coming home from work, putting the kids to bed, etc. I’m hoping the above mentioned strategies will help lower my overall anxiety level. But clearly I need to work on retraining my response to daily stressors. I’ve been using the Buteyko breathing method along with Prana breath methods and that seems to help. But also working on mindfulness to identify when I’m getting stressed because I think I’m so used to it I don’t realize it’s happening.

    This is Step 1. I’m trying to corral an out of control cortisol system. I personally feel like my adrenals pump out cortisol til they are out, produce more and then start cranking it out again. Sort of like someone sprinting til they can’t anymore, resting til then can go and start sprinting again. At least that’s how I feel.

    If Step 1 works, and I think it should in 1-2 weeks, Step 2 will be trying to set cortisol rhythms back to normal. I will let you know in a week how it’s working. Good luck all.

    • Kdoc-

      It sounds like a good experiment to try out. I do recall you mentioning in another post that you drink alcohol and you think it may or may not contribute to your jerks. Please consider the fact that some people have gotten this condition from alcohol. It is similar to benzos in a way as it hushes down GABA as well. I do not personally consider it the same type of monster that benzos can be (I used to drink in moderation with zero side effects), but we are all unique in our sensitivities. It could possibly be the reason your cortisol is wonky, if that is your issue. Perhaps you may want to cut the alcohol out too?

      • Hi Jessica. I agree with you. I think I mentioned I was giving up alcohol and caffeine but it was in probably hard to follow everything I was saying.

        Soon after discovering this blog over the summer I decided to make some changes and went 4 weeks sober for the first time in 15 years. At first my jerks became MUCH worse. I suspect it was because my cortisol out of whack and now no more sedating effect of alcohol. But slowly over 3 weeks I improved to the point where I had 2 nights where there were almost no jerks! I was thrilled! But then I had some life stressors get the best of me and the jerks came back. After a week of jumping around in bed again I became depressed and went back to drinking.

        I know all this because I’ve been keeping sleep logs for a while. What I hope I missed is the other dietary and anxiety things I mentioned. Combined with sobriety I think I should get there faster.

        But you are right. Everything I’ve read is that alcohol use increases cortisol. Cortisol and GABA seem to have an inverse relationship so I see your point.

      • Kdoc-

        Well, on the bright side, recovery from alcohol use is in no way as horrible and as long as recovery “can” be from benzodiazepines! But I would assume that with both, you can expect some waves of symptoms that will get discouraging. I am suffering from horrible waves of symptoms that get much worse around my menstrual cycle (when progesterone is low). This comes after 10 months of solid hell: every night was a living nightmare! It wasn’t until the 11th month that I would have some better days (but never normal yet!). It is so easy to feel defeated when things get worse… But I’ve been in touch with several people who healed from this garbage after taking benzos. In my case, it will likely take me 2-3 years off the drug to feel much better as this has been the average for people like me. You are so very lucky you didn’t get sucked down the benzo path like so many… Especially if you are possibly sensitive to gabaergic substances like alcohol. And just an FYI (really not meant to scare you… Just a precaution): valerian root and ashweghanda are a few herbs that have gabaergic properties to them and should be avoided during “benzo” recovery. Not sure if they might hinder recovery from alcohol, but I would assume so. I know a lady who was hit horribly with this condition after taking ashweghanda. That particular one is a huge no-no as its considered the strongest Ayurvedic out there that has caused many problems. It really should be taken off the shelves!

      • Hi, finding both your comments extremely useful so thank you for posting them. I love that they are practical as well as hopeful.

        I have had this condition since April and it began from getting little sleep for 2 weeks when working abroad. I had a great job but was feeling over stressed when I went away. Usually I take some zopliclone with me for nights I can’t sleep (room tend to be noisey and uncomfortable when I work abroad). The last day these jerks started and I didn’t think much of them at first. Bsck home they didn’t stop and anxiety set in.

        Extremely long story cut short, I am taking Keppra which has helped but not enough. I am going to switch to Epilim or Gabapentin. I started clonazepam in June, went to 1.5mg but now I take 0.375 – 0.225mg which at the moment gives me 6-7hours. I get jerks before I knock out and in the morning. Once I am awake then there is no going back.

        When I have a drink I don’t take clonzepam and still get rest. In fact usually I fall asleep quicker after 2-3 glasses of wine. Doesn’t make me feel great the next day though. I can report I have had no withdrawal symptons yet from clonzepam when I don’t take it or when I lower it. I do get bad nights though when I have upp’d it.

        My dream is to go on an epilepsy drug that manages them and I can use clonzepam as and when needed until….pray to god….the jerks heal. I am taking lots of supplements to enhance GABA, this has helped me massively in terms of anxiety….but not much on the jerks…still early days though.

        I have formed depression from all this and I am waiting to see an epilepsy specialist to see what I can take. I have lost a lot from this illness and like many treated like I was delusional for 5 months before I sort private help just to get the ball rolling. I am actually sueing my doctors for what they did.

        Things are a lot better now but I am worried what the future holds. Or I try not to worry to help. I have to say clonzepam has helped me a lot but I know it’s dangers. Think I am lucky at the moment I don’t feel any major effects from it.

        Thank you all for posting with tips etc. Ang successes please post. I would like to hear of more success stories for hope. I have only heard of one.

      • Hi steph-

        I’m sorry you are another victim of these damn jerks! It truly feels like a prison sentence.

        Did you say that you took zoplicone leading up to your jerks? Have you considered that they caused your symptoms? A lot of people are unaware of this, but zoplicone is a z-drug which acts in a very similar way to benzodiazepines. They are referred to as a “baby-benzo” as the side effects from them almost mirror those of benzos. If you ever visit benzobuddies.org, you will find that many people are on there from tsking a z-drug, not a benzo.

        I have met several people who are completely or mostly healed from this condition. Most of them were on benzos. There have been a few who treated themselves for either metal toxicity or cipro use.

      • Hi Jessica

        Thanks for the heads up on Valerian root, I had not heard that before.

        Been reading more about Benzos since talking with you and it sounds horrible. As you said, they should pull this stuff off the shelves.

      • Hi Jessica,

        I only used to take zopliclone when I was away and couldn’t sleep. This time I forgot to take any and these jerks started! I only worked away twice a year and would take about 3 tablets over the course of one contract, I would often sleep better after a night on zopliclone. So to throw a spanner in the works I think not having those with me led me to be sleep deprived and then this happened!

        I have stayed away from benzo buddies so I don’t get too upset regarding needing clonazepam. It has helped me a lot. Like I said the dream is to wean off this as my body heals but at the moment I feel I need it. Its interesting to see how different we are in circumstances but we have this bizarre illness.

        It is good to hear people are healing from this. It really is like a prison sentance.

      • Steph-

        Well, it seems clear that you know it wasn’t the zoplicone. At least you can rule out drugs causing this for you and focus on what else it could be!

      • Indeed take care and hope you heal soon.

  5. Do you guys have subtle twitching during the day?

    • The first 15 months yes. Things settle with time. How long have you had the jerks Jen?

      • I’ve had this for so long I can’t remember for sure, but I would say no. Rather I notice a kind of shaky feeling in my arms at times. I’m of the belief that is due to adrenaline being released instead of cortisol due to constant stress/anxiety. I imagine twitching could be a side effect of some of the drugs you mentioned you were on (that is if you are the same Jen that posted earlier.)

      • I’ve had the jerks REALLY bad but they are getting fewer and lighter now. I’ve had them since three or four months ago. I had them so bad that I got no sleep twice and then two hrs a night otherwise. Recently I started receiving treatment from a neuroscientist who did a brain map on me and determined i had a ton of anxiety and insomnia so then he started his treatment on me me for those problems . I’ve seen this dr 5 times since Thursday last week and I’m noticing remarkable changes!!! I got off both Zoloft and seroquil (used for stress and sleep) and last night I only had three twitches total! ( I’ve had countless before) But I fell asleep on my own from 9-12 pm. Woke up tossed and turned so I took melatonin triptothan and fell asleep at 2 and woke at 5am. I think this might be my cure and I have to thank God for this!!! We prayed so hard for wisdom and answers to my twitching problem and He provided this. It’s been working. I’m going to treatment this am. The reason I asked if you guys twitch in the day is bc I used to twitch in the day too and now not so much. I think the treatment is calming my whole body down. Praise God! I think the adrenaline is finally starting to subside. What state and city do u guys live in? My scientist is in LA, ca.

      • What is the treatment ?

      • Jen,
        Is your treatment like neurofeedback? I did 4 sessions of it when I first came off clonazepam. One session made my legs jump around like crazy.

        I used to twitch really bad during the day. It gradually calmed down and now I just get some random ones here and there when sitting. I would say it went from a 10 to a 3… But the dang jolts at night have picked back up and now I’m really suffering again. None of this crap makes any sense. 14 months off clonazepam and my body feels like it will eventually fall apart and die at this rate. My heart has been having pains so I’m wearing a heart Monitor for 2 weeks. Does anyone get pains in their heart?

      • Yes it’s neurofeedback. Jessica, did you stop at 4 sessions? If not, how many sessions did you have?

      • I had 4. It makes sense that its helping you. Your brain didn’t get damaged by meds. Seems that nothing can help drug-induced damage except time away from the drug. Just sucks as I was so very hopeful that the treatment would help. It really just made me feel worse like everything else has.

      • Jessica I had 7 sessions so far. If you were able to get off Klonopin with neurofeedback, that’s great! With neurofeedback, you have to keep going to cement it into your brain. I was told a minimum of 3 months is necessary. I learned that neurofeedback is like going to the gym, it takes time to build a muscle. Likewise, it takes time to build new pathways in your brain. My brain waves were totally off and they are being retrained to the proper wavelength. What city are you in? I could recommend my guy. I discovered it’s important that an experienced expert is overseeing your treatment as if done wrong, it could really set you back as well. On the drive back from neurofeedback, I was able to take a 30 minute nap . This was unheard of before neurofeedback. I would have been super twitch/adrenaline woken otherwise. I just thank God for such a miracle!!! Please don’t get upset but I think it could help you if you see an expert. I’ll keep you in my prayers bc I know those twitches are horrible. God bless you!

      • Wow. It sounds like you’ve had an amazing experience with it. I was already about 1 month off clonazepam when I started treatment. I’m in Montana and there are limited providers here. Oddly, these types of treatments don’t seem to work on people in benzo wd. I have heard of it working for people in opioid wd though. My provider said that i would probably notice some improvement after 1-3 treatments. I don’t get it. This is the most frustrating thing to go through this for so long and have nothing help. Man people also find at least some relief with magnesium and other supplements and they only make me feel worse.

  6. Hello all. Captain Cortisol here giving you an update from my previously mentioned experiment to lower cortisol levels. It’s been about a week and while I’d love to say I’m cured that is not the case. It has been an interesting week though.

    In addition to the steps I’m taking to lower cortisol (see previous post) I’ve also been using a pulse oximeter to track pulse and O2 levels through out the day in attempt to quantify my anxiety levels. My o2 levels tend to stay in the 95-98 range but there’s a definite connection between increased pulse and anxiety levels (which I associate with higher cortisol or adrenaline levels).

    So the week started with varying levels of anxiety/high pulse levels through out the day. As I became more aware of the high anxiety levels I was able to help reduce or control them. I didn’t mind if my pulse was high or if I was jazzed in the morning as cortisol levels are supposed to be higher then but wanted to keep pulse rates lower at the end of the day especially before bed. By the end of the week I had better control over my anxiety and found it that things that would normally cause me that anxious feeling didn’t as much. So this is good. But by the end of the week I noticed another phenomenon that I’ve had plenty of times before. So I wanted to run this by you guys:

    Wednesday I felt tired around 3 pm and was able to lay down for about 15 minutes. Then Thursday around 11 am I felt tired and by noon was exhausted but couldn’t lay down for a nap. So I was exhausted all day til I went to bed around 8 pm and slept like sh*t that night.

    Now here’s my thought. Most of you will probably say you feel tired during the day and rightly so as we don’t sleep like normal people. I always attributed my tiredness during the day to the bad night sleep. But here’s the thing, I slept fairly good Tuesday night and Wednesday night yet felt tired Wednesday and exhausted Thursday. I’ve noticed before that on nights I sleep “good” I am really tired the next day. So, in line with my cortisol argument, maybe the tiredness is because we’ve hit adrenal fatigue and are out of cortisol/adrenaline that has been keeping us going rather than just having a bad night sleep. See, I believe that perhaps our cortisol secretion is so screwed up that we’re running on it like gasoline all day instead of secreting it just in stressful situations. I recently found an article that talked about some people may have a hyperactive corticotropin-releasing factor (results in cortisol) either due to genetics or stressful conditions. If this gets switched on and not turned off it will eventually result in fatigue where our cortisol levels are empty. That would give you a “good” night sleep as it wouldn’t be waking you up as much (or perhaps a bad night if you’re body switched to using adrenaline as cortisol is gone) but you’d be exhausted the next day as your body is still running low on cortisol. Hope this makes sense.

    So my question to you is: do any of you have days or cycles like this? Where you’ll sleep good but then feel really tired the next day? I would also bet you have days where you are tired all day (low cortisol) but then sleep bad that night (body finally produced more cortisol so is cranking it back out).

    On a positive note, I did sleep better this week. Also feel my anxiety levels are lower and better under control. Hopefully next week will be even better.

    • Yes I have this sometimes . What is the solution ? I can tell you 100. Percent sure testosterone therapy causes them for me . Ones I doubt anyone here has had . That bad . Meaning hormones play a part .

      • Thanks Mark. Not sure how testosterone plays in yet, but will look into it. I believe the solution is to restore proper cortisol cycles/rhythm.

      • Hi kdoc, have you had any luck taking a nap? It’s 18months for me and no luck with a nap. I’m having some ok nights finnally, but no nap. I heard it does take time for the brain to heal. Watching what I eat late helps a little,as do breathing techniques.

        Mark, yours seems to be an easy fix right? Don’t take or do anything that brings them on. I wish I could find out what brought mine on out of the blue, when I had no stress I’m my life.

      • Well from what I’ve found testosterone should reduce cortisol if anything. However, high cortisol levels could have been the reason for your low testosterone to begin with as cortisol will reduce testosterone. I wonder if you were under high stress prior to your testosterone levels being low?

      • Hi Ck

        My naps almost always end with me jerking awake, though I think I get some sleep. I’m usually only down 10-15 minutes but may jerk awake 1-5 times. It is odd. But there are days where I don’t need a nap, days I will choose to take one, and days I have to take one. I never questioned that until just recently, hence my previous post.

        I’ve done a good bit of research on all of this. I know alcohol can have an effect on all this (both from research and personal experience) but my problem predates my drinking problem. I can remember being back in high school being so tired from not sleeping I’d be falling asleep in the shower before school. The only thing that spans the gap is the anxiety problem. So that’s why I am trying to prove it is a cortisol cycle disruption. Because if it is, then I can fix it.

        But I am sleeping better too. My jerks are more mild. They don’t wake me up totally and I seem to be able to go back to sleep easier. I meant to write you back earlier about the protein post. Since cutting back on my protein my anxiety levels seem to be better. And I agree with you about taking time to heal. I mean, geez, I’ve been dealing with this over 15 years. In a way, I view this whole thing as a bad habit. How long does it take to break a bad habit? It’s not just reducing cortisol levels. It’s not just re-establishing proper cortisol cycles. It’s also breaking the anxiety/stress responses to daily living, re-doing my diet and letting my body acclimate to it, giving my body the proper stimuli at the beginning/end of the day. And once I do all that, STAY THE COURSE. Tall order but worth it if I can sleep like a normal person.

  7. My cure: Neurofeedback from an experienced expert 🙂

    I’ve had the jerks REALLY bad but they are practically gone now. I’ve had them for three or four months now. I tried everything but nothing worked except neurofeedback. I had twitches, jerks, adrenaline rushes so bad that two hours of sleep was considered normal for me. Recently I started receiving neurofeedback treatment from a neuroscientist, Dr. Andrew Hill, in Ca. I went from two hours of sleep to six hours of sleep. I am no longer on Zoloft and seroquil (used for stress and sleep) I thank God for this!!! We prayed so hard for wisdom and answers to my jerk problem and He answered. Praise God! i know everybody is different but for those of you who are desperate as I was, please give it a try for three months for your own sake.

  8. learn about Neurofeedback

  9. If u go to my guy, please tell him I recommended you. 🙂

  10. Saw a neurofeedback specialist today for my first visit. We did the brain mapping and found some definite imbalances. What was interesting was while she was putting the electrodes on my head she noticed the scars on my head and face from numerous head injuries. My sleep problems date back to when I was quite young. Though I don’t remember it I was told I used to sleep walk as a young child. I do remember having issues to not being able to get to sleep in my adolescent years and high school years before the jerks started in high school. Anyways, I digress. My first head injury was when I was either 2 or 3 and then had numerous injuries after that mainly from sports (football and boxing), at least 2 ended with concussions. My therapist feels that all this may stem from that first head injury and been made worse with the subsequent injuries. What also was interesting was the mapping showed a lot of disturbance at the left front of my brain, which is wear I hit my head at age 2-3 (I know because there is a slight dent in my forehead… don’t I sound like a handsome fella?).

    Time will tell of course but I found this very interesting. I wonder if anyone else out there has history of head trauma? Could also be from a car accident/whiplash.

    • My twitches have started coming back 😦 Kdoc. How is neurofeedback working for u? I still think neurofeedback can help but just went on the wrong direction

      • I have not had a session beyond the brain mapping one yet. This upcoming Tuesday will be my first treatment session. I’ve read it can take 10-40 treatments so am not expecting any earth shattering changes this week.

        Sorry to hear the twitches are coming back. The fact that the neurofeedback helped makes me think you are on right track but maybe you are missing some other pieces of the puzzle? I still say unchecked stress/anxiety is partly to blame for this. Possibly some nutritional deficiencies?

        I was very intrigued how the neurofeedback therapist I saw immediately honed in on the head traumas I’ve had as to why my brain is out of balance. And it makes sense, so I am hoping the therapy will help. But I was also making progress with the steps I have been taking (mentioned in previous posts).

        I have been doing my cortisol correction experiment for about 2 weeks now. What is interesting is the first week I noticed a gradual change toward sleeping better. However this second week has been worse than the first and there have been no changes in my approach. While this originally would be cause for concern I’m actually viewing it as further progress. While the jerks seem to be getting worse I’m experiencing things I haven’t felt for awhile. Specifically I’m feeling more awake at night where as I’d usually be in a half awake/half sleep state most of the night while I’m jerking around. So I am viewing this as I’m back tracking through time, experiencing the progression of my hypnic jerks backwards. My hope is that eventually I’ll get back to the point where I was not having sleep problems. Sort of like untying a big knot, you have go through all the knots until you get to the original one.

        Not sure if I’m making sense, but perhaps you’re not getting worse but just backtracking. I’d say stay the course and perhaps consider your stress needs to be addressed in a healthy way.

        Will keep you posted how my sessions go.

      • Kdoc what city state are u in?

        Mine is anxiety . I have general anxiety disorder where I experience anxiety in my stomach 24/7. I’m not on meds but it’s tough. Please keep me posted as I will also keep u posted. How old are u, if u don’t mind me asking?

      • Hi Jen

        I am in Pennsylvania and in my mid 30s.

        I have made numerous posts with regards to how anxiety can affect cortisol levels and the steps I am taking to help correct this. I suggest you read them as so far I am seeing positive results with the steps I am taking. Not just with sleep better but also with less daily anxiety.

        Anxiety is a difficult beast to slay. In my case, I think developed bad habits where I immediately default to stress response in reaction to daily events. I’m realizing that in most cases I’m over reacting to such daily events and am working on not stressing out so much. It helps that the other steps I mentioned seem to be lowering my overall stress levels. But I’ve got a long way to go as I’ve been doing this bad behavior for years.

        Anyways, I believe you’re on to something with the neurofeedback. I had not thought of that so I thank you for bringing it to my attention. I believe in combination with my other steps I’m going to get rid of these jerks some day.

        Hang in there, keep thinking positive, and again, read my previous posts. May have something in there to help you.

      • Kdoc,
        Thanks for your words of encouragement. At times, I’ve gotten so sad I didn’t know what to do or how to handle life this way. That’s why when I tried neurofeedback and had 90% of my anxiety instantly shut off I was amazed. However I was told most people don’t have such a quick response. Sadly, my treatment has gone haywire and I must keep seeking the perfect neurofeedback protocol. Thanks for the cortisol info, I’ll look into it. I’ll keep u posted and please keep me updated as well. Take care for now!

      • Sorry to hear this Jen, I have just booked to do this in the UK from reading your post. Thought it was the answer. I hope its just a little glitch and you start recovering again.

  11. Hello i am here again spreading buteyko propaganda.

    I think a lot of you have the misconception that buteyko is some sort of yogi training.

    It is not.

    The therapy is starting to emerge as a succesfull treatment for sleep apnea, sinus problems, epilepsy, and anxiety disorderd.

    Please read in on the papers of Claude Lum on the importance of Carbon dioxide in the organism.

    I have seen great improvememts since practicing.

  12. Hey B2, glad to hear you are improving. You’ve heard the expression that “there are more than one way to skin a cat”? Well I believe this saying applies here.

    I am finding success in a different way. I had tried Buteyko and noticed I felt different during my first session. I’m sure it’s doing something but will admit I have not stuck with it, mainly due to having trouble fitting the sessions into my variable schedule. Instead, I’ve been making progress mainly through dietary changes.

    I have mentioned previously I was on a low carb diet, high protein diet for no other reason than I preferred that way of eating. In doing research I found high protein, low carbs can lead to increase cortisol levels. So I halved my protein and started eating more (good) carbs. In the first week of doing so I started to sleep better. In my second week though my sleep regressed some. Initially I attributed that to a fluctuation in the process to getting better. But then I realized it corresponded more to what types of carbs I was eating and how close I ate to bed time.

    What I found was not eating close enough to bed and/or eating high glycemic carbs before bed resulted in a bad night. Eating good carbs right before bed made sleep better. I’m thinking there is a connection between blood sugar levels and all of this. I found this on a natural doctor’s site:

    “Avoid nocturnal hypoglycemia. In my clinical experience I have found nocturnal hypoglycemia (low nighttime blood glucose level) is an important cause of sleep-maintenance insomnia. When there is a drop in the blood glucose level, it causes the release of hormones that regulate glucose levels, such as adrenaline, glucagon, cortisol, and growth hormone. These compounds stimulate the brain. They are a natural signal that it is time to eat.”

    So the last few nights I made sure to eat carbs within a 30-60 minutes before bed. And while it’s not perfect, I definitely slept better. I bought a FitBit to track my sleep at night and on average I have 30-40 disturbances per night. Last night was only 17! I also felt I slept better.

    I am now making it a point to eat good carbs through out the day to try and keep my blood sugar level and we’ll see what that does. Now, I’m not saying this is the be all to end all for this. Just saying it may help some of you.

    Simple experiment for those that are game. Within an hour before bed, eat a fairly decent portion of good quality, LOW GLYCEMIC LOAD carbs before bed. See if you notice a difference.

    To give you an example: beans, lentils, fiber rich fruit, whole wheat toast is ideal. Bad would be candy or white bread/pasta. Just google low glycemic load foods for a list of good and bad.

    Let me know if you have any success!

    • Serotonin also plays a role in blood sugar levels. https://www.psychologytoday.com/blog/evolutionary-psychiatry/201105/sunlight-sugar-and-serotonin
      When blood sugar goes too high, it subsequently causes a sudden drop in blood sugar later. Simple carbs are known to cause this reaction.

      • Another article explaining how serotonin levels affect blood sugar.
        journals.plos.org/plosbiology/article?id=10.13171/journal.pbio.1000227
        It appears that being deficient in serotonin, which can be caused by a lack of sunlight or a lack of eating complex carbs, among other things, can cause blood sugar instability. Lack of serotonin could be the cause of diabetes, which is a disease known to cause lots of fluctuations in blood sugar i.e. lots of highs and lows.

      • journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.1000227
        This is the same article from my above post.

      • Sorry guys! Not sure why the article keeps coming up with that big space in it. If you type it into a search browser it will work.

      • Good point Anonymous. It seems many of the positive steps we can take will elevate serotonin and GABA while reducing cortisol and other stress hormones. They are clearly connected. I also found a connection between low carb diet and lower testosterone levels for the fella who made a comment about testosterone.

        Hopefully now that I’m correcting my diet and adding more good carbs my serotonin levels will come back up and cortisol will set back its normal rhythm. Though I’m sleeping better I’m having the problem of waking up around 2-3 AM and being awake. It’s not the jerks but just I’m awake. I would rather that time be 5-6 AM but lately that’s when my body has been waking me up.

        Will keep on trying. Had my first neurofeedback session Tuesday and it went well. Heading in the right direction at least.

  13. Hey Jen

    how’s it been going with the neurofeedback treatments? I know you had a set back, but doing any better now?

    I’ve had my second treatment this week. My therapist said there will periods of improvement followed by setbacks during the course of care. Appropriately enough since my last treatment I’ve been sleeping worse. In fact last night was the worst night I’ve had since I’ve been monitoring my sleep with the FitBit: registered 47 times awake/restless and 99 minutes awake. BAD night.

    Trying not to get discouraged as I was doing better prior to the Thanksgiving holiday. Since, it’s not been as good and especially the past two nights have been rough. I think some of it is due to this time of year, a lot of stimulation and excitement.

    Hope you (and everyone else) is doing better.

    • Hi Kdoc,

      Just jumping in on this. So I am having neurofeedback currently. Practically each day and it will be my 7th session today. The results have been brilliant and I came off clonazepam no problem after the 5th.

      I had 2 days of stress and no treatment this weekend and last night was absolutely awful. Like the worst I have ever had. I took clonazepam again….a bigger dose than usual and managed 4 hours.

      My therapists haven’t said much about set backs but lets see. I am due to finish my treatment before christmas so fingerd crossed. Im trying to stay positive but last night did shock me. Its never nice to take a step back but mayhe this needs to happen.

      Oh also, my brain scan showed an overactive motor cortex which may be causing the trouble. Plus I had rapid eye movement. Lyme’s disease was mentioned as a possibility.

      • Sorry to hear about the relapse Penny. This condition is so damn confusing. I’ve had numerous times over the years where I’ll make an intervention, sleep better, and assume I’m fixing the problem. But then I sleep badly again and whatever I was doing that seemed to help no longer seems to be helping. The good times and bad times almost seem to cycle, but I can’t really put my finger on the set time of it. Ugghhh…

        I do think the neurofeedback will help. I’ve noticed after just 2 treatments my short term memory is improving and I’m not stressing quite as bad. Small changes, like 10% improvement max. I’ve only been able to do 1 treatment a week so far but next week will be doing 2 per week through the end of the month. Hopefully I’ll have some good news by beginning of next year.

        Good luck to you (and to you all).

      • Hi Jen,

        Gosh sorry to hear that and yes I seem to have cycles when I try stuff but I am very optimistic still about neurofeedback. I think it will just take a while sadly. This illness seems to be deep rooter. I am seeing the main therapist for a review tonight so will see what he says. He says he has treated many people with myoclonus. He also has studied meditaion and said he used to get brain zaps ( there is a medical name for this but can’t remember!). I have faith in this but its weird, I went bed last night and the titches were very minor. I just day dreamed and ignored then the pow!! Full body movements etc. Like my brain was annoyed I was paying attention. After that I needed a good dose of clonazepam when I have only needed a tiny bit (0.25mg). I do think this will take time for sure.

        I do get anxiety but as a result of this not anything else.

      • Hi All,

        So had 2 more session of neurofeedback and my jerks are still bad. Just had some clonazepam to calm them.

        My neurofeedback therapist said im doing really well with the training and relapses can happen but it feels worse. My mood and anxiety throughout the day. I’m tired and ready for bed and then they happen big time again. So strange.

        I was told if there is infection or toxicity in my brain I will keep getting them. Got another one tomorrow and will ask for more time to chat. I went and put myself under pressure at the weekend which was silly.

        I’m praying that I am just resisting this treatment and eventually the pattern will break. I am going to ask the doctors tomorrow for a Lyme’s disease test.

        Fingers crossed I get some sleep tonight and can try again tomorrow. Im up to 1mg these past three nights. Like I said I was only taking 0.25mg

        Will update you.

        Oh also im taking supplements to promote GABA. It does feel some helps then disappoints you.

      • I know what you mean Penny. Stress, certain foods make mine worse. I went a few weeks without them and bam last night worse night. It’s the craziest condition one could have.

      • It is wearing me down big time and costing me so much money.

      • Hey Penny,

        Make sure you research Lyme disease test as the one they typically do is not very accurate unless you were just recently bit. I forget which is the better test but again, look it up before going and maybe ask for the more sensitive test.

        I said this before but I found that my tiredness during the day and sleep improved when I started eating more low glycemic load carbs. Have you given that try yet? I’m eating A LOT more than I used to, I’m surprised how much I’m eating. But I’m not putting on weight. I’m about 5’10” and 170 lb. so not a big guy. But I’m putting down much more food, especially carbs (fruit, rice, pasta, whole wheat bread) with every meal and for snacks. I find when I start feeling stressed or tired, if I eat good quality carbs the feeling goes away. And no, I don’t think it’s stress eating. I think it’s low blood sugar. Try to stay away from sugar or things that will crash you blood sugar (sodas, sweets, etc).

        I also found that eating a big plate of pasta before bed helps me sleep better. Pasta is not a low glycemic load, it’s actually high (22 I think) but it helps me sleep better than when I was eating lower glycemic load stuff like bread or beans. But the beans, whole wheat bread, fruit, vegetables during the day help me feel better.

        Give it a try if you haven’t, it may help you.

    • Hi ,

      Well I had 17 sessions and I was able to wean off of my medication BUT I still reach for Benadryl every night to sleep. I tried neurofeedback and it activated my anxiety so I stopped and tried a different provider who performs Lens neurofeedback. I had two sessions and that too activated anxiety so now I’m back to square one. There were nights where neurofeedback helped and the twitches were less but they came back. I have such bad general anxiety disorder that I can barely function in life . Do u guys have anxiety???? Or only sleep problems??

      • Kdoc,
        What kind of protocol is the neurofeedback specialist doing on you? Do u know

      • Hi Jen

        I’m not sure what the protocol is that my therapist is using. The first session she had me watch a computer screen and I guess when my brain did what it was supposed to it was rewarded by a picture appearing or something moving along the screen. The second session I wore these glasses and closed my eyes while something was done to me. She said it was a deeper cortical stimulation or something. I definitely felt something while I was doing the 2nd treatment, by the end my brain almost felt fatigued.

        My therapist had said she wants to do one of each (computer screen and glasses) per week but so far I’ve only been able to get in once per week.

        Yes, I’ve had issues with anxiety for years. It’s much better under control now than when I was in high school or college. But just today I’ve had an anxious feeling all morning that I couldn’t seem to shake. Previously I posted extensively on anxiety and how I think it affects us (cortisol and stress hormones elevate, GABA/serotonin decrease). One thing that I found has helped recently is making sure my blood sugar levels aren’t spiking/dropping. I’ve been making it a point to eat low glycemic load carbs throughout the day and then right before bed. This seems to help with my anxiety levels and sleep better. You might give that a try.

      • Hi Kdoc,

        How is the neurofeedback going?

      • Hey Penny

        I think I’m doing good with neurofeedback but can’t say it’s making a difference with my sleep. If anything I think it’s helping me to think more clearly, remember better, and have less daily anxiety. But no noticeable change in how I’m sleeping after 3 treatments.

        How ’bout you?

      • Exactly the same. Anxiety, thinking clearly but my sleep is worse if anything. Its weird, I don’t know if its working or not. Like sleep will be the last piece of the puzzle. Again my neurotherapist thinks I am doing great but is a bit baffled by the sleep. He said recovery is never linear. I have had a few sessions now so was expecting more change but then I have had this for 8 months so it must be hard wired in and take time to unstuck itself.

        Oh answering your other message….been following tjat advice too.

      • Sorry I should say anxiety has lessoned. Its 2.49am. Ive had clonazepam but still some jerks and now not tired at all.

      • Penny, do you get the adrenaline rushes that keep you up? It’s so annoying when you have fallen asleep and eventually give up from. The Jerks.

      • CK I get a mix of them. Adrenaline rushes which have virtually disappeared from neuro feedback. Now its just myoclonus or I get weird sudden visualisations like I drop a cup and my arm jerks as if its reaching it. Weird. That wakes me up though.

        I’m having the day off work today as im beat. I wish even weed worked.

      • Yep, I get the visual ones still. They are so frustrating when they happen over and over. They aren’t as frequent as the first 15 months bug do come and go. Will be trying the apple cider before bed tonight.

      • Let me know how it goes with the apple cider guys. Yes the visual jerks are crackers, I see all sorts to make me jump. Sometimes awful flash backs.

        Good luck tonight.

  14. Hi
    I’d like to give some hope to all hypnic jerk sufferers .
    I’m getting better ever since I began adding APPLE CIDER VINEGAR to my diet.
    Before that I was also getting better with P-5-P (50 mg) (Active coenzyme form of B6) and also catnip (organic). The latter I take only whenever I have some jerks (which is rarely now, thank God!). Both are natural, one is a vitamin, the other is an herb. So no harm in trying. People talk a lot about magnesium, but for me it did nothing .
    The apple cider vinegar is what is helping me the most. As you can see in this link, http://www.rd.com/health/wellness/apple-cider-vinegar-benefits/ it cures hiccups. And what are hiccups, if not myoclonus ? Hypnic jerks are just another type of the problem, but myoclonus, nonetheless. So, if apple cider vinegar can cure one of them, it can cure the other.
    I take it the following way : I put half a liter (16 oz) of organic apple cider vinegar and then add another 16 oz of drinking water in a jar and leave it in the fridge. I also add some honey to the mixture (it’s just to make it taste better). Then I drink about 100 ml (0,33 oz) twice a day, with some water, one of them just before going to sleep.
    Ever since I began doing that I’ve rarely experienced any jerks. If they do happen then it’s because I may have ingested something that caused them, like some medicine. For example, one night I had them because of the dentist’s anesthesia. But even on that occasion, they weren’t very severe and passed after taking the catnip and more of the P-5-P.
    All the suggestions above are entirely natural, so please, give it a try. I hope you will get better, like I did.

    • Ariane-

      Thanks for the suggestions. Do you know how yours started? How long did you have them? Mine came from taking clonazepam. When you used to get them, did you ever have an adrenaline type rush with the jerks? Like something just shocked your heart awake and gives you instant anxiety, just following the jerk? Some people have this along with the jerks and others just have a muscle jerk. I think mine have a lot to do with an imbalance from the brain that is making my adrenaline skyrocket when at rest. My heart also beats wildly 24/7 so that is why I assume that adrenaline has a lot to do with mine. Thanks.

      • Hi Jessica,
        I remember you from benzo buddies. We talked once or twice there. I got this problem after some hormonal changes (menopause) which led to sleeplessness. Then I began taking several meds to fix that, such as xanax and also a few antidepressants, such as citalopram, amytriptyline. In a period of 6 months I took zanax and changed antidepressants about 4 times. Then the doctor told me to wean off of zanax and the antidepressant I was taking at the time and after doing that I began having this awful sympton.

        For me, it felt like an electric jolt with a sudden muscle movement, in the legs, arms. Sometimes it was my torso that jerked, so I jumped on the bed. For me, it felt exactly like when you are startled by something. My heart beat a little faster and then I’d lose sleep.

        I hope the vinegar helps you Jessica, it won’t cure you overnight, but maybe lessen the problem in time. One tip, I forgot to give in my previous post : I heat it (one minute in microwave), just before drinking,so that the alcohol evaporates.

        Like you, I stopped drinking because of hypnic jerks and even though I’m better, I won’t drink anymore. So, because the vinegar contains alcohol,I do this.
        Have you tried the P-5-P? It also helps me.

        I sincerely hope you will get better.

    • Yo Adrian

      I drank your nasty apple cider sh*t today. Will let you know tomorrow how it goes. Been dealing eith this 15+ years. Hope this is the cure.

      • So did I. 15 years kdoc is such a long time. Do you or have you taken any meds on the way thst have helped? Im going through waves lately, where I haven’t had jerks for a week or 2 then bam. Most times many things haven’t changed. I did a hypoglycemia test and came back positive so try and watch what I eat. I also have h. Pylori a gut bug that I’ve taken antibiotics and still there. I got this crap out of the blue and now going onto 18months. 15 years, damn I’ll be suicidal as evil condition is exactly what many describe is torture.

      • So I think I slept better but it’s hard to say. We had our holiday cocktail party last night and I usually sleep better after I have a lot to drink (which I did yesterday.). Tonight will be a more accurate indicator if the apple cider vinegar will help or not. How did you fare CK?

        Yeah, not trying to make this a contest but this has been happening for a long time. I pick when I went off to college (16 years ago now) as the start date because that’s when it became worse, but it actually predates that. Certainly was rough for a time. At my worst I was having what I would describe as seizures when I’d jerk awake and was getting maybe 1 hour of sleep a night. Lately I have any where from 20-40 disturbances per night but get enough sleep to function.

        No, no medications then or now. My PCP at the time (who I respect and like) didn’t know what to do so sent me to two different neurologists. Both ordered sleep studies, told me I had mild sleep apnea, and to sleep on my belly. That was it. So I “medicated” with alcohol for years. May have kept me from being suicidal, who knows. But (last night excluded) I’ve been cutting back on my drinking and trying to find a better way. Getting neurofeedback treatments now and trying other stuff. Hopefully Adrienne is right and this will do the trick.

    • Please let me know how u get on with the apple cider vinegar. I feel like death today im so tired. More neurofeedback today but I feel so tired that it may not go well.

      • Had my 4th neurofeedback session today. This was the deep stimulation one (where you wear the glasses). My therapist said she was finding there was low activity in the left occipital area of my brain. what is interesting is that it was there last time she did the deep stimulation as well. so it appears that i have some blockage or something going on, which I view as good. this means there’s something wrong that needs fixed, and hopefully when fixed means I’ll sleep better.

        verdicts out on the apple cider vinegar. i just read what Michelle said (see post below) and i wonder if i’m getting some of those side effects. first day I took it, it took a afternoon nap and had no jerks (yay!) but felt odd sensations down both my arms. since then i’ve had these sensations in my arms, almost like a nervous energy, that come and go. i can’t remember if this predates my taking the ACV but seems to be more frequent since. sort of reminds me of the feeling I used to get before i’d go into a seizure (like Michelle had stated.)

        also, so far my jerks have still been pretty bad. the one thing that may be different is they feel milder, but still numerous. bad couple nights last 2 nights. i’ll also say at times i catch wafts of vinegar coming from me. i don’t know if it’s my breath or coming out of my pores. i guess i’ll try it a bit longer but so far not the miraculous cure i was hoping for.

    • Hi all, just popped in and reading the discussion.

      P5P worked steady for me for about 4-5 months…then out of the blue I started getting the muscle jerks for about a week or so again and then they disappeared again for the most part but seem to pop up randomly on occasion. I also found taking apple cider vinegar actually triggered a return of the jerks (when P5P had resolved them) and once I stopped they went away again…so not sure, maybe I have a sensitivity to it. I have read on several sites that in *some* people apple cider vinegar can cause anxiety. In place of the jerks now I have started experiencing these weird feelings in my head during the day that come and go all day long as well as daily heart palpitations. They could almost be described as being lightheaded but it feels a lot scarier than that. Like my head floats off my body and I just kinda space out. I have never had seizures, but this feels like pre-seizure activity. One day I was fine one minute and the next I got hit with the floaty head spacey feeling, heart palpitations, and my fingers and left arm started twitching and jerking. All 3 symptoms hit at exactly the same moment out of the blue. It’s scary stuff. I can also say for me that large amounts of caffeine or any kind of stimulants will trigger the sleep jerks to return as well. But that day I hadn’t had any stimulants of any kind.

      I just found something very interesting that might help people here. I am part of an adrenal fatigue forum and one lady described our symptoms to a T. She said she takes Kavinace Ultra PM by Neuroscience. I looked at the ingredients and one is 4 amino 3 phenylbutyric acid also known as phenibut. So I did some checking and it is used as an anti-anxiety and sleep supplement among other things (body builders use it but I’m not sure what for). In some countries it is labeled as medication and is only available by prescription but in others, like here in Canada, it is considered a natural supplement. The Kavinace Ultra is super expensive but Phenibut bought as capsule on it’s own seems much more affordable. It also acts as an agonist to GABA receptors and crosses the blood brain barrier which GABA supplements alone do not. It’s structure is very close to some medications such as baclofen (an anti spasmodic -aka prevents disorders that cause muscle spasms such as MS and cerbral palsy), and Pregabalin AKA Lyrica used for anti-anxiety, sleep, partial seizures, and restless leg syndrome among other things, and gabapentin which is used for epilepsy, partial seizures, and restless leg syndrome. Gabapentin is the medication that initially helped me get to sleep and stop the jerks, which lead to me research more about GABA and find out that P5P and taurine are GABA precursors and start taking them. I find it interesting that all of the medications and phenibut (med/supplement) all seems to affect GABA receptors and all are used for relaxation, calming, anti-muscle spasm type disorders. Incidentally Gabapentin did nothing for the floaty head, daytime twitching, heart palpitations thing.

      My goal now isn’t so much the sleep issue as the scary floating head and heart palpitations but I 100% believe they are still related to the underlying issue that caused the sleep jerks to begin with. My counter top is literally covered in supplement bottles. I think I will give the phenibut a try. My sleep issue now is mostly insomnia, with rare occasional jerks (maybe a few days out of the month I have them mildly). I just thought I’d come on and share the info in case it could potentially help someone here.

      Just a WARNING though, they say it can become addictive and you build tolerance to it so it is best taken in cycles with other things. Some people do 5 days of phenibut and 2 days of something else, others 4 days of phenibut and 3 days of something else etc which prevents tolerance and withdrawal- withdrawal symptoms of it are bad if you just take it daily and build tolerance so definitely not worth it in that respect. Lyrica is also the same. I actually have Lyrica and have not tried it for these issues. It was originally prescribed for back pain but I quickly found it did nothing for my back pain and never took it again. Maybe I’ll see what effect it has on sleep too while I’m at it.

      • thanks for the information Michelle. let us know if the Kavinace Ultra PM works or not. i’m gonna try taking a GABA supplement to see if that helps. i had posted previously that I thought the jerks may be a cortisol/adrenal problem. i believe that is party of the puzzle. seems like things that reduce cortisol and stress hormones also increase GABA and serotonine.

        anyways, thanks for the info

      • Hi Kdoc….from what I have read Gaba supplements don’t cross the blood brain barrier. That’s why I have been taking things that are gaba precursors that do. The only gaba supplement I have read of that crosses the blood brain barrier is called PharmaGaba. I took it for a month, didn’t notice much difference but then again I already had my sleep jerks etc under control with P5P at the time.

        One thing that changed for me in the last few days. I read about an adrenal cocktail that is supposed to help support your adrenals for adrenal fatigue etc. It’s just orange juice, cream of tartar (for potassium) and himalayan sea salt. Well it boosted my adrenals all right, I started getting the twitching/jerks, adrenaline rushes in sleep again, etc in addition to the heart palps and weird feeling in my head that had actually gone away before I did this adrenal cocktail thing. So yeah I definitely believe and agree it is cortisol/adrenaline related! I am now in the process of trying to calm my adrenals again…ugh.

        Will post here if I try that sleep supplement or Phenibut.

      • All spinning your wheels . Hi anxiety people it is obvious like me .

        Hormonal . Period. Take whatever you can find and whatever doctor you can find to prescribe enough to knock you out . Wake up take more. Figuring it out waste of time . Maybe in 100 yrs . Ambien , Xanax , take it all forget about getting addicted . No sleep equals quick death . If you are 20 maybe different story . Anyone 40 or above eat them like candy .

      • Not sure about your advice Mark, but if that’s what you’re doing, good luck.

      • Mark,

        Is your only goal to spew out harmful advice to desperate people in need of help? This is at least the second time you have repeated this nonsense. Ok, so I think we can all agree that hormones may have something to do with this, but if you understood how the the brain works, you would know that the hormones are affected by how the brain is working. I’m not going to give more examples of it as its been said here before. What I do not understand is why you tell people to get as much mind-altering drugs as they can get a hold of to stop these jerks. Is this what you are doing to yourself?? You do not make sense at all! You have told people that you get these symptoms from testosterone and that they eventually leave when you quit taking the supplements. So, what’s the truth mark? It seems pretty clear to me what you should be… Stop ALL supplements and drugs and STOP giving shit advice! If it were up to me, I would ban you from this forum!

  15. Hi All,

    Just to update you on my neurofeedback. So it seems to have immensely changed my mood, anxiety has completely gone, and the electric shock feelings at night and during day have gone also.

    The myoclonus and odd visualisations are still here but much less. Still stop me from falling asleep. I spent two nights wide awake because as I just wasn’t tired. The neurotherapist said my brain has made huge changes so is disorientated.

    My first scan showed hyper activity in the back of my left lobe and a bit on the right. My new scan shows most of it has calmed down but there is a bit there still.

    The therapist worked me hard yesterday, part of the protocol is to meditate to music which stops and starts depending on the wavelength of that area. I had LOADS of jerks, hand noises etc and low and behold the scan showed it was from that area. I could actually see the culprit.

    I have 5 sessions left and I have requested to work that area as much as possible so we shall see.

    I do take clonazepam which I feel I am building up a tolerance too so will give it a miss a couple of nights and I take bloody loads of gaba supplements.

    I had a quick look at benzo buddies just to check out tolerance and saw other people using neurofeedback. Seems useful for some but I understand not everyone has had great success. Just throwing my experience in.

    Intrigued by this apple cider vinegar and other supplements suggested. Hope people have success with them.

    • Good deal Penny. Sounds like you are making progress. Oddly enough the back of my left lobe (left occipital) is one of the areas I appear stuck too. I wonder if there’s a connection.

      Something I forgot to post yesterday after seeing my therapist. She suggested possibly seeing a chiropractor to see if there was something out of alignment that could be causing a blockage. Ironically I hadn’t thought of that as I happen to be a chiropractor. So I had my buddy check me yesterday and he did some cranial adjusting. I think last night was a better night between the adjustment and neurofeedback.

      Perhaps it’s something to look into? My next session is Thursday so will see if my therapist can see a difference after my cranial adjustment.

      • Wow so interesting. I guess with you previous accidents there is every chance you have banged yourself a bit all over. Well good luck to you Kdoc. Hope the session goes well.

      • Hi penny,

        How many sessions have you done? I’m assuming that the jerks predate your clonazepam use? I did 4 sessions of neurofeedback with no results; though, I was in the thick of clonazepam withdrawal when my symptoms were thier absolute worst. My brain had calmed down by around 50% since last year around this time when I had them done. Anyway, I may try more sessions again. Did your symptoms start out of the blue? Any history with anxiety?

      • Hi Penny

        Had another neurofeedback session today. I told her about our common spot (rear left lobe) not working right and she told me that the occipital lobe definitely plays a role in sleep. My other area, R temporal, she says plays a role in “physical” so maybe the part that is making me jerk?

        Anyways, we did the more active treatment today (making things move across the screen, etc) and not the deep cortical one today. I think she ratcheted up the intensity a bit as 1 I didn’t do as good and 2 I started feeling tired mid-way through. What was interesting is when I started feeling tired and having trouble concentrating I had 6 or 7 times where I jerked mildly. Foot, leg, hand, and body gave several mild jerks. I don’t do this when I’m awake so it makes me think she must be stimulating the right area.

        I told her about the jerks and she said the same thing. Probably hitting the right area and she said the fact I was feeling tired shows that area is out of shape if you will and needs to be built back up.

        So kinda cool, hopefully generates results as it gets up to snuff. How are you doing with your treatments?

      • So it was a bad night for me last night. And while I lay awake in bed my mind was running and came to this thought.

        I just completed my 5th neurofeedback treatment and had a terrible night. I recall Penny saying something similar after so many treatments as well as Jessica. Yesterday was a unique experience at neurofeedback. While I was trying unsuccessfully to do some of the exercises my brain felt tired, I lost concentration and then felt my body jerk. Several times. I told my therapist this and she commented on how we’re working with a part (parts) of my brain that are under performing.

        So my thinking is this: one part of my brain isn’t firing enough, almost like it is out of shape. Then either because of that or some other reason a different part(s) of my brain is firing too much, perhaps causing the jerks? Anyways, yesterday we were trying to stimulate an underperforming part of my brain and basically fatigued it to the point where I started jerking during the session. The rest of the day I just felt tired. Then last night I slept terribly. My conclusion is that in working the underperforming part of my brain, fatiguing it during therapy, it makes sense why I had a bad night last night. The part of my brain now working was now REALLY not working due to the therapy fatigue and so the over active part of my brain would be now even more over active.

        I offer this only to those who had tried neurofeedback and had an increase of symptoms. Maybe this means you were touching the right nerve and just needed to stick with it more? I’m encouraged by my results so far. My thinking is clearer, memory better, and I think my sense of smell has improved. What’s annoying is that I’m getting this nervous energy/shakiness in my arms in the morning since starting these treatments. Hopefully this is just part of the process and will go away too.

        Good luck all.

      • Interesting Kdoc. Keep us updated and hopefully you are just going through a bad wave and things get better. It would be amazing if neurofeedback was the answer. I had 2 beers last night at a work function and some red meat, which i find I sleep worse when I eat it. I also had the nervousness/shakiness through my body till I decided to take quarter Zopiclone. I really believe it has something to do with adrenaline or cortisol levels somehow.

    • Thanks for the info on neurofeedback. I haven’t tried it but there is one in my city and it would be covered by my work insurance so it may definitely be something for me to try!

      • Hi Michelle, good to hear from you again. Is p5p still helping after all this time? Have you noticed any difference at all when you don’t take it? Mine have settled but they come in waves. I have phenibut but never used it as quarter Zopiclone has helped when needed.

      • Quackery. It’s hormonal .

      • hi Michelle

        Yes, after I posted that I was gonna try GABA supplements (and ordered some) I read what you said about it not crossing the BBB. So far taking it hasn’t helped. So I see your point about taking things that will promote GABA production. Now on an unrelated note, anyone on this board want to purchase some discounted GABA products? 🙂

        Not sure if you saw any of my other posts (there are NUMEROUS) but I had made mention back in November of my belief how cortisol/adrenals were partly to blame for this. I have taken steps to get my cortisol cycle back to normal and I believe it has helped but did not eliminate the problem as I had hoped. Right now I’m hoping that neurofeedback will be the answer but recognize that there are probably different pieces to this puzzle.

        Mark, aren’t you a ray of sunshine? Your opinion is merely that. Clearly you are having issues with sleep and for that you have my sympathies. Whether you’ve been dealing with this for months or years this condition sucks and can lead to negative thinking. But I would rather take a more positive view. This board is a place of hope. People from all over trying to help each other get better. If you want to roll over and die, fine. But I choose to fight. And I disagree with your opinion. Most of the medical profession doesn’t understand what we have or even acknowledge it. So don’t hold your breath if you’re waiting for them to find an answer. Besides, their solution is almost always drugs, and drugs treat symptoms, not problems. No one is going to be more motivated than us to find the cure for this and I don’t believe it comes in the form of a pill. Also, while I don’t disagree with you about hormones I don’t think we all have the same source. I’ve had life long anxiety issues, numerous head traumas, and a heavy drinker for years. Others on this board got this problem after taking Benzos, still others have other reasons. And if it’s hormones, that affects your nervous systems so that makes it neurological. But both hormones and neurological issues can be affected by diet. And digestive issues. Which can be affected by stress and anxiety. Maybe try taking a more positive view and look for solutions.

        CK, any luck with the apple cider vinegar? I gave it up, didn’t seem to be helping and I swear it was coming out of my pores.

      • Hi Kdoc, I seem to be having some luck as the days I’ve taken it I haven’t needed to take meds. I take 2 caps full in a 250ml cup of water 2 sometimes 3 times a day. The other night I had 2 beers and had a bad night. It was my second drink in the space of 12months, and for me, alcohol makes them worse. I’ve been going through waves, and don’t know if the vinegar is helping, but I will stick with it and report back after some long term use, with no hiccups in between. It is great that you are keeping us posted with what you are doing and yes I agree together we might all be able to crack that one thing that might help us.

      • Hey CK

        While my jerks don’t come and go like you describe they definitely go through waves or cycles of better times and worse times. Currently in a worse time. In the past I struggled to find any connection as to why. I still don’t have it figured out but know that things like being over tired, under a lot of stress, not eating a lot of carbs close to bed time, and going to be dehydrated will make it worse. Alcohol has an effect as well. Seems initially alcohol helps in the first half of the night but then second half of night is bad. Also, if I string together several days in a row of drinking, the first night of not drinking is terrible. I suspect this is because alcohol affects the GABA receptors so initially is having a sedating effect on my nervous system that wears off mid night (hence the bad second half of the night.) I also read the more often you drink your body stops producing GABA since it’s getting stimulation of the GABA receptors from alcohol. When you stop giving the body alcohol it takes time for the GABA production to get going again so initially you have little to no GABA stimulation thus a BAD night.

        All that being said, when I do everything “right” I still have bad phases that I’ve yet to figure out. I mentioned recently I think my bad cycles might be from the neurofeedback sessions and am hopefully with progress they will go away. I had read an article about helping the brain heal after head injury and one of the things it stressed was getting a lot of complex carbs in the diet. Seems you really need to keep your glycogen stores up while the brain is healing. I think I posted recently I’ve been having a shakiness in my arms in the morning since the neurofeedback began. It’s been getting less the more I complex carbs I ingest. I suspect perhaps my brain is trying to heal itself do to the stimulation of neuofeedback and I wasn’t giving it enough fuel, especially at night. I make sure to eat a big plate of spaghetti before bed and on days I exercise I’m finding I need to eat even more carbs than I ordinarily would. Hydration is also important too in healing the brain, so another reason alcohol can have an adverse effect.

        For now, to keep things simple, I’m gonna stay on the neurofeedback path and try to treat this like a brain injury that needs healing. I’ll let you all know how it goes. Good luck with the ACV route, keep us informed.

  16. How long have you guys been trying magnesium supplamentation?

    It takes time for someone to get magnesium deficient, similariry it will take time for someone to increase magnesium levels again.

    Further, also notice that blood serum tests do not indicate magnesium deficiency as only a small percentage is located in the blood. Also notice that not all magnesium supplements are absorbed. (Magnesium oxide is an example of bad supplementation)

    Try magnesium chloride. 20 sprays per day (250 mg) for 3 months.

    Also meditation, buteyko and not stressing helps.

  17. Google “twitches and EMF” (EMF = electromagnetic fields)

    After removing myself from a high EMF environment, my hypnic jerks slowly lessened, even though I still experience flare ups from time to time, as it is hard to avoid EMF such as wi-fi, cell towers, smart meters (particularly if one is directly behind a bedroom wall) and other intrusions to a natural sleep habitat. Google EMF and insomnia, EMF and muscle spasms or seizures, etc. The evidence is mostly anecdotal, particularly when referred to a condition called “electromagnetic hypersensitivity”, but there are a number of articles that do show a link between high EMFs and neurological effects such as seizures, myoclonus, insomnia, etc.

    Hopefully we will find a cure to this dreadful condition called hypnic jerks, as it may be a condition with multiple causes or not, can only guess based upon personal experience. I do notice a lessening of the jerks when the radiofrequency radiation (RF) and other sources of EMFs are avoided – had to test with a meter and found the levels in my home were astronomical – though EMF is impossible to avoid entirely. Can’t be 100% sure but based on researching EMF and its impacts on health, am certain that high EMF has an excitatory effect on the nervous system!

    • Hi All,

      Just sending one last post on here.

      Kdoc….yes I had some AWFUL nights after neurofeedback…..one night I got really hot, itchy and was figeting like crazy. I scratched a huge chunk out of my hand. I asked the neurotherapist what was happening and he said your brain is improving greatly but the change is huge so you are disorientated.

      My mood, mental health and social life has improved greatly after this treatment. However, I am still getting some jerks, much less than before but they are there. The therapist was hoping the 20 sessions would be enough but I am going to have a break and get back im touch with the company if I want to try again. My last appointment is on Monday and I get my final brain scan on Thursday. I think there will still be some over activity still there in the left lobe at the back.

      Part of my therapy consisted on meditation (concentrating on the breath) while playing music with certain tones. Now I can meditate very easily, a month a go I used to get electric shocks as soon as I relaxed. I got a bit anxious today and did some meditation amd I felt like I was floating. I have been anxiety free all day. I do it now before bed and in the morning too. When I am relaxed I think about how lovely sleep is and drifting off….kind of like training.

      Anyway after this neurofeedback I have become interested in ‘brain hacking’. I have bought a notebook and I am going to record my progress but in a positive way. I am sick of being down about this illness, I got severe depression from it and I want to change things for the better.

      I am going to leave you with this video which I think is incredible.

      Good luck all, giving any blogs a miss for a bit.

  18. It seems like on this board we tend to focus on what do I need to take or do to make the jerks go away. A few days ago I decided to approach the problem from a different angle and asked instead what could I be doing that is causing the problem.

    I think we can all agree that stress seems to play some role in this (except Mark who KNOWS it’s hormonal.) So I started researching stress and came across this interesting article on overstimulation. Prior to reading this article I tried a simple experiment of using no TV, smart phone, tablet/computer once I was done for the day at work (so approximately 3 hours or so before bed time.) I did this for the last two nights and have found I slept better. You can google it yourself but science has shown the TV/phone/computer usage: stimulates the brain and reduces melatonin production (due to the light from the device). But then after reading this article I realize there’s many other things that could rev up the brain prior to bed time. For me, in addition to the TV or smart phone, it was noise, clutter at home, and multitasking. I do all this through out the day but I wonder if we could cut it out close to bed time if that would make a difference. Anyways, give it a read:

    http://reset.me/story/overstimulation-taming-a-modern-problem-that-leads-to-anxiety/

    • Kdoc,

      Yes, it seems clear to me after talking with so many people like us that stress can either start this condition or make it worse. In my case, stress does not seem to make matters worse. I can have a very stressful day and then suddenly I sleep a bit better that night. Doesn’t make sense. But its certainly true for most, it seems!

      I keep in touch with several people on a benzo forum who are like me. One lady that I speak to regularly (an RN who has been trying hard to get to the bottom of this) has suffered horrendously with even more symptoms than myself (she took benzos and ssri’s for a short amount of time). She is currently 3 years off all drugs and is down to a few remaining symptoms. Her jolts and jerks left at 2 years off. Anyway, she has seen so many doctors including neurologists (like me) and has not been given any answers.
      Yesterday, she visited with a neurosurgeon. He reviewed her MRI that was a few years old. He could see the “damage” in the radiograph. It is in her brain stem and temporal lobes. According to him, this kind of damage usually takes 3-4 years to recover from and sometimes people do not heal completely (which makes sense since a minority seem to suffer beyond 4 years). She is going to get a new MRI to see if anything has changed/healed.

      My theory on this is that this problem can start with ANYTHING. Stress, hormonal supplements, alcohol, drugs, concussion, heavy metals, alignment issue, sleep apnea, etc.. What we have to keep in mind is that the body works like an oiled machine and all systems work together in harmony (endocrine system, brain, heart…). So when one thing is out of whack, it all goes out of whack. Take me for example: I, without a doubt, got this from a drug that works directly on the brain. I most likely have the same kind of brain damage that my friend does. Like her, I have had hormonal, GI, and heart issues as a result. So have thousands of others like me. If you correct that one problem that is throwing the whole system off balance, you should recover (with time). Unfortunately, it looks like its going to take me a long time due to the nature of my damage (I’m 16 months benzo free). It makes sense that people with stress-related jerks or apnea issues are seeing results rather quickly from Cpap, neurofeedback, yoga, etc. most people with drug induced damage do not see results from these types of therapies. If so, its very minimal. I have seen ZERO with everything that I have tried. Only time away from that damn drug is healing me… And its as slow a molasses. At least I can function this holiday season. I can’t even remember last Christmas. Literally, I cannot even remember what my little girls got for gifts. All I know is that I was a complete wreck and very suicidal.

      Anyway, happy holidays everyone. Praying for a Christmas miracle for us all.

    • Kdoc, you may be seeing results not just from the reduced light of no smartphone, TV, computer etc at night but also from the reduced electromagnetic radiation from those devices. For example, there is a lot of anecdotal evidence of people getting muscle jerks from a smartphone in the pocket (which is instead mistaken for “phantom vibration syndrome” – but the muscles are actually jerking from the proximity of the phone to the group of muscles nearby!) Then, more anecdotal evidence of people experiencing jerking when a smart meter is installed near the bedroom. The jerks are sometimes in a different form (ie seizures or daytime jerking), but nonetheless the EMF is the trigger it seems.

      Turning off wi-fi at night and continuing the low radiofrequency radiation close to bedtime will hopefully make your sleep better over time. This syndrome does seem to be triggered by other offenders too like stress, benzos etc.

      This problem is incredibly frustrating, because it seems only a small group of us seem to be affected – and whatever the environmental cause, whether it is benzos, stress or whatever – there is a whole group of people who don’t seem affected at all or perhaps are just popping one type of sleeping pill or another, blindly, without seeing that the “treatment” may be part of the problem! The sleeping pills just seem to mask the problem at first and over time make things worse.

      As far as what I think may be aggravating the problem (EMFs), only a small subset of the population seems to react also, or maybe a larger subset but they don’t see the relation.

      Anyway, hope you continue to see results!

    • K-doc…I was in a rush when I wrote my last post and forgot to address the the topic of your post. While I cannot find any worsening of symptoms with electronic use, there are MANY that I speak to who find that thier symptoms go bonkers when they they use computer screens and cell phones. Very interesting. I’ve also read that some people with regular insomnia sleep better when the electricity is turned off in their home (the electrical system running through the walls near their bed can cause issues. So, maybe we all need to leave the meds at home and go camping in a tent for a few years, lol.

    • Hey Derrick

      I had never really considered the EMF thing before. But after one of your recent posts that got me thinking that perhaps TV and computer could be part of this. I been dealing with this 16 years now, so I can tell you that it wasn’t due to a smart phone or cell phone as I didn’t have one back then. However, I did use a computer and had exposure to a TV daily or almost daily. I’m trying to find a something that’s been a constant in my life since this all started. Initially all I could think of was stress. But after your post I realized TV and computer has been there all along as well. I found this article that says children who watch 3 hours of TV per day are more likely to develop insomnia, BUT not til late (age 16-22).

      http://www.dailymail.co.uk/health/article-306552/Insomnia-link-excess-TV-watching.html

      I was certainly an active youth but also spent a good bit of time watching TV and playing video games. So this article could pertain to me. When I started posting on this board I was convinced the problem was a cortisol issue. I believe I have that better under control now, and it’s helped some but definitely did not fix the problem. I’ve been trying neurofeedback (have my 7th appointment today) and hope that it will help fix the damage I’ve done from years of contact sports. It’s definitely changing things but so far not my sleep. So that’s why I posted the article on overstimulation. I thought perhaps my traumatized brain might be over sensitive to normal stimuli and acting out as a result. Jessica, it’s possible the same could be said for you. Your brain injury came from drugs, not trauma, but it might be possible your brain is reacting wrong and being over stimulated. Or maybe you’re right Derrick and it’s a magnetic field thing.

      It’s hard for me to minimize my contact with technology as I use a table for work. But as best I can I’m going to try to minimize contact especially close to bed time. Also trying periods of wearing sound canceling headphones. I had read a different article about how just 2 minutes a day of absolute quiet can really help the over stimulated brain.

      Again, the no TV at night seems to be helping. So does eating carbs throughout the day and before bed. But I’m far from being a normal sleeper, so like Jessica, I hope time will heal this as the quick fix appears to be fools gold.

  19. p.s. Here is a link that further explains melatonin connection

    http://www.feb.se/EMFguru/Research/emf-emr/EMR-Reduces-Melatonin.htm

    • That’s interesting. I googled what things in the house that are sources of EMR and one of the top things was bananas! I eat them all the time! Didn’t know I needed to wear a lead vest for breakfast. Bananas!

      • Kdoc,

        Did you ever eliminate alcohol? If so, for how long now?

      • Short answer, no. This is a crutch I can’t seem to do without just yet.

        I had a period of 2 weeks straight in November with no booze. I use a fitbit to track sleep. If you’re not familiar with it the Fitbit will show you how many times you were awake/restless and gives you number of minutes awake and hours/minutes asleep. Anyways, the period where I wasn’t drinking showed I was having less awake/restless and less time awake.

        Since then numbers became worse as I resumed drinking. At my worst I was averaging 5 drinks per evening but now it’s more like 1-2 drinks, and some nights I don’t drink. So I’m working toward phasing it out but with the holidays and such it’s not a great time for me to go cold turkey.

        But I know it has an effect on this, and yes I should quit.

      • I hope that you are able to fully quit and see some good results with time. I know an alcoholic who is a fully functional man (also a doctor) who has been having hand tremors for years each morning after his nightly drinking. Alcohol has a strong effect on GABA which, as we know, has a strong role in seizures, tremors, sleep disorders, etc..

  20. Hi all, i have had this issue for 3 years. The last year however i have only had One or two sleepless nights. I do not take any medication. Things changed radically for me when i changed perspective: i used to see the jerks as a curse and an indikation of a sleepless night. I was fearful of the jerks. At some point i Got the idea that the jerk is a way of the body to reach a relaxed State in order to become able to sleep. This meant the world to me. Suddenly i could Fall asleep after jerks, and since i stopped to fear the jerks, the subsequent adrenaline rushes subsided. Today i know that i need to with bodily calmness, but also that the jerks are my friend not my enemy

    • Interesting Ken. Often we interpret a symptom as something wrong instead of our body trying to tell us something. I had read something recently about how in like George Washington’s day, people used to sleep in two separate periods. The initial period (where we get the term “beauty sleep”) was short, then people would go check on the animals or even visit/socialize before going back for the second period of sleep. I wondered after reading that if I’m jerking awake because maybe I’m supposed to be awake and then come back later to try again. Just hard to drag myself out of bed and you’re right, I begin to worry as I need to be up at a certain time and need to be rested and functional for the next day. Definitely causes anxiety.

      People on this board have said it before, having a positive attitude helps. I agree, just trying to figure out how to “get it.”

    • Ken that makes sense! But how did u convince your mind that? I have severe anxiety and panic due to the twitches. I don’t know how to change my perspective bc the adrenaline comes with the twitch and I’m panicked . Please tell me how you flipped the switch in your brain?

    • Ken did you have anxiey/panic during the day? It’s nice to know somebody has overcome this hell without medication

    • Ken how long before you changed your perspective did your sleep change?

  21. Wishing everyone a Merry Christmas and for our friends in the UK, a Happy Boxing Day! Hope Santa brings all of you a good night sleep.

  22. Hi again,

    I changed perspective through a combination of some instances and more awareness of whether my body was calm or not.

    I came to realize that some nights after couple of hours of jerking I could suddenly sense that my body reached another level of calmness, and then I would fall asleep rather quickly.It felt as if my symptomatic nervous system had been inactivated. I started to become more aware of tensions in my body as I realized that it was tensions that kept me from falling asleep.

    I had some instances where I sensed tension different areas in my body and it was exactly there i got the jerks when I fell asleep. This proved to me that the jerks are my bodys way of getting rid of tension.

    I realize that before I misinterpreted these jerks and therefore they became sources of panic, adrenaline rushes and increased bodily tension…. A full blown negative spiral.

    As of today I am not always totally aware of tensions in my body, and I am there never sure if I will get a jerk as I fall asleep or not. However, if I get a jerk I quickly realize that I had tensions since the bodily feeling after the jerk is always a felling of being more relaxed than before the jerk.

    When I read that some of you ‘pray for a good nights sleep’ my take is, that you are actually building up tension,,, hoping that terror will not arrive… It is totally counter productive. I also read that many of you seem to experiment with new methods and this often helps short term. I believe this could partly be due to a placebo effect where you actually believe it helps, and you therefore are in a more calm state.

    Concerning anxiety, yes, I was hit by generalized anxiety 5 years ago, and the night of my first jerking i remember I had a lot of tension in my body after nervous encounters at a party coupled with drinking and fatigue.

    In the two consecutive months after my first jerking I did not sleep much and at my worst I even stayed over night at a psychiatric clinic because I was so afraid that I would never fall asleep again and die soon.. In these months I also had a few pnic attacks at daytime, and didnt almost eat anything.

    Parallel to this i did however read a lot about anxiety, and I knew exactly was was going on when I got the panic attacks, and they never really got to me because of that

    Today, I am not bothered at all by anxiety, I know exactly what is going on and how to manage it. I can really recommend three books that made a total difference for me concerning anxiety:

    ‘At last a life’

    ‘Essential help for your nerves’ (a fantastic, short and concisebook, straihgt to the point)

    Concerning sleep the book ‘Effortless slesp’ gave me some very good input, however, it is my own experiences that really changed my mindset concerning the jerks.

    I have also recieved counselling from the most reknown specialist on sleeping disorders in my country, and while he could diagnose me with hypnic jerks he did not know what to do about it…..

    Concerning bodily calmness, my experience is that my own varies a lot, especially after late night workout (i do crossfit and beachvolley) I may experience tensions, and I then know that I need to eat and drink a lot to rebuild my nutritional inventories.
    Though eating healthy is one way of aiding to calmness I do not overeat. As a matter of fact I feel that I am in my best shape in 15 years, actually having a six pack.

    Its morning now, I had my usual 7,5 hours of sleep. I experienced a jerk as I fell asleep yersterday, I took the opportunity to ride on that kickstarting wave of calmness and fell asleep a minute after.

    I believe, this is primarily a mental game. If you believe this is torture, it will become torture….. If you believe otherwise, this is a way back to normality and increasedself awareness..

    Feel free to ask me further questions, should you have any. Ill be here sometimes, as I feel that if I can help just one of you with my experiences it is worth it all

    • Ken, although super challenging ,I totally believe you are right ! I want to know more like how long but took to get well? Was changing your perspective easy or hard? Thank u for posting

    • Hi Ken,

      Amazing mind power work. Well done! I seem to get lots of ‘head snaps’. Like I will be dreaming and then its like someone switches the tv off and im awake. Or its like a stream of energy through my brain…..did you ever get anything like this?

      • Hi Penny, I have had those the last 2 nights. Sometimes it wasn’t even a dream even in my tired state of thinking with my eyes shut, I would twitch according to what I was thinking,pure torture.

  23. Guys I believe I may have had a Christmas miracle after all. I put to test a new theory and have had my most encouraging success yet. I’ve false positives before so don’t want to say what it is now, but for all of you who’ve had no or minimal success with other suggestions on this board (nutrition supplementation, diet, neurofeedback, etc) I’d be curious if any of you experience these symptoms in addition to the jerks:

    •Neck pain
    •Unsteady gait (problems with balance)
    •Poor hand coordination (fine motor skills)
    •Numbness and tingling of the hands and feet
    •Dizziness
    •Difficulty swallowing, sometimes accompanied by gagging, choking and vomiting
    •Vision problems (blurred or double vision)
    •Speech problems, such as hoarseness
    •Ringing or buzzing in the ears (tinnitus)
    •Weakness
    •Slow heart rhythm
    •Curvature of the spine (scoliosis) related to spinal cord impairment
    *Headaches

    I will update you on my condition at the end of the week but am very optimistic this time. Fingers crossed!

    • Hey kdoc, I’ve had pretty much all the above at some point when the jerks started and at my worst nearly all of them. At the moment I have the damn tinitus which started when the jerks started. Im currently having some serious ear issues with constant leaking of what is wax or fluids. I’m told.i have a staph infection, and taken course of antibiotics and ear drops the last 5 months and nothing.
      It’s been 18months since the jerks started and have progressed to the point where I can sleep most nights med free.. My sleep is still crap though. I barely get more than 5 hrs, rarely 6hrs of broken sleep. I don’t feel like I’m getting much rem sleep as I get up heavy eyed and heavy headed. If I could just get my sleep maintenance and quality sorted I think I’ll be on the right track. 2 nights ago I took 2mg mirtazapine and slept 9 hrs(first in 18months). Unfortunately, meds isn’t the path I want to take and mirtazapine gives me bad nasal congestion and shortness of breath. Going to bed relaxed makes a big difference and learning to ignore the jerks does help. Do you average 7.5hrs nightly? That is awesome. If you get that.

    • Disclaimer: I am not diagnosing anyone. I am merely posting what I feel may be causing my hypnic jerks. If you find anything I post sounds like you I encourage you to see a medical provider.

      So in one of my frequent internet searches to find out what was wrong with me I came across the term paroxsymal nocturnal dyspnea. It’s a condition of severe shortness of breath which occurs at night that “usually awakens the person from sleep, and may be quite frightening.” This obviously intrigued me as this happens to me. But this condition tends to occur with congestive heart failure which is NOT me. However, it mentioned it can occur due to depression in the respiratory center, which is located in the brain stem (region connecting the brain to the spinal cord).

      I know the location of the brain stem from my anatomy days. Part of it is right by where the spine and skull meet up. I got to thinking that with all my head and neck trauma, perhaps I have something going in this region that is affecting the respiratory center. My initial thoughts were that maybe from my injuries I had ligament laxity (loose or slackness in the ligaments) that was allowing my neck to stretch apart when I laid down at night. This then could be causing a traction effect on the spinal cord and ultimately brain stem thus causing mechanical compression to the respiratory center.

      So the more i researched it I came across something I’d learned about in school and even dealt with in practice. There’s a condition called Arnold Chiari Malformation (ACM) that is a malformation of the skull. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull). The more I read about this the more I recognized I very much have and have had symptoms of this for years. In fact, in my previous post I listed the more common symptoms of ACM. Here is a good article that talks about ACM and sleep problems:

      http://asap.org/index.php/medical-articles/sleep-disordered-breathing-and-sleepiness-in-patients-with-chiari-type-i-malformation/

      Anyways, since finding this out, I made a very slight change in my night time sleeping. As long as I can remember I have slept nearly flat on a very flat pillow. When I relax and start to drift off to sleep my neck muscles will relax which will create a slight tractioning of my neck. If I’m right, this will further pull or traction the spinal cord and brain stem amplifying the effect. So what I have been doing with success the last several nights is propping my head up with more pillows so that my head has a downward force applied to it when I sleep so that my neck does NOT stretch.

      I think in my case I’m right because I’ve had the best 3 nights sleep I can remember in 16 years. I’ve also not been doing good with my other sleep habits so I should be sleeping terribly right now. But I’m not!

      I’m still working on getting used to sleeping propped up, as I said I’ve slept on a flat pillow forever. So not sleeping perfectly but I think once I get used to the new sleeping position it will get better. Jerks are much milder and far FEWER since I started using the extra pillows.

      ACM is fairly rare and if you think you have it you probably want to be evaluated by a medical professional. I’m going to make an appointment with my PCP in the new year to try and get a brain MRI, which is how this will be confirmed.

      Hope this helps so of you. I can’t tell you how elated I am I’m sleeping more normal. I feel like I had a life sentence but was released after 16 years!

      • Well, I thought I heard it all but I guess not. I hope you continue to experience improved sleep. Sounds amazing!

      • Keep us posted . I will say there could be something to this as it relates to the brain stem. You can also go out and buy a firm pillow. There is also that commercial on 24 7 about the perfect pillow . I slept in my stomach for my whole life until this started . I’ve state I believe it is hormonal but maybe in the sense hormones exacerbate whatever it is . Keep in mind many times I thought mine were gone only to return . So keep us posted . In fact how about one week from now if possible .

      • I’m seeing my PCP on Friday about this. Last 2 nights haven’t been quite as good. I’m starting to wonder if those neurologists I saw way back when were right and I have sleep apnea. I try to pay attention as I am drifting off to sleep and noticed last night my throat did feel choked up or something before I felt a mild jolt. My wife told me I was snoring a lot last night too.

        I found that propping your head up on pillows can help keep the airway open for sleep apnea patients. So maybe that’s what I have… but it wouldn’t explain the sensations I was getting down my arms all December. We’ll see what the PCP has to say.

      • Hi Kdoc,

        Was just checking in.

        Are you still doing neurofeedback? If so do you believe that is any help?

        I start my second treatment soon.

      • Hi Penny. Nice to hear from you again but sorry to hear about the Clonazepam issue.

        No, I discontinued the neurofeedback after 9 treatments as it did not seem to help with the jerks. If anything it may have made them worse. The treatments did seem to help reduce my anxiety levels, help me think clearer, and oddly enough improve my sense of smell.

        I discovered around Christmas that using an extra pillow under my head helps. My entire life I was using a very flat pillow to sleep. I originally posted that I suspected I might have either Arnold Chiari Malformation (ACM) or else some traction effect on my spinal cord that was relieved when I used the extra pillow and propped up my head. But then I noticed a few nights ago I felt a choking feeling in my throat as I started to drift off and then jerked awake. So that could be obstructive sleep apnea, but also could be an effect of ACM. Now last night when I initially laid down I had what I assume would be called restless leg syndrome. It was so bad I got up for about 20 minutes to shake it out before laying down again.

        So aside from the extra pillow making a positive difference in my sleep I have no idea what the hell is wrong with me. I’m seeing my family doc on Friday so hopefully he’ll order some studies so we can figure this out or rule some things out.

  24. I should probably add a bit more how I am doing too as it has been a while since I posted. I am generally doing better,no anxiety, electric shock feelings….however I was using clonazepam tohelp with this situation as I healed and now the tolerance has gone through the bloody roof. Gutted as I was progressing so well. As I know some of you believe that this drug caused the illness in the first place I am upset I am now increasing the dose but I feel I need it for this issue.

    My neurotherapist said that is just the nature of the drug and so far my GP has encouraged me to stay with it whilst the specialists and neurotherapists are looking into it. I took so much last night that I am now highly sedated and can’t get out of bed for my first day back at work.

    • Hi Penny, how much are you taking. I’ve read people take more when the jerks are bad then come down to the. 5mg to 1mf which seems to be maintenance dosage.

      • I used to take 0.275 – 0.5mg…..its shot up to 1.75mg!! Then 2mg didn’t work last night either. My GP says because I am taking supplements, doing meditation yoga and neurofeedback that I should go ahead with higher doses as we have a long term plan. I am just shocked at how quick tolerance can go up. I never get a withdrawal feeling if I don’t take then and I also feel relaxed in the day. Actually had a jerky snooze this PM. Its just at night I get sensation ‘flashes’ which the clonazepam stopped but it has let me down. After seeing my neurofeedback scans I feel I am some freak of nature ready to be tested on. If the top scientists took notice of us then I feel they could solve all sorts of mysteries of the brain. I have been keeping a brain hacking book and recording all sorts…..I have noticed when I do get to sleep its deep and for hours with loads of nice dreams….even on the dreaded clonazepam or after alcohol. Its just the falling asleep. My next neurotherapy is in two weeks and I have manages to get some kava tea to try and relax me more at bedtime. Feel I need to have a little break from the clonazepam but so hard to do when you crave sleep.

    • Sorry Kdoc, missed your message. Sounds like you have cracke your issue but feels different to mine. Can I ask what your neurotherapist said when you stopped? Mine feels like we made huge progress and found the areas of the problem. Did yours say there was nothing they could do?

      • My neurotherapist didn’t object to me stopping. I was making objective, measurable progress on her end and as I said there were some positive changes for me. But there was no effect on my hypnic jerks. Zero. Actually, they seemed worse for a day or two after a treatment. I found on a day I had a session I really needed to load up on carbs. That seemed to help. Guess my brain was burning through fuel at a faster rate than usual. But after I told her the extra pillow was making a difference at night she agreed with my theory and seeing my primary doc to rule out neurological stuff.

        Not to feed your fears but I agree about the increase in dosage as a cause for concern. Especially if it’s not helping.

        Your story doesn’t sound all that different than mine. A lot of these well meaning suggestions on the board didn’t make much of a difference for me. And even at my worst when I finally fall asleep I get to the deep sleep. I average 1-2 dreams most nights, even on the bad ones.

        The part you said about “sensation flashes” struck a cord with me. When I started paying attention to right before I’d fall asleep I’d notice odd sensations too. I can best describe it as a nervous energy, in my legs, arms, body. Often I’d jerk right before nodding off, other times it obviously woke me up. Since some time in November I’ve also had off/on nervous energy and/or shaky feeling in my arms most mornings. My arms don’t visibly (tremor) shake but they feel shaky.

        To me this seems neurological, which is how I came to the Arnold Chiari Malformation theory. But after thinking of it over the past week, I believe it’s more likely I have stenosis in my neck for years of head/neck trauma. This would cause the arm symptoms, headaches, and possibly the jerks. But I’m also thinking I may have sleep apnea too. Then there’s what I’ve already known that alcohol may help me get to sleep but is a real sleep disrupter. Since the holiday season began I’ve regressed in my drinking but plan on cutting back in the New Year.

        My point is if the meds aren’t working, perhaps you could either have sleep apnea or some sort of spinal cord pressure too. The meds likely will help calm you down but if you are stopping breathing in the night your body will over ride this. Were you ever checked for sleep apnea?

      • Thanks Kdoc, you do send great responses to people. A true caring gent!

        The meds worked wonderfully for a while but now not. I sadly just think its tolerance so I need to give myself a break from them but need to speak to my doctors first. I never feel any withdrawal symtoms so I am lucky there.

        It is interesting your neurotherapist said its ok to stop. I do like the honesty and no hard sell. Is she in the UK? Mine feels like we have found the problem and can really work on it. I do feel from the scans that another session will help. I guess like you said, more ways to skin a cat. I feel like this is the one way that will really heal me and I have felt the biggest change from that. I did have some bad nights though from it. I am going to ask for a different protocol next time as I have an idea which may help.

        I have never had a sleep apnea test but I did have a 24 hour EEG on the NHS but the nurses kept me up all night though haha! Still waiting the results. One thing that upsets though is I asked me what happens if I get tolerant and he said ‘not everyone does’. Not helpful right now!

      • Well aren’t you kind. I was afraid most people would think I’m long winded.

        No, unfortunately I am not in the UK. I am your friend across the pond in the states. As for the neurotherapy, if you saw some benefit in your sleep by all means keep trying it. It just didn’t help me in that regards so I didn’t see the point to continuing.

        Wishing you all the best and keep us informed how your progress goes!

  25. Kdoc and orhers, i knowits hard, but please try to work with your mental response to the jerks.. In my case i have realised that they are my body,’s way of getting rid of nervous energy. However, if you think the jerks are the problem then the will generate more nervous energy. Its a mind game. It May take time to change perspective. Its a simple advise that can be very hard to execute.. Try to think like this: when the jerk comes feel your body, try to sense how and where it has released tensions.. Think to yourself: Ahh, my body helps me to reach a calm state, if i am not yet calm enough another jerk May help. Please welcome the jerks… Remember: what you resist, persist!

    • KEN!!!!!!!!! Thanks for sharing your healing. Since u mentioned the book I read at last a life. It’s very helpful. I’m currently having a “setback ” though. Ken please email me. I had this for 5 months. I have a few questions I want to ask you jentorres51@gmail. PLEASE please email me

    • Ken can you please coach me? I need help!! Please contact me

      • Im going through a bad cycle, constant head rushes, noises and thoughtful actions that don’t stop.

      • Hi jen, im not a therapist, but i will do my best to help you. My mail is kenbrijen@gmail.com

      • Hey CK

        sorry to hear about your rough patch, but I can relate. I went to see my doctor yesterday in a near panic. I’m not sure when, but let’s say for a week I’ve noticed I’ve had a tremor/shakiness in my hands and recently in my neck. Prior to that I’d been having sensations down both my arms all of December. My worse fear was that this was something neurological (MS, Parkinson, etc) and what would that mean for my family’s future. So needless to say I’ve been sleeping poorly as my anxiety is through the roof!

        He did a physical exam and believes it’s NOT some upper motor neuron disease but rather anxiety and my body’s reaction to it. We’re getting an EMG of my arms to be sure but I happen to think he’s right. I’m having a real time with my anxiety right now. As I write this I’d probably rate it a 7/10. Best thing for me is to stay busy and it seems less but at times I’m quiet, it comes roaring back and scary thoughts enter my brain.

        I wonder if just coming off the holidays into the new year if we’re both just a bit on edge. For me, the holidays are great but exhausting and stressful. I’m also worried about typical things (money, family, etc) and came off a stressful end to the year with the election (here in the states.) my hope is this passes and I see my life return to normal in a week or so. But I feel your pain my friend.

      • Ho kdoc, good to hear everything came back ok. Im just trying to hang in there and hope it will pass. I unfortunately still have to take meds now and again. Living on 4hrs or so of sleep for the last 18months has been tough.

  26. Anonymous said:

    Man who cannot sleep I was gonna ask you again because I think I asked the question on the wrong page does vitamin c make you tired???

    • Anon; I don’t know what happened to tmwcs but here’s my answer. I took 500 mg of vitamin C for a couple mos. it made no difference in how I felt. It was prescribed by a naturopath doctor who overprescribed supplements to bring in more income. Doesn’t hurt to take a multivitamin but most people who eat a well balanced diet don’t need vitamins. Vitamins are necessary for people who have chronic digestive and absorption disorders or liver disease. Doctors often prescribe vitamin D3 but the best way to get that is from only 10 min a day in the sun (as much as you can) and by eating vitamin d foods like eggs and salmon.

    • He hardly gets on anymore. I don’t know why, many have asked him questions and never responds. I doubt vitamin C gets anyone tired. It helps a little controlling cortisol levels buy I’ve never had any luck with it. I’m going through a terrible cycle and nothing woks other than a sleep med.

  27. Anonymous said:

    Yes he did answer me before about it I wish I could talk to him person to Person because me and him because I found three things that help but they have to be tested,because I didn’t think much about it before but trying it with these other things has made a huge difference but,I will never know of I can’t talk to him over a phone call IMA try and exchange emails with him if I can of he sees this but I can’t come on here everyday because of all my lawyer stuff disability shit and doctors,really need a one on one Congo he mentioned potatoes a long time ago too and I know the connection between everything he said that works or doesn’t work

  28. Ive tried Lithium Orotate 5mg, for the last few days and it is helping me get 8 hours. Has anyone tried it? Im worried about side effects.

    Has anyone had any improvement with any particular type of magnesium? I believe Ive tried most. I find the Calms magnesium before bed makes me feel tired but does little for the jerks.

  29. Has anyone on here been put on beta blockers to help with the jerks?

    If so was it effective at all?

    • Hi kdoc, some have but not sure how successful they were. I tried metropolol when I firdt got this as my heart rate was going through thr roof and had no luck. My heart rate has dropped now but jerks still continue. I haven’t tried them since and that was say 18months ago. I take 3 or 4 different meds a week to not build up tolerance and last few weeks find this wave more intense. I do remember reading clonidine has helped some. How are things going with yourself?

      • Hi CK

        Had a rough go lately too. I was getting odd symptoms in my arms: shakiness, tremor, tired feelings. Saw my PCP who sent me to a neurologist. Neurologist did an EMG and said everything seems normal. Getting a brain MRI to rule out MS but he thinks it’s anxiety induced.

        So he put me on propranolol to help reduce the shakiness and I’m guessing my anxiety. Wondered if anyone else had gone this route with any success.

        So far no real change in sleep or with shakiness that I can tell.

      • Tried it made it worse FYI

      • Can’t say the propanol has made the jerks worse but also not sure if it is helping either. I am still having the shaky feeling in my arms and neck through out the day so it doesn’t seem to be helping that either.

        Years ago at my worst with this I would wake up having what I’d describe as a seizure. My whole body would convulse bending me into a C shape, almost like a was doing a sit up for 20-60 seconds before it would stop. Thankfully that is a thing of the past but since my new problem started at times I wake up and my arms, chest muscles will be shaking. I believe the correct term is fasiculations. It happens after a jerk that has my heart racing (I’m thinking adrenaline induced.) Usually is short lived, I can shake it out. It also seems to happen worse when I’m suffering from more stress/anxiety and then on nights I’m in a better place hardly at all.

        Anyone else ever experience this?

      • Hi kdoc, I used to get this in the early stages for sometime. I also got the seizures you describe the first 12 months. I’m sure it’s something that will pass. Nothing suprises me with this condition. My jerks have settled but I still find it hard to sleep as I get these brain arousals, pops whooshing sounds with a faint twitch that keeps me up. I’m also getting that constant dreamy twitch that wakes me out of my sleep. Last night even with 5mg baclofen I only got 3 hrs. I might get a period of a few days where I manage to fall asleep easier, but there’s always something.

      • Hey CK

        Thanks for responding, nice to know I’m not the only with such symptoms. I still am going through cycles of better and worse. When I have success with something I get excited and seem to do better for a while. But then inevitably it will get worse again. No rhyme or reason. Except that stress/anxiety makes it worse. Been off alcohol now for almost 4 weeks, initially seemed to be helping but last few nights have been bad again. I’m more inclined to stay off the sauce this time as I’ve developed these other neurological symptoms during the day. Really unnerved by new daily symptoms. Not helping my anxiety levels.

        Hope you get some sleep soon my friend.

      • Hi Kdoc, yea stress doesn’t help when we have this condition. I’m. Going through a wave of insomnia so trying to deal with that. Hang in there I’m sure it will pass.

  30. Hey guys,

    I totally agree with Ken. Not worrying about the jerks will seriously cure 50% of the Problem. I preceive the jerks as a release of tension. Although difficult, try to embrace them. When we get anxious about them, the body creates more tension and we are in a viscous cycle.

    I believe that the other 50% stems from a overactive nervous system. I think that the trick is to look at the other symptoms you have alongside the twitches.
    I sincerely believe that mine is caused by a disbalance in electrolytes. If you search for scientific articles hypocalcemia (calcium deficiency), hypomagnesia (magnesium deficiency) and hypokalemia (lack of potassium) might cause hyperactivity in the nervous system.

    My other symptoms are:
    – often cold hands and feet
    – muscle twitches during day
    – heart palpitations
    – asthma
    – hypnic jerks
    – racing thoughts

    I was an overbreather for a long long time. Research shows that breathing too much, will actually alkalize the blood. This in turn will cause the body to excrete many minerals to stabilize the PH.
    I think that by having unhealthy breathing habits for a long time, I became difficient in minerals like magnesium and calcium.

    A nutritional deficiency takes a long time to develop. Therefore I also takes a long time to replenish the levels of your stores. I hear many people trying magnesium for 2 weeks, and then claiming it does not work.
    First of all, look at the dosage. When we have taken too much we will simply get diarrhea/ loose stools. If that is not the case, your body can probably handle more. Secondly, it might take at least 4 months of daily intake before any results are seen. Our bodies are made to last. If we provide it the right fuels it will certainly heal.

    I am doing the following to treat my symptoms, with great results.

    – meditation (to keep my head cool)
    – buteyko (to eliminate the root cause)
    – magnesium supplementation (to replenish the lost magnesium levels caused by poor breathing.)
    – since a short while ago also calcium supplementation. (To keep magnesium and calcium in balance)
    – vitamin D supplements (helps to absorb calcium and magnesium)

    As for magnesium. I take 3x magnesium citrate (100 mg) + 10 sprays magnesium chloride in the morning and 6 sprays magnesium chloride before sleeping.

    2x 200mg calcium citrate + foods high in calcium like brocolli, dairy foods etc. (aim for 700mg/800mg in total per day)


    I dont want to jinx it, but I have seen great results. Although not completely cured I am off my medications and am able to sleep every day. Some days I still get very twitchy, but as I mentioned before: try to embrace it.
    Also I have noticed that for me the twitches and racing thoughts come together. Try meditation.

    TIP: I got very depressed from this forum, so don’t visit this place too often.

    • Hi B2

      Nice to hear from you again. Glad you’re still seeing results. I appreciate you keep updating us with good news, that means you’re on the right track.

      And I agree with you, it’s likely an overactive nervous system (anxiety). I’ve been guilty of looking for all sorts of obscure reasons for the jerks (my most recent, I was convinced I have Arnold Chiari Malformation that was just disproved by a recent brain MRI) even though I’ve always suspected the root cause was likely anxiety/overactive NS. Seems when I sleep the best is when I’m in a good place mentally or when I’ve just tried a new intervention and convinced myself that it was the cure (placebo?)

      As of last month I’ve developed new symptoms during the day. It started out with parathesia down my arms and later turned into shaky arms, neck, and trunk with movement and what I think is an internal tremor in my arms. So far have seen 2 doctors, had an EMG of my arms, and a brain MRI with no major findings. Both docs think it is coming from anxiety.

      Anyways, since I’ve given up drinking for about a month now I plan on doing a liver cleanse over the next 3 weeks. But after that I’d like to give your protocol a go.

      Question: about how long doing the supplementation did it take before you noticed improvement? I’m also planning on getting back into meditation and butekyo daily as well (no reason I can’t start that now with the liver cleanse).

      I will say this board has never made me depressed. In fact I find it a place of hope. The only thing I will say for new people to the board is to be wary as there a myriad of different suggestions and that it can be overwhelming.

      Thanks

      • The truth is that i have no idea. I am doing buteyko for 5 months now. The supplementation I just started 2 months ago.

        The weird thing is that the changes come very suddle. You can’t expect that something is gone when you wake up… the changes come so subtle they are almost unnoticeable. I used to have symptoms I can’t even remember. But anyway try it and see for yourself. It is estimated that 70% of us is deficient in magnesium, so taking some supplementation is never wrong!

        There is a YouTube challenge called Dr. Berg, he provides great information on how the body functions etc.
        ( if I can remember correctly, drinking lots of alcohol depletes magnesium he told in one of his videos)
        also to motivate yourself, watch TedX… there a people who cured themselves from the weirdest conditions. That really helped to inspire me.

        Goodluck everyone

      • Interesting article on Magnesium. Made some points on how and why Mg is best absorbed. Perhaps after reading some of you (like me) might see why taking Mg is the past failed to generate any results. Also made mention of hyperventilation as a source, so another reason to try out Buteyko.

        http://www.drmyhill.co.uk/wiki/Magnesium_-_treating_a_deficiency

        ps. I am NOT endorsing the rectal method of Mg supplementation

      • Much longer but very interesting article on Mg (my new latest obsession!) Worth reading, covers fairly thoroughly the topic of Mg and deficiency:

        http://mentalhealthdaily.com/2016/08/24/magnesium-deficiency-symptoms-causes-treatments/

      • Thanks Kdoc. I wanted to ask you since you’ve had the jerks for a long time. Have you ever experienced brain arousals or micro twitches that feel like they are coming from he ears and head. My jerks have settled enough to the point I don’t feel them but for the last 4 to 6 weeks the brain arousals, followed by ear pops and rustling sounds have been torture to the point I get maybe 3 or 4 hrs and that is even with meds. I just don’t get how this new symptom can come about and stay when my jerks have settled. Any advice from yourself or others would be appreciated. I’m just not doing well at them moment as starting feeling l jerk free and now this new condition that won’t let up.

      • Hey CK.

        No, I don’t think I’ve ever experienced what you are describing. In the past few months I’ve experienced something like a wakeful sleep at times, usually with naps. I’m laying there completely still, calm, and feel like I could be asleep except my brain is totally alert. When this happens I’m aware of everything, but it’s different from just laying there. I’d say I’m asleep in every way except my brain is alert. I don’t ever jerk during this time, I eventually just get up. I do feel rested afterwards.

        But I’ve never had any auditory symptoms. I’ve experienced: jerks, thrashing, waking up gasping, jumping out of bed, seizures, and lately about 10 seconds after jerking awake tremors in my forearms, chest, and shoulders.

        After reading B2’s post I’m giving the magnesium angle another try. Whenever I tried it before I didn’t really give it much time to work, plus realize I was doing a number of things that would’ve interfered with it. In my case I was drinking alcohol regularly, drinking too much coffee, also taking protein shakes which had a diuretic effect, not taking enough Mg, and not taking vitamin D. I hoping now that I’m doing things different this time, maybe I’ll see results with time. Certainly after reading about Mg deficiency I realize a number of symptoms I have been experiencing could be from that.

        Sorry to not be any more help to you.

      • Hi Kdoc, yes very similar also to what you get with the nap sometimes. It’s like I wake for no reason while feeling I was getting into a sleep. I’m giving magnesium l theonate a try again. When things were at there worse and I tried all the magnesiums you can name nothing worked. I will keep you posted. Buyteko, breathing as b2 said I feel has helped me get to the point of calmness, however I just need to do it more often.

      • CK, I just re-read your post.

        What do you mean by “micro twitches” in head and ears? Are you saying your muscles are twitching?

      • It’s like a weird wakefulness you described when having a nap. Its sort of feels like I’m rustled awake and sometimes its like a bowling ball drop feeling then wake as I’m drifting off. It does bring on a small adrenaline rush, but being clam brings it back down. It’s crazy because it seems to be the one thing that is stopping me. Last night I took magnesium theonate and some magnesium cream on my temples, went to bed tired and managed a better sleep. Still tired this morning. Very early days and don’t want to be to hopeful as nothing has ever worked. Accupuncture, herbalist, homeopath, every vitamin under the sum, you name it nothing. Hopefully, now that things settle and these waves are not as frequent things might work.

      • Well that is too bad the jerks have stopped but now your brain is waking you. Makes me think that this all stems from the brain ultimately. Perhaps this is a sign you’re improving. At least in my field, when symptoms stop going into the limbs and centralize that is a sign of the problem getting better.

        Yes, give the Mg a try again. I used the spray on Mg oil last night for the first time and had a good night sleep. Hoping to see results in a month or so, only been at this less than a week. I also may try a liver cleanse/detox if the Mg doesn’t get me there. Years ago I did the liver detox and it seemed to help. Will let you know how it goes.

  31. Good article on Vitamin D, mentions Mg

    http://www.precisionnutrition.com/stop-vitamin-d

  32. have good news to tell everyone. My hypnic jerks are down 80% and my doctor cut my dosage of gabapentin from 600mgs a day to just 300 mgs a day. Last year at this time I jerked all night and even felt the electricity go up and down my body. I told a Canadian pharmacist about my problem and he recommended I take wheat germ oil to soothe my nerves and rebuild them. I am allergic to gluten so I had to find gluten free wheat germ oil which is made. I have been on it for about 3 weeks now. Soon I will be off the the gaba. I wish you all the best of luck.

    • Juan: great news!! Congrats. I will try this out this week.

      FYI people, if anybody else is addicted to caffeine like me, completely cutting it out seems to have made the severity and regularity of jerks much less. Something to think about.

      • Caffeine all of it must be eliminated period . Gabapentin useless .

      • FYI if you take 600 mg of gaba or anything it will knock you out. If I take 100 mg of Valium it will make me sleep does that mean it’s working ? Of course not. It’s like saying if I kill myself the jerks will stop . Quit kidding yourselves . Drink lots of water . Biggest cut ever been mentioned here . Has to be over a month .

  33. Yet another interesting article on Magnesium. This suggests taking Mg on an empty stomach, which I had not heard before. I guess the idea is that different food components may compete with or block Mg absorption. Also addresses the different forms of Mg and what it may be beneficial for. So far I have been mainly using Mg Citrate orally but from what this says perhaps Mg Glycinate or Mg Oxide might be better choices due to their effect on nerves.

    Once again, for anyone who’s tried Mg with no luck perhaps you needed to tweak it a bit.

    http://peoplesrx.com/the-best-kind-of-magnesium-for-you/

    • Mag oxide is usually user as a laxative.
      Mag citrate, citrate and chloride are most recommanded.

      Also there are different views on whether to take magnesium on an empty stomach or not. Some say food interferes with absorption while other say a little bit of food is required to start the digestive system.

      Also be aware on other electrolytes like calcium, potassium. At the end it is all about the right electrolyte balance.

      dr. Berg (YouTube)
      Dr. Carolyn dean
      Dr. Sirus

      Are all very interesting naturopaths and nutritionists worth doing more research on.

      • Hi Bryan2, I was taking magnesium l theonate and found it has made my jerks worse. Past post from others also confirms that magnesium sometimes helps or makes things worse. In my case, it seems to have not helped. I might try magnesium citrate again, but from memory it didn’t help when I was at my worst. How are things going with you? I wonder how kdoc is going.

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