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.

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2425 thoughts on “About”

  1. Finally found time to post my story. Its a long one. I’m a 47 year old female, I work out every day and eat healthy. No health issues until almost 2 years ago, while working out I started getting skipped heartbeats. After a full cardiac workup they determined I had benign Pvcs (preventrical contractions). Told me I could take a beta blocker or just live with them. I decided to just live with them since I mostly I started having them every day but had them during workouts. But it did cause me some anxiety.

    About 9 months after that they started getting worse during the day not when I was working out. I could not pin it down to any one thing that was causing them. After a bad weekend of having them most of the weekend about every 10 or so beats ( but I was still sleeping fine) I went to bed and the jerks started that night. I had been to a naturopath over the summer and I was taking ashwanghanda, maca, and some sort of liver cleanse for about 2 months. I immediately stopped taking all of it the next day. I thought the jerks might be because I was having the pvcs as soon as I’d fall asleep and it would wake me up. But then I couldn’t feel any after I woke up. After about 4 nights of almost no sleep–I could get to sleep for a couple hours if I took benadryl, melatonin, and drank a beer. I made a dr. appt. The no sleep creates a double problem for me because it causes pvcs and raises my anxiety which then causes more pvcs which then causes more anxiety. I saw my dr. and she prescribed a beta blocker metaprolol. 3 more nights of no sleep but at least the pvcs had lessened but the anxiety was terrible from the no sleep.

    Went back to my dr. and she prescribed ativen for sleep and anxiety. I was able to get to sleep but it wasn’t a good sleep and after about 2 weeks I started getting rebound anxiety plus the metaprolol was not working for the pvcs very well either.

    Went back to my dr. and she prescribed Paxil and changed the beta blocker to atenelol and wanted me to wean off the ativen. The paxil caused really bad side effects for me. It caused severe nausea, lost weight I didn’t have to lose, and just terrible anxiety. I’d never had an anxiety attack before this whole thing started! I could only sleep if I took the ativen. Went back again she switched me from Paxil to Myrtazapine. She started me on 15 mg but it gave me like sleep paralysis. I would be so sleepy I couldn’t move but I was still awake and having the jerks unless I took ativen. After about 2 weeks I was finally able to sleep just taking the Myrtazapine (lowered dose to 7.5 mg) and the atenelol. It was heaven! Best 6 months of sleep my whole life!I would take the myrt at bedtime, I would fall right to sleep, and I could sleep 8-9 hours easy. There were 2 nights in February the jerks came back but then they went away again. In March, I started noticing though the myrt was not making me as sleepy at bedtime and it was taking me longer to fall asleep. No jerks. So I started taking some melatonin with it then I was falling asleep faster again.

    One night in April I took it went to bed, took me a long time to fall asleep and then the jerks started again. I had also been having more pvcs over the last couple of months like the atenelol wasn’t working as well either. I went back to my dr. and she prescribed lunesta. I also started acupuncture. The dr. sent me for an MRI. I was still taking the myrt and atenelol. The lunesta seemed to work. I had a couple of bad nights when I had stress and it didn’t work as well but for the most part I could fall asleep and stay asleep with it. the acupuncture really helped with the anxiety and stopped to pvcs again.

    The MRI turned up slow blood flow out of my left jugular vein. The did another mri with contrast and found I had a blood clot in my left jugular and backing up into my left sinus cavity vein. It wasn’t completely blocked off but one of dr.s did tell me I had created new blood pathways around the clot. I was immediately admitted to the hospital and put on iv blood thinners. I talked to no less than 5 dr.s at least 3 were neurologists who told me that this in no way could be what’s causing my sleep issues and jerking it was just a “lucky” find because of the mri. It is also in no way causing the pvcs. So now I am on Pradaxa blood thinners for at least 6 months until they can test again and see if the clot has gone away. They did find I carry one Leiden V gene that may have contributed to the blood clot but it’s very weird that I would get one where I did instead of one in a leg vein, etc. Especially when I was younger and on birth control or pregnant. They have run many tests for autoimmune disease, cancer, etc. to find other causes for the blood clot but they’ve all turned up negative.

    I guess in a way I should be thankful for the jerks because they may have saved my life. I am scheduled for a sleep study but they can’t get me in even for a consult until August! I’m also supposed to see another neurologist at the eye institute because they want to check for pressure in my brain and they can’t do a spinal tap because of the blood thinners. I don’t know what they’re going to do at that appt. but it isn’t until july and its a 4-5 hour appt.

    I decided to wean off the myrtazapine because what good is it if it doesn’t help me sleep. I’ve never had depression. So I’ve been cutting the 7.5 mg in half and taking about 3.5 mg. I did that for about 3 weeks didn’t notice any difference in sleep or mood. Last Saturday I had a rough night of sleep, slept for about 2 hours and then jerks the rest of the night. Then slept fine on Sunday (all on Lunesta, I haven’t slept without Lunesta since April) Then on Monday I stopped taking the Myrtazapine. Slept fine on Monday, Tuesday, Wednesday and then the last 2 nights I’ve woken up with the jerks after falling asleep for 2 hours and been awake the rest of the night except maybe an hour of sleep on and off in the morning. So I’m thinking the Lunesta has stopped working? Or maybe withdrawing the Myrt is the issue? I just can’t even think straight on 3 hours of sleep. I guess I need to see my dr. again and see if I can get some clonazepam. I just don’t want to have the same rebound anxiety I did with ativen. And I don’t see a way off once I start it. I haven’t slept drug free in 11 months and a year and 1/2 ago I was fine and didn’t any medication.

    • Anonymous said:

      Stacey,

      You are probably the first person to ever say they are grateful for getting these jerks! But I understand… Your blood clot situation is quite scary.

      Do you think it’s possible that the anxiety you had about the pvcs contributed to the jerks? Did you have your hormones or thyroid checked to see if there is some underlying reason for the sudden onset of pvcs? Have you tried magnesium?

      Well, I’m not sure that you will react well to closnzepam if you didn’t react well to Ativan. Both are benzodiazepines and both are known to cause the same side effects. I would try magnesium if you haven’t yet, since there is a heart condition that may also benefit from it.

      Oh, and you mentioned being 46. Are your periods still normal? Perhaps there’s something hormonally wonky going on with some of the women I read about that suddenly get this. I’ve read about a few like you who were in their 40’s and suddenly got these. I’m 36 and not quite there yet… My issue is directly due to a drug reaction. I had an appointment with a regenerative doc many months ago who encouraged me to start progesterone for this jerking problem. If my situation was more like yours, I would have tried it (but because i know its a chemical imbalance from drugs, I’m holding off for now).

    • Hello Friends,

      First, thank you to the person(s) who set this blog up and to the people who have posted their stories. I have been an occasional reader for a little over a year now and very much appreciate what I have learned. Also, thank you to Stacey (posted on June 17, 2017) for getting me to post. I will be 47 in a few months, and seeing that you are 47 made me want to finally share my story. Or maybe it was because I haven’t been sleeping.

      Here it is. I look forward to feedback.

      On 10/31/15 — easy date to remember — I was in a car crash while sitting in the passenger seat of my buddy’s car, a mid-size Volvo. We were stopped at a red light. There was quite a bit of traffic. When the light turned green, we ended up moving only a few car lengths. As soon as we stopped, my buddy said “Wow I forgot how bad traffic gets over here.” I responded, “Yeah and then you have to deal with [name of our city] drivers!”

      And then BAM!!

      We got rear ended by a Land Rover, which was moving very, very slowly. What is the speed of a car moving just a few car lengths in heavy traffic? 2MPH? My head jerked back and forth so quickly that it seemed like nothing had really happened. I immediately felt dazed and disoriented, and, well, really pissed off. Turns out the guy driving had purchased the Land Rover that day and had literally just driven it off the lot. He said something about being high up and not being able to judge how close he was to us. Whatever man.

      A trip to the doctor a few days later ended with a whiplash diagnosis.

      The night of the crash, I had my first encounter with the jerks. I had no idea what was happening. I could not fall asleep as each time I started to doze off some part of my body would twitch. The first few months were absolutely awful. There were days when I was a complete zombie. Sleep wouldn’t start until 3 or 4 or 5 in the morning and lasted only a few hours.

      Some of the twitches were pronounced, the majority were and are subtle. The ones in my head were, and are, the most disturbing. The most pronounced happened in my legs. On a few occasions it seemed like they had gone straight up, as if the soles of my feet were trying to attach themselves to the ceiling. I was momentarily concerned about opening my eyes for fear of seeing someone at the foot of my bed who had lifted my legs up and dropped them.

      Roughly 20 months later, they continue. Around a year ago and for about three or four months, I was also getting them in the morning. I would be jolted awake and then unable to fall asleep again as the twitches would commence.

      I have been to a neurologist at a well-regarded university hospital twice. Both times he put me through a simple battery of physical tests, which I did with ease. He said he was not concerned about anything serious and saw no reason to, in his words, “hook me up to any machinery.” Klonopin was briefly discussed, but he said it was only a temporary fix.

      Ultimately, he thinks stress and anxiety from life in general are causing the twitches. No doubt, I am stressed and anxious, very much so and more than any other time in my life. However, the fact that the twitches started on the night my head and neck were violently jerked back and forth continues to occupy my mind.

      Could there be some kind of damage from the crash? Should I try to get an MRI? Some other kind of test? Suggestions are welcome. The neurologist also said he was reluctant to order an MRI because something unexpected could show up and add another layer of anxiety. Part of me gets this, part of me doesn’t. Thoughts?

      Since the crash and aside from the jerks, I’ve had tinnitus, a near constant desire to pop my ears, headaches, migraines, difficulty concentrating and a few other ailments. I am currently unemployed (roughly six months) and by all means feel like I am trapped in a downward spiral with no end in sight. Naturally I’ve read about the long term effects of whiplash and I definitely have them. This also makes me more inclined to believe the crash, as opposed to anxiety and stress, is what started the twitches.

      As many people have stated, it is difficult to understand where the impact of the bad sleep begins and ends. Did I quit my job because I’m slowly losing it? I seriously don’t know. There have been a few nights filled with tears and an ongoing sense (of dread) that this will never stop.

      The only prescription medication I have tried is Zoloft. I was on it for about three months. While it definitely blunted the raw edge of my psyche, which was a welcome and expected development, it did not stop the twitches. I had minor surgery about four months ago and decided to stop taking it.

      Side note: the oxycontin I was on for about two weeks stopped the twitches, but yeah, obviously can’t rely on that stuff.

      Herbal sleep aids seem to help, but they often leave me so fogged in the morning that I stop taking them.

      I live in a state where marijuana is legal. I started smoking it after the crash and have continued to do so. Sometimes I smoke every night for weeks, sometimes I’ll go weeks without smoking. It helps, but I do not like to smoke, just like I do not like taking pills.

      Recently, a little reading led me to CBDs. I bought some chocolates (Sensichews) with a high CBD content and they definitely help. I also started taking 1/4 TSP of hemp oil a day about a month ago after reading this:

      http://www.medicalmarijuanainc.com/myoclonus-medical-marijuana-research/

      Another side note: I ate these chocolates while taking the oxycontin and had absolutely zero nausea. Unfortunately, they didn’t lessen the constipation.

      I started meditating, which helps with my mood, but the twitches continue.

      I could go on and on, but that’s a decent summary. Hope whoever reads this is doing better than yesterday.

      • Hi M,

        I’ve read that chronic whiplash can cause endocrine abnormalities, such as lowering cortisol.

        https://www.ncbi.nlm.nih.gov/pubmed/16298068?dopt=Abstract

        A lot of people on here have had reactions to (whether positive or negative) substances like DHEA, prednisone, testosterone, etc. It’s almost impossible to articulate what exactly is going here or how these changes persist, but that may offer some explanatory potential for you.

        As far as treatment – the fact that opiates worked for you is very promising. Opiates essentially shut down the activity of the locus coeruleus (LC), the part of the brain stem responsible for sleep-wake transitions and arousal. I’d put most of my money on the idea that this particular structure is responsible for the zaps and jerks. The LC can become dysregulated by HPA irregularities, which may be what is happening in your case. If opiates work, clonidine should too (a substance used in opiate withdrawal). An over the counter opiate is Robitussin (30 mg works for me). So right there, if you’re not interested in being place on a single drug, for ideological or practical reasons or whatever, you have 5 days a week of sleep covered. Add in a different class of medication, such as a benzo, and you get two more nights of sleep. This is actually my routine.

        The migraines and tinnitus are concerning symptoms as well. That would lead me to suggest nortriptyline, which I really think at sufficient doses (say, 50 mg a night) should ameliorate the zaps and jerks for the same reason the opiates help, namely because of dampening of LC output. Nortriptyline in tiny doses is also used for tinnitus and migraines. 10 mg is usually enough.

      • Thank you for the response, I will definitely look into your suggestions. Also, my post showed up as a reply to Stacey. Didn’t mean for that to happen. Apologies if I should have posted in a different spot.

    • Stacey, do you think they started because of the Liver cleanse? I was doing them when mine started.

  2. Definitely think the anxiety about the pvcs contributed. I have had alot of blood tests for hormone levels and thyroid and they are all normal and not perimenopausal. I was taking magnesium and taurine for the pvcs when the sleep jerking started so I thought maybe that could have contributed to them? And I stopped taking them immediately but the jerking didn’t stop for about a month.

    And I’m not sure the jerking ever really stopped or the myrtazapine made me tired enough to sleep through them and now it doesn’t. When they came back in April I was taking magnesium again for the pvcs but have since stopped. I’m not sure I can take prosterone with the blood clot–all the dr.s I have talked to are anti hormones even bioidentical ones if you have a clotting issue.

  3. Anonymous said:

    TW,
    Wondering how it’s going with the Depakote?

    • Thank you for the inquiry. Was going to provide an update soon. After two weeks or so into the script, I definitely noticed a marked improvement in the jerks of my arms and legs, but was still having some twitches in my neck, head, face, torso as well as some brain shivers/waves (hard to describe) and even occasional disruptions to my breathing. The current 750 mg Depakote dosage has seemed to lose some efficacy recently, as I am having the arm and leg jerks return, but with perhaps less intensity than before. I am debating on whether to increase dose, taper off to try a different med, discontinue anti-convulsants altogether or a handful of other options. I’d much prefer to be putting my mental energy elsewhere. πŸ˜‰

      While the jerk/twitch/brain symptoms are still there for sure (last night was quite intense in particular) I am getting several hours of sleep or more per night the last couple weeks. Just as an FYI, DEFINITELY not a recommendation, I am taking the following before bed:

      – Depakote 500 mg (in addition to 250 mg in the morning)
      – Cyclobenzaprine (muscle relaxer prescribed for sleep – 7.5 mg – currently tapering down from 10 mg)
      – P5P -100 mg
      – Glycine – 1,500 mg
      – Organic India Tulsi Tea (one bag)
      – Acupuncture ear seeds as needed. My wife is an LAc trained in Chinese and Japanese acupuncture. This has really seemed to help on several occasions to get me over the edge if the symptoms are not quite allowing me to transition into the first sleep stage. Once I’m out, I stay asleep and fall back asleep quickly upon waking until morning.

      I take a few other standard supplements in the morning that have been recommended by medical professionals. They may or not have any positive effect currently or long term.

      Like most of us, I am not a fan of pharmaceuticals and would prefer to take no medication at all, or any supplements for that matter beyond maybe a probiotic and Vitamin D. However, I’ve been forced to experiment to find a med/supp cocktail that will provide some type of restorative sleep for the time being so I can perform at work and be functional cognitively and physically.

      I’ve read some of the recommended books here on this site including “Letting Go: The Pathway of Surrender” and “Overcoming Functional Neurological Symptoms”. Good information that I’ve been trying to apply that will hopefully help me at some point down the road. No silver bullet yet but I will admit that I’m far from expert in applying the teachings of these books.

      A few of the next steps involving a holistic-type approach:

      Although I eat very well currently, I will be working with a nutritionist in the coming weeks to optimize my diet and supplementation based on my recent labs (all looked fine of course), DNA/genetic testing, inflammation reduction, building a foundation for neurological healing, etc.

      I have several therapy/hypnosis sessions coming up to help me address the mental challenges that come with these symptoms and hopefully provide me with some tools to be more at peace with this reality. Best case scenario, the proper mental approach helps contribute to healing in the long term. I am trying to remain as positive as possible throughout this journey and definitely working to grow stronger spiritually through this process as well.

      Exercise. With some sleep recently, I am feeling like getting back into some strength training and cardiovascular exercise. Will hopefully be beneficial to the body and brain.

      Headstands and inversion. Potential benefits with virtually no side effects when done properly.

      I am a realist and understand that these efforts may be futile but I’d like to explore non-benzo or non-heavy-duty prescription options if possible before I throw in the towel.

      Seeing a neurologist and getting a sleep study performed is on the agenda when they can get me in but I am fully aware that the probability of any profound discoveries is quite low. Just want to cover all bases.

      I will keep you posted on my progress and please do the same. Praying and hoping for the best for you all. May we all find a path to healing.

  4. Anonymous said:

  5. Anonymous said:

    Anybody ever hear of an “alpha stim” device and have any opinion on it? I’ve had 2 doctors recommend it to me.

    • That looks very intriguing. Would love to hear your doctors’ thoughts, whether they felt the part of the brain that the Alpha Stim targeted could provide potential relief for the muscle jerks and twitches over time, or if they wanted to address the insomnia, anxiety and depression that are present as a result of our symptoms. Thank you so much for sharing!

      • Anonymous said:

        2 doctors originally suggested it for the insomnia I had and the anxiety the insomnia was giving me. I tried it a couple times in their office. Since the nighttime twitches/zaps/jerks started, they have suggested the alpha stim for those symptoms also. But I’m honestly terrified to try anything in case it would make my current situation worse. My doctor said she has used it for several patients with extreme night terrors/sleep walking and it has totally cured them.

    • Thank you for the reply and information. I understand your concern with trying new things in fear of exacerbating symptoms.

      What were your impressions during your Alpha Stim test in the doctors’ offices?

  6. Anonymous said:

    It was relaxing. But I don’t think you’re supposed to feel much change after trying it once a week over the course of a few weeks. The one doctor told me his wife uses it for anxiety. I spoke to the alpha stim rep in my area and she used to be in pharmaceutical sales. She experienced insomnia after a horrific car accident, started using an alpha stim, and liked it so much that she became a rep for them. She said 80-90% of people that she rents it to, end up buying it. So it sounds like it can definitely be beneficial for some people/ailments. Can it help what we’re dealing with, I’d love to know! It’s strange because on one hand I’m willing to do anything to help with the twitches/jerks, but on the other hand I’m afraid to try anything. I already feel like I’m on the brink with this issue.

    • I was prescribed an alpha stim for anxiety, but it unexpectedly got rid of my jerks completely for about three weeks. Then I guess I developed tolerance to the effect or something. Trying it again 6 months after not using it, it doesn’t quite have the same feeling as when I first started. It’s definitely worth a shot, but is a bit pricey at $800.

      • Anonymous said:

        That’s interesting! $800 would be worth if it would help. I’d give $80,000 to get rid of this problem!

  7. Tehmina Pirzada said:

    Hi friends
    I am 32 years old and started getting hypnic jerks. It has basically made life unbearable for me. Currently, I am on mirtzapine 30 mg and klonopin from which I have been advised to taper. My jerks began after a cold turkeyed from a low dose of Prozac. I had a bad cold and right after the cold turkey was put on a 7 day dose of prednisone and the jerks began
    It has been ongoing since March and my life is a complete mess. Now the neurologist wants to put me on Mirapex but I am too afraid to try anything and facing many sideffectd already from the klonopin taper. I would appreciate advice in this difficult situation.

    • What was the order of things when the jerking started? Prozac taper, bad cold, prednisone…at what point did the jerks start in all of that? Also, what did they prescribe first for the jerking and in what order? Are your current meds controlling the jerks that you can sleep? I haven’t heard one person on here report that Mirapex is helpful and many have tried. Sorry to hear you have developed these nasties. We can all sympathize as to how debilitating. Ughh!

      • Tehmina said:

        Hi Lisa,
        The prozac cold turkey started it i guess, but when i got the cold i was up one night and had severe anxiety. The next day I went to my gp who put me on a dose pf prednisone and then lunesta and it snowballed from there.

      • Did you try reinstating the Prozac?

      • Hi Ellan,
        My psychiatrist tried putting me on lexapro but my anxiety shot through the roof. He did not try reinstating prozac because he said it wouldn’t work. However, the neuro I went to said you should have tried harder to reinstat prozac. Now I am on mirtazpine and I am not sure of how it is contributing to my jerks. I am in a vicious circle.

      • People here tend to have bad experiences with mirtazapine (there are exceptions). Mirtazapine is unique among antidepressants in that it very strongly blocks alpha2 receptors – the same receptors that clonidine “activates.” So if clonidine helps your jerks, it stands to reason that mirtazapine would make them worse. If I were you, I’d try to get back on the Prozac. There’s no guarantee it will fix everything for you at this point, but to me that sounds like the most obvious thing to try.

      • Tehmina said:

        Elian, I have never tried clonodine. I am tapering off klonopin because my psychiatrist and neurologist both suggested it. But I am concerned/confused what i will do once I am off the klonopin

    • Dear all,
      I need some help and suggestions. My jerks started from a coldturkey from prozac and during the same time frame a course of prednisone that i was prescribed for a recurring cold. I don’t know what brought my bad luck (the prozac or the prednisone), but I am in this situation. I have been tapered off klonopin and mirtazpine that i was prescribed in the States. The klonopin even at .75 was giving me jerks. My new psychiatrist thinks they are anxiety related. He has put me on Paxil (an SSRI), an anti-psychotic risp, and lexatonil. I was okay with reinstating Paxil in the hopes that since this nightmare started after stopping prozac, the reintroduction of SSRI might help. I am deathly afraid, unrested for months, and in a third world country (after finishing my PhD in States) where this tragedy started. Currently, I cannot even take up a job because I am so unrested on most nights. My two old parents are looking after me. My dad is afraid to take me to the neuro for fear of neuro medicines, and the GPs here in Pakistan do not consider it a neuro issue. My new psychiatrist is a neuro-psychiatrist and feels that it is all anxiety related. I don’t know what to do and I am going down a rabbit hole from which I see no way out. As far as risp is concerned, it is an antipsychotic medicine, and I am fearful of the new complications it might give me. If there is anybody out here who can offer support, suggestions, or a viewpoint on these drugs, please, please write to me. I am tired of fighting this.

      • Tehmina – I believe it’s related to noradrenaline. My reasons for thinking so are all over this blog. The locus coeruleus is the noradrenergic center of the brain and is responsible for sleep-wake transitions, among other things, and mediates arousal. Spontaneous firing of these neurons at sleep onset is the best theory I have so far about the origin of our symptoms. Yes, an SSRI will indirectly and gradually reduce activity in the locus coeruleus. A more direct route is to take a drug that blocks the NET transporter itself, such as atomoxetine or nortriptyline. Nortriptyline also has sleep improving properties – atomoxetine does not, ostensibly, so the nortriptyline might be a better place to start and better drug for us overall. My doctor at the Mayo Clinic has been titrating me very, very slowly on nortriptyline. No results until I reached 30 mg last week, at which point the jerks stopped. However, I’m still “aroused” as I fall asleep, followed by the strange vertigo feeling; perhaps an additional increase in dosage will help, but I won’t know for several weeks, as I just reached 30 mg a week ago. Also, 30 mg is a very low dose. (The clinical minimum for an adult is considered to be 50 mg. The ID50 of the drug is something like 65 mg, and the maximum dose 150 mg).

        Also, the jerks certainly may be anxiety “related” in the sense that the locus coeruleus mediates panic and stress reactions, and dysregulation in that part of the brain is addressed by many antidepressants, although, paradoxically, for many people on here antidepressants are what caused the problem in the first place. I think very slow, patient, and steady titration is very important for the sensitive population on this blog, as is drug choice. Avoid 5ht1a agonists (trazodone, buspirone), alpha1 agonists, alpha2 antagonists (mirtazapine) – anything that acutely increases activity in the locus coeruleus. One other thing to be mindful of is that there may be “hiccups” as you titrate; it takes time for these things to work, and it can be hard to distinguish noise from signal. I really think nortriptyline is a good place for people to start.

        And personally I would avoid antipsychotics – the risperidone – like the plauge. If you’re not schizophrenic or bipolar, the side effect risks are far greater than most other drugs (e.g., tardive dyskinesia). Why didn’t your doctor just reinstate the Prozac? The other option is valproic acid, which I would take over the risperidone any day.

        I’m also 32 and just now finishing my PhD. Let us know how you’re doing. Good luck.

      • Tehmina – one last thing: an easy way to test the noradrenergic theory is to take a dose of clonidine or an opiate before bed. If the jerks are blocked, or their intensity reduced, you have your answer. If they don’t help, then I’m at a loss. At that point it would be worthwhile to try something a little more broad in its action, such as valproic acid, or possibly just return to the Prozac.

      • Thank you for your reply Elian. I am on paxil 40 mg now and taken off mirtazpine. Since Paxil is also an SSRI i am hoping that would work. What has worked for you so far? and would you mind talking to me over facebook, if that is okay? Clonzapam was working at 1 mg but I never stayed long enough on the doses (a week or two maximum) but keeping the awful things I am being put on, I think I am safer being on that.

      • Tehmina said:

        Elian,
        Both the psychiatrists think that going back to prozac is not a good idea. Do not know the reasons but i was told it wouldn’t work. Do not know the technical reason for it. And oh by the way congrats on being near the finish line of your PhD.

      • Hi Tehmina,
        You can email me if you have a personal question: elian8205@gmail.com. This is a dummy address that I only use for this site, so if you email me, you might want to give me a heads up here. (Generally though, I think it’s good to keep this stuff public so others can benefit.) Where did you do your PhD?

  8. I just want my sleep back, guys…4 days of no sleep made me feel suicidal today..My body was tense, my muscles ached, I was having jerks even of my eyebrows…I was up peeing at least 10 times each of the 4 nights, my heart was pounding heavily and fast, my pulse was at 96 even in the early morning, etc…I called the doc…taking my first Klonopin tonight.

    I don’t want to try anymore supplements…Depakote ER wasn’t a 100% solution for me, unfortunately. Just hope this Klonopin works for the jerks AND the sleep.

    • Hi Elian I would like to know any update about your situation. Would you like to chat? I am still in the rut and would like to talk to somebody.

      • We’re all in a Facebook group now called “Hypnic Jerk/Sleep Myoclonus Support.”

      • Hi Elian, joined the group and hopefully Therese will accept my request. I am on 40 mg of Paxil (an SSRI), tapering off mirtazpine, and taking lexatonil. I had a month’s rest, but the jerks are still there (and the medicines just conk me out and do not stop the jerks). I discontinued use of the risperidone as it was giving me terrible side effects. Doctors here simply consider it a psychiatric issue and I feel terribly frustrated. How is your treatment with antidepressant going? Are you sleeping well. I am tired of the weight gain and the nasty side effects from these meds and the HUGE quantities of anti-depressants that i am on.

  9. Anonymous said:

    Need some advice. Typically I take .5 Clonazepam before bed. I can always fall asleep on that dose. Sometimes I can sleep through the night on that dose, sometimes I need to take a little more in the middle of the night.
    Last night was horrific. I took my regular .5 and and kept zapping/twitching at sleep onset. Took another .5 and it continued. Took another .25 and still couldn’t get past the zaps/twitches to fall asleep. Had ONE ambien pill here from a long time ago and took it at 3am and finally must have drugged myself enough that I got 4 hours of sleep.
    I have no more ambien and am afraid this is gonna happen again tonight. Of course it’s a holiday weekend. My sleep doc doesn’t have an off-hours exchange number and my psychiatrist is out of town.
    Any advice?! Clonazepam has never failed on me in the last 2 months…and I’ve never had to tak more than 1mg.

    • Last night, I took .5 mg and the zaps continued. I also felt weird/agitated. I was frustrated and added another .5mg, I still got the zaps and I didn’t get knocked out (but I’m a severe insomniac…so nothing really puts me down, and not for long). I did this at 10pm. Finally, the zaps disappeared and the sleepiness kicked in…but at 3am in the morning…woke up 7:30am.

      I think for everyone, the dosages will vary. And of course, keep in mind there’s always a chance of tolerance. So you might want to take a few days holiday break from it and then try again.

      The ambien I’m nervous about, since it and elavil were suspected in causing my hypnic jerks in the first place. But I’ve been desperate before and took a Lunesta, which is similar to Ambien, to try to get past those jerks and sleep.

      Try taking Taurine (500 mg to 1500 mg) along with your Clonezepam. See if that allows you to keep at your maintenance dosage.

      There was someone on another board who used Taurine to taper off of Clonezepam/Klonopin with high success, and being able to do that without severe withdrawal affects.

      Similarily, you can try Taurine with Clonezepam to see if you can hold on to your desired dosage.

      • Anonymous said:

        Three nights ago I slept 7 hours with just .375mg of Clonazepam. So I don’t understand how things can change so drastically from night to night.

        I just can’t stop crying today. If Clonazepam is the only drug that allows you to sleep, and you build up a tolerance to it over time, then what do you do? I honestly feel like this condition may kill me.

    • Anon – I have to take 1.5 mg Klonopin every night @ 45 minutes before trying to sleep for the last 3+ years since this jerking started. That is my therapeutic dose. I work full time. I have a family with children. It sounds like I’m a Klonopin advocate when I comment on this blog (not the case). In some cases tolerance is an issue and withdrawal is nearly always horrific. However, I have tried many many combinations of various drugs and supplements with NO success while trying to avoid or get off of Klonopin. I have had other very nasty side effects from some of the other drug classes, mainly anticonvulsants and SSRI’s that were bad for me. Keep in mind this is the drug accepted and prescribed for this condition. Also, some people take Klonopin multiple times a day at 8+mg for other conditions. We only have to take minimal at bedtime. Until there is a break through with a better drug, or a way to heal this more naturally, I feel stuck.

  10. I get into bouts of crying as well, especially when I think about how 3 years ago, my life was perfect, my sleep was perfect. But try not to lose hope. It is hard not to. Try giving your body a break from Klonopin or the Taurine + Klonopin stack. Yeah, it might suck that you have to have a few days of no sleep and deal with the disabling hypnic jerks…but maybe that will be enough to allow your body to go back to your usual dosages.

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  12. Has anyone tried a course of tianeptine? It’s a French antidepressant not available in the U.S. (but legal to import) that reverses the symptoms of PTSD, like exaggerated startle response. Kind of a big deal actually, and unfortunate that it’s not sold here.

    • Anonymous said:

      No, but glad to see you back Elian! I feel like you’re a big source of hope on this blog!

      • Aw, thanks. I’m the eternal optimist. Although that wasn’t exactly the case when I didn’t have a way of dealing with the zaps and jerks.

        I’ve been following the postings on here just a little bit. I was in a forest for a few weeks with no cell coverage and spotty internet access. Really good for me, actually.

        So just want to remind people that klonopin isn’t the only answer; you’re not backed into a corner Strattera is absolutely worth a shot. I’m back on nortriptyline 10 mg, which worked for a bit. Going to try 20 mg and see where that gets me. Also, even a tiny dose of Adderall is worth a shot, like 5 mg (if you have ADHD this may help you sleep; if you don’t, I’m not sure. The dose is extremely low.) Prazosin and clonidine, again. I’m sorry to see that the Robitussin didn’t work for some people. It might be worth trying a little more, say 60 mg. I see to be quite sensitive and tend to fare well with low doses of things. Also sad to see that Depakote didn’t work out for P Lee, although I’m wondering why you were on such a big dose of extended release? Some people can get away with 500 mg for treating bipolar. 1000 mg is too much to start with, and brings you into side effects territory. I’d start with 250 mg IR. And then I’d give it at least 2 months, since a lot of its effects will come on gradually and strengthen over time.

        It’s been helpful for me to imagine that I’ve had this all my life. That I was born with it, and I simply have to take meds to deal with it. In a way, we are born with it, in the sense that we represent that small, unfortunate part of the population that develops this from meds or stress or what not. There’s despair in not sleeping, but also in feeling that you’re incapable of something that seems most natural and most human – getting a good, well-earned night’s sleep after a long day of work. It’s also worth remembering that something like 25% of American adults have chronic insomnia.

      • Sleep apnea or other sleep breathing disorders are one cause of chronic insomnia. Many of the people suffering from it either don’t know or aren’t interested in the band aid fix treatments.

      • Indeed. My father stubbornly snores his way toward an early death. But, he has that right.

  13. Hey Elian,

    Not sure why the doc put me on such a high dose, but I only did 500mg/bedtime since I am always sensitive to meds. It was at this dosage that I broke out in a rash. Not sure if it was due to it being in my body for so long since it was extended-release, as opposed to the delayed-release form that you mention, or if it was simply due to the fact that I am allergic to it (since there have been reports of a rash with Depakote use). If I get the courage to re-try, I’ll ask the doc for Depakote 250 DR versus ER.

    What I’ve been doing since the Klonopin is this:

    Day 1: Klonopin

    Day 2: 1000 mg Taurine; 1000 mg Glycine; Wulinshen (purchased powder and filled in empty 00 capsules)

    Day 3: Klonopin

    Day 4: same as Day 2

    Day 5: plan on using Klonopin

    Since Klonopin has a long half-life, I am trying to supplement every other day with something else, to try to prevent tolerance. And I find that the effects of Klonopin (just the reducing hypnic jerks, not the sleep-inducing part) seem to last through to the next day for me.

    This will also buy me some time to figure out what would be the best routine for me in dealing with the jerks.

    Something you might be interested in is agmatine. Not sure if you have already researched it. But it is an amino acid that has very similar properties to Clonidine:

    https://www.ncbi.nlm.nih.gov/pubmed/7906055

    I have made the purchase and will try it and report back. I’m not suggesting that others do what I do…simply listing what I’m doing so far.

    As with pharmaceuticals, any supplement, even amino acids, play around with your neurotransmitters, so you want to be careful with them as well.

    I take a daily multi-vitamin and b-complex every morning. The above are my nighttime supps.

    • Nice, sounds like a good routine. I’m glad you’re getting some sleep, finally.

      Never heard of agmatine, so thanks for turning me on to it. Looks really really interesting, and maybe even promising. I’ll give it a shot.

      Any just to throw it out there again, tianeptine looks like a really interesting agent. Google it, look for experiences on Reddit.

      • Yeah…I also think that tianeptine would be worth a try. But right now, I’m focusing on etizolam as a substitute for the klonopin. In Japan, you can get it. We have a family trip this year, and I hope to get a 90-day supply of it for trialing.

  14. Anonymous said:

    Read this article today. It has nothing to do with our sleep disorder. But it gave me hope to keep searching for a solution. How awesome to find a doctor like this one that is willing to keep trying and experimenting until you find a solution.

    http://m.startribune.com/the-nightmare-has-finally-ended-for-a-st-cloud-schoolteacher-cured-of-a-rare-sleep-disorder/428732063/

  15. Anonymous said:

    Mary, if you’re still checking this site, wondering how you’re doing?

  16. Hope you get the problem resolved soon.

  17. Hi all – it would be useful to know how many of you have autoimmune issues. Also, I’m curious about the kinds of “hallucinations” people experience in tandem with the jerks at sleep onset. Like auditory, tactile, visual, anything…

    The reason I’m asking is because I’m starting to wonder if this condition isn’t related to narcolepsy, or represent a form of it. Hypnagogic hallucinations are common in narcolepsy. A hallmark of the condition is entering directly into REM sleep at sleep onset, rather than passing through NREM sleep first. For narcoleptics, the hallucination often ends with a muscle spasm.

    In other words, the more meaningful symptom might be the immediate REM sleep, rather than the jerking itself.

    When I went through my mirtazapine ordeal and ended up with more or less permanent nightly jerks/zaps, I also had an autoimmune reaction – my ANA ratio went up to 1:320. There is a lot of literature on narcolepsy as an autoimmune condition now.

    • Anonymous said:

      I’ve also read that about going directly into REM sleep with narcolepsy and wondered if that’s related. Would a quick entrance into REM sleep show up on a sleep study though? I have relatives with narcolepsy but not with the condition we have. I do not experience hallucinations. Just “surges” (either in my head or chest) and/or a muscle spasm.
      I do not have any autoimmune issues that I’m aware of. However I did just have the MTHFR test and it came back heterozygous positive.

      • Hi everyone

        Reading Elians post about his ANA being elevated on the onset of the twitches made me want to post.

        Basically Ive been reading about autoimmune induced movement disorders, namely PANDAS and PANS. Please search about it. Basically it is an autoantibody developed during a streptococcus infection that now cross reacts with the Dopamine D1 receptor in the basal ganglya. The idea is this would induce psychiatric symptoms, such as apathy, amotivation, tics, tourettes, movement disorders, etc, basicaly anything related to aberrant dopamine signaling.

        The fact that high dosages of omega3 are anecdotally reported to stop the myoclonus makes me further wonder if what we are looking at isnt actually an autoimmune/autoinflammatory condition that can be relieved by reducing inflammation throught the vagus nerve, which in my research I found to happen through D1 receptor stimulation (again D1).

        This makes me wonder about medicines that:
        – Activate vagus nerve: 5ht3a blockers, alpha 7 nicotinic receptors, like Vortioxetine and galantamine.
        – Dopamine agonists namely of D1.
        – Electroacunpunture of the sciatical and vagal nerve.

      • I also wonder about huperzine A.

        Huperzine A is now show to exert antimyoclonic activity through muscarininc and GABA receptors but in a different fashion from conventional anti epileptics.

        If you will try it just be careful with taking too much huperzine

        I had tried tianeptine but while i felt good I cant report on twitches. all i know is it made my insomnia even worse.

        any opioid will help the immune system so thats yet another way this idea could be right.

        anyone tried low dose naltrexone?

      • My ANA was a bit high but this was during my diagnosis of m.s., before the hypnic jerks came about. I’ve tried LDN, but this was also for my m.s. at the time, and not for the jerks. I stopped the LDN because it was causing me insomnia (when I didn’t have insomnia at the time).

        Now with my insomnia and hypnic jerks, I have tried many supplements and a combination/variation of them. I have used tyrosine for the dopamine connection (thinking the jerks might be related to RLS at the time) and it didn’t help my jerks. This does not mean it won’t help others, though.

        Right now, aside from the thrice a week klonopin, the supplements that seem to relieve me of the jerks (just suppress them, not resolve them) seem to be the amino acids agmatine (at 650 mg) and beta-alanine (at 750 mg – any higher and it becomes stimulatory for me). I couple them with Wulinshen (GABA support) at night.

        I am looking at the possibility of NMDA antagonists as being what is helping me, although you would think that Robitussen would help (which it didn’t in my case) if I were to look at this angle. Taurine became too stimulating for me at above 500 mg and didn’t seem so helpful any longer. Magnesium is purported a weak NMDA antagonist, but it aggravated my hypnic jerks more so. So who knows at this point. I’m constantly trying to make sense of what doesn’t make sense to me…lol.

        I also am one to develop tolerance really quickly to any supplements or medications, so I am always on the lookout for various supplements that would help with the hypnic jerks and insomnia to use in the rotation.

      • P Lee,

        tyrosine is very far away from activating any dopamine receptor. It needs to be absorbed, go through the BBB transporters, competing with other aminos, needs to be converted into dopamine, the dopamine needs to get into the vesicles, that need to travel to the axon through and be released in the extrasynaptical space and that finally will do some stimulation of the post synaptic and presynaptic receptors of the at least 5 kinds of dopamine receptors. And you still have different dopamine receptor effects in the different brain tissues.

        so using tyrosine and hoping to get some dopamine effects is not ideal by far.

        also the other problem is not that you likely wont have enough dopamine already in the vesicles, but that there is a disregulation of the homeostasis. this would mean there could be dopamine synthesis problems, but also DAT and/or receptor problems.

        A drug goes directly to the receptors or DAT or VMAT.

        In any case, Im saying is that this is probably being caused by immune system. I can also feel identified with early REM sleep but I did put this aside some time ago because changes of altering the sequence of sleep architecture were very very slim in my research. Im not sure of the specific autoantibody, Im just guessing about raising D1 activity as being an effective way to reduce inflammation through the vagal nerve, which anecdotally seems like the way activation of vagal nerve works.

        I cant trial galantamine because Im in europe. So i will have to go with huperzine A. If someone could trial galantamine please post back.

        P Lee if you already have MS, you might want to do period fasting mimicking diet. It seems you already are prone to immune system issues, and fasting regenerates immune system as well as promote remyelination.

      • Hi XP,

        Okay…When I see my doc, I’ll see if I can get on galantamine and trial it.

        I’ve done a period of fasting. But for me, it caused more problems. Don’t know why, but it didn’t feel helpful in my case.

        But yeah, I do have immune issues, and think that is partially why I am more proned to these hypnic jerks, although a med triggered them.

  18. Hi guys,
    Sorry I haven’t updated. Here is what is going on with me. This is going to be a long post. I think I have found some answers. Or at least I am working stuff out. I have been in such a dark place these last two months with this sleep jerking. When I posted a while back in early June I had a week of no jerks on .125 of clonazepam and so I decided to stop taking it. For two nights I felt normal and was jerk free. The third night was horrible with jerks. I then went on to have three nights with no sleep. Until I saw the dr and he reinstated .25 clonazepam with 300 gabapintin. I guess with the hopes to withdrawal from clonazepam. The gabapintin was horrible and I jerked really bad for three days. So I quit that and started with .50 clonazepam at night. It was like it reeved up my jerks. I stayed on .50 clonazepam for two weeks then dropped to .375 for two weeks. I then got drop happy and dropped to .125. That didn’t go well I didn’t sleep for 4 days. But was resolved to tough it out. On the 4th day I decided to go up to .166. I did .166 for 4 days then went down to .125. I was good for two days on .125 then the third day no sleep. But the fourth day I held and slept on .125. Then I did an stupid thing and dropped to .083 the next night had no sleep. So last night I had to take .25 with is a half a pill to sleep because I just couldn’t face another night with no sleep. I know I was an idiot this month and dropped my medicine to fast because I so desperately want to be off of it to see if I can be jerk free. I know I need to go slower so I won’t have withdrawals. I think all these drops so fast is messing my brain up. I am going to try to stay on .166 for a while. Until I work out what is causing these jerks.

    Here are the things I know and have learned so far about my awful jerking.

    1. When I have a bad night on the medicine (meaning I jerk really bad and can’t get to sleep or only sleep a few hours) it is due in part because I ate meat and or had an alcoholic beverage. So I have definitely given up meat and alcohol. The the third night I was off the medicine and started jerking so bad that night I had gone out with friends ate meat and drank two drinks. I believe glutamate plays a part in this jerking for me. Coffee lowers gabba and increases glutamate. Meat has a ton of glutamate in it. That could be one reason my brain is messed up. I also now know that dropping clonazepam at .125 is dumb and I should of held there for awhile then dropped again.

    2. I also think it’s hormonal too. Coffee messes with your estrogen levels. This last cut I made I unwittingly did the day before I started my period. I noticed that the jerking is bad the day before I start and the day I start

    3. C02 levels in the brain. Coffee converts o2 and c02 levels well and it is why athletes use it before they race. Lately, I have felt I can’t catch my breath and the night the horrible thing happened. I was dealing with extreme anxiety from quitting coffee and I had a mini panic attack where I was crying so hard I couldn’t catch my breath. When I finally went to bed I started jerking and have done so every sense. I have been in a state of constant panic because of this sleep disorder that I might me hyperventilating unwittingly all day.

    3. Coffee screws up your cortisol levels. The stress and anxiety of this disorder has caused me to have my cortisol levels totally screwed up.

    4. I remembered that two years ago I hit my head on ice. Had a really bad concussion for a month. I had this weird snore everytime I tried to sleep back. For one whole week I couldn’t sleep because my body would wake me up with that snore. It finally corrected. I had no idea what it was back then. But now I know it was a sleep jerk.

    I believe our brain has been damaged some way and we have to figure out how to heal it. I turn 43 on Tuesday of next week and I can’t believe the state of my life. One day it was wonderful now it is a nightmare. My husband and kids are scared I’m scared. I just want to be normal again.

    • Anonymous said:

      Mary,

      Can’t remember your story… Did this start from too much caffeine or am I thinking of someone else? Did you add clonazepam after the jerks started? You suspect high glutamate is contributing to your problem. I believe the same in my case. Keep in mind that clonazepam down regulates GABA and increases glutamate.

      • Yes it started from caffeine withdrawal. I was taking 8 espresso shots a day and eating a bar of chocolate. I quit cold turkey like an idiot for Lent. Dr just did and intensive blood panel on me. Hoping to find more answers. He definitely thinks it’s brought on from coffee withdrawal now I just need to level out. But I can’t go with sleep not with all the things I have to do for my kids.

      • Yes I started clonazepam after jerks persisted for two weeks.

    • Anonymous said:

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1572268/
      This article states that serotonin inhibits the release of glutamate and it also can inhibit events triggered by glutamate release. The drugs mentioned in the article that could possibly help to inhibit glutamate release are Trazodone, SSRI’s, and a drug called RO 60-0175.

    • For the last 8 weeks, I have been working with an alternative medicine Dr who did a test called nutri eval (something like that) that gets sent to Genova Diagnostics. It’s a blood and urine sample. It’s a long report with complicated data that the Dr interprets but gives a lot of information about very specific blood content for different levels of many things I’ve never heard of (but some of you medical folks have) that can potentially be caused by various imbalances. As a result, I am currently put on a no wheat, no dairy, no soy diet…multivitamin with high B & D supplement, Taurine, Mag glycinate, and fish oil. All supplements hypoallergenic. Also have to eat at least 4 servings of fruit/veggies each day and flax seed everyday. Feeling much better overall and way less jerking. Still taking clonazepam but it is working better so hopefully can decrease the dose. Also the test did indicate higher levels of lead and mercury which is weird because I don’t eat fish and I’m not sure how I would have lead exposure. Mary – There was some level that showed up when your body can’t digest meat correctly. Also, my estrogen levels are messed up. I was in a car accident and have a neck injury. Sleeping on my back makes jerking worse if not impossible. Alcohol also makes mine worse so I cut that out too. Just wanted to report some similarities and about the test. Thx for your post.

  19. For got to add
    Magnesium is depleted when you are a heavy coffee drinker. So I know my mag levels are off. However when I take mag it makes me jerk worse. I have an appointment this morning with my internist. Going to have him run mag test and a bunch of others.
    The main thing I think causes this is extreme stress. It’s just getting your body to level out. But these jerks are such a vicious cycle because they cause extreme stress.

  20. Mary, good to hear you’re making some connections. I started with this about the same time as you and am also taking clonazepam (and also HATE taking it!). I haven’t made any connections yet as to what makes the sleep onset problem better or worse. Some nights I take the clonazepam and have a good night, and other nights I take it and still have a terrible night. I have seen a sleep doctor and sleep neurologist. Both stated they have never seen this issue before…at least not to this degree. So so so disheartening to hear. I can relate exactly to how you feel. I too have been in a really dark place these last few months as this has turned my world upside down. I have 4 small children so trying to “tough it out” and go with no sleep is not an option for me either.
    Although many of us have a different story about how this issue started, we are all dealing with a serious (and for many of us debilitating) sleep onset issue. Each of us is doing our own medical research trying to solve this mystery ourselves through supplements, medicines, therapies, etc. I believe if we want to make any head way on getting the medical field to help us with this problem, we need to find a doctor who takes a particular interest in this problem, and as many of us as possible need to go see him/her.

    • T-You are so right!! Need to somehow band together and maybe a Dr or facility will take it on as a problem in itself instead of ruling it out as a symptom of something else. It is it’s own problem!!

  21. Hi all –

    I think T’s suggestion about finding a single doctor or department for everyone to go to is very good. But how far are people willing to travel? I’ve been seeing two doctors at one of the Mayo Clinic locations for almost a year now for this problem. If someone were to make an appointment in either department, that would just organically lead the doctors there to consult about different patients with the same problems, which is how these programs work. I don’t think the effort can be much more coordinated than that, at least initially. Anyone want to call Mayo?

    • Elian-I am already a patient of Mayo…would like to schedule with your doc or at least get a second opinion with that person/write a letter/something to have someone look into the similarities of both cases. I also had all my neurological and sleep study at Mayo. Thx for this suggestion.

      • I would also be willing to travel. I of course will also need to look into my insurance about receiving services out of state.
        I really think we’re running into dead-ends by being the “one” patient doctors have seen with this issue. It makes it easier to hand us Clonazepam and send us on our way. If a doctor sees 5 or 10 or 15 patients with the same mysterious issue…well I think that’s where we gain some power in finding a cause/solution for this issue.

      • In the meantime, anyone ever tried “ozone therapy”? My functional medicine dr suggested and I think I’m gonna try it.

      • I haven’t tried but I did see you can buy a somewhat inexpensive unit online for home use. I will keep this in my list of options.

      • I’ve been going to the Mayo Clinic in Arizona. My doc checks on me every two or three weeks or so, and we adjust things and/or try something new. Lisa – how did things go at your Mayo appointments? Do you have regular visits?

      • My Mayo doctor is in Rochester, MN. I’ve had several visits but not for awhile (about a year). I’ve not scheduled any appointments recently because the treatment plan they came up with is Klonopin…nothing else was suggested. Also, interestingly my twitching is worse with opiates. I was prescribed IV fentanyl after a surgical procedure and it exacerbated them awful for some reason. How is it going with the nortryptaline? Does that seems like a good med for you to use consistently to make them stop?

      • Hey Lisa – the nortriptyline has been very good for me so far, but I’m still early in the treatment. I got to 30 mg last week, which has allowed me to drop my clonidine dose from 0.2 mg to 0.1 mg if needed. During this time I’ve also been doing resistance training, which usually exacerbates the twitching to no end, but now they’re manageable. The nortriptyline is also helping my anxiety. Apparently continued improvement can be expected for months. Again, everything has to be done slowly, and it can take a while to find out if a treatment is right.

        Hearing that the fentanyl exacerbated your twitching makes me want to throw my arms up in the air. Perhaps there are different pathways in the nervous system for this problem for different people: between clonidine/opiate-responsive and non-responsive groups. On the other hand, IV fentanyl has a very short half-life, and is usually only administered during a procedure, I thought. It’s extremely potent. Perhaps you were already in a withdrawal state when you tried to sleep in the hospital?

    • Elian,
      Has your doc at Mayo seen this issue before in any other patients? Does he/she come up with different things to try or is it mostly you coming up with the ideas? I need a doctor that is going to keep coming up with ideas to trial (besides klonopin) because I have no idea what I’m dealing with here. I’ve quit calling it hypnic jerks bc that doesn’t even seem to accurately describe it. I just call it my “sleep onset issue,” bc half the time it’s a twitch, but half the time it’s some kind of internal surge that jolts me from falling asleep.

      • Hi T – no, not to my knowledge. The ideas are from me, or at least this doctor allows me to think that’s the case. I’ve seen a handful of “big wigs” and nobody, absolutely nobody compares to this particular person’s level of compassion and patience. (Sorry to be gender-ambiguous, but I’m still concerned about my privacy on this public blog). The nortriptyline is helping for now, but perhaps it will stop at some point, or perhaps it will gradually improve everything. That’s really what the doctor is for – clinical sensitivity and intuition about whether to stay on a particular course or make a change.

        My symptoms are just like yours – either a twitch or a “surge.” The best thing you can do, I think, is to find out if you’re a clonidine/opiate responsive person. Also, this article suggests that baclofen would also help people in that group:

        http://www.sciencedirect.com/science/article/pii/0014299988900611

      • Elian, I understand…it would be easier to share things if this wasn’t a public forum. I do see a lot of similarities b\t your case and mine. Although Robitussin didn’t do anything for me.
        The compassion and patience from your doc is awesome….I guess I’m just hesitant about making the commitment to do all the traveling and work to go to your doc at Mayo if she’s not actually coming up with treatment ideas and she’s more less following your lead.

      • It would be nice if a research hospital would take us on collectively as a case study. Most of us have the same symptom(s) and have had all the exclusionary testing for other serious conditions.

      • Hi T – to be fair, one of the reasons this particular doctor is so great is that they recognize, I think, that I’m the kind of patient that wants to have a say in things and wants to be involved in the treatment process. The kinds of ideas I’m coming in with – clonidine, nortriptyline – are well within the orbit of reasonable treatments to try on a person with a sleep disorder. The fact that they helped has given the doctor valuable knowledge, and should they eventually fail, then we’ve still established a trusting relationship and can proceed with new ideas without groping around in the dark.

        The fact that the Robitussin didn’t work for you doesn’t necessarily mean you’re not in that “clonidine/opiate/baclofen” responsive group. The Robitussin doesn’t always work for me either, and it’s a rather weak opiate anyway.

        Lisa – case studies develop organically through experience with different patients. If we all show up to Mayo (in Arizona, in my case), the doctors will communicate about patients with the same problems. That’s just how these programs work.

      • Elian – I am well acquainted with Mayo Clinics. Respectfully, it would be an incorrect assumption that because many of us have been seen at one of their locations for a similar set of symptoms that a case study will be forthcoming. They are certainly good at integrating various specialties and teamwork within departments to focus on overall patient health, however, I highly doubt that through “chance” we will be identified as an underserved collective.

      • Thanks Elian. Do u plan on staying with ur current doc long-term? I know u said u were still in school. If you’re gonna be moving in the near future and getting a new doc, it probably wouldn’t be very useful for myself and Lisa and whoever else to, try to consult with ur doc. I think there’s strength in numbers when it comes to getting docs to help us with this condition.

      • T – I would have to agree that even as a group (50?) including every person that ever posted on this blog, even then, there would be a very slim chance to have any medical facility/medical school take up our cause to actually fund some type of case study. There is one that I know of a number of years ago done by a University in Bologne Italy. On the other hand, if the idea is to just generate interest in our cause and be connected to 1 provider that is willing to experiment with various drugs and theories…maybe that would be a step in the right direction. Elian – I don’t completely understand your need for anonymity or the need to keep your docs name private. Perhaps you think if that person was inundated with responses, that he/she would be overwhelmed or you would some how lose the exclusivity/relationship that you currently have with that provider that’s allowing you to call the shots and they write the scripts? Your info is helpful and appreciated so I don’t want to offend you, I’m just trying to understand.

      • Hi T and Lisa – I’ll be here for a while, at least a year, probably longer. And I can stay in the care of this doctor wherever I end up eventually. I’m protecting my privacy because this is a public blog – everything posted here will be in the annals of the internet for all of eternity, and that bugs me a little – it just does. The other reason is that I’m skeptical that anyone will actually come to Arizona to get help with this problem. If I’m wrong, however – that is, if you guys are really interested in visiting this doctor – then lets start a private google group and get to know each other a little less casually/anonymously. I’d be much more willing to share information if it weren’t posted publicly.

      • Is TMWCS still the admin? Is there a way to delete or make private any posts on here?

      • Elian,
        I’m on the extreme side of cautious when it comes to protecting my privacy on the internet, so I understand where you’re coming from.
        Lisa, I agree that case studies cost money so I don’t think we should be aiming for that. But like you said, having one provider that has several patients with the same symptom and can compare what is/isn’t working with them, that’s where we might be able to make some positive steps.
        I don’t know how to start a google group but will look into it. I’m not saying I’m gonna book a flight to AZ tomorrow, but it’s definitely something I’m gonna consider and look into.
        In the meantime, do u think it’s out of the realm of possibilities for doctors from different hospitals/states to talk? My doc seemed open to making phone calls to other sleep docs (apparently she has a connection to one at Harvard) to try to find solutuons for me.

      • I’ve communicated with Elian thru email. That’s another way we could communicate more privately.

      • Oh, T for Therese? See, this site makes things so confusing.

        Lisa – google caches the entire internet, like, everyday. Maybe it’s not that frequent, but it’s often, so the end result is that nothing is ever “deleted.” A google group would be a great option I think. I also think this blog has outlived its usefulness anyway – it’s really hard to dig out information, and we constantly have new people asking questions that have been answered before. I’ll look into creating one – but again, are you serious about actually coming to AZ? Who was your doctor in Rochester?

      • I have a regular neurologist and a sleep neurologist. If we are starting a private group, I’ll wait for that to disclose names. I would like to know who (if anyone?) is currently admin to this blog. Is TMWCS still involved?

      • I would be more inclined to request a second opinion/review of my records from your doctor in writing. I know they are sometimes doing Skype type appointments too which might work or I could travel if needed. Have not thought it all out entirely. In my ideal world, a doctor somewhere would be so interested/perplexed by so many people having this, they would maybe entertain the idea of receiving our personal experience by email or letter to review and then have some suggestion as to what we can do, who to contact, or where to go together for a more streamlined diagnostic and or treatment option. I’m just not sure how that would work for any 1 provider because of liability and payment reasons or for us because people on here are all over the globe. I would say letters to the sleep department chair person at a well known/respected research facility at some agreeable place may have a slim chance. I don’t know.

      • Yep, that’s me. πŸ™‚ I agree this blog is really hard to follow. Do you think a google group would be better than doing a closed/private group on Facebook? There seems to be a lot more people suffering from this condition than the few that comment on this blog.

      • Elian or T – Do you see an advantage to using a google group over a closed FB group? I’ve never used google for group exchange.

      • I was wondering if we could reach more people with this condition if we did a closed FB group.

      • Just send me an email: elian8205@gmail.com. This thread is already getting hard to follow.

      • I started a closed FB group called “hypnic jerk support.” I don’t want to take away from all the great convos on this website, but I find this blog hard to follow and to respond to people. Maybe we can find more people, ideas, suggestions of medical professionals, etc, on FB.
        Only members of the group can see the posts. If you’re concerned about privacy, make a FB account that doesn’t use your real name.

      • I think it’s a great idea. I’ve joined.

  22. Anonymous said:

    Hi folks ,
    Just to give a bit of hope to everybody.
    My jerks began after tapering off alprazolam. I took some other meds afterwards like nortryptiline and mirtazapine but decided to give them up as well as I noticed no effect upon the jerks. I then tapered them too and decided to not take any meds any more. This was 1 and a half year ago.
    The first couple of nights after that were terrible. Almost no sleep, some nights I only slept for 1 hour or so.
    I decided to see a naturopath , a doctor in Chinese medicine, and he prescribed me some chinese herbals for my condition. Chinese medicine sees the body as a whole, so each herb is custom prescribed, for that reason I cannot recommend you this or that Chinese herb, but if you are interested I would advise you to see such a specialist in your area.
    After one year, more or less, I got better and was able to eliminate the Chinese herb, and nowadays I have this problem only occasionaly. I then take catnip and I can sleep. If it doesn’t go away for some reason, I then take P-5-P (enzymatic form of B6 vitamin).
    But these events are getting more and more rare, thank God. And that’s what I wish everybody here, that this terrible condition will eventually become only a distant memory of a difficult time. God bless you!

    • It’s so good to hear that you found resolution to your jerks via Chinese medicine. I’ve been to several Chinese medicine practitioners, and I think the most important thing is possibly to find a knowledgeable one. None of mine were able to help me. But I have gone on my own and through research and experimentation, found some herbs to be of benefit. I am hoping through time, I will also be able to heal myself through a combo of chinese herbs and amino acids as well as, certain vitamin supplementation.

      For example, yesterday I used at night: agmatine, glycine, wulinshen, jujube extract, and P5P. I had one jerk and was able to sleep for 3 hours. This may not seem much to the normal person, but for me, it is awesome progress since I’ve gone for a year and a half with 0-1 hr of sleep a night due to these hypnic jerks.

    • would you mind sharing the name of your dr?

    • Thank you for giving us hope. It is so nice to hear that people do recover from this.
      Will give the p-5-p and catnip a go. Could you give us a clue as to what chinese herbs worked? I have been recommended a lot of things by a lot of people that don’t really understand this condition. It would be nice to learn what worked first hand by someone.

  23. Hi! I’m so glad someone led me to this site!
    I have a lot of reading to do! This hypnic jerking debacle started for me in 2003. It’s been a long windy road. Started after I was given two bags of IV steroid. Then it stopped but would start after trying some medications for Lyme. Then it became complicated by an anticholinergic issue- anything water sparing. If I didn’t jerk, my mouth and theist had sudden parching. Salt would worsten it. Then I had intermittent ADH (diabetes insipidus) spring the night. Yikes it snowballed and I had some adrenal crises. Those are gone, the parch-wake is gone.

    I want to share what I created in 2014. I hope the chart will attach. It reflects my (un)scientific research on things that can underlie hypnic jerking and anticholinergic intolerance. I connect infections and drug reactions to disrupting RAAS (Renin, Angiotensin Aldosterone System), impeding angiotensin conversion. (I say unscientific as I’m not a medical practitioner but a psychotherapist).

    Experts say the jerking experience is innocuous and remains a mystery. They say that hypnic jerking is as innocent as a hiccup. A benzodiazepine can quell it, so why do we need to look further? We can blame it on anxiety/mental illness. There is no research funding put fourth to study it to address solutions.

    I have found that re-mineralizing for folks with interrupted angiotensin conversion needs to be so fine tuned so as to not disrupt delicate balance.

    • Anonymous said:

      Tracy,

      Your chart didn’t attach.

      You’ve had this for a long time. How bad? What meds have you taken? Anything currently?

      • Hi! I just requested a join to the FB. I can’t seem to attach a document here. My HJ’s started in 2003, went away, came back a few months later after trying a medication to treat Lyme. Briefly went away and then I can’t recall what prompted them to return. Bad enough to prevent sleep altogether. I had been treated prior to 2003 for an adrenal condition I supposedly didn’t have, with steroid and a diuretic. After I stopped them I had adrenal crises. I was put on Valium to stop the jerking. (A sleep study reported 200 something jerks prior to administering diazepam).

        I’ve tried a lot of treatments. I’m not on any medication now. 7/10x, taking concentrated electrolytes allows me sleep entry. I also am on a mineral protocol (tailored Morley Robbins root protocol).

        Thanks for your questions and for everyone sharing their stories. I look forward to connecting on the FB group.

      • Anonymous said:

        Tracy,

        Thanks for answering. How long have you been medication free? How much sleep do you currently get?

  24. I hope you are making cash off this website Certainly a lot of stuff to take into consideration. In my view, if all webmasters and bloggers made just right content material as you did, the web might be a lot more helpful than ever before.

  25. What if we’re just deficient in potassium…?
    I doubt anybody here is meeting the RDA of 4700mg a day.

  26. Hey everybody,

    Just checking in with you all as it’s been a little while. I wanted to see where everyone is at with this, how you are coping, and if you have made any progress learning more about this condition.

    For me, I still get a jerk or two most nights but it hasn’t been too hellish this year. I am pretty used to it and it isn’t wiping me out the next day like it used to. The most unpleasant thing for me is the trembling I get for a few minutes after I am woken up. It seems to take a few minutes to calm down and then I usually sleep just fine.

    When we go on holiday and stay somewhere with a really quality/comfy bed I tend not to get any jerks at all.

    Getting enough sleep for a few nights in a row seems to prevent them, which makes me wonder if chronic lack of sleep quality has something to do with it.

    I regularly have neck/shoulder issues, including a ball of muscle tension around my left collarbone that never seems to go away, and some pain just below my left shoulder blade that is always there in some form. I am a side sleeper and finding the “just right” bed situation is quite hard for me.

    Sleeping with a neck support pillow seems to make things better with the jerks – I have heard of situations where an ongoing neck injury can cause your spine to jut into the surrounding muscle which can trigger your body’s fight or flight system (i.e. “don’t fall asleep, you’re injured”) so I often wonder about that, but don’t know much about it.

    My only other theory at this stage is that it’s something to do with my stomach, i.e. my body is starved of a certain nutrient for some reason beyond not getting enough healthy food. Perhaps a gut bacteria thing – anyone else thinking something like this?

    Hope you’re all well!

    Jimbo

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