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.

765 thoughts on “About”

  1. the difference between isaacs and morvans syndrome is that morvans starts slow with the jerks or the sleep starts at the beginning of the disease isaacs comes on more rapidly quickly later the insomnia is the main symptom of both diseases.The hallucinations and memory loss come from the inability to sleep just look up the symptoms of sleep deprivation peter trip is a good example i will put that link there as well the man who stayed awake for eight days straight.

  2. Where is the ‘man whocannotsleep’ these days? I hope all is well with him.

  3. Yes, I have been wondering as well, where are you manwhocannotsleep? How are you doing?

    • Thank you, guys. I am here and always read the comments. I am still battling this issue and believe it has something to do with cortisol or adrenaline or something related. I also think inflammation has something to do with it. I have been keeping extremely busy and my career is really picking up. My work has been great, but this silent battle is always with me at night. It is lonely and isolating, as you all know. You are always in my thoughts, and I wish I could contribute more to this site and actually meet you guys at some point. I love all the information and support you guys contribute here. Please keep up the good work and keep everyone updated with any theories or advice. Love you guys.

      • Brian Martin said:

        I found this blog almost three years ago when my problem first started, and it sometimes amazes me that so many other people suffer from this. I also find it reassuring because when my troubles began I had to see six doctors (two at urgent care, my GP, a second opinion, a psychiatrist, finally a neurologist who diagnosed me). My health insurance collapsed, I lost my business and had to move back home with my parents. It was the worst thing that ever happened to me. Finding this blog gave me some hope. Three years later and I still have the sleep twitches but I’ve become accustomed to dealing with it. I read all the comments too, contributing advice occasionally. I too have tried a lot of different things, have had good luck with clonazepam and etizolam, although they are both very addictive. I’ve been addicted to both. But I have to sleep, and on the plus side my life is back on track.
        I am grateful for this forum and to all the people who contribute. Best of luck to everyone suffering from this problem. I wish you all a good night of sleep.

      • Anonymous said:

        Mine started the same time this blog started also . I know it’s one of 3 things . Hormonal . Sleep apnea . Brain stem issue .

        It is silent hung that alerts the cns and arouses you . If you take enough drugs you can eliminate them. Let me know if anyone is using flexeril. It seems to be working . A muscle relaxer

      • Flexeril is not a benzo right? I am not sure we have it in Australia.(will have to look into it)
        Is it working well for you?

      • It’s good to see you are back on track Brian. It’s terrible that we all have to suffer such a crazy condition. I’m trying my best to avoid clonazepam and am managing on zooiclone which is you Lunesta and a small amount of mirtazapine .
        I also found that mine are worst later in the morning, say after 5am. The few times ive had success sleeping has been on my side. Ive never had any luck when laying on my back, has anyone else found this?
        How many hours sleep are you managing?

      • Brian Martin said:

        Thank you, I appreciate it! It took a while but I’m getting better as time goes on. I just got off the benzos; I was also taking Clonazelam, flubromazelam and etizolam when it was bad. I also take zopiclone and ezopiclone, and had a prescription for ambien. I forgot that when I was listing meds I used. In other words, anything I could get my hands on! When I say I just got off the benzos I mean just this past month. I tapered down until I could quit them completely.
        Thank you for this blog, glad to hear you are doing better too! My career is back on track and I feel as if I am back to living a normal life. Take care!

      • Great to hear Brian. It’s also great you get on the blog and let us who have only had this crazy condition for a while know that there is hope. Mine came out of the blue so it is eeally annoying as I don’t know what to pin point it on. The only thing was a Hair straightener product that I used that day and that night and the next 3 nights were like I was being electiricuted every time I tried to sleep. Its been 8 months and they have tamed down say 70 percent, but like you said even the smallest once are always at the wron time and just as hard to fall asleep with. Again, great that you are doing well and keep in touch…best of luck with it all.

      • Thanks for your posting, Brian. I hope things continue to get better!

      • Great to hear you are doing well. Its good to see your career has taken off and you are managing this crazy condition. Are you still on Clonazepam? or are you trailing something different?

      • For those who followed my original post a few months back, I thought I would give an update…

        When this first started my jerks were about as bad as they get (some felt like seizures). Pure torment and I had to take seroquel to get a few hours of sleep. Remember, this is a paradoxical side effect from clonazepam, so taking benzos is out of the question for me.

        Now, (5 months after clonazepam) I am still suffering but my symptoms have changed. I currently take about 2mg of mirtazpine. I have not had a jerk free night even once, but I have had a few nights with very little… And I finally for my first time in 10 months, slept 8 hours! I’m in a wave again (last 3 nights were under 2 hours sleep). Anyway, my jerks are different. I’m mostly getting what feels like tight contractions of my muscles where my body doesn’t move. These are usually followed by a noise in my head. I also get other kinds of auditory sleep starts still, and I also still get some shoulder, foot and head jerks (but they seem smaller). Last night, my tongue kept spasming or clicking while making a noise that was waking me constantly. Very annoying. If it weren’t for all the noises that I get with these spasms and jerks, I think my sleep would be better. Does anyone else get a lot of this too? I pray that the change in symptoms means that healing is taking place. I used to feel like I needed to tuck all of my body parts away in the couch cushions just to sleep at night (of course that never worked). Now, I don’t worry so much about my body parts flailing around and try to just sleep in whatever position is comfortable.

        Before my current wave, I was averaging about 4.5 hours sleep a night. Far from my old 8-9 hours that I so badly miss!! Peaceful sleep to all of you…

      • Brian Martin said:

        That’s what I used to do too: try to pin my hands and feet so they wouldn’t move when trying to sleep. It never worked; something else would twitch. I also get audio hallucinations. Instead of a twitch I’ll here my alarm clock go off, or a dog bark, or some other sound.
        The worst period I went through was the first two years. The most sleep I could get with medication was about 3.5 hours. Gradually it got better. I hope yours does too. I go through cycles where they go away, but they always come back. I was just trying to take a nap and I felt like I got hit with a cattle prod: my whole body jumped, I had that three nights ago but was able to sleep the last two with just melatonin and Benadryl, getting about 6.5 hours.
        I hope yours eventually tame down. At first they are unrelenting and so severe it seems impossible that this isn’t a highly documented disorder, but eventually they get weaker. Even when they are light they still keep me up though; my limbs aren’t flailing around though.
        I did the benzo route, and I also took mirtazapine, trazadone, flexeril, soma, medical marijuana (both cbd and thc-second one didn’t work) as well as Benadryl and doxylamine…anything to get some sleep.
        Best of luck to you and everyone here!

      • Thanks “mhcs” for coming back. Do you think that your symptoms have improved over time? Are you still taking clonazepam? I think some of us were really worried about you… Glad you are still alive and well!!

      • Congratulations on your success with your career! I feel like this could have something to do with cortisol or adrenaline as well. I hadn’t thought of inflammation, but I could see that playing a role as well, since I have been suffering from daily headaches for a while now. I wonder if a cortisol lowering supplement could help with the jerks? It’s good to know you are here, and I will keep everyone in my thoughts and prayers.

      • Thank you so much! I think a cortisol lowering supplement is a very good idea. I have had some mild results with Ester-C, which lowers cortisol. I began a trial of Relora, and I think it lowered my cortisol and was helping. Unfortunately, I also have autoimmune issues, and it made those symptoms worse. I think Relora is worth a try. I take turmeric and ginger in hopes of cutting inflammation in my body, too. Has anything worked for you?

      • Are you still on Clonazepam?

      • Yes, I’m still on it. I really dislike it and sometimes wonder if I feel worse than if I didn’t take it and didn’t sleep at all. Sometimes, I won’t take and be up all night. Other times, I’ll take it and still be up all night. It’s not a great option, but if I keep taking more, I usually will eventually fall asleep.

      • I know what you mean. I have it as backup but use zopiclone mainly.
        I do find I get more daytime twitching with clonazepam. How many hours do
        you manage?

      • It’s hard to really say. More nights than I’d like to admit, I don’t get any at all. I used to never be able to sleep at all without a klonopin, but that has changed somewhat over the last few years. How about you?

      • Well, I am all over the shop at the moment. Mine started in
        June 2015 and was alot worse in the early stages. I have had
        some success without zopiclone but only get 3 hrs and probably only a dozen or so times in
        the ast 8 months without meds. I am currently taking 7.5mg mirtazipane.
        Which helps with anxiety.
        I can get to sleep with just a quarter of a 7.5mg and still only
        get 3 hrs. Insomnia sometimes makes things worse than the jerks
        themselves. The jerks have settled alot but still come at the wrong time
        I have worked out that no matter what I will get jerks while laying
        on my back(don’t know why). I am trying various herbs so will see how things go.

      • Hi Brian! It’a great to hear that you are doing so much better and that you have gotten off of your medications. That is a tremendous accomplishment! I wish you continued success!

      • Anonymous said:

        Does anyone have frequent urination in conjunction with the jerks ?

      • Yes, I even posted a blog post about it. I have to urinate more when the jerks are really bad. It’s a weird connection.

      • Brian Martin said:

        Thamk you so much, I still appreciate your support
        . We all go through bad patches and step off the grid for a while, and that’s just what I’d done. And then I read other people’s stuff and I want to chime in. I have incorporated vitamins but I find that I have a similar situation as others; it extremely hard to pinpoint just what it is. Mine started after taking a research chemical that was supposed the me like ecstasy. Suffice to say it was not and the subsequent problems nearl derailed me. Well, if I ( and others) can come out of it then there is hope.
        Thanks for the message, take care! As far is sleep goes I varies between four and six hour0ccasionally seven. At the wordt!? Zero to mine.
        Taker, thank you for starting this blog!
        Brian Martin

      • To anonymous,
        I had frequent urination after I withdrew from clonazepam. That lasted about 2 months. How did your jerks start? Frequent urination is a common drug withdrawal.

      • Sleep apnea causes the body to release a chemical into the body that causes frequent urination. I’ve had to limit my liquids at dinner for a while now. I find that when I use my cpap, it fixes the problem. Maybe you should consider getting another sleep study done to see if your sleep apnea has gotten worse, because you may need to make an adjustment to the pressure on your machine.

      • I have my Cpap on 9 and I can turn it up to 20 and still have utination . I have tiny proststate. The jerks always come with utination . Always . I have researched for years can’t figure it out .

      • I know an sleep doctor that has her kids using Cpap and she does also but doesn’t show over 5 an hour . She swears it gives people more energy regardless of the defined sleep apnea .

        Mine started at the same time I used prescribed testosterone . I only used it a month . I have never been the same .

      • Anonymous said:

        For the man who cannot sleep. I need to send you a private email. How can I contact you via the blog?

  4. Brian, thanks for coming back and giving us an update. I’m happy that you are managing well with this. I don’t recall from your older posts, but did this come on out of the blue? I find it amazing that people can get this awful crap and then take a benzo without suffering terrible withdrawals. Did you have any side effects after going off clonazepam? Did you taper? I think I’ve spread some fear about benzos on this forum, so just want to clear the air for others who are not sure what to do. Maybe a benzo is a solution for some… Just not me!! Since you just got off of them, perhaps your Cns will level out after you’ve been off the meds for awhile. I’ll be curious to hear how the next weeks/months play out for you. Is there any supplement, food or lifestyle habit that you think has helped you? I can’t figure out if excercise makes this worse for me. Thanks Brian!

    • Hi Brian (again). I just realized that you are the one who wrote me awhile back about this coming on from research chemicals. You say that it has been 3 years that you had this problem. Perhaps I can give you a little hope by sharing something that one of the docs told me. She said that benzos can take 5 years to recover from. Perhaps the chemical you took is somewhat similar in terms of damage?
      She drew me a picture of how the receptors and chemicals get rearranged. It was awful to hear as I cannot imagine living with this for that long! But since you are 3 years away from that nasty chemical you took and feeling better, maybe in a few more you will be as good as new. There is a lady I’ve been in contact with who got this from ashweghanda. She is now over 5 years into this. She is like you now… Symptoms come and go but much milder. However, she takes keppra everyday so I wonder if it might be holding her back from complete recovery. And for all others who read this, i Recommend staying away from Quinolone antibiotics like cipro. I’ve been in touch with another person who who got this from cipro and have read about other similar stories. I would hate to take one and send myself back to square 1! Anyways, keep in touch!

      • Brian Martin said:

        Hi, thank you for your reply. Yes my condition started after the use of a research chemical similar to mdma. Over the course of three years the jerks have gotten better; I can only hope that continues to be the trend. I’ve read about all the things people have tried, from medications and supplements and I must confess I simply took the medication route. I’ve also added vitamin B complex and that has seemed to help as well. Like others I also get the twitches in the early hours of the morning, after about five hours of sleep. I also intermittently suffer from partial insomnia ( I can get to sleep but can’t stay asleep) caused by many factors (stress, not giving myself enough time to sleep etc.) and I’ll get the jerks if I can’t fall back asleep within an hour or so.
        I’m sorry the benzo route. Triggered yours as that seems to be the most effective at combating them.
        Thank you for reply, and I wish you and everyone else here the best in working your way through it!

      • Has anyone here tried seriphos to lower cortisol?

      • No, but I think that is a great choice. Have you tried it?

  5. Anonymous said:

    Is it Brian Martin that started the blog?

  6. Brian Martin said:

    No, the man who can’t sleep started it, but I believe I discovered him shortly after he started it.

  7. I’ll send you an email in a minute or two. I hope everything is well with everyone.

  8. Hi everyone,

    I posted on here several months ago when I started having these jerks. I had them for about 5 months straight, every night, and usually only managed to get 3-5 hours of sleep a night (and sometimes none at all). I wasn’t able to nap, either. I tried several things – ambien, sonata, trazodone, natural calm, magnesium/calcium supplements, melatonin, etc. – but didn’t have any luck. I saw several doctors who didn’t seem to know what I was talking about and could only suggest that it could be stress-related. I felt like I was stuck in a nightmare. I eventually started getting occasional jerks and muscle twitches during the day, too. In doing my own research, I found out that b12 and iron deficiency are common in vegans (I’ve been mostly vegan for about 6-7 years) so I asked my doctor to check my levels. My b12 came back low and my iron was at the lowest end of the normal spectrum. So I started taking a women’s multivitamin w/ iron and a b12 supplement (1000 micrograms/day) about 3 months ago. I didn’t see much improvement for the first month or so, but I’ve been gradually getting better since about a month ago. I don’t know if it’s the b12, iron, or a combination of both. I still have occasional jerks but I’m back to getting 7-8 hours of sleep on most nights. My jerks also used to be significantly worse on days that I exercised but I don’t seem have that problem anymore.

    I know that many of you have other causes for your jerks that are unrelated to vitamin/mineral deficiencies, and many of you have already tried b vitamins, but I just wanted to share this in case it could help anyone.

    I’m glad this blog exists for people to share their experiences and I sincerely hope that everyone suffering from this can find a solution soon.

    • Thanks for sharing! I agree that iron seems to have something to do with it. I haven’t experienced the Vitamin-B connection, but maybe I’ll give it another look. I also sleep much worse on nights I exercise and sweat a lot. Thanks, again! I’m happy things are getting better!

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