extreme whole body restless seizures

Greetings from Seattle

I would like to hear from others that suffer from the same condition as me. It is an extreme muscle / nerve irritation that cannot be endured without a movement response to stop it . It began in my youth as common rls, then it moved to my entire body in my late twenties. It is so extreme that I spend nights in constant dancing motion, untill my mind begins to fail from sleep deprivation. My wife says that when I do sleep I keep moving even then. It happens most when I reach that grey area just before my mind falls asleep. I had to seek medical help when I could no longer endure the Psychological torment. The condition is worse with certain tranquilizers or anesthesia. The condition is also familial. The only certain relief comes from either scorching myself in the shower, or the use of narcotic pain meds. Again the real issue is not with having severe pain, but its the type of pain that cannot be endured. If you suffer from the same condition then please comment.

Thank you.

14 Replies

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  • Seek help from your Dr and get tested. You did not mention if you were taking any meds. This site is chock full of good info. So sorry about the pain and sleep deprivation. It is very common and a horrible part of this affliction.

    Best wishes and keep us posted.

  • I feel your pain. I have full body restlessness as well. It feels like a cattle prod jolting me with energy. Mirapex helps me but I have augmentation and need to take a break from it after about a year. When it is bad I want to die. The ONLY thing I have found that stops the torturous nerve energy is cannabis. Give it a try. It is legal in Seattle.

  • Opiates are used for RLS, and are actually recommended by the RLS experts these days. You dont have to have pain for them to work on your RLS. The problems come if you live in the States if your can get your doctor to prescribe them. I know there are big issues with getting doctors to prescribe any opiates because of new ruling.

  • Yes it's becoming very difficult to get opiates. Even the benzo I use. Count pills and watch every move. I guess it's big street addict stuff.

  • That could be me typing that, except I do have a lot of pain with it. Just last night I spent the night flopping and jerking and jiggling my arms and legs to try and get relief but despite a shed load of dugs I was spasming most of the night :(

  • I have found that when I increase the temp of a hot shower to its maximum level, it will deaden the nerve impulses long enough to get to sleep. If the temp is raised in gradual increments, you can stand the heat that you could not in the beginning as the nerve impulses become more numb. the longer and hotter I do this, then more time I get until it wears off.... up to a few hours pain free.

  • Yeah I get some benefit from hot baths & showers - sometimes the bath is that hot I end up vomiting but I get a little relief and at times a little is a lot!!!

  • I'm sorry Raffs. Im scared my meds will stop working soon and then what?.pfft

    I hope tonight is better for you.

  • I wish it had of been :( I managed about 2 hours or so sleep thankfully time for morning meds so things should be easing soon.

  • Its makes me sad to know that someone else is going thru the same hell that this condition can bring. I have always said, I wouldnt wish it on anyone..... such torment! I truly hope you dont have to take the same desperate measures that I did,

  • Yes that does sound like RLS. Are you on any medication for it at present? You should also check whether you are inadvertently taking anything that exacerbates the condition. You will find a list of the culprits on the ??? I just can't remember the name of the site temporarily - I have taken my evening meds ... On the subject of which, have you tried kratom? I think it is legal where you are. I don't think you require a prescription for it. I find it very effective for my RLS.

  • My RLS has stopped since I got off of my antidepressant (cypralex) and changed my eating habits. All I can say is my heart goes out to you because RLS is pure hell and I wouldn't wish it on any one!

  • You live in Seattle where recreational cannabis is legal I'm pretty sure. Try it out, it works incredibly for rls

  • Yeah its legal there and definitely should be tried. Remember some strains are better that others so if at first you don't succeed.........

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