Twiches or Spasms when you try to sleep?

Kinney How long since your onset of GBS?

I still have tiny jerks in my legs mostly the feet all day long but I notice them the most when I am in the recliner. I have more like a vibration and something else that feels like chills but not really twitches. I did get cramps alot during the night but all that stuff has gone away and been replaced with other weird things. Might want to mention it to your neuro the next time you go back. Nothing surprises me when we have GBS. But don’t blame everything on the GBS better to get it checked out.

I would mention it to your neuro along with the numbness…..especially if you think you are getting worse. If you are over doing it you could be feeling the residuals kick up. I would always error on the side of safety. Also there is things that they can give you if it is distrubing your sleep. We all feel the fatigue and know we can not loose sleep!

I am almost 25 years post GBS and still get the spasms. I get them during the day as well. They are not as frequent as they once were but do still occur….especially if I have overdone it and am tired. My whole body kind of jumps! I also get the smaller jerks in my legs and feet. Hope this helps.

Hello
After 12 years I am still jumping all over the place in bed at night.

Two years ago, after a stroke, my Neuro put me on Baclofan 10 mg. and I asked to keep it especially for night time body jerks. IT WORKS. It does keep
me awake, as the side effect is insomnia…..but 5 mg. of ambien does
the trick.
I hope it helps you too.

Blessings Maureenboz

Ahh, I’m not alone. I get the twitches too. In my hands and feet and bottom gum. Especially when I’m first trying to fall asleep. But it happens if I’m just sitting watching tv, it’s even happening right now while I’m trying to type. It’s more like a quick pulsing, lasting only a second or two. But very annoying while trying to get to sleep. Let us know what your doc says about it. Just recently, I’ve gotten a twitch under my right eye. I haven’t told anyone yet… I’m keeping any eye on it, haha. Best wishes.

I get the twitches, too. And yes, they seem to be worse when falling asleep. Occasionally I get the full-body jerks when I’m lying in bed about to drift off, and it wakes me up pretty suddenly. It’s not painful, just annoying. My muscle cramps are a lot better than they were, though; I only get them if I’ve really overdone it. I’m one year post-GBS.

Yes, I too have experiences this and I have been told that I shake the whole bed at times during the night.

yea this is very common here when I try to sleep or just taking nap, and when Im trying to relax over tv it gets so bad I stand up too make them stop, it is all over somtimes in my face but usaly is it is the feet and and the body and arms.

I get pulsating twitches when I go to bed and tingling in my legs when I get up, a;so during the day.

Peggy

I am 1-1/2 years post-gbs and the muscles in my feet and legs twitch quite a bit at bedtime and first thing in the morning after I get up. Dr. prescribed low dose amitriptylin (sp?) to help me rest and it worked like a charm!

28 years post and I still get the bedtime spasms occasionally. Some are strong enough to bring me back to wide awake from almost-out. Even woke my wife up once with a violent calf spasm. However, I don’t get them nearly as bad as I did 20-25 years ago.

I find stretching before bed helps with this – I’ve had such violent spasms I’ve thrown myself off the bed before. I may be totally off base but I always assumed it was due to a build up of energy that I haven’t released from my muscles throughout the day. I started stretching before bed about 6 months ago and I’ve cut down those jerk-you-awake spasms by about 80% and I haven’t accidently booted my husband out of bed for months now. 😉

Julie

Hi everyone. Yes, twitching is another malady of GB. I’ll be working on my PC and if the twitch happens with my right hand I’ll end up throwing the mouse. Scares the hell out of me and some of my coworkers. Happens quite often.

Anyone going to the meeting tomorrow at Indian Lakes?
Dex

I still get really bad cramps and spasms in my legs & feet when I go to bed. so bad that I have to get out of bed to walk them off. It is better w/ qualiquine (sp). I notice if i don’t take it the cramps are realy bad and i wake up through out the night. My thumbs/hands lock up at times too. When I do sit ups my abs will lock up. I can feel the muscles tense, harden and then slowly relax to normal. i will also get the cramps in my feet if i stretch my toes/feet. almost anything or position i put them in can cause a cramp. i wish i could find another medication to take since qualiquin is the brand name and there is no generic.

[quote=Dexter]Hi everyone. Yes, twitching is another malady of GB. I’ll be working on my PC and if the twitch happens with my right hand I’ll end up throwing the mouse. Scares the hell out of me and some of my coworkers. Happens quite often.

Anyone going to the meeting tomorrow at Indian Lakes?
Dex[/quote]

omg Dex that happens to me too, broke my last mouse that way.

I get the twitches all over and mainly as I fall asleep. My g/f says it happens alot during sleep as well. Mine seem to be especially bad if I have excercised or done alot of walking during the day.

Baclofen works well for it but like someone else said, it gave me insomnia. Now I just drink tonic water with quinine as much as I can and it seems to also help with the spasms as well as the cramps.

Jerimy

PS-Nice to meet you Dex.

I keep hitting my husband with my feet/leg/hand, etc when they twitch while we are in bed – scares him to death 😀

I constantly get all kinds of electrical shocks, etc. that can be quite debilitating – my pain control manages some of it! – I just assume that my whole electricals are messed up (I have CIDP).

Debs

i had my first “wiggle” last night. really interesting sensation. good to know i’m not alone.

I haven’t told anybody about my twitches since when I was in emergency and I started having full body tremors and they thought I was siezing and because I was stillaware of what was going on the called a psychiatris to see me and I have not told anyone since about the tremors I get at night because I am afraid they would just think I am psycho.

I am so relieved I am not alone and that there is something more to this then my imagination. It has been bothhersome especially the jerking of my neck and head. There are times where my whole body jerks including my legs arms and head. I know during the day my legs love to jerk and do strange things, especially when they took me off my nerve pain killers but even with them it still happens. I started taking elevil and topamax for nerve pain because things are more painful now the topamax took away most of my symptoms but is not fully working. I think now I’ll address this with the neurologist now that I know that the jerking is common at night and mabye he might know something that might help, if he does anything because he doesn’tlike to medicate things.

Thanks
Sonja

Twitches, spasms, cramps, annoying jerks, etc. After 13+ years they still happen whenever they want 😮 I find that early in the a.m. my legs start to move a lot to get away from the pain (that’s what it feels like to me). So, it’s time to get up and move around or take some more Rx. (don’t tell Sonja’s doc, but I even feel them move across my scalp some days 😉 ) This is just the strangest disease process!!

My husband and I have CIDP we also have the twitches, which his is worse than mine. His is so bad, we are not able to sleep in the same bed. He has had CIDP for four years. I was dignose last month, I also get cramps in my legs, arms and my neck. So is this normal?

suerein,
you both have cidp? that is extremely rare..also makes for a difficult bed partner..:D but hey, i like to sleep alone..

[QUOTE=Judi Z]Twitches, spasms, cramps, annoying jerks, etc. After 13+ years they still happen whenever they want 😮 I find that early in the a.m. my legs start to move a lot to get away from the pain (that’s what it feels like to me). So, it’s time to get up and move around or take some more Rx. (don’t tell Sonja’s doc, but I even feel them move across my scalp some days 😉 ) This is just the strangest disease process!![/QUOTE]

I also feel the jerks on my scalp too. I did not say anything because I thought I was loosing it too. Before I was dx, my husband has the same diease, I thought he was doing all that jerking to keep me awake. Boy, I don’t say that anymore.

Boy, i wish i knew what to do about those darn jerk, twitches, and spasms! Started out only at night, but now it happens throughout the day,too. It is much worse at night, though.

The doc said the only thing i can take while pregnant is vicodin (prescribed for head, neck, and hip pain before pregnancy), so i take one before i go to bed, and that seems to help. I’m not sure if it just puts me into a deeper sleep, or if it really helps the “electricity” that shoots through my body in the night. Not too effective, but does take the edge off.

I get these too. I also get a lot of muscle cramping, charlie horse type of things. Sometimes muscle relaxants work…(Robaxacet type, except I use the cheaper no-name brands). They were better when I was on Neurontin/Gabapentin but have gone off them because of the weight gain they cause. Don’t need the added weight at this point but am thinking I may need to revisit this issue….

Called my neuro today to let him know my “electricity” is steadily getting worse and more frequent. Says there is nothing he can do. Told him i just wanted him to know, though, and that was the end of that conversation.

He did okay the spinal tap to be done during labor, when they do the epidural, though, which is great! I can’t wait for a true diagnosis and tx!

Jamie, check with your doctor regarding whether you can safely take a vitamin B complex supplement while pregnant. I swear by B-100. It helps with nerve health and we need all the help we can get in that area.

It got me back to ‘normal’ a few years ago when the weakness and tinglies came back. Turned out I was borderline deficient in one or more B’s and the nerve damage from GB caused the unpleasant side effects to happen much sooner than for someone else.

I have not had the spasms nearly as often in recent years. I don’t know if it is the B complex but, I’m not going to stop them to see :-).

tom, i will definitely talk to him about the b complex. I do take them very rarely, along with vitamin d (very deficient), but i keep forgetting to ask my obgyn how much vit b is safe during pregnancy. Only take one when im really desperate to feel even a smidge better. I’ll ask him and then i’ll post it on this this thread and also the pregnancy thread. Thanks!

I am currently going through a rough time with spasms. I have not slept well for the last couple nights and last night was the worst. Even the muscle relaxants are not working. I am taking B complex and calcium but they aren’t working right now. I am exhausted….:( The spasms come in the weirdest of places and can last several minutes. Anyone have any suggestions for me?:confused:

I noticed for myself when I was taken off my nerve pain killers once while I was here in the hospital not only did my nerve pain come back but I was getting spasms and twitces all over my body troughout the day and night. More than usual. Since you are unable to probably go back on your nerve painkillers till after the birth I would suggest some positioning of the limbs being effected, whether this works or not is another thing.

Sonja

Jan, I get up and take a warm bath with epsom salts. I find it soothing and sometimes it even works ~ ha! Also, I spritz my sheets/pillow case with lavender water and enjoy the fragrance. When I get into to much pain/spasms I just get up and “do something”. That often displaces the stressful energy field and with in an hour or two I can get some good sleep. I really dislike being up in the nite when alls I want to do is sleep but it beats “the fight” 😮

Thanks Judi, i am going to try the bath thing. I get the spasms in my knees, along the side of the leg and sometimes even in my stomache muscles, also face, neck, so can’t always say it is because I over did it on any given day. Because of where they occur, it is hard to stretch them out as y ou would fro a charlie horse. I did get up the other night and just walk around the house and that helped but as you say it is hard to be up at night when you are tired and everyone else is snoozing so soundly.