zerohours000 Posted July 26, 2018 Report Share Posted July 26, 2018 Does anyone else get like limb and body jerks? Especially while trying to fall asleep? I get them in my fingers a lot and then almost everywhere when trying to rest. Very weird. Quote Link to comment Share on other sites More sharing options...
Anamaria Posted July 26, 2018 Report Share Posted July 26, 2018 Yes I do. I have for a few months now. I also get a lot of facial twitching. I’m starting to take magnesium to see if that helps. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted July 27, 2018 Report Share Posted July 27, 2018 Yes. My head, arms and legs. Haven't really given them much thought though because they only happen when I'm trying to fall asleep. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 27, 2018 Report Share Posted July 27, 2018 Yes when I had severe POTS relapse in May and June it was very disruptive to sleep. I am not sure if it was being caused by low B12, severe POTS or a combination of the two. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 27, 2018 Author Report Share Posted July 27, 2018 1 hour ago, MomtoGiuliana said: Yes when I had severe POTS relapse in May and June it was very disruptive to sleep. I am not sure if it was being caused by low B12, severe POTS or a combination of the two. My suspicion is that it's from some vitamin deficiency or possibly the dysautonomia itself --- even though everyone says it's not dysautonomia. So I'm very confused. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted July 27, 2018 Report Share Posted July 27, 2018 I have been trying to find out for the past two years why my daughter has bad tremors while she's at rest or trying to fall asleep. There's pain, then tremors, then she'll have these contractures or postures that are from the muscles pulling so hard. She hasn't been able to relax and enjoy an evening since 2016. She also tends to be unconscious as well. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 27, 2018 Author Report Share Posted July 27, 2018 5 hours ago, DizzyGirls said: I have been trying to find out for the past two years why my daughter has bad tremors while she's at rest or trying to fall asleep. There's pain, then tremors, then she'll have these contractures or postures that are from the muscles pulling so hard. She hasn't been able to relax and enjoy an evening since 2016. She also tends to be unconscious as well. Sorry to hear that. I don’t get tremors per se. I do feel like there’s an internal trembling or something. But I get a lot of jerks and twitches as well. Quote Link to comment Share on other sites More sharing options...
Anamaria Posted July 27, 2018 Report Share Posted July 27, 2018 I meant to say that I have low B12 at the moment and that can cause twitching so in a few months when my B12 is back up I’ll be curious to see if the twitching stops Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 27, 2018 Author Report Share Posted July 27, 2018 36 minutes ago, Anamaria said: I meant to say that I have low B12 at the moment and that can cause twitching so in a few months when my B12 is back up I’ll be curious to see if the twitching stops Yes. It’s hard to know what’s causing what. Quote Link to comment Share on other sites More sharing options...
valiz Posted July 29, 2018 Report Share Posted July 29, 2018 I was having, what I call involuntary body jerks. I also had accompanying involuntary moan/groan at the same time of the jerks mainly when falling asleep. If I had them during the day they were less severe. The severe ones happened when I was trying to go to sleep or that transition time. Some times I just had several and other times 10-12 before I could finally go to sleep and stay asleep. As you can imagine I had terrible insomnia. After numerous times my body would quit wanting to go to sleep. That was the first symptom to resolve after I started taking Northera (Droxodopa). Unfortunately I can't afford to taking it past this year unless I can get help from NORD or some other organization. I don't at all understand the mechanism causing it. I have PAF. I know this doesn't help you but wanted to share my experience and let you know you are not alone. Elizabeth Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 30, 2018 Author Report Share Posted July 30, 2018 29 minutes ago, valiz said: I was having, what I call involuntary body jerks. I also had accompanying involuntary moan/groan at the same time of the jerks mainly when falling asleep. If I had them during the day they were less severe. The severe ones happened when I was trying to go to sleep or that transition time. Some times I just had several and other times 10-12 before I could finally go to sleep and stay asleep. As you can imagine I had terrible insomnia. After numerous times my body would quit wanting to go to sleep. That was the first symptom to resolve after I started taking Northera (Droxodopa). Unfortunately I can't afford to taking it past this year unless I can get help from NORD or some other organization. I don't at all understand the mechanism causing it. I have PAF. I know this doesn't help you but wanted to share my experience and let you know you are not alone. Elizabeth @valizThanks for sharing. I have a constant twitching in my pinky and finger finger where they both twitch inward. I’m just hoping it’s not early onset Parkinson’s disease. Hope you’re doing better. Quote Link to comment Share on other sites More sharing options...
Weary Posted July 30, 2018 Report Share Posted July 30, 2018 I had the body jerking thing on trying to fall asleep for years and years. sometimes jaw, somethings one leg, sometimes whole body, sometimes arms. They had wanted to give me clonidine but what worked was going off tyramine containing foods, starting with soy sauce and all asian food. That was the start of my tyramine intolerance (which i should point out could be a different source of aged and fermented foods like histamine and free glutimates). now i get the interrupted sleep disturbances but with symptoms that "moved on" from jerking stuff to weird head and chest sensations but perhaps it really is the same. and my tyramine intolerance has gotten evey worse. I call them my head zaps. awful. (now i'm gettting a bunch of vidual auras) yes, after a while, body thought no point in going back to sleep and my chronic sleep loss does not help the dysauthomia and heart symptoms. I don't know much about that med mentioned unless i know it by a different name. will look it up. I do by the way on OAT test test high for dopamine and low for serotonin. (and have plenty of symptoms that makes one think pheo but dont't think i do). Quote Link to comment Share on other sites More sharing options...
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