Involuntary Movements (bodily jerking)

[MTRJ75]

This has been one of my oldest symptoms, in fact, the first one to drive me to a neurologist a few years before more prominent autonomic symptoms set it. 

What happens is that when attempting to sleep, in a relaxed state (but still awake), my body will start jerking. Sometimes it's an arm or a leg or a hip or even my neck. It can be really subtle and stop after one or two or even become violent enough to almost injure myself and last several hours. As you can imagine because I'm writing this post, last night was one of the latter events. 

What generally happens during the worst of these is it'll start with a few, but then there's almost a build up of energy to the point where my entire body feels like I'm being electocuted almost. It can be quite painful. Unfortunately, when these events are more significant, they generally last a few nights as well. 

I made the mistake of taking the recently prescribed muscle relaxer (Tizanidine 2mg), thinking this was exactly what something like this must be made for, but it ended up only making matters worse, as I became even more exhausted and nauseous, but without any relief at all. 

Finally fell asleep around 5am (took the med at 3am), but have been a bit of a zombie today and am not looking forward the next few nights. 

Anybody else have anything similar and find anything relieves the experience? 

PS - I know what Myoclonus and Hypnic Jerks are, but I'm not sure if this fits because I'm not woken up by them or very close to sleep. I'm still awake, attempting to fall asleep. Though they do not happen very often during the day. 

[JimL]

I had it after lumbar fusion. They put me on gabapentin. 

[MTRJ75]

My God, that  could not have been comfortable. 

Certainly nothing like that responsible for my issues. 

[JimL]

The worst of it was a CSF leak. 8 weeks later I had pots symptoms. 

[Abe]

I get this all the time especially after my benzo prescription begins to take effect.  Its like my tight muscles being forced to loosen up or stretched out.  It can be very painful or at least, very uncomfortable,  I'm kind of used to it now I guess.

[toomanyproblems]

6 hours ago, MTRJ75 said:

This has been one of my oldest symptoms, in fact, the first one to drive me to a neurologist a few years before more prominent autonomic symptoms set it. 

What happens is that when attempting to sleep, in a relaxed state (but still awake), my body will start jerking. Sometimes it's an arm or a leg or a hip or even my neck. It can be really subtle and stop after one or two or even become violent enough to almost injure myself and last several hours. As you can imagine because I'm writing this post, last night was one of the latter events. 

What generally happens during the worst of these is it'll start with a few, but then there's almost a build up of energy to the point where my entire body feels like I'm being electocuted almost. It can be quite painful. Unfortunately, when these events are more significant, they generally last a few nights as well. 

I made the mistake of taking the recently prescribed muscle relaxer (Tizanidine 2mg), thinking this was exactly what something like this must be made for, but it ended up only making matters worse, as I became even more exhausted and nauseous, but without any relief at all. 

Finally fell asleep around 5am (took the med at 3am), but have been a bit of a zombie today and am not looking forward the next few nights. 

Anybody else have anything similar and find anything relieves the experience? 

PS - I know what Myoclonus and Hypnic Jerks are, but I'm not sure if this fits because I'm not woken up by them or very close to sleep. I'm still awake, attempting to fall asleep. Though they do not happen very often during the day. 

This is EXACTLY what happens to me. I don't normally go in for much but this was like torture. Exactly like you said, like a build up of electrical energy that became extremely uncomfortable and then my body jerked and it discharged. Only to start again. It was impossible to sleep and as soon as I fell asleep I was jolted awake again. Over and over all night. It started before I went to sleep and continued even after I was so exhausted I fell asleep between episodes. It seemed to get better by morning. It happened sometimes during the day as well. And also like you said, usually it was my legs but could be my arms, any part of my body or my whole body on occasion. Sometimes it was like I was convulsing. If it started to involved more of my body my whole body would draw up like in fetal position then kind of jackknife and straighten back out very stiffly.  

I was referred to neurology but somehow the referral went to the muscle people instead of the seizure people. I don't know how this happened because I was supposed to be referred to the seizure people. The initial complaint they got was listed as "muscle spasms," which I found a little insulting considering. Not to take anything away from muscle spasms which I can have and are certainly painful. But nothing like this. Anyway the muscle neuro people seemed to not know what to do with me given all my other problems. They referred me to the seizure people and ordered a bunch of tests, like some overnight sleep deprivation EEG or something. After spending four hours at that appointment only to have them tell me they had no idea what was wrong, then referring me to the seizure clinic where I should have gone to start with, I never went back. I was in a place with insurance at the time where I would have had to pay for all the expensive testing myself. This was a couple of years ago.

It still happens but less often and not as severe. IDK why it waxes and wanes but it is still a problem. One thing I found is anything that's an antihistamine causes it with a vengeance. Even stuff like mirtazapine that only has mild antihistamine properties. I take vitamin E and selenium and I think that helps. I'm so completely frustrated with the neurology docs that I  just can't bear to be put through the ringer on this only for them to not happen to pick it up on that particular night and say no problem. I do have other seizure like problems sometimes. But I'm already on a ton of of gabapentin (3200mg a day) for other problems which is a seizure med so I figure nothing is going to be changed to help more. I've also been on topamax, another seizure med that didn't really help except to make me not want to drink coke anymore.

I'm sorry my response is so emotional but I feel emotional about it. I feel like none of the docs in the different specialties have a comprehensive idea of what all can happen in POTS and it frustrates me to no end. I do think this is POTS related. Just my opinion.

I wanted to respond thoroughly because this so exactly is what happens to me. I'm so sorry you're going thought this. I hope you find help and please let me know if you do.     

[MTRJ75]

Its double edged because it certainly doesn’t make you happy others are suffering, but I did hope someone had found an answer. I think the only real difference is that if I am finally able to fall asleep they don’t wake me. And I don’t know if it’s the same way for you @toomanyproblemsbut it will usually be a several nights in a row thing then it May not happen again for weeks or hopefully even months. In fact, remembering that it’s only temporary helps keep me sane during this particular torture. 

I didn’t even think seizures, but maybe it makes sense. Is that what this is?

[Pistol]

@MTRJ75 @toomanyproblems - have any of you ever had an EMG? It measures nerve-to-muscle transmission and can detect any errors in communication between the two. Personally I would definitely seek neurological Work-Up for this symptom. ( Toomanyproblems - I certainly understand your frustration with the docs you saw before 😣)

[MTRJ75]

I did the EMG a long time ago, when these symptoms first appeared. Showed nothing at the time. I assume the process would be torture now. 

Also wondering, if they were seizures, why they would only happen when in bed. Wouldn't they be much more random? 

[toomanyproblems]

I had an EMG years ago for myasthenia gravis. I would NEVER go through that again. 

I have no idea what causes this jerking but it seems better since I've started IVIg and now since Covid subcu Ig so a nurse doesn't have to come to my house every two weeks. It helps a lot of my problems. It still does happen though and like the OP said, it tends to go on for a few days (sometimes more) and then disappear for a while. I have the jackknifing/convulsing whole body thing on video. I was just videoing to see if I was grinding my teeth bad at night and picked it up. Although I could probably never find the video now.

[toomanyproblems]

Here's a recent threat that may or not be related:

 

 

[Gail R]

Mine are not this violent, usually, and when they are it's usually a one-time 'jump.' I do, however, have almost constant twitching, cramping, and/or spasms. For the last 10 days, my right eyebrow has twitched non-stop. This isn't nearly as bad as muscles jerking so hard you hurt yourself, but the constant twitching is exhausting. I take magnesium, CoQ-10 and ALA for migraine, which has also helped with some of the muscle stuff. I also vape CBD (no THC) which really seems to help with any inflammation going on in my body. I don't like vaping, but it's the only thing that works for me.

Talk to your primary dysautonomia physician about supplements that might help. What are your magnesium, sodium, and potassium levels? Sometimes eating a banana or other potassium-rich food just before bed can help. Maybe you've tried this, but maybe you haven't. I feel for you. The muscular involvement is something that I believe doesn't get enough attention and there doesn't seem to be much research going on in that area at all. We all know it's pretty hit-or-miss, and what works for 10 people might not work for 100 others, but if we all share things than help us we might all get there together in the end. My neurologist's spin is that if it works, do it as long as it isn't causing a problem somewhere else. Whatever you try, though, keep your neurologist in the loop. Having documentation in your chart is so very important when you have dysautonomia.

[MTRJ75]

17 hours ago, toomanyproblems said:

Here's a recent threat that may or not be related:

 

 

I don't know how I missed this thread. 

@Gail RI did realize I had high quality magnesium packets in the house the second night, took one before bed and last night wasn't as bad. I usually take my CBD drops in the morning. Although I probably need more than I take, the oil is quite expensive and I can't be plowing through it with even higher doses right now. 

[merkat30]

I have this to I have hyper pots and mcas this horrible every nite I struggle sorry hear other ppl have it to do u think it  a symptom of pots ? Or more adrenaline?I had petite Mal seizure as child up age of ten then just stopped some time I think mabye it connected? Either way nite time are horrible I am lot pain right now just sometimes I think why me 🙄🙄

[Rexie]

After encephalitis in 2012 I had all of these horrible problems. In 2016 when CRPS got bad I started ashwagandha (Withania somnifera) which helps greatly and works in as soon as 10 minutes. If things are real bad after a busy, active day (overdone) or mental stress I'll add a capsule of Passion flower (Passiflora incamata). A few months ago I started Bacopa (Bacopa monnieri) herb and with the ashwagandha that put an end to these pesky unpleasant muscle fasciculations, tremors, spasms, jerking, writhings, etc. I don't take prescription drugs other than an occasional hydrocortisone as a fix to low blood pressure so I'm not sure how these herbs might react with some of the stuff some of you take. All three herbs have great safety ratings. They help increase GABA and balance the nervous system components. Cannabis-derived products (CBD, hemp drink, other) are also nice additions. 

Alternatively, 25 mg of tramadol (Ultram) once per day provides smooth sailing for me but in America requires too much government oversight for my taste. 

With self-pacing I have a pretty good although often seemingly limited life but many of the "why me?" feelings have subsided and pain is manageable. I'm actually consistently happy for the first time in years. Everyone is different so be proactive and find things that work for you as an individual. Back when I had Lyme disease (1989-2006) I tried lots of prescriptions commonly mentioned on this forum and none really worked well and many had unpleasant and dangerous side effects. 

[MTRJ75]

I’ve tried Ashwaganda in liquid form in the past. Did not notice much of a difference. In fact, I was once scolded by a cardiologist for herbal experimentation, who said that this stuff was probably causing my palpitations (it wasn’t). Now I’m taking high quality CBC, turmeric, and the magnesium when I can remember. 
 

So odd how my symptoms change so often. One weak I’m burning up and the entire nervous system is on fire, one week it’s the above, tonight it was palpitations among other things, and maybe it’s something else next week. I have to figure out a way to prioritize what I even discuss with the neurologist this week.I have pages of notes for him. No wonder doctors unfamiliar with the condition think we’re nuts.

[KaciCrochets]

And here I thought I was the only weirdo who had this, lol. The tension buildup to the jerking can be awful. I tend to get it when I've been stressed and my nervous system is mad at me. Those twitches tend to generate from my spine and are relieved with a tiny dose of Flexeril before bed. The other twitches I get start in my head and sometimes even feel like my brain is jerking around inside my skull. Those are generally from too much norepinephrine and are relieved by a tiny dose of Atarax. The real key for me is making sure I spend time every day with my feet up, in deep relaxation. If I can keep my system happy, the rest of my day is fairly functional and nighttime isn't a nightmare.

[CallieAndToby]

On 10/30/2020 at 2:24 PM, MTRJ75 said:

I don't know how I missed this thread. 

@Gail RI did realize I had high quality magnesium packets in the house the second night, took one before bed and last night wasn't as bad. I usually take my CBD drops in the morning. Although I probably need more than I take, the oil is quite expensive and I can't be plowing through it with even higher doses right now. 

Yes I've been having movements since before I was even diagnosed. I even took video of it several times but doctors were not interested. Recently a few seizures. I'm not sure what to tell you b/c I don't know what causes it but I can feel it coming on. I take a Benzo at night and very helpful for symptoms, sleep, and revving nervous system. They did put me on a beta blocker 2 months ago and everything has gone down hill, but I quit it a few days ago, I think it had something to do with the seizures b/c my blood pressure is already so low. Mine is definitely jerking movements also, gets painful, I feel out of control. 

[MTRJ75]

14 hours ago, KaciCrochets said:

And here I thought I was the only weirdo who had this, lol. The tension buildup to the jerking can be awful. I tend to get it when I've been stressed and my nervous system is mad at me. Those twitches tend to generate from my spine and are relieved with a tiny dose of Flexeril before bed. The other twitches I get start in my head and sometimes even feel like my brain is jerking around inside my skull. Those are generally from too much norepinephrine and are relieved by a tiny dose of Atarax. The real key for me is making sure I spend time every day with my feet up, in deep relaxation. If I can keep my system happy, the rest of my day is fairly functional and nighttime isn't a nightmare.

It sounds like some of you get this much worse than I do. I do often feel an indescribable feeling in my spine that can coincide with these but I don’t feel like that’s necessarily the generator.I Stress makes them worse but it not always a factor. The worst are the neck snaps.

[MTRJ75]

This is becoming more the norm than the exception. I'm off either my fourth or fifth night of disturbance in a row now and my brain is quite muddled today, so I don't know if I'm repeating myself, but could it be the escitalopram? I've been on it for a year now though. If it were, shouldn't this effect have occurred sooner? I'm often giving up by about 4am and giving into the xanax (0.25 mg), which seems to be the only thing that calms the electrical buildup in my body enough to get some sleep. I'm afraid I'll start to build more of a tolerance to it soon. 

I don't think they're seizures (unless I'm misunderstanding the nature of seizures) because each occurrence is just a single jerk and they only happen when I'm trying to relax enough to sleep (but not actually drifting off yet), but each one makes the electrical build up throughout my whole body progressively worse until I can physically feel a motor like buzzing in my throat and chest and my arms and legs feel ready to explode. 

There's certainly enough torture to endure when awake. Sleep is supposed to be my only remaining sanctuary. 

[Pistol]

4 minutes ago, MTRJ75 said:

I don't think they're seizures (unless I'm misunderstanding the nature of seizures)

Hey @MTRJ75 - seizures come in different types and forms, so anything is possible. I take autonomic seizures and they are not like what you describe but rather that I loose consciousness and my body stiffens and back arches for up to 2 minutes ( usually 30 seconds or so ). I am not sure that seizures become progressively worse like you describe - but I am no expert! 

[MTRJ75]

Thanks again @Pistol

I'm on the same page as you and guess I'd be thankful that they don't sound like seizures, though it doesn't make it any less disruptive. 

Going to try and contact my neuro this week for further clarification, but he may be out of office till Friday. 

Something else I neglected to mention, probably because it's a separate mechanism: numbness and arm pain when trying to sleep with my hands above my heart (placed up around chest). 

[toomanyproblems]

1 hour ago, Pistol said:

Hey @MTRJ75 - seizures come in different types and forms, so anything is possible. I take autonomic seizures and they are not like what you describe but rather that I loose consciousness and my body stiffens and back arches for up to 2 minutes ( usually 30 seconds or so ). I am not sure that seizures become progressively worse like you describe - but I am no expert! 

Hi Pistol, Your description of autonomic seizures sound like one step further of my jack knife type jerking when my whole body kind of convulses into a fetal position then releases into a straight stiff position. As I said above I accidentally picked one of these episodes up in the middle of the night while videoing to see if I was grinding my teeth. Whenever this happens it wakes me up. Often after I've finally fallen asleep exhausted after the leg jerking so I may not be picking up the progression from leg jerking to this jack knife thing.  

On 11/12/2020 at 9:48 AM, KaciCrochets said:

The other twitches I get start in my head and sometimes even feel like my brain is jerking around inside my skull.

This. I haven't known how to put words to this feeling but it feels to me like my brain is slamming around in my skull. This is something that happens pretty much strictly during the day for me. My brain usually feels kind of swollen with pressure when it happens. I feel crazy writing these things because my neurologist would probably think it's crazy. But just hearing someone else here describe it feels very supportive. The other thing that's happened to me like this is suddenly I see fractal pieces of what I'm looking at that don't seem to fit together for a normal picture. It's very weird. It can last five minutes or so. I basically cannot see during this. I've had ocular migraines for years and this is not what they are like. Maybe this is a further version of those. But not something I see described anywhere in the scientific literature. 

On 11/9/2020 at 1:01 AM, MTRJ75 said:

So odd how my symptoms change so often. One weak I’m burning up and the entire nervous system is on fire, one week it’s the above, tonight it was palpitations among other things, and maybe it’s something else next week. I have to figure out a way to prioritize what I even discuss with the neurologist this week.I have pages of notes for him. No wonder doctors unfamiliar with the condition think we’re nuts.

I often feel my symptoms move laterally. So one thing might be better but then something else equally as bad takes its place so I'm never feeling better overall. And yes, all these weird unexplainable symptoms must overwhelm the docs since there's just not a lot out there about POTS yet. The silver lining to Covid is a lot of those "long-haulers" are ending up with POTS so we may see more research on and understanding of it because of these shear numbers of people now presenting with it around the world.  

[Pistol]

2 hours ago, toomanyproblems said:

The silver lining to Covid is a lot of those "long-haulers" are ending up with POTS so we may see more research on and understanding of it because of these shear numbers of people now presenting with it around the world.  

@toomanyproblems - I recently started a post on autoinflammation & POTS, in which I mentioned the new findings in current research about the inert immune system causing POTS by way of autoinflammation ( vs autoimmune ). I think the fact that so many COVID patients develop post-viral POTS goes along with those findings.