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Full Body Spasms/twitching?


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Does anyone else experience the full body spasms/twitching that my daughter deals with? We believe it's part of the whole POTS/dysautonomia thing, but would love to hear from others as well. Her POTS cardio has never seen this.

Our concern is that they are escalating in their intensity, and we don't want her to hurt herself involuntarily, while thrashing around!

Curious about others' experiences with this, and what has helped.

Thanks!

Debbie

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Debbie:

My daughter does get "shaky" with POTS. The only time she got full body spasms was when she tried taking Lexapro (we had to take her to ER because she was vomiting and body spasms/tremors for 10 hours straight that just would not stop).

Is she on any meds?

Pam

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Does anyone else experience the full body spasms/twitching that my daughter deals with? We believe it's part of the whole POTS/dysautonomia thing, but would love to hear from others as well. Her POTS cardio has never seen this.

Our concern is that they are escalating in their intensity, and we don't want her to hurt herself involuntarily, while thrashing around!

Curious about others' experiences with this, and what has helped.

Thanks!

Debbie

Has your daughter seen a neurologist? It might be worthwhile, especially if the spasms are getting worse, if she hasn't, to take her to one (with a videotape of the spasms if they don't occur all the time), just to rule out any neurological causes of the spasms. Did the spasms start before or after she developed POTS? Have you discovered the cause of your daughter's POTS?

Does she fall when she has these spasms? Do they cause her pain? Does her head hurt when she has these spasms? Does she experience any cognitive issues, like memory loss when they happen? Do you have a family history of movement disorders? Do they last for long periods of time? Do they only happen intermittently (like once a day)? Is there anything that makes them happen? Can she prevent the spasms from happening, even if only for a minute or two?

For example, I have full body twitches (from my myoclonus), spasms (from my dystonia) and, tremors, and even though I have POTS, they are not caused by my POTS. My Parkinson's-like neurotransmitter disorder is the cause behind my myoclonus, my tremors, my dystonia, and my POTS.

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She is on Neurontin for the headaches, and Florinef.

She has had extensive neuro workups from two different neuro groups (including a movement specialist -- Dr. Abbie Collins, who really determined nothing), including MRI's, and nothing found. We originally started down the neuro path as her symptoms all began the day after she hit her head. The full body stuff actually started just as very mild tremor, which was still very concerning to us as that was NOT normal for her.

She's completely 'with it' through these episodes, no spacing out, can't prevent them, and they last around 10-20 minutes. They seem to often be triggered by feeling cold (sort of like a shiver gone crazy!). No pain with them, other than if she smacks her heel down too hard or something similar. She's very hot and sweaty and tired afterward -- total body workout!

"My Parkinson's-like neurotransmitter disorder is the cause behind my myoclonus, my tremors, my dystonia, and my POTS." -- so tell me more about this, if you don't mind. How was this determined? Testing? Doctor?

Thanks so much!

Debbie

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This is probably not it, but I would question if Neurontin can cause things such as tardive dyskinesia? The symptoms you are describing don't sound like classic tardive dyskinesia. Tardive dykinesia can be caused by a serious side effect of certain psychotropic medications (usually antipsychotics). So, I doubt it is and don't want to scare you.

Just a quick search I found this:

http://www.ehealthme.com/ds/neurontin/tardive+dyskinesia

http://en.wikipedia.org/wiki/Tardive_dyskinesia

As for myself, I have been experiencing increasing muscle twitches and spasms. They happen mostly to my hands and feet and only when they are at rest. They will happen multiple times an hour. They don't hurt and I really am not too concerned about them, except that I hope they are related to the cause of my problems so I can fix it. I just had a nerve conductivity test this week and hope to have the results next week. I have had the twitches 4-5 years now and this is the first time I had the nerve test. No other Doc took them that seriously. I should say that I also have a general feeling of weakness.

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Debbie,

I didn't think I could relate to this, until I read your more detailed description "like a shiver gone crazy", I remembered that I did experience this. It only happened one time for me to that degree. For me, it immediately followed a pre-syncope episode that I had while sitting and actually began when I was laying on the couch with my feet raised up (to counteract the lightheadedness). I did feel cold (although the room was quite warm and I hadn't been cold prior to that moment) and began full body tremors. My son was actually piling blankets on top of me trying to "warm" me up. It probably lasted about 15-20 minutes for me as well.

I have no idea what caused it, but thought maybe it had something to do with my temperature sensor being broken. I don't know if this is the same as what your daughter is experiencing or not - it seems that there is no end to the spectrum of symptoms we all experience. I know that I am careful to not allow myself to feel cold. I tend to overdress in layers or have blankets around me all the time.

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She is on Neurontin for the headaches, and Florinef.

She has had extensive neuro workups from two different neuro groups (including a movement specialist -- Dr. Abbie Collins, who really determined nothing), including MRI's, and nothing found. We originally started down the neuro path as her symptoms all began the day after she hit her head. The full body stuff actually started just as very mild tremor, which was still very concerning to us as that was NOT normal for her.

She's completely 'with it' through these episodes, no spacing out, can't prevent them, and they last around 10-20 minutes. They seem to often be triggered by feeling cold (sort of like a shiver gone crazy!). No pain with them, other than if she smacks her heel down too hard or something similar. She's very hot and sweaty and tired afterward -- total body workout!

"My Parkinson's-like neurotransmitter disorder is the cause behind my myoclonus, my tremors, my dystonia, and my POTS." -- so tell me more about this, if you don't mind. How was this determined? Testing? Doctor?

Thanks so much!

Debbie

Glad to hear she has been seen by neurologists. Sorry to hear she is going through so much. I also experience the shivering gone crazy, I find the best way to stop that is to get warmed up, such as being wrapped in many blankets. When I get just the slightest bit cold, even if I shouldn't be, my full body starts shaking like crazy (shivering), and my teeth chatter, and my breath is affected too. Its almost like I am hypothermic (i.e. sympathetic nervous system excitation). I somewhat blame this on my dysautonomia because its like my body can't properly regulate temperature. I figured the shivering was due to my dysautonomia setting off my tremors and other movement disorders.

Does she still see a neurologist? Was she having the spasming when you saw the neurologists? Have they ever seen it? For example, my doctors weren't able to diagnose one of my movement disorders until I got it on video, as it never happened in their presence. I have never caught my shivering on tape, and most of my doctors when I explain it to them, have no idea what it is, or what the cause is. It is entirely possible your daughter is like me where our bodies don't seem to regulate temperature well, and the change in temperature, or simply being cold, sets off our sympathetic nervous system, which could just be due to her dysautonomia. If she shakes all the time, as in the tremor never goes away (for example if every time she moves her hands shake), or every time she rests, her body shakes, then it is most likely something else, other than bad temperature regulation causing her to shake.

I have seen neurologists most of my life. I started off with an essential tremor in the hands when I was about 8, that eventually moved to my whole body. Then I developed jerking and shivering. Then muscle spasms, then POTS, and then the spasmodic dysphonia when I was 22. I have had all types of testing, such as blood/urine tests for heavy metals, MRI's of brain and spine, thryoid tests, etc... My doctor's were willing to blame a birth trauma for all of my issues, since I was born a month early. They labeled all of my movement disorders, such as polyminimyoclonus, essential tremor, etc...Even though as I got older I developed more and more problems, they kept dismissing my issues. It wasn't until I was diagnosed with POTS that my movement disorder doctor was finally willing to look into a cause, as he said POTS can not be caused by a birth trauma. He said because of my wide-range of problems, and because my spine and brain MRI's were normal, that it is most likely a neuro-transmitter disorder. A lot of my symptoms are similar to parkinsons. The tremor, the myoclonus, the rigidity, my problems walking, my dystonia, my speech and swallowing issues, my stomach problems, my dysautonomia, so he tried me on carbidopa-levodopa which is used to treat a dopamine neurotransmitter disorder, as a test to see if that was the type I had. Carbidopa-levodopa has helped my walking and my jerking considerably. He says I don't have parkinson's as my symptoms are progressing too "slowly" to be parkinsons. So he says it is parkinson's like. He says since the carbidopa-levodopa has helped me, I most likely do have a neuro-transmitter disorder like he is thinking.

A Ear, nose, and throat doctor stuck a camera down my nose, and thats how I was diagnosed with spasmodic dysphonia.

Some testing he is going to do to prove it are, a DAT scan which is a special type of imagining for parkinsons, a lumbar puncture that specifically tests for neurotransmitter disorders, and a special EEG type test that measures my movements which will help him better determine if he diagnosed my movement disorders (like my polyminimyoclonus) right. He is also sending me to a neuro-geneticist for testing, as my grandmother has parkinsons, my mom has POTS, and my dad has an essential tremor, to see if I have genetic reason behind my neurotransmitter disorder.

Did they put a name to the type of tremor she has? For example: essential, chorea, polyminimyoclonus? Does the tremor only happen when she moves or when she rests does she still continue to shake? Or does it only happen when she's cold? For example with an essential tremor, it is noticeable when someone writes, or drinks, or eats, but if they have their hands resting, their hands don't shake.

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I should say also, when I feel like passing out I have auras where I start tasting something metallic and a few times have smelled smoke (when there is no smoke). I have researched and auras are really simple partial seizures happening. So, maybe this is what is happening. It's not really considered a seizure disorder though, from what I'm learning. Could this be what's happening?

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There is a youtube video of a POTS patients with these shivery type all over spasms. I've had them myself and several others on here have also noted similar experiences. If you search on this site, you can probably find the link to the video.

My episodes have been triggered by TTTs or other episodes where my BP has really dropped. They can last up to 6 hours or be as short as 10-20 minutes. They are totally exhausting.

Glad you have had her worked up by Neurologists to check her for other types of movement disorders.

Must be hard watching your daughter deal with this. Hugs to you both!

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There is a youtube video of a POTS patients with these shivery type all over spasms. I've had them myself and several others on here have also noted similar experiences. If you search on this site, you can probably find the link to the video.

My episodes have been triggered by TTTs or other episodes where my BP has really dropped. They can last up to 6 hours or be as short as 10-20 minutes. They are totally exhausting.

Glad you have had her worked up by Neurologists to check her for other types of movement disorders.

Must be hard watching your daughter deal with this. Hugs to you both!

I watched that video, ruff is all I can say...
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Hi Forevertired and Debbie,

I can relate so well to the movement disorders with the Dysautonomia. I'm starting to get the tremors now. I have had Dysautonomia (OH, POTS) for 8 years now. It seems like it is related to the lack of neurotransmitters and or I am wondering possibly a compensatory reaction to having a high heart rate and not enough blood in my head for so long. Does your abdominal muscles get really tight and spasms. Mine do with this condition and it weirdly helps my Dysautonomia, but sometimes causes a lot of acid reflux and difficulty speaking when it gets really tight. I'm taking clonazepam which is helps a small amount. I can't take a high dose of this because it causes my eyes to get to dry and I fall over so much easier, but still searching for other medicines and options. The movement disorder doctors have recommended botox into the abdomen to try to help,but other doctors have told me the abdominal muscles are such a large area that the amount of botox required to calm down the spasm is possibly going to have consequence on my Dysautonomia. It is tough to know what to do. I don't know if this was helpful or not, but just wanted to share just in case.

good luck

Sally

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I used to get these all the time. My doctors prescribed klonopin, neurontin, etc ..Neronotin caused me to have hallucinations.

I don't do this now that I've improved my diet. Gluten appears to have been causing this in me. I'm on the wahls

diet now. And I'm drug free.

If your doctor hasn't spoken to you about gluten, etc you may not want to wait for him/her to catch on.

Our doctors are typically ten years behind. Googling thglutenfile will tell you what you need to know about gluten. Googling functional medicine will explain how the medical community of the future will look.

Tc .. D

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YES! I get full body tremors that look like seizures. They usually start with surges in my chest and a pounding heart beat. When they are really bad I cannot talk and have very blurred vision. I take Ativan at the start of these episodes but often my body is quick to build a tolerance so I have to use more to make them stop. They can last anywhere from 10 minutes to 3 hours. I just had a three month period free of these episodes but they recently came back. I am going back on Gapapentin and uping my Florinef to 0.3 (where it was during the 3 month period...had come down to 0.2 recently) with hopes that will help. I wish you the best and hope you find something that helps!

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My family have a Myoclonic /dystonia presentation on the same side as our Classical EDS but we all have symptoms of ANS dysfunction as well, one of our Dr.'s is looking at possibly checking for the gene involved as years back I was diagnosed with Hereditary Essential Myoclonus, which is now under the Myoclonus Dystonia name.

http://www.ncbi.nlm.nih.gov/books/NBK1414/

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I would explore every possibility, but yes it may be due to her dysautonomia. I have these and I think most people on here call them adrenaline rushes. They are exhausting and can be scary and the anxiety only makes them last longer. I never take anxiety meds these days because of my breathing issues but if I didnt have them I'd take Xanax or the something to relax it..

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Not sure I'm understanding your daughter's symptom right. Do you mean she gets tremors at random moments? Or that she has tremors with her POTS episodes of fainting/pre-fainting? Or something else?

For me, I get myotonic jerks from shock during fainting episodes. That is what my neurologist told me and my cardiologist also told me the same thing independent of the neuro. However, for the life of me it looks like a siezure. I'm sure that sometimes it is a siezure, like a partial siezure because I can always hear although I cannot see, feel, move voluntarily, or speak. It starts with a headache and a tightness in my chest; my breathing becomes shallow; then I lose control over my fingers and start slurring my speech; then I look like I am passed out completely but actually I can still hear; my body sometimes shakes violently and sometimes just my left arm quivers.

Additionally, I get convulsions from certain medications and from cold sensitivity. These are mostly reactions to antiemetics that I take to stop throwing up during pregnancy. If I get cold, I start to shiver and shake and don't go unconscious but my whole body violently shakes until I warm up. It's obviously extreme cold sensitivity, not really neurological havoc like the other type of convulsion. I also get convulsions from medications that raise the heart rate, such as the medication to stop premature labor, triptomyosin (sp?). Again here, they are convulsions totally in isolation of any other POTSy symptom and I am still completely conscious and oriented.

This is just my personal experience...it might have no relevance whatsoever to your daughter's symptom. I have, by the way, undergone mulitple EEGs, MRIs, etc. to evaluate for epilepsy and they were all normal. This problem started with my POTS in 2002 and is worse when my other POTS symptoms act up.

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  • 2 weeks later...

Debbie, I'm doing this right now when I eat. I get the shivers so badly, I feel cold, yet I sweat and then a couple of hours afterwards. No one can find why I do this either.

But, I can tell you that, when my cortisol level goes low--I have Addison's and have to take Hydrocortisone three times daily for it--I get shivers like this, too. Has your daughter had her cortisol level checked, or her adrenal function?

I'm sorry if this has already been mentioned here. I am still in hospital and am kind of brain foggy, so I haven't been able to concentrate on all of the posts.

I hope you find some help soon. These spells are horrible. I feel for her.

Linda

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