Involuntary movements: Seizures, tremors, tics, twitches, myoclonus

Ysabelle-S

Ysabelle-S

Senior Member (Voting Rights)
I'm wondering what the prevalence of seizure and tremor type symptoms is among board members. I would include inability to take stimulants because of tremor or other similar side effects. Perhaps you've had symptoms like this as a consequence of the side effects of prescription drugs.

I pretty much couldn't take coffee anymore after the original virus because I would get terrible fits of shaking, which was bizarre at the time, but the cause was easily pinpointed and I just didn't take coffee or tea anymore. It took months for the symptoms to burn out in spite of that.

I've also had problems with ventolin, and another drug whose name I don't recall. They caused quite violent jerking about, which went on for hours, usually starting about an hour after I fell asleep, so I was woken up by it. It was probably the worst symptom I've ever had. Throat muscles were affected by it as well as arms and legs and body, and god knows what was going on in my brain. It was horrible. Had to take diazepam in very tiny dose to take the edge off it, but if I took a larger dose, it would send me to sleep and then I'd start jerking again and be woken up. So I pretty much had to wait it out for about five hours (up to seven hours). It went on for years. Playstation also caused it. Another trigger was old style computer screens which used to flicker. I had to put a blue screen on top and wear dark glasses as well to try and keep it under control. It sometimes affected me during the day, but was definitely triggered after sleep started. I could always tell if I was in for it too, because I'd get a mild ache or pressure at the crown of my head a few hours before it started, before going to bed. If I didn't get that, I slept fine.

It burned itself out in the end, but it took a long time. I do think the ME has something to do with it. I could drink tea and coffee before the original virus, and have no symptoms whatsoever. I had neurological symptoms right from the point of the virus.
 
@Ysabelle-S, I don't have shaky jerky movements normally. But, I had sudden crushes, and 3-4 times I had my left hand in seizure like shakiness. In all of them I was in A&E after severe vertigo attacks and was put on a drip with mixed vit-B in it. One of these episodes I had a lot of shakiness, I was given Nootropile in the injection. My husband was worried they put me on oxygen after this. I don't experience any of these symptoms in my usual every day life. I am not able to drink coffee; it gives me bad tachycardia and I've reduced tea as I don't seem to enjoy it as much as before. I don't know this helps.
 
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I recently had violent jerking spasms in my legs and back that went on for about 12 hours after a single dose of an antibiotic I hadn't taken before (given to me for cystitis). It was pretty frightening. Happened through the night, they were going to send an ambulance to check me out, but phoned 3 hours later to say they were too busy and to phone my GP. By the time I saw the GP they had pretty well worn off. On the plus side, the single dose of the antibiotic killed the cystitis!

I can't take any caffeine these days - I get very hyper - shaky, racing pulse, missed heart beats etc.

I'm not sure either of these is what you were meaning, but someone might have a similar experience.
 
Normally, if I pace myself properly I'm fine but...

Caffeine, epinephrine & related drugs all trigger the shakes. Including local dental anaesthetic injections.

If I overdo things then I will get the shakes quite badly. Before I learned to pace myself I even had problems eating & using a knife and fork because my hands shook so much.
 
It used to be quite bad, 25 years ago, non epileptic gran mal type seizures. Over the years these died down to mainly just muscle spasms, neck snaps, ticks, that sort of thing, sometimes little for days, then loads. At some point during this I figured out one of the triggers was likely to be alchohol, I reduced but did not stop until other symptoms made drinking deeply unpleasant, without the payoff of getting drunk.

Then intentional tremors became the dominant symptom of that type. They made anything were I had to have any degree of accuracy quite difficult. Soldering took hours instead of minutes, lining up the timing of the various tremors with the work, tricky but possible - until my eyesight went at least. Then I had to get inventive to remove the need for precision soldering at all.

I still have fine motor control issues, due to light tremor, which becomes much worse if I am fatigued even slightly. I also have had for a few years now, a "feedback" issue with my hands, and to some degree my feet, where it's as if my fingers are very cold and will barely work, trying to get them to work faster increases the "feedback" and they actually get slower then completely non responsive.

I'm aware there is a condition that can cause this when hands are cold, but this also happens when it is not cold. It's happening a little now, I can feel the feedback building in my fingers and forearms, reducing my control and accuracy, coz I've typed too long - time for that cuppa I think :)
 
Ysabelle-S said:
@Wonko your post kind of reminds me that I used to get twitching in the face, and also sometimes after reading a bigger, heavier book. My hand would twitch all night, which could interfere with sleep. Haven't had facial twitching for ages.
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Oooh the face twitching. I really hate that. I get it around the eye or at the side of my mouth and it is so annoying!

Also I notice that when I overdo it there seems to be an order to things that go wrong: so long before any "fatigue" might set in my fine motor skills go and judgement when putting a cup on a table will be slightly off -I'll bash it off the edge of the table. Then the very fine shakes. Then the gross motor function gets iffy and then the shakes become much more pronounced.

The earlier in this sequence I stop the better or I'll be back in bed for days or weeks.
 
Invisible Woman said:
Oooh the face twitching. I really hate that. I get it around the eye or at the side of my mouth and it is so annoying!

Also I notice that when I overdo it there seems to be an order to things that go wrong: so long before any "fatigue" might set in my fine motor skills go and judgement when putting a cup on a table will be slightly off -I'll bash it off the edge of the table. Then the very fine shakes. Then the gross motor function gets iffy and then the shakes become much more pronounced.

The earlier in this sequence I stop the better or I'll be back in bed for days or weeks.
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Ah, that's interesting.

As for the facial twitching - I think mine was in the same areas you describe. But have not had it for a long time.

I was reminded of another unrelated symptom I've not had in ages - more than one really - but this one is pins and needles. Don't see ME sufferers I follow talk about that much, but I got it a lot in the early years, and it was mentioned in 1980s ME literature. Probably still is mentioned.
 
Ysabelle-S said:
I was reminded of another unrelated symptom I've not had in ages - more than one really - but this one is pins and needles. Don't see ME sufferers I follow talk about that much, but I got it a lot in the early years, and it was mentioned in 1980s ME literature. Probably still is mentioned.
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yep - pins and needles - like you I don't get that so much these days.

I still occasionally get either numb or burning patches, though not very often. Can happen anywhere, but most often on the thighs.

It's amazing how many symptoms I forget about completely 'till someone else mentions 'em & then I remember I used to have that! That or the bloomin' things make a comeback!
 
Ysabelle-S said:
I was reminded of another unrelated symptom I've not had in ages - more than one really - but this one is pins and needles. Don't see ME sufferers I follow talk about that much, but I got it a lot in the early years, and it was mentioned in 1980s ME literature. Probably still is mentioned.
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Pins and needles, and other "noise", get it a lot, sometimes coz I've overdone it, sometimes just because. Well, not quite pins and needles, not the same as if a limb has been laid on for too long - but close enough as a description I suppose ;)

Again it's another thing that has been there so long I don't think of it as a symptom.
 
I have paroxysmal dyskinesia, kinesegenic and nonkinesegenic to be exact :) So I get intention tremor and choreoathetosis, weird waving of arms and sudden shooting out of my limbs (I have given my husband a black eye!)

It is not related to any chemicals. Noises trigger it, especially sudden or discordant ones. I have had seizure - like attacks including one in Tescos when majorettes suddenly started up and one when classic FM played a very "modern" piece!

Over the years, I have come across 5 or 6 people with ME who have it. Interestingly I became friendly with a woman with MS who also had it and was being seen by a neurologist. He said it can be genetic and he felt that people who had a risk factor for it developed it when they had a neurological disease.

I take baclofen which controls the movements to a certain extent, before that I could not even feed myself but I feel on the edge a lot of the time. Strangely, being in a wheelchair helps as people just assume I have cerebral palsy or something when I start going.
 
Seizures: to my experience, they do get better with antibiotics and other medications with immune modulating effect, but that kind of treatment is not easily available... My current doc choose to treat it as a severe kind of Migraine, but nothing with great effect so far.

Daily twitching and spasms: something I’d wished somebody had adviced me to try earlier is high dose b12 and Magnesium Malate + Potassium. The two latter ones also helps against my extrasystoles. It seems to be connected with OI and hypotension for me.
 
Deleted (rambling)

Yes, increased shaking, tremors and pins and needles are good early warning signs of a crash (PEM), and ease (partially) when resting most of the time.
Still in my first year or so.

@Invisible Woman 's comments match my experience.
 
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Rain said:
Daily twitching and spasms: something I’d wished somebody had adviced me to try earlier is high dose b12 and Magnesium Malate + Potassium. The two latter ones also helps against my extrasystoles. It seems to be connected with OI and hypotension for me.
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Could you put this in the supplements/treatment section for discussion? I'd love to know more and have some other forum members' comments and insight on it.
[I have taken these as supplements at need and suspect they really help but am not confident in my results as there are always so many factors so I'd love the forum's help reviewing the literature]
 
Wonko said:
Pins and needles, and other "noise", get it a lot, sometimes coz I've overdone it, sometimes just because. Well, not quite pins and needles, not the same as if a limb has been laid on for too long - but close enough as a description I suppose ;)

Again it's another thing that has been there so long I don't think of it as a symptom.
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Thank you for reassuring me. Woke with pins and needles in my hand, now hands. Extra emotional as son goes abroad volunteering, flies tonight. A symptom I had forgotten about but comes back like a bad penny.
 
Yes i get both internal tremors in my core and chest that I’ve seen other people describe as like their phone vibrating inside of them and also quite severe visible shaking in upper legs core and chest that can last up to 45 mins or so. During these episodes my temperature can drop to 35 Celsius even when it’s not cold.

I have seen a lot of people talk about these experiences on dysautonomia boards but less so ME...

I tried to upload a video but file said it was too large.
 
Ysabelle-S said:
I'm wondering what the prevalence of seizure and tremor type symptoms is among board members. I would include inability to take stimulants because of tremor or other similar side effects. Perhaps you've had symptoms like this as a consequence of the side effects of prescription drugs.

I pretty much couldn't take coffee anymore after the original virus because I would get terrible fits of shaking, which was bizarre at the time, but the cause was easily pinpointed and I just didn't take coffee or tea anymore. It took months for the symptoms to burn out in spite of that.

I've also had problems with ventolin, and another drug whose name I don't recall. They caused quite violent jerking about, which went on for hours, usually starting about an hour after I fell asleep, so I was woken up by it. It was probably the worst symptom I've ever had. Throat muscles were affected by it as well as arms and legs and body, and god knows what was going on in my brain. It was horrible. Had to take diazepam in very tiny dose to take the edge off it, but if I took a larger dose, it would send me to sleep and then I'd start jerking again and be woken up. So I pretty much had to wait it out for about five hours (up to seven hours). It went on for years. Playstation also caused it. Another trigger was old style computer screens which used to flicker. I had to put a blue screen on top and wear dark glasses as well to try and keep it under control. It sometimes affected me during the day, but was definitely triggered after sleep started. I could always tell if I was in for it too, because I'd get a mild ache or pressure at the crown of my head a few hours before it started, before going to bed. If I didn't get that, I slept fine.

It burned itself out in the end, but it took a long time. I do think the ME has something to do with it. I could drink tea and coffee before the original virus, and have no symptoms whatsoever. I had neurological symptoms right from the point of the virus.
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you may want to look at myoclonus online it explains all the symptoms quite well unfortunately I cant give you the exact link but if you put myoclonus in your search box it will take you right to the page I looked at was second from top.
 
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