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

[Yan]

When I was more severe I too did have something similar for about 12 months. And I found it very difficult to explain. Violent whole body twitches but felt that it started from certain body parts. Often caused from external stimuli. Loud sudden noise would cause exaggerated startled reaction. Touch by someone else would cause it. Perhaps my body was "electrically overcharged", and I had many nights when I was trying to sleep but it was near impossible. When starting to get relaxed, twitching 2-3 seconds apart and no position I tried changing seemed to help. It was really horrible, one of the worst symptoms I've had until now. Luckily it started to occur less and less and lately it haven't really occured at all. I didn't have any medications then or now. I did have EMG taken when I had some twitching but it didn't show anything.

 

[richie]

Yeah I wig out when I’m ill, overwrought, overtired etc arms or legs just fire out. I thought it took more effort to keep them still and that was why?

Anyhoo well done for being the bigger person @Trish they don’t deserve you.

My N-M stuff occurs at rest esp. after activity and most pronounced in states of infection or sarcoidosis flare. Ants crawling under skin (formication) may occur after food or even a glass of water, but so far exclusion diets have not helped. Thank you for the compliment but at the end. I don't know what it refers to!

(I remember twitching and the ants after start of term sports at school after a period of holiday rest but it soon went. I only had shaking when I slipped down a ladder and that was quite different. All the myoc, fasc, and form, stuff began within 3-4 yrs of initial fatigue).

 

[richie]

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.

Do you think there is any infection involved which would cause herx after abx?

 

[richie]

Over 10 years ago was the last time I had significant facial/vocal tics. This was during my worst depression/anxiety/fatigue, all significantly worsened by psych meds. But I've had no tics for years now.

I rarely try any supplements or medications, since they're expensive, and of the dozens I've tried, none have done anything.

Recently, I decided to try curcumin, the Longvida formulation - only a single dose. Within a few hours I had facial tics again. Two weeks later, they're still here, coming and going. Currently at a peak, because I overworked and am now in a crash.

So just speculating on what this could mean. Could the anti-inflammatory action of curcumin (this brand has been shown to cross the BBB) have allowed a pathogen to gain ground in my brain, restarting the tics? Apparentally, some believe tic disorders and OCD are another "Long" disease, often appearing after childhood Strep. Just found out about the PANDAS theory last night.

Though as far as I can tell, the only thing that's worsened is the tics. Though it's possible the crash I'm currently experiencing is a bit worse than normal.

It could be a coincidence and unrelated to curcumin, but it's been years, and it restarted a few hours after taking a single dose. And it's not like it's just one of many supplements I've started lately, and just happens to be the one on the day the tics restarted - I only try something maybe once every few months to every few years.

I read a page about turmeric being problematic for some with Lyme . The hypothesis was that it restrained cellular immunity and gave the spirochetes an easier time. After a worsening of symptoms I stopped low dose naltrexone with that possibility in mind. No rigorous science to back this up but was not imo worth the risk for me, though I have taken moderate levels of turmeric in a liver regime.

 

[richie]

It is interesting looking back over the merged thread. My impression is that the wide variation of things reported and the relatively small number make them pretty consistent with incidental problems with other causes. Ventolin-induced shaking is something every medical student used to see on a night in A/E. Local twitches are a common bugbear for quite a lot of normal people. Ill people in general get intention tremors and so on. They also black out, and sometimes that will be associated with involuntary movements.

But a few people do seem to report what sound like major involuntary movements of central CNS origin - Wonko, Mithriel, Robert, perhaps notably. I just wonder whether for some an initial triggering illness with CNS involvement occurred - something vaguely similar to Sydenham's chorea post streptococcal infection. It may be that the original Royal Free outbreak was indeed of a virus capable of producing transient CNS changes.

But I see all that as very different from the suggestion of 'severe ME/CFS' causing atypical seizures - with the implication of some sort of neurological damage occurring. I don't think there is evidence for that and it is potentially a very misleading thing to have in a patient information pack.

Is exclusion of myoclonus as a sign of ME harmful, helpful or both/and?
In the presence of a differential such as my own sarcoidosis, inclusion of myoclonus in ME it may be misleading. Further there is much dispute as to what symptoms in sarc patients are sarc and a debunking of parasarc and postsarc is not uncommon, with an attempt to foist such into CFS. In the light of this the CFS community may well not want a number of symptoms on the criteria list if they cause large scale inclusion in CFS of fatigued patients from another condition. Fair enough.
But there is another side. Where do ambiguous patients like me go? I had fatigue myoclonus and all for decades before sarcoid diagnosis and similarly for Lyme. If sarc et all do not want us and CFS does not, what do we do? Well, I can get into CFS on other criteria, though para and post sarc and/or Lyme cover them too. But when we find that according to that Spanish study 40% of CFS patients had myoclonus what should we think of that? If myoclonus is excluded as a sign of ME, it might not be reported at all in studies of ME and any relevant statistics suggesting that myoclonus may be a sign symptom of ME will never come to light. This might have some affect on patients.

Problems if you do include and problems if you don't. A note in any information pack would not imo be superfluous or misleading if accompanied by advice that the presence of myoclonus may indicate another condition. I think exclusion is aprejudgement of the issue while contrary evidence, anecdotal or otherwise exists.

 

[bicentennial]

@richie may I ask you, do you or did you ever get the crawly sensation in the flesh of your legs and if so could it be said to resemble "restless legs" or if you also got / get restless legs: then is it distinctly different ?

ps I read the (accurate) compliment to Trish for being bigger than the MEA and so more eminently capable of leading, enlightening, illuminating, conducting and moderating, also Chairing and assisting to govern and liase a Patient Engagement Procedure and do so without hiring an unpaid trustees with extensive tech capability - as one does - aren't people just phenonmenal ? Yes people are just stupendous, we all get there in the end

My N-M stuff occurs at rest esp. after activity and most pronounced in states of infection or sarcoidosis flare. Ants crawling under skin (formication) may occur after food or even a glass of water, but so far exclusion diets have not helped. Thank you for the compliment but at the end. I don't know what it refers to!

(I remember twitching and the ants after start of term sports at school after a period of holiday rest but it soon went. I only had shaking when I slipped down a ladder and that was quite different. All the myoc, fasc, and form, stuff began within 3-4 yrs of initial fatigue).

 

[rvallee]

A lot of pwME report shaking when tired&wired/adrenalined, which is sometimes referred to in strong cases as twitching or tremors.

I don’t think that is equivalent to seizures though.

I'm pretty sure that a number of "functional seizures" are actually that. Definitely not all, definitely some.

 

[Robert 1973]

FWIW I have had severe ME/CFS for 32 years and I get abnormal involuntary movements, which at times can be quite violent. They were observed separately by 2 ME/CFS consultants when I was an in-patient during admissions to 2 different hospitals in the 1990s. Neither consultant appeared to consider them unusual*. The symptoms have never been given a name and I have never been given a separate diagnosis for them.

[Edit: “unusual” possibly not the best word. It may be more common for severe patients not to have these symptoms but my impression was that the consultants had seen them often enough in severe ME/CFS patients not to be surprised by them.]

Further to my post above: I've no idea if the movements I get are the same or similar to other people with severe ME/CFS but I would put mine in to 2 categories:

1) Involuntary movements when I'm semi-conscious: When I am waking up, going off to sleep, or "resting" in a semi-conscious state, I often find that my hands start flapping about rapidly. My arms don't move, only my hands. It feels very abnormal but it is not particularly unpleasant in itself. If I notice it happening I can stop it by fully awakening myself. I suspect it probably happens when I'm fully asleep but I don't know if that's ever been observed. When I'm in the same semi-conscious state I sometimes find that my mouth snaps shut forcefully and involuntarily, which can be painful if my tongue is in the way.

2) Semi-involuntary movements when I'm fully conscious: This tends to be in one leg and always the same leg. I describe it as semi-involuntary because I can usually stop it happening if I try hard enough -- a bit like stopping your teeth from shivering by clenching them together, or stopping yourself from urinating or defecating when you are desperate to go -- but it takes a great deal of effort, and sometimes it is easier just to let it happen. Unlike the hand movements, these are extremely unpleasant (both when I am resisting them and when they are happening) and often violent. When they get very bad my whole body can go into what I call convulsions but that may not be the correct medical term. Anxiety does not trigger these movements -- I can be in a very anxious state and not have them at all -- but whatever is causing them also appears to cause me to feel very anxious/unsettled. There is no noticeable increase in my anxiety between resisting the movements and letting them happen.

It was notable that these "semi-involuntary" movements were made much worse when I was prescribed Temazepam (for insomnia), as though relaxing my muscles prevented me from being able to stop my leg flapping about. Sertraline had a similar effect, although I didn't notice any muscles relaxation, only that the leg movements became much worse. In both cases I ended up having violent whole body "convulsions" for prolonged periods which were entirely involuntary and extremely distressing.

[Edit: minor changes to wording for clarity.]

 

[richie]

@richie may I ask you, do you or did you ever get the crawly sensation in the flesh of your legs and if so could it be said to resemble "restless legs" or if you also got / get restless legs: then is it distinctly different ?

ps I read the (accurate) compliment to Trish for being bigger than the MEA and so more eminently capable of leading, enlightening, illuminating, conducting and moderating, also Chairing and assisting to govern and liase a Patient Engagement Procedure and do so without hiring an unpaid trustees with extensive tech capability - as one does - aren't people just phenonmenal ? Yes people are just stupendous, we all get there in the end

Good question. From what I know of restless legs there is (often at least) an imperative to move for relief. As to crawly sensations and twitching , I would say "not restless legs". As to myoclonus generally againn "no", except as I recovered from my recent myoclonus episode I went through an ensuing episode where I did feel the urge to kick voluntarily. At sleep onset it may be difficult to tell as consciousness is altered but apart from legs (inside ear, palate, jaw) I felt no semi voluntary phenomena, just spontaneous activity. Sleep onset is often accompanied by myoclonic jerks anyway, I believe.

I have historically noted worsening of all such phenomena on some antidepressants - amytrip. and trazodone , the latter of which caused seizing up of the hamstring area.

The only thing where I do get that urge to move the legs is if I take larger dose of inositol. No explanation though it may feed some infection possibly (cryptococcus I think in some people).

Good to see you appreciate Trish. I don't know much about the ME Assco really but her review of the new book was imo very apposite.

 

[Jonathan Edwards]

Semi-involuntary movements when I'm fully conscious: This tends to be in one leg and always the same leg.

This sounds like the involuntary movements seen associated with local pain syndromes with trophic changes - traditionally called Sudeck's atrophy or reflex sympathetic dystrophy. This is a fairly stereotyped phenomenon that must have something to do with pain gating in the spinal cord I think.

It may be that this is something seen more often in people with ME/CFS and that there is some overlap in mechanisms.

But it is quite different from 'non-epileptic seizures' which were what started the current discussion. The involuntary limb movements that go with pain syndromes are not associated with any loss of consciousness and, as you describe, the person may attempt to control them and manage to do so, although it is clearly not that easy to.

 

[AliceLily]

In my severer years I experienced the tremors (felt like adrenaline) when I had done too much. It was a non visible tremor that was unpleasant. I could not drink a cup of coffee without feeling it. Now, 20 years later I can drink two coffees in one day and be ok. Two coffees are rare though.

I also experienced the sudden jolts, twitches (especially in one eye). If I were cold my whole body would shake. It was a very strong shaking and I remember one particular day when out it felt like I could feel pipes inside me moving like the that of a water pipe when you suddenly turn a tap on and off quickly. Bizarre feeling, it felt just like that and it suddenly stopped just like a tap pipe.

You feel so much more with severe ME, it is so unusual. Any change in the body chemistry and it feels like it affects the ME.

I have never had anything like a seizure though.

 

[darrellpf]

I get very small spasms on my calf muscles, much like there is something moving under the skin. They aren't really even noticeable unless I happen to be wearing shorts.

Way back 10 years ago these "fasiculations" were often listed as an ME/CFS symptom.

My least favorite medical words are "idiopathic" and "benign". They mean "I don't have a clue why it happens and I'm not interested in finding out". Usually followed by a doctorly shrug and a change of topic.

I see this when I suggest that my high blood pressure since my 20's just elicits a shrug when I suggest it is a perfectly reasonable way of increasing cerebral perfusion. Then the doctor says "that happens to lots of people. Doubt it is ME/CFS because orthostatic intolerance is only tachycardia or fainting"

 

[Arnie Pye]

Way back 10 years ago these "fasiculations" were often listed as an ME/CFS symptom.

I used to have benign fasciculations quite often and they were very painful. I found the cause of mine purely by luck. I had severe chest pain one night and was taken to hospital to check for heart attack. I got a load of blood tests done which showed no sign of a heart attack so I was sent home. But before I left I asked for a copy of the results of all the blood tests they'd done, and an obliging junior/trainee doctor gave them to me. The only thing of note for me (a non-doctor) was that my potassium level matched the bottom of the range (3.6 mmol/L - every other result for potassium I've ever had was well in range e.g. 4.3 - 4.5 ish). Ever since then if I get cramp or fasciculations I treat myself with a very small dose of a potassium supplement, and so far it has always helped.

To help with cramp I've found that keeping my iron and ferritin at a good level (well in range) helps enormously. And with improved iron levels I've discovered it also stops my eyelid twitching.

 

[bobbler]

I used to have benign fasciculations quite often and they were very painful. I found the cause of mine purely by luck. I had severe chest pain one night and was taken to hospital to check for heart attack. I got a load of blood tests done which showed no sign of a heart attack so I was sent home. But before I left I asked for a copy of the results of all the blood tests they'd done, and an obliging junior/trainee doctor gave them to me. The only thing of note for me (a non-doctor) was that my potassium level matched the bottom of the range (3.6 mmol/L - every other result for potassium I've ever had was well in range e.g. 4.3 - 4.5 ish). Ever since then if I get cramp or fasciculations I treat myself with a very small dose of a potassium supplement, and so far it has always helped.

To help with cramp I've found that keeping my iron and ferritin at a good level (well in range) helps enormously. And with improved iron levels I've discovered it also stops my eyelid twitching.

It’s such a shame no one tests us properly @leokitten mentioned on another thread tests I’m pretty sure I’ve never had

I’m glad you got those results and it helped but I don’t understand the attitude which pervades of choosing not to and even if it is close to reference range assuming that it couldn’t be that in some people particularly when they are very ill that would make a difference- I can’t help thinking that in different hands someone might have been laughed at if they these days said they have to take a small dose supply because they get this at that blood test level instead of being interested and thinking what a big change fit a person fit such a small piece of info just being taken for what it is

 

[dratalanta]

I get myoclonus in any/all of my limbs when crashing while severe. I had moderate ME for many years and never had that symptom. When the myoclonus started as my symptoms became severe I was sufficiently alarmed that I went to the GP - very unusual for me - to confirm it wasn’t a separate neurological problem. At the time I had never heard of myoclonus as an ME symptom. Now I consider it a reliable if unpleasant notification that things are about to get bad.

Like @Robert 1973 I believe I could control it from a signalling perspective, but I do not usually attempt to do so because doing so is exhausting.

Using my muscles forcefully when they are very fatigued is painful (to the point I often cry out), but no more so than it would be if I were making the same movements voluntarily. After the myoclonus passes I feel very tired and confused, and often appear unconscious without truly being so.

When it first happened I described it as “like a seizure” because I felt as if someone else were shaking my body like a ragdoll. I would describe the experience as involuntary movements while retaining the capacity to make voluntary movements as well, though these are limited by pain and debility.

 

[Jonathan Edwards]

I have been skiing this week and for the first two days had serious problems with knee pain to the extent that I had to put far more effort into skiing badly than I normally do into skiing competently. It was also bad weather. (Fortunately today my knees have given up complaining and the sun came out.)

On the first day things got so bad that we went into a mountain restaurant for an early snack lunch and I could barely manage to get to the table and sit down. having done so, for the first time in my life I developed a rhythmic involuntary movement of my right forearm, which was resting on the table. I would not call it myoclonus and it reminded me of the involuntary movements I have seen with local chronic pain lesions. It was closer to a sine wave oscillation than the myoclonus of a spastic arm or epilepsy. I then took that arm off the table and rested the other arm, which proceeded to do the same thing. It was nothing like a tremor. It was a deep and quite powerful oscillatory movement.

I interpret this as an indication that maybe when the central nervous system is operating under very adverse signals input from the limb musculature it can generate involuntary movements like this under pretty nonspecific conditions.

That makes me think that maybe in ME/CFS similar involuntary movements (as for local chronic pain) may not be so surprising. As I say, I didn't think this was anything like the myoclonus of a seizure.

 

[Sasha]

I think that evidence is needed to justify including involuntary movements because they do not as far as I can see 'fit' in any way with other features of the syndrome. The other features are pretty much all unpleasant symptoms that make it hard to tolerate exertion, environment, foods etc. Involuntary movements such as seizures are unrelated to that.

I get myoclonic jerks (my shoulders jerk forward) when I lie down and relax sometimes, particularly when my ME/CFS is bad. I once did a two-hour ambulance trip that was beyond my capacity and when I arrived in the hospital waiting room, lay down. Every time I tried to relax my body, I got a powerful myoclonic shoulders-jerk and it was quite a while before I could fully relax and rest.

So maybe there could be a link, or maybe I've misunderstood the way you're coming at this.

 

[Jonathan Edwards]

If the movements are similar it would confirm that rhythmic jerks may be set off in any situation where the CNS cannot cope with the challenges from the limb muscles and/or proprioceptive sense organs

 

[Sean]

I interpret this as an indication that maybe when the central nervous system is operating under very adverse signals input from the limb musculature it can generate involuntary movements like this under pretty nonspecific conditions.

If the movements are similar it would confirm that rhythmic jerks may be set off in any situation where the CNS cannot cope with the challenges from the limb muscles and/or proprioceptive sense organs

Which could be interpreted as non-pathological compensatory or displacement movements. (Not sure of the correct terminology.)

I occasionally get a slight rhythmic side-to-side shaking of the head when tired or dealing with a high level of PEM (like today, after an hour in the dentists chair yesterday). Might be an inherited component as one or two of my forebears had an essential tremor, though not enough to significantly interfere with their lives.

Not exactly the same thing, but it reminds me of cats and dogs getting the zoomies or equivalent behaviours to compensate for not having the opportunity to express natural stalking and hunting behaviour in the wild. That normal healthy energy and drive has to go somewhere.

 

[Wyva]

I just realized I have something similar to the internal tremors sometimes mentioned on the forum. When I have really bad days, my symptoms are the worst right after waking up and I have two symptoms that are only present at this morning time but they also disappear relatively quickly. One of these is not being able to hold my balance well at all, the other is this vibrating feeling. The vibration is not a new symptom, I've had it several times at my worst but I have never paid too much attention to it as it is short-lasting, somewhat rare and not really bothersome to me. I keep forgetting about it.

It is a vibration, not intense but noticeable. I don't shake or feel any kind of actual movement and it can be felt deep inside my body, in my trunk/upper body. I have no idea what the reason can be. I don't know what it is that actually vibrates inside my body.

I'm not severe, so this may be a milder version of what some other people experience (similarly to how my sound sensitivity is significantly milder than for severe people). Or it may be a different thing, who knows.