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

Not seizures, but i do get slight action tremor in hands after pem, e.g when holding a coin in your hand. I also have probably thousands of fasciculations in my legs each day for 2-3 years. Funfun :D It seems the nervous system is heavily involved in the disease picture
 
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.
 
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Just had/having Covid possibly first time. I have had myoclnic jerks of legs, ankle, palate, in throat, jaw, fluttering in middle ear , twitching toes toes, neck/head twitch on and off for 30+ years with varied intensity. During covid jerking of legs, jaw and head twitch were much worse. When my sarcoid began?/was discovered? in 2021 I had a revival of things like middle ear fluttering which had relented since ca 1993.
The feeling if mild is very similar to that induced by an electromyograph procedure.
Heavy common cold has also induces this type of thing
Anyone lese with this phenomenon and an apparent link to immune arousal and /or shift/
 
richie said:
During covid jerking of legs, jaw and head twitch were much worse.
Anyone lese with this phenomenon and an apparent link to immune arousal and /or shift/
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Yes, the day before I know I have catched a virus I get some kind of neurotransmitter imbalance with both more easily triggered orthostatic intolerance and myclonic jerks and cramps. I can get stuck in positions as well, much like Parkinson’s. There seems to be a connection between the immune systems initial response to the virus and the nervous system that goes havoc. For some reason I don’t know, antihistamines (Desloratadine) respectively Ibuprofen helps in those situations.

I’ve read somewhere that when different kinds of histamine receptors are getting activated they can make different kinds of neurotransmitters to increase or decrease. For me it all happens very fast and my symptoms can mimic both Parkinson’s and Myasthenia Gravis, probably depending on the type of imbalance that occurs. Just an amateur guess, but at least now I know what helps when it happens.
 
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Lindberg said:
Yes, the day before I know I have catched a virus I get some kind of neurotransmitter imbalance with both more easily triggered orthostatic intolerance and myclonic jerks and cramps. I can get stuck in positions as well, much like Parkinson’s. There seems to be a connection between the immune systems initial response to the virus and the nervous system that goes havoc. For some reason I don’t know, antihistamines respectively Ibuprofen helps in those situations.

I’ve read somewhere that when different kinds of histamine receptors are getting activated they can make different kinds of neurotransmitters to increase or decrease. For me it all happens very fast and my symptoms can mimic both Parkinson’s and Myasthenia Gravis, probably depending on the type of imbalance that occurs. Just an amateur guess, but at least now I know what helps when it happens.
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Thanks Interesting.
 
Merged thread
Nightsong said:
That's an excellent letter, Trish; I don't think there's a word I disagree with. MEA's direction of late has been very concerning. A few more thoughts for MEA, in the spirit of another critical friend:

The patient-facing materials produced by MEA should be reviewed as a matter of urgency: some of them, like this one I mentioned recently, contain significant errors, and many more make dubious or unsupported assertions. A number of documents on the MEA's website even suggest that "atypical" "fits or seizures" and other symptoms that typically fall squarely under the rubric of FND are a part of severe ME/CFS, which is not only entirely unevidenced but highly counterproductive advice to give.

.
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I agree The ME association prints lots of questionable stuff but...
Where is the evidence that these seizures are not or should not be see as part of severe m.e.? I've seen several people in severe ME spaces Report them, it may be that the drs who look after such patients in the UK Dr Weir dr Speight etc are seeing this often and reporting it and atypical neurological disturbances fit with all the other atypical and unexplained severe m.e symptoms
 
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Cinders66 said:
Where is the evidence that these seizures are not or should not be see as part of severe m.e.?
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From a medical point of view the issue is what is legitimate to include in a syndrome category such as ME/CFS. The vast majority of people with ME/CFS do not have abnormal involuntary movements but do have similar problems such as PEM, sleep disturbance, brain fog. 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.

A number of 'ME physicians' report regularly diagnosing things in people with ME/CFS that I have not seen any basis for that. I would be quite sceptical about the ideas circulating in 'ME spaces' on this. A lot of those spaces confuse ME/CFS with the likely non-existent neurological illness that was described to explain events at the Royal Free Hospital.

I think it likely that people who have 'atypical fits' and may gather a diagnosis of ME/CFS may have little in common with people with ME/CFS in general. Quite often they seem to gather a whole set of diagnoses, like EDS and POTS and MCAS, that may well be meaningless in the context, and I am not sure we have good reason to think a diagnosis of ME/CFS is any more meaningful in the context.

I noticed that a carer of a person with severe feeding difficulties referred to neurological complications as being a risk with ME/CFS and as far as we know this is not the case. I worry that it gives patients and carers a distorted picture of the illness that may cause significant harm.
 
Everything I write must be caveated by the fact that Lyme, sarcoid, glycogen processing and/or autophagy issues are possible differentials or co-morbidities. That said myoclonus has been a prominent feature of my condition and co-occurs with immune arousal and or infection. FND is not a place I would like to land and an "FND" that occurs only in a period of immune arousal is imo not an FND. Some doctors would say "It's neurosarcoid" others would not.
Twitching is listed in ICC and CC, and a Spanish study found 40% with myoclonus, but who knows what they might have had.
Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis_ A Nationwide Population-Based Cohort Study

Myoclonus is not a fit but it is abnormal involuntary movement.
 
Yann04 said:
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.
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Twitching in my experience has been palatal, inside the ear, digits, head twitch, jerking jaw, jerking legs etc, Some would be more like fasciculation but maybe the head. legs and jaw would be myoclonus. All part of the same thing imo, though not seizures as you say. High acute stress is imo much less of a culprit than immune arousal. I had it during covid recently and during sarcoid flare like it was back in the 1990's. the twitching and myoclonus is not like emotional shaking etc at all . A very similar sensation to what you get on an EMG.
 
Jonathan Edwards said:
The vast majority of people with ME/CFS do not have abnormal involuntary movements but do have similar problems such as PEM, sleep disturbance, brain fog.
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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.]
 
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- bearing in mnd that the mildly affected being in a minority are atypical too and like all other atypical minorities not representative of the whole cohor,t but the degrees of severity are included in the respective diagnostic criteria for ME / CFS and / or LC

- the other atypical symptom descriptors are not incliuded for a disgnosis unless the MEA and associates have in mind to redfine ME / CFS and / or LC for ipurposes of research and tools

taking each point from @richie and @Jonathan Edwards might they both agree to some verion of:

- the host of atypical symptoms which are NOT in the diagnostic criteria for ME / CFS or LC could be listed for the avoidance of mission creep (inwards ANi outwards) but only if very clear that these defined SUB-COHORTS report atypical symptoms which are NOT relevant to our diagnoses BUT are apparently associated in some diagnosed cases, so not the cohort but the symptomatic sub-cohorts

- which will become clearer when the next MEA research (epidemiology) is secured (depending on the current design of its input and output, current design as in oddly coincident to this trail of adminstrative woe we are resolving by lette

- meanwhile may we accurately say associated in a minority of cases

Then maybe MEA AND the wider ME / CFS & LC communities CAN agree to classify atypical sub-cohorts in the format offered by @Cinders66 as "atypical disturbance
(unattributed or attirbuted). Its may be easier to agree if we do not do attributions, just symptom descriptors, ad=nd for now aviding the words for allergy, intolerance and sensitivity which are still blurredr in NHS practice

so diifficulty is better, the concept offered by @Jonathan Edwards as in "hard to tolerate environment, foods etc.

I would put difficulty with food and environmental input into an atypical bracket as some cases happily do not have these difficulties.

- But I think difficulty with exertion is a major diagnostic criteria. Here it makes more sense to say "hard to tolerate", because there are many types of exercise difficulty and sloppies don't difeerentiate between exercise and exertion

- I very much like being able to say "hard to tolerate", but its too easily taken up and run into intoerance, which technically i am not diagosed with)

- our tolerance-failures are such a major factor it needs to be flagged and described in a required universal language, but is it safe to say typically intolerant of exertion and atypically may be intolerant also of some or all foods, some environmental substances, sound, light, touch and this is in now way avoidant etc

- if necessarily attributed (and attibutable - which a doctor must advise) then eg to hepato-biliary, gi, gu, nutrition. reactivities, pulmonary, heart, neck, neurology, neuromuscular, musculo-skeletal, movement,orthopaedic, bone density, abnormal involuntary movement +/- trigger +/- exacerbation during flares eg - eg shakes / tremor / twitch / voiding / reflux, orthopaedic, bone density, rheumatoid, malnutrition, dehydration (but not deconditioning and frailty as these have other domains), etc (with any report of immunology and / or infectious diseases to be referred promptly to a specialist instead and immuology for outpatients vastly expamnded again, thanking you Wes Streeting)

- without appending diagnostic labels which would be too problematical due to each having spawned several different species, so where one of our atypical symptoms is within diagnostic criteria for another condition then its label may stay there

Domains must be differentiated and ours must be defended

SO these are the "possible differentials or co-morbidities" a phrase proposed by @richie - i think co-morbidities may be jumping the gun as warned, so maybe the doctors can agree on differentials and drop the co-morbidiie word as the NHS is not agreed on it. Some atypical suymptoms are no atti=ribiutale anyway, and somehave no name at, or are just a symptom mame like diarrhoea. (darrhoea is a common sub-cohort of flu and covid too.
-
Could all doctors agree that

- the atypical symptoms will mount to the hundreds because the MEA is now including LC in its new epidemiology

- the atypical symptoms are not included in - and are not to be included in - the definition and diagnostic criteria for the either of the two ME/CFS * LC cohorts


Jonathan Edwards said:
From a medical point of view the issue is what is legitimate to include in a syndrome category such as ME/CFS. The vast majority of people with ME/CFS do not have abnormal ,,,, but do have similar problems such as ....

I noticed that a carer of a person with severe feeding difficulties referred to neurological complications as being a risk with ME/CFS and as far as we know this is not the case. I worry that it gives patients and carers a distorted picture of the illness that may cause significant harm.
Click to expand...

- we would not have a distorted picture if the literature made clear distinctions between the sub-cohorts defined by degress of severity, a fluid situation involvinh 4-5 minorities some claiming to be a majority hence the blur I suppose

- my heart sank when I read a wondeul full description of what a GP needs to do to accomodate a person with most severe M.E on a home visit, i thought some of our GPs reading this would be taxed and vexed and totally resistant and as it could be too easily seen as representative of all cases and also not at all consistent with the mild cases seen in clinic

- and yes very scary to a mild case if not clearly differentiated so that everyone can without fear, let or hindrance report their own case - accurately once offered consensus on the terminology still at large and in the wild making claims

- and for some off reason may i note although the nation is now familiarised with vivid glimpses of severe ME ? CFS we still have no such picture whatsoever of the mild cases of ME / CFS which we do not want to scare and who are still claiming to be the majority for purposes of a national programmed ME/CFS delivery budget maybe squeezed in under the [return to health and work talking therapy for mild anxiety/depression, longterm conditions and other rehab integrations]

- is it correct to say that with some feeding difficulties people like me found some odd neurological (spinal) sensations once weight first dropped below 7.5 stone, but no such thing occurred the 2nd time when it also dropped further to below 7 stone, so maybe there is anothe ractor or the diet manageable was lacking someting the first time though less adequate the 2nd time

re the arguable co-morbid labels - if there is diagnostic criteria for ME/CFS then its ME/CFS with atypical symptoms as defined (in ME/CFS clinics and research and literatuers, , and in th other clinics etc its the other with ME / CFS symptoms ? ?

Yann04 said:
... shaking ... sometimes referred to in strong cases as twitching or tremors.
Click to expand...


richie said:
- possible differentials or co-morbidities.
- Twitching ... abnormal involuntary movement +/- trigger, .
Click to expand...
 
Cinders66 said:
... seizures
... several people in severe ME spaces Report them .
... maybe ... atypical neurological disturbances fit with
all the other atypical and unexplained severe m.e symptoms

​
Click to expand...

will MEA co-operate with S4ME
on a definitive list of symptomatic sub-cohorts
starting duly with their mildly affected or frail minorities
and opening up their
otherwise exclusive
patient-participation-engagement (PPE)
in their design
of their (part-funded £1m)
2025 epidemiological research proposal
(still necessarily under wraps)
so that eveypone
can in advance agree
on the defimition of
cohort and sub-cohorts and sub-sub cohorts​
so its cost-effective
i.e ethically and methodically
productive of probably useful science (knowledge)​
 
richie said:
Everything I write must be caveated by the fact that Lyme, sarcoid, glycogen processing and/or autophagy issues are possible differentials or co-morbidities. That said myoclonus has been a prominent feature of my condition and co-occurs with immune arousal and or infection. FND is not a place I would like to land and an "FND" that occurs only in a period of immune arousal is imo not an FND. Some doctors would say "It's neurosarcoid" others would not.
Twitching is listed in ICC and CC, and a Spanish study found 40% with myoclonus, but who knows what they might have had.
Comorbidity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis_ A Nationwide Population-Based Cohort Study

Myoclonus is not a fit but it is abnormal involuntary movement.
Click to expand...
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. [refers to Trish's open letter to the MEA, which was the topic of the thread these posts were moved from]
 
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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.
 
Jonathan Edwards said:
From a medical point of view the issue is what is legitimate to include in a syndrome category such as ME/CFS. The vast majority of people with ME/CFS do not have abnormal involuntary movements but do have similar problems such as PEM, sleep disturbance, brain fog. 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.

A number of 'ME physicians' report regularly diagnosing things in people with ME/CFS that I have not seen any basis for that. I would be quite sceptical about the ideas circulating in 'ME spaces' on this. A lot of those spaces confuse ME/CFS with the likely non-existent neurological illness that was described to explain events at the Royal Free Hospital.

I think it likely that people who have 'atypical fits' and may gather a diagnosis of ME/CFS may have little in common with people with ME/CFS in general. Quite often they seem to gather a whole set of diagnoses, like EDS and POTS and MCAS, that may well be meaningless in the context, and I am not sure we have good reason to think a diagnosis of ME/CFS is any more meaningful in the context.

I noticed that a carer of a person with severe feeding difficulties referred to neurological complications as being a risk with ME/CFS and as far as we know this is not the case. I worry that it gives patients and carers a distorted picture of the illness that may cause significant harm.
Click to expand...
I don’t know whether the proportion increases as people get more severe and into very severe and I think that’s quite important given what we’ve seen / heard regarding how some have been treated in hospitals (where they might also be more exposed to eg stimuli , often without an understanding of how long one will take to recover from just one exposure)

I don’t know how common/unusual they are until you are getting into that very severe end?

I agree in the sense that writing these off as ‘just another symptom’ as it’s quite serious isn’t ideal but I’m not sure they are another illness vs that some if they get ill enough and are in a poor environment (or some it’s not even that just how low the threshold is) ie it’s linked rather than what’s sometimes been said of ‘it’s behavioural because eg me/cfs doesn’t get that severe’ (without evidence it’s behavioural).

you’d like to think that appropriate investigations vs the level of illness (and them withstanding it) could be discussed and knowledge could be developed there.

I think we’d need those who have spoken to a number of those who’ve been in this more severe situation to give a sense of what these are and whether it’s similar across individuals and any sense of how common / many it could be.
 
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