Internal tremors and vibrations in long COVID: a cross-sectional study, 2023, Zhou, Iwasaki et al.

I have had the internal vibrations in my lower legs since having the first Moderna vaccine. After having the Pfizer vaccine the vibrations are much worse and I also get a burning sensation on the bottom of my feet. Neuropathy is one of the most reported long term adverse reactions to the covid vaccines.

 

I did have tremors early in my ME, but haven't experienced them in many years.

 

I've had internal tremors when really unwell, even though I wasn't on any medication. I can't remember now where I saw it, but about 30 years ago I read a description someone had posted about a grinding sensation travelling down her spine that felt like an old pedal-operated dentist's drill.

I'd recently had my first experience of the same thing, and it was a good description. It's only happened to me a handful of times, it was really odd, and it usually preceded intense hallucinations and spinal muscle contractions that made me arch up in bed like someone with tetanus. It sounds a lot more unpleasant than it actually was; the contractions were painful, but the hallucinations were among the most exhilarating things I've ever experienced.

I only ever tried to describe it to a doctor once...you can probably imagine how well it went.

 

I've had internal tremors in the past. I have found out that, in my case, it is connected with my cortisol level. When I first tested my cortisol some years ago with a four-part saliva test (which measures unbound cortisol) my results were over the range. I have improved matters by optimising some vitamins and minerals, and also improving my thyroid hormones levels (Free T4 and Free T3 - I don't worry about TSH). I also take a supplement which seems to have a temporary suppressing effect on my cortisol and allows me to sleep better than I would without it.

I have read on thyroid forums that people with low levels of cortisol can also suffer from internal tremors.

 

Oh!! I experienced the same thing when I was first becoming bedbound, for about 3 months (until I stopped sitting up or getting out of bed even to toilet). And since then I've had constant (except for a window of a few weeks once) shaking of some muscle group for 2.5 years. When it's "mild" it's just my tongue or lips, when it's "bad" it's every muscle in my back and legs and scalp shaking, and a grinding sensation (or sound? it's hard to tell the difference sometimes) in the vertebrae of my neck.

Cortisol has always showed up normal, and I don't take any medications with tremors as a side effect. Though benzodiazapines and similar medications stop or reduce the shaking and grinding.

 

Internal Tremor in Long COVID May Be a Symptom of Dysautonomia and Small Fiber Neuropathy, 2024

LINK

 

I am sorry I thought I could keep this one short, but it doesn't work like that, so I added spoilers again to keep the scrolling short - um - shorter instead and - memo to myself - I must remember to take these CNS obs over to the thread started by @Creekside who was wondering

in forum: General and other signs and symptoms

Research idea: Mapping symptoms to brain areas

Who said IT was part of POTS and SFN in the first place ?

Can they say everyone with an IT has POTS and / or SFN that they can treat ?

I don't appear to have either, but I might have an orthostatic intolerance (OI)

I can get what could be called a tremor - I call it a jitter - a signal jitter. My working theory is it is in the neural networks and stems from a shortfall in signal transmission. It comes and goes, and with the usual correlations.

It much interferes with my neurology, thought processes and comms (maybe also coincident with cns flickers and fades, or the bladder buzzing the brain, or - upon brain overload - the small warning signs developed in series: the cricket-clicking in one ear else twitch of an eye else grinding sensation around the ears else echoing of silence else reverb of sound else overcontraction of all facial muscle: before all that the trip of the heart with a variable delay soon after altering the dilution, volume, density, flow, pressure, viscosity, salinity of bloodstreams by input/output of liquids, and then the same trip could result from something pressing around a vein)

Spoiler: I woud be extremely cautious with salines

I would be extremely cautious with salines. I understand that they are expensive if intravenous and require a clinic to administer at least to start with (so might be safe enough) but here's another IT-coincidental thing, my thing: there is something up with my salt loads (another long obs) and so I have - more recently - had to avoid foods rich in mineral salts eg kale powder eg seaweeds (upsets loadbearing leg-muscle tone)

Over-contraction of muscle can become fixed in slight contractures, maybe like in Parkinsonism or some auto-immune attacks on particular parts of the brain with bruxism etc. An overcontracted diaphragm can reduce lung capacity - once muscles can relax the lungs spontaneously open for deeper breaths (I guess thats acetylcholine). Once released the other muscles also flex spontaneously.

Spoiler: obs for my working theory

I can get what could be called a tremor - I call it a jitter - a signal jitter. My working theory is it is in the neural networks and stems from a shortfall in signal transmission. It comes and goes, and with the usual correlations.

It much interferes with my neurology (inludes the cns flickers and fades)

It does not shake muscle so maybe its not in the motor nerves but it can coincide with eg:

- problems of manual dexterity, of sequencing and co-ordination of tasks in time amd space (tasks as in tasks in mind and tasks in environment), of the 1% error in location of points in space, of some loss in depth of field, and of the perception of spatial relationships vanishing i.e offline

In one extremity the interference with visual perception spread (temporarily) to interfere also with aural perception so i know it can get much worse.

The consequences then to hearing can only resemble a stroke when coupled with a flickering of current-speech-related thought also impacting on communication and while unable to describe the hearing problem - stroke cannot affect hearing in this way (said a TIA neurologist)

I can even suffer it without detecting it (except in retrospect by comparison when it stops). Its invisible but once, in extremity, it could have been what spread enough to shake vision.

I don't appear to have POTS or SFN. I might have an orthostatic intolerance (OI).

There is one medicine that seemed to steady this tremulous neural transmission remarkably but the dosage has a sweet spot thats easily exceeded and then it reverses and causes the symptoms it had corrected, also it pre-occupies some UB40 sorry P40 enzyme family so its not safe to take unless monitoring blood levels of some extremely important medications if also taken. The NHS does not reccommend it unless for some form of epilepsy

Not sure how come they believe POTS can manifest as an invisible tremor since the medications they use to treat their POTS patients made no difference, so maybe it was a foregone conclusion with a confirmation bias

Or maybe they know their meds only work on IT co-morbid with POTS if not also co-morbid with SFN

Actually being an amateur I don't even know if a symptom can be classed as a co-morbidity, and there is still some discussion on which is a symptom

Spoiler: more questions on this paper

Or maybe they know its the SFN producing the IT irrrespective of the POTS, but have no meds to treat their SFN patients ands see if it helps or hinders an IT

But I can't now read the whole paper and see what objective findings were specified but got omitted from the abstract.

Maybe they found a way to measure the tremor to confirm the subjective description that so confounds them but I doubt that since they don't know or don't say where to look for it

They cite 5 possible drivers for this mystery. Do they derive this from the cited literature on diagnostic and therapeutic considerations ? Or is it their own catch all working theory in clinic and does the paper say which as its not in the abstract.

But in the abstract it sounds like it derives from a wider review, assuming the Neuorology International Journal sorted that one out for us, it being so atttractive to see an advert by clinicans who know what they are doing

 

I really wouldn't bother with this mumbo-jumbo.

 

Ok, phew, gobbledy-gook mangles the brain

Spoiler: bad for business

Yes it could be bad for business, I gathered Blitsheyn had a name for brash petty infamy, I didn't realise it knew no bounds, that is a bigger gamble, I guess too many clients came a cropper already, got discredited and blocked too. Rabidly

By some cross-sectional comparison the previous paper had noted that these inner shakes tend to mark the iller cases (which also have a different presentation), so this consequent? paper is targeting those most in need of clinical care

"Among people with long COVID, those with internal tremors and vibrations had different conditions and symptoms and worse health status compared with others who had long COVID without these symptoms"

Sad to say there was some limited global immunity for medical trial and error and all the posing of evidence-based medicine could not conceal the reckless experimental nature of clinical convention.

And there I was not daring to say to a doctor that something buzzed my brain and something else jittered my signal transmission, and since covid sound can grind on my brain

Spoiler: the jitter .. the buzz .. the grind

The buzzing of the central nervous system was instant upon its local trigger and stopped with the trigger, so it had to be conveyed through the neurons, and it developed before covid.

I got the grinding sensation around the ears not the brainstem (but there once was a smidgin of hypoperfusion at the brainstem) and this only developed after covid in series with a number of other odd things, all minor but intensely alerting and triggered by overload

The jitter is something else but could produce a grind maybe