Muscle twitching since covid booster

[jules321]

I’ve had persistent (not constant but daily) twitching that began 2 hours after my covid Pfizer booster six months ago. The twitching started in one eyelid. A few days later the other eyelid, then my nose. Others could not see it, but I could feel it and see it in a mirror up close.

The twitching was mainly on my eyelids for the first couple months then slowed down for a couple months which relieved me… but now is more often and in more areas on both sides like fingers, legs, eyelids, eyebrows, foot, arm. Again not all day but everyday. They are not severe where others could see it by just looking at me, but for example my husband could clearly see my finger twitching back and forth when I showed him.

I’ve been unable to see a doctor in person because we have a very high risk child re covid so are being extremely cautious re any potential covid exposure. I’ve had many video consultations with my doctor over the months and one with a neurologist. Both did not seem overly concerned. My doc thinks it was caused by inflammation from the vax and said I’m also likely overstressed (true), overtired (true), and anxious (true).

I am 51 years old and otherwise fairly healthy.

For once in my life, I really want to believe this is all a result of anxiety. I have had intense HA for years but cannot imagine that anxiety could cause this kind of persistent twitching?

I’m worried the booster uncovered or caused some terrible disease like hemifacial spasm (which was ruled out both sides of face were affected), ALS (I have no muscle failure just twitching but still scares me as a possibility- and I read the sticky post here about ALS), MS, benign fasciculation syndrome, etc.

I’m so deeply scared and just want the twitching to stop.

[kyllikki]

I'm a little more than one decade younger than you and I have the exact same, except with confirmed muscle palsy effecting my eyes, too. For what it's worth, 3 neuros have been unconcerned with the overall twitching, and it has slowed down significantly as I've gradually returned to using my body fully as opposed to desk-sitting throughout all of 2020 and half of 2021. Like you, my twitching also started with just one eye, but came with muscle pain and dryness in that eye, too. Then a few months later I noticed it in one calf (same side) then everywhere. I definitely had the eye twitching and pain before my vax series but it got way worse just after my second shot -- I know this because I literally made a note at the time. I was in intense, migraine-like pain for 3 days, all surrounding my right eye. I am staunchly pro-vax but also staunchly pro-science, and the science is pretty clear: some vaccines can cause temporary reactions, some of which can be neurological. (It's still better than being dead from COVID!)

But... I am finally very sick of the eye symptoms though and am about to see two more neuros to try to get an answer -- one who specializes in ALS, who was recommended by my main neuro, just so I can get an answer -- and another who specializes in just eyes and face. My opthomologist who diagnosed my eyes thought that I had a congenital misalignment of the eyes which was compensated for until I started spending all day every day locked indoors on Zoom; she may be right, but given I literally can't align my eyes any longer and have double vision along with twitching and pain, I want a solution!!

Although for the record, I do think anxiety can cause twitching. This forum's extended standard emoji list even has an eye twitching emoji labeled "scared15". Here it is, watch it go:

[jules321]

I am finally very sick of the eye symptoms though and am about to see two more neuros to try to get an answer -- one who specializes in ALS, who was recommended by my main neuro

I sent you a private message. Also - did the neuro recommend the ALS specialist because they think you might have ALS?

[lior]

From my experience, twitching is far more likely to be down to anxiety than any serious underlying issues. I've had eye twitches from time to time since I was a teenager. For me it's sleep and anxiety related.

Have you heard of TRE? It's an alternative therapy which makes more sense to me than other alternative therapies do. The idea is that children and animals shake when anxious after a difficult emotional event, but adults tend to stop themselves shaking because we're conditioned to appear ok to others. But by overriding the body's natural urge to shake, we keep the anxious energy in our bodies, and our nervous system doesn't regulate.

Now that I know this theory, I notice that when I do twitch, it's because I have that anxious energy stored in my body. The solution for me is shaking. TRE has a set of exercises you can do to induce shaking, you can probably find youtube videos about that. There was a learning curve in letting my conditioning unblock to allow my body to shake, but it only took a couple of sessions for me with a TRE teacher I paid. Now my body just naturally shakes when I have nervous energy to get rid of, and I only need to induce it with the exercises when things are particularly intense/there's a lot going on.

I don't know, maybe it's worth a try for you? It can't hurt. TRE stands for Trauma Release Exercises but I haven't found they release any trauma, shaking just helps me be less anxious. It's definitely a weird feeling at first to shake, but it does work.

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

Please also read this post:

http://www.nomorepanic.co.uk/showthread.php?t=213239

[jules321]

Thank you I will look into TRE.

I am just besides myself with worry and am not letting my family know how worried I am. The problem with anxiety is it makes you not trust yourself so you never know what’s real or not. Is this just anxiety, or is this the time when there’s something real going wrong? I’m pretty sure it’s the latter since I have never had any twitching in 30 years of HA.

I couldn’t sleep again last night from panic every time I felt the twitching. It’s weird bc a few nights after my booster my hand felt funny like it was about to twitch. That feeling lasted months until now it’s finally twitching. What is happening to me? I’m so scared. So many twitches all over my body.

Did the vax cause a terrible disease? Can that happen? I was a huge supporter of the vax and was so relieved to get it… and now this.

I was researching neurologists to get a second opinion, and it sent me into to a panic attack. I’m scared of getting covid by going to a doc, I’m scared the vax gave me something terrible, and I’m terrified of what a neuro might tell me. This is hell.

[Ponder]

I'm waiting to hear back re my booster shot as they are coming out to my house. When they call first, I am canceling. I've seen and heard of more complications through friends and family being from the vaccines and know of two friends and several extended family who died very shortly after having whatever CV vaccine. What they call disinformation is not enough to counter what I have personally seen. Of course anyone speaking of such things are quickly shut down.

[jules321]

I'm waiting to hear back re my booster shot as they are coming out to my house. When they call first, I am canceling. I've seen and heard of more complications through friends and family being from the vaccines and know of two friends and several extended family who died very shortly after having whatever CV vaccine. What they call disinformation is not enough to counter what I have personally seen. Of course anyone speaking of such things are quickly shut down.

It’s a very personal decision. I don’t want this thread to become a political debate or whether the vax works… but I agree that doctors I’ve talked to seem very hesitant to “blame the vax” for my symptoms when the timeline seems obvious to me. Overall I still believe in vaccines but am very worried about my reaction to this one.

[lior]

A tiny minority of people react badly to vaccines, and would react badly to whatever the vaccine is for. They don't make vaccines legal if on balance they are not safe for use.

Is this just anxiety, or is this the time when there’s something real going wrong?

As someone with a chronic health problem with many varying symptoms, I've learnt that I don't have to be anxious when symptoms are happening. Symptoms are just sensations, experiences. The symptoms themselves can't hurt me.

So if you do experience any symptoms, if you were able to completely shut down your anxiety, if they were a genuine problem then they might still be there. And then, if that happened, you don't then need to get anxious about it again. You can just do the sensible things to do eg see a dr. Anxiety doesn't have to be present as a useful feeling for you to take your health seriously.

So whether it's something 'real' or just a symptom of anxiety, either way you don't have to be anxious about it. I know it's easier said than done, but I think that many people get the feeling that they OUGHT to be anxious if it's a symptom of a health issue that isn't anxiety.

[jules321]

Can’t sleep yet again because each twitch brings a new wave of panic. Tonight I was trying to fall asleep, and my wrist had a big twitch bending upwards. Scared me so much.

Wishing this post was not moved from the main HA forum because I need more support.