Super-crash after vac - neuroinflammation (?) and heightened nervous system

[judyinthesky]

I am not sure where to post this, but I have had my Pf 1 vaccination 13 days ago. I was a mild CFS case with pancreatic insufficiency and quite a high activity level.

I am going into hospital to exclude other things but as I do not expect much proper treatment to come out of it, I am looking for advice for the following issues.

In general, the vac super-heightened my nervous system in a way I have never experienced it before. I have experienced it in a similar but different manner 2 years ago when I got sick after a Virus in Vietnam.
This is so much that it disables me from eating, as eating causes my nervous system to tighten up and I have to take Xanax to be able to eat and to not get a pseudo panic attack (I say pseudo because I only fear intense inconvenience up to the point of the feeling like one is dying, but no fear. It usually starts with more sweaty hands (I sweat constantly anyways), then goes up into my head and might lead to nerve twitching, and heat. And I always sweat, 24/7.

When I eat, this happens autonomically in my body as well. I eat small proportions and liquid as much as I can, but I am still always on the verge in that state.
Apart from using Xanax, which makes it easier but does not take it away, I have not found any solution.

I also have an extremely heightened nervous system in my gut in general, and am always sweaty or shivering.
My level of functioning also decreased greatly to a never known level of fatigue. I used to walk for hours and now feel the heightened nervous system from doing a few steps. I wonder whether this is how people with light or sound sensitivity crash? I have never experienced this level of "physical" attacks before.

I am looking for any possible solutions or ideas. It is likely that this vaccine reaction will take a long time from what I can take from those who crashed so badly before, but I need to get out of this emergency state. I cannot pace much more as it would stop eating.

I really feel at a loss, the v created the feeling like my nervous system is constantly on fire and on the edge everywhere in the body, and I feel the brain inflammation, if this is what it is.

I am grateful about any advice on potential medication, or directions to go with my doctors.
I have just a little sound and light sensitivity, seems like the sensitivity is in my garstro system and reacts to any "exception"/movement.

I do not want to scare anyone with that experience, sorry if I have. Just really looking for any advice to get out of this hypersensitive mode. It is very exhausting and a mental and physical downward spiral it seems to me atm.

 

[andyguitar]

In general, the vac super-heightened my nervous system in a way I have never experienced it before.

How long after the shot before you got bad?

 

[judyinthesky]

Hi @andyguitar to be honest, I dissociated already 8 hours into the shot. Then I had normal and to be expected side effects (just a little shivering and 2 days flu-like symptoms), from which the hell started. Then over the next 1.5 weeks every day got a little worse. But the heightened nervous system in my intestines and my brain I felt already 8 hours into the shot.

 

[Rufous McKinney]

I used to walk for hours and now feel the heightened nervous system from doing a few steps. I wonder whether this is how people with light or sound sensitivity crash? I have never experienced this level of "physical" attacks before.

Are you fully resting right now? While you were mild, in this acute state you really need to rest and not push at all.

It does't seem terribly surprising to feel amped up as: thats what the vaccines do to our immune systems.

I notice that when I start to lose energy, the digestion just gets worse too- fueling a cycle.

 

[judyinthesky]

@Rufous McKinney I rest 24/7 and have not done more. My main issue is that eating and just moving from toilet to eating spot ramps up my symptoms (weakness like never before and heightened nervous system). I have my parents to look after me.

Yes I think before the v I was like that - my nervous system always went higher after eating, but it was not related to the feeling of dying as the physical intensity is so intense - like nerve burning etc., and the inflammatory/hot feeling in my brain.

To be precise I have gone from fully functional to properly disabled. Ah and another symptom is nerve twitching after all this. I guess my main issue is the mental/physical intensity of it all.

 

[ljimbo423]

@judyinthesky

This has to be really scary! To have dropped so much in your ability to function physically so fast!

I think neuro-inflammation causes a lot of symptoms in ME/CFS. So maybe the immune system activation from the vaccine did cause more neuro-inflammation and therefore symptoms.

I would think once your immune system settles down, your symptoms should subside.

Hang in there. I'll keep my fingers crossed that your immune system will settle down and you'll regain your energy and be able to function again like you were, very soon!

 

[Jyoti]

@judyinthesky--I am so sorry to hear about this. It must be so hard to fathom, falling so far so fast. And then of course there is the feeling so absolutely awful! And wondering: when is this going to end?

I have a couple of thoughts, probably fairly lame in the face of what you are dealing with, but since I went through something similar (but not exactly the same) I thought I would share them. Sometimes even the little bits are worth a lot when it comes to alleviating symptoms.

Like you, I had the usual and expected side effects for about two days. Then I was hit with a complete autonomic meltdown. The trip from bed to bathroom was overwhelming and pumped my heart rate up 60 or 70 bpm. Sitting up was intolerable with pre-syncope. I couldn't eat and breathing was a chore. Every stimulus was like a bomb going off. All I could do was lie flat with my eyes closed. This went on for 8 days and then without any warning, just lifted.

I was not as mild as you are to begin with, but I really plummeted on the severity scale. I was ready to go to the ER a bunch of times, so I can understand your wanting to head to the hospital.

I realize that you have been contending with this for a lot longer than I did and I am--again--so so sorry. I don't know what you can manage and I have no idea what might end up helping. But... I got this: https://www.amazon.com/Headache-Hat...qid=1620941541&s=instant-video&sr=1-8-catcorr and wearing it for an hour or so really does seem to bring down the neuroinflammation. Or at least it calms me down on a lot of levels. (I have it on now!) There are a lot of similar items out there and some are cheaper--might be just as good or better.

Also--wondering if you checked out Nancy Klimas' recommendations for before and after vaccination. . Not sure if any of those will help at this point because it seems like something has been set off and it is the result of that --not the vaccine itself--with which you are dealing now.

Again, this may be impractical with your digestive issues, but for my second (yes, I got it after much deliberation and trepidation and had absolutely NO side effects whatsoever) jab, I drank huge amounts of water before and after. 5-6 litters a day. And I did follow Klimas' suggestions about supplements. Dunno what kind of difference that might have made but the second dose was about as easy as the first one was hard. I returned to baseline.

I'm really hoping that your system processes through this and you are much, much better soon. Wishing you all the strength and patience needed to get to the other side.

 

[Rufous McKinney]

To be precise I have gone from fully functional to properly disabled. Ah and another symptom is nerve twitching after all this. I guess my main issue is the mental/physical intensity of it all.

Oh gosh thats tough, thank good ness you have your parents there for support. You'll likely recover, its just going to take more time.

I know it took me almost three months to pull out of an overload event. (I took a pharma pill, and it nailed me and I stopped immediatley- but still it was months.)

so try to not to pile on the situation.

We all vary- I feel different about every hour. Sort of Ok, Not ok, briefly so so, kinda worse- blah blah

 

[judyinthesky]

Thanks guys, means a lot.

@Jyoti have been on mast cell stabiliser Ketotifen before and during the vac. Have upped them and antihistamines to no avail.
There is got to do something with inflammation, yes. I feel that I do have no control over something autonomic in my body.
It is re-traumatising as it happened after the Virus in Vietnam, just with the difference that my body was not as weak as now. I will check out your hat it sounds interesting indeed! Actually, using ice might not be such a bad idea at all.

@Rufous McKinney Overload event, by pharma pill, that is interesting. I, in an already overloaded state, tried an SSRI once and it was a catastrophe. (was it something like this?) Seems my body cannot deal with any upping at all. I used to be a very active child and now I am thinking maybe some sympathetic overload I always had - but then I got my thyroid out and things went downhill and then the virus in Vietnam.

Any more ideas of people who had the overworked and crazy nerves thingy... happy to hear from you!

 

[andyguitar]

I would think once your immune system settles down, your symptoms should subside.

Yeah it does sound like it's a result of your immune system getting over stimulated. You might just have to grit your teeth and ride it out. Good luck!

 

[judyinthesky]

@andyguitar might have acquired a Xanax addiction by then. But yeah I hope so. Then again there's these voices claiming permanent worsening after vaccination. Well I don't think much about that now, just about how to ease this little by little.

There are a few who were hit so hard and some of those report several weeks of horror. At this point it seems like a long long time!

 

[judyinthesky]

Update: so the hospital wasn't particularly helpful (told me I might need yoga and obviously didn't know CFS), but I can have a bed on Wednesday.
Wondering whether I can find a good neurologist or immunologist or gastro or at least dysautonomia specialist there who would understand fatigue syndromes.
You might think that with long Covid it's all going to be better and those would know a bit more about fatigue symptoms.

But I might still go in to talk about potential medications, even though I have lots of issues and hypersensitivity with medication.

Don't even know what I could ask for.

 

[Judee]

And I always sweat, 24/7.

I think I have read that excessive sweating can be a symptom of one of the Lyme infections - possibly Bartonella or Babesia.

Have you been checked for any of those? I think they can cause a lot of neurological symptoms as well.

 

[judyinthesky]

Yes long ago after my first infection in Vietnam and according to the doctors I've never had Lyme. I had antibiotics though one time as prophylaxis and I also got the red marks they see in 50%, but I've never had it officially.

I am very very very sure though that what I am experiencing is a severe reaction to the vaccine.

I'll be grateful about any ideas that I could ask the neurologists when I get into the hospital Wednesday.

My main issues being:
*extreme worsening of fatigue: from being working and highly functional to being bed- and housebound (I can walk for a few meters but will pay a price, usually with a nervous attack)
*extremely wired nervous system up to visual change (like in a bad trip). This goes on 24/7.
*constant cold sweats and pseudo panic attacks that feel like heat and crazy feeling in the head. If I don't take Xanax I will feel the nerves in my head twitch!
*the attacks come randomly during the day but in particular after eating - which causes an issue with eating obviously.
*I feel nerve activation in my gut and very often a buzz. The whole attacks are so exhausting for the body that I often feel like dying
*I would like to avoid getting dependent on Xanax but as it's so intense I don't know what else to ask for, in particular as I've been reacting so badly to what they usually give, like SSRI. System wired to the max that any upper can cause bigger issues.

Any ideas welcome!
I was very functional before and have trouble making people believe that this is from a vaccine only!

 

[andyguitar]

I was very functional before and have trouble making people believe that this is from a vaccine only!

Yes thats the problem with this. But the connection between your symptoms and the jab suggest to me that an immunologist might be the best bet.

 

[vision blue]

I havent read thru all the responses yet but could you be having a mast cell reaction to vax? What happens when you take an H2 blocker like pepcid? Does it help the autonomic gastro symptoms? Or how about oral cromyln sodium? Will need a script for that one

(I found this thread cause searching for the one on Anyone decided they are not getting vaccine (or some such but i must be misrememveribg title since cant find it.

Please keep us poster on how long symptoms last. I have the overactive sympathetic nervous sysyem phase of this disease now and making themnworse us one of many long term side effects am concerned with

 

[vision blue]

Ps as a practical matter, would you be best served by never once using term fatigue or cfs? Use other terns like ever since vax i cant get out of bed. If they say why not , tell them you start to sweat and describe whatever else hapoens. etc. if they say new say yes except once before when i had an infection in vietnamhad simikar but more mild happened.

Is it possible also vax thru pancreas further out of whack? Can yiu try some pancreatic enzymes ? Pfizer has potassium (not sure if that woukd do it)

 

[Rufous McKinney]

@Rufous McKinney Overload event, by pharma pill, that is interesting. I, in an already overloaded state, tried an SSRI once and it was a catastrophe. (was it something like this?) Seems my body cannot deal with any upping at all. I used to be a very active child and now I am thinking maybe some sympathetic overload I always had - but then I got my thyroid out and things went downhill and then the virus in Vietnam.

yes- Zoloft, 2 days. Full on catastrophe.

I was receiving the standard No Care, Being Stared At, all this inflammation became- What Does the Dentist Say? (that maybe I'm allergic to something, thats a very smart dentist, your a very STUPID doctor).

Somewhere I wrote down all that came down there. Its been awhile- I awoke with my jaw locked shut. Paralyzed. From there, it was horrific. The next night, around 2 am, I awoke in some other state of massive catastrophe. I threw out the Zoloft.

PLus the doctor lied. Realize that the pharma side effect: Dry Mouth- destroys the teeth, mouth and health.

So she lied: told me no dry mouth side effects. Its in the second sentence on side effects, see pamphlet.

From Chinese medicine, and direct observations, I've learned that this dry condition is a key symptom of our illness and the Yin deficiency. This dryness is dangerous and worsening it intolerable.

So I was also choking. My throat- is what chokes. My tongue: has a Grand Canyon desert living in the middle of it.

 

[Rufous McKinney]

Ps as a practical matter, would you be best served by never once using term fatigue or cfs?

Thats major advice we all need to understand. Don't use vague terms that others easily can project on to.

Tired doesn't convey anything. And the solution to all mysteries is antidepressants, because they have no other ideas and thats who: shows up to sell even more of them.

My gyno gave me the Paxil Brochure. I'm there for a severe pain in my ovary. Really?

There are more pill pushers in the waiting room than patients. They have more time to see this doctor than I do. (my current GP would NEVER Let them into his office. Really. Such doctors exist, and I got one !!)

 

[vision blue]

Pps. Whens the last time you went to wn endocrinologist? Just wonder if the got it right that it waa really thyroid. Pituitary issues can produce a wide range of symptoms that bounce around- having both thyroid and pancreas (assuming they predated vietnam infection) makes me wonder. Then theres the whole multiple encocribe neopkasua syndromes

Sorry do t have better things to say- your story has gotten under my skin because i have the overactive sympathetic thing too (i think an ssri would kill me!) . There can be many different causes of sympathetic overactivation as you know.