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

[Rufous McKinney]

Any more ideas of people who had the overworked and crazy nerves thingy.

there are chinese traditional medicine herbs that could be tried to calm the nerves and sooth some of this type of thing, worth trying.

do you have access to an expert chinese herbalist? if you don't , well PM me and maybe I can recommend a formula (pills you can order fairly quickly perhaps)...that might help.

 

[judyinthesky]

@vision blue yes I am on mast cell stabilisers and was during vaccination but meanwhile I think that what I experience is even beyond that.
I experience an extreme state where my nervous system doesn't follow me anymore, and just goes into overdrive. My sleep is also effected now and it was reasonably good before, as the panic attacks go into my sleep.

It's not new symptoms directly, it's just that what was sensitive before is firing.

I like the idea of not using CFS.
I'm afraid my symptoms will point to just psychiatric solutions.

It's almost a painful sympathetic overdrive not regulated by my mind. But I only have heart shivering, not really more beating.

I don't understand any of it, maybe neurodegeneration somewhere?

Thanks everyone.

 

[judyinthesky]

PS: I think my state is way beyond herbs.

 

[Booble]

I'm in major PEM right now (or something else) so I'm relating to all that you say. I get that same nervous system overdrive.
Like your post Vietnam virus, I had very very similar symptoms after my Dec/Jan 2019/2020 virus.
I know exactly what you mean about the nervous system being in overdrive.
I think the cytokines and everything else are just too much for our bodies and we go into haywire state. We're producing all kinds of hormones and chemicals and a bunch of those cause that intense anxiety. It can take a good amount of time to clear those as your body keeps pumping them out. Even when your body stops pumping them out and takes time to clear them.
The best advice I got was from an ENT doctor who said the simple words, "I think you feel worse than you are."
He wasn't dismissing all the physical symptoms I was experiencing at all but for some reason that little assurance that I was feeling awful but I wasn't awful gave me permission to ride it out. I was OK even though I didn't feel anything like OK.

Perhaps it's the same with you?

 

[judyinthesky]

@Booble yes I agree it is in my head or my central nervous system, but if it prevents me from eating due to physical symptoms that doesn't help much. Yes I feel bad in my head but need to find out of this emergency state.

 

[vision blue]

I did finally read through replies- i see where you said mast cell stabilizers but didnt see specifically H2 blocker or gastrchrom- they may have different effects than the ones taking

I know what you mean about neuro degeneration and think the same of myself

We all need that autoantibody panel offered in germany but in mean, can u get the more conventional brain panels like offered by nayo clinic?

I do t think chils alternated by sweating will be.viewed as a paych symptom. (I get this too- temp regulation autonomic dysfunction

But also S i said inless im getting posts confused from different people, with history of thyroid abd pancreas issues, yoylu sure want pituitary testing and hormonal tesringv. Who knows what disequilibrium the vax triggerred

Hopefully body will know how to right itself with (hopefully not too much more ) time. Hang in there.

 

[Booble]

@Booble yes I agree it is in my head or my central nervous system, but if it prevents me from eating due to physical symptoms that doesn't help much. Yes I feel bad in my head but need to find out of this emergency state.

To clarify, I'm not saying it's "in your head" at all. I'm saying it's your body -- like an allergic reaction almost to the antibodies being created and developed from the vaccine. I, too, get the can't eat thing. It was horrific during my post-virus as that worsens the cycle in the body. Not getting enough calories. Body produces more chemicals to deal with that and so on and so forth.
Side note: right now I'm staring at my breakfast wondering how the hell I'm going to get that down.

 

[judyinthesky]

Yes feels like an allergic reaction of the mind. Also have this vision issue that when my nervous system goes up into pseudo anxiety mode I will see things more sharply.

I feel okay if I don't do a single thing just being in bed.

H2 have tried doesn't do much.
I've had thyroid specialists checking.

 

[lenora]

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!

Hello @judyinthesky . Sorry that you've having so much difficulty. Hey, perhaps some of it passed over the weekend, I sincerely hope so.

I'm on Xanax myself (age 74) and want to ask you if you're taking it regularly or as much as you feel you need at any particular time?

I'm surprised that you weren't put on something non-addictive like buspar to begin with...perhaps you were, I don't know.

You're right, the hospitals generally aren't of much help, unless you arrive in an ambulance. Still the sheer nos. of doctors that gather around your bed (if you're admitted) can drive anyone a little crazy.

Do you have a current list of your meds? Including vitamins, supplements, herbs, etc. This is very important and I find we're constantly having to change it. Chances are good that one or more of the doctors may take you off something, start something else...and so it goes.

I've gone from being able to get out of anxiety myself, to taking non-active buspar and finally having to move to xanax b/c of Shingles. I wish you well, and I'll try to find out how you're faring today. Yours, Lenora.

 

[Rufous McKinney]

s, "I think you feel worse than you are."

That all may be true, and I don' t wish to presume whats up with various folks- we are all unique and its complicated.

My experience when I went to visit my daughter and new grandbaby- 3 months in a foreign country. I never effectively recovered from arriving. It was like it all blew up- and it seemed like no matter how much resting and pacing I did, I got horrifically worse. I kept not going with, not going out to dinner, NOT doing whatever was on the agenda- and it seemed to make no difference. It probably took me a year to- return to whatever state I was in prior to this trip.

All my ME symptom shifted into a realm of VERY SERIOUS and VERY real. Tachycardia, my heart flopping around not finding any blood, around 5 pm which every day was like stepping into a hellaceous abyss. Fainting. Masked in the car- I can 't visually process the scenery outside the window. The horrific pain in my neck and back of my head, and I'll just be frank- I felt suicidal every day around 5:30 pm. My throat screaming in pain from speaking to my daughter earlier.

I am supposed to mostly not speak out loud. THat works, when you've been married for 50 years and just stay home. But its Strep level pain.

The anxiety for me comes with the experience of not fitting into the current world order, in the way it works now.
It largely does not compute. This creates an internal destablizing effect.

 

[judyinthesky]

@lenora
I take Clonazepam more than Xanax.. and just to be able to eat. I don't want to become addicted but have to somehow break the spiral. Haven't taken it before at all.
Does buspar do the same, like does it break the problem of overactive nerves?

I have not much of a plan since my nerves got hyperactive and sensitive over night - similar to with that virus in Vietnam, which is really puzzling?

Here is my list of medication:
Thyroid medicine, Creon pancreas enzymes, mast cell stabiliser (Ketotifen), antihistamines, and a natural sleeping pill with poppy and passion flower in the evening. And then one Clonazepam to be able to eat at the moment.

I have not felt that anything changed so far... taking it day by day. What helps if I don't do anything but stay in bed the whole day, then by the third day it seems I can gather enough energy for a shower at least.

 

[judyinthesky]

That all may be true, and I don' t wish to presume whats up with various folks- we are all unique and its complicated.

My experience when I went to visit my daughter and new grandbaby- 3 months in a foreign country. I never effectively recovered from arriving. It was like it all blew up- and it seemed like no matter how much resting and pacing I did, I got horrifically worse. I kept not going with, not going out to dinner, NOT doing whatever was on the agenda- and it seemed to make no difference. It probably took me a year to- return to whatever state I was in prior to this trip.

All my ME symptom shifted into a realm of VERY SERIOUS and VERY real. Tachycardia, my heart flopping around not finding any blood, around 5 pm which every day was like stepping into a hellaceous abyss. Fainting. Masked in the car- I can 't visually process the scenery outside the window. The horrific pain in my neck and back of my head, and I'll just be frank- I felt suicidal every day around 5:30 pm. My throat screaming in pain from speaking to my daughter earlier.

I am supposed to mostly not speak out loud. That works, when you've been married for 50 years and just stay home. But its Strep level pain.

The anxiety for me comes with the experience of not fitting into the current world order, in the way it works now.
It largely does not compute. This creates an internal destablizing effect.

Hm, I lost the thread here a bit even though I enjoyed reading. Do you mean that some encounters can have such a destabilising effect?
I don't know the anxiety of not fitting into a world order, funnily. I love the world and just want to live, and it was very great and going well (well for having ME) before this vaccine disaster! That's why I grief.

 

[PisForPerseverance]

Hi @judyinthesky I had post vaccination autoimmune onset and/or worsening of prior autoimmune conditions. Vaccine induced autoimmunity is known to occur (but I didn't know ahead of time and even if I did I would have weighed the guessed risks and gotten it.) I had autoimmune dysautonomia and likely small fiber neuropathy beforehand, and they have both worsened with new symptoms, and i am looking for different kinds of autoimmunity now (running tests, biopsy), especially because autoimmunity was part of the beginning of my illness post viral encephalitis. I have worse pem now than I ever had. Thankfully I have good doctors equipped to help. But I am the one requesting some of the autoimmune tests that they didn't think of. There's a lot of potential autoimmune antibodies relevant. We talk about it here a little bit.https://forums.phoenixrising.me/thr...cephalitis-sfn-and-a-neuroimmunologist.83955/

Some of my original symptoms after the vaccine went away after a couple weeks, fevers, sweating, longer-lasting cognitive impairment than usual or back to a previous state since I have recovered my cognition a lot from how it was before in my illness, constant intense weakness when usually I'd have a couple day flares of intense weakness and then it would return to baseline, and other symptoms I'm not remembering. Same shot as you and also the 1st shot. The worse dysautonomia and burning continued to worsen, and at this moment seem to staying at that place 4 weeks after. A little better with pem but still worse. Weakness has subsided a bit the last few days. It's been 4 weeks.

Your symptoms are much worse with a much more dramatic onset and I'm concerned. Perhaps @Gingergrrl can help with sharing some of the studies she's read on vaccine induced autoimmunity to see if any match your symptoms well, since she's read a lot. I suggest bringing these into doctors. @Hoosierfans might have something to say as they also have burning all over and in the brain and have found autoimmune answers from a lot of investigation. I'll help how I can. Feel free to pm me. You are not alone. I'm so sorry. It was scary for me for a few weeks (less so now that I'm approaching treatment and finding out answers), I can only imagine how frightening it is for you having had such a severe loss of function. It's still scary to think of not getting another vaccination for a long time and it's still upsetting either way as what if the worse pem doesn't respond to autoimmunity treatment even if it treats my other conditions.

 

[judyinthesky]

@PisForPerseverance thank you so much. Your words are soothing despite the fuckup.
I've thought that autoimmune might play a role but my autoimmune markers never show something.

It's crazy to have that cognitive issue as well as the constant fight or flight on an already weakened body.

I'd be indeed grateful for hints regarding the direction to ask doctors. I will be in hospital tomorrow.

 

[Booble]

That all may be true, and I don' t wish to presume whats up with various folks- we are all unique and its complicated.

The "You feel worse than you are" was related to post virus -- just a a month and a half out from virus.
So what the doctor was saying at the time was that that virus was over but my body was still feeling the effects. It assured me that there wasn't a lingering/growing infection that needed to be dealt with and knowing that was one less thing on the plate.

 

[Gingergrrl]

Perhaps @Gingergrrl can help with sharing some of the studies she's read on vaccine induced autoimmunity to see if any match your symptoms well, since she's read a lot

I apologize I was not able to read this entire thread but one article that I found really informative and discussed with my doctor was:

"Predicting post-vaccination autoimmunity: Who might be at risk?"
by Alessandra Soriano, Gideon Nesher, and Yehuda Shoenfeld
from the Journal of Pharmacological Research, 2014

I only have a paper copy of this article and don't have a link (but if I find one, I can post it). This article is about how vaccines can both trigger and worsen autoimmunity. It also discusses how the adjuvants in the vaccines can add to the reaction. The article is NOT anti-vaxxer in any way and does not take any kind of political stance and is purely a medical article.

The article describes four groups of individuals who might be at risk:

1) Patients with prior autoimmune reactions to vaccines
2) Patients with a known/established history of autoimmunity
3) Patients with a history of allergic reactions
4) Patients who are prone to developing autoimmunity (i.e. having a family history of autoimmune disease, being an asymptomatic carrier of autoantibodies that are not yet pathogenic, having certain genetic profiles, certain hormonal or endocrine factors, etc).

The article summarizes that for each subset, the individual patient should weigh the potential benefit of the vaccine against the potential risk with their doctor. And to clarify, this article pre-dates the COVID vaccine but I think it is a really good starting point in your research and I hope it is helpful.

 

[PisForPerseverance]

@PisForPerseverance thank you so much. Your words are soothing despite the fuckup.
I've thought that autoimmune might play a role but my autoimmune markers never show something.

It's crazy to have that cognitive issue as well as the constant fight or flight on an already weakened body.

I'd be indeed grateful for hints regarding the direction to ask doctors. I will be in hospital tomorrow.

Hi Judy, will pm you, but I suggest also posting all your symptoms here in a list, so that others can help matching to any autoimmune or other conditions to ask to be tested for if they don't. It'll be a good thing to bring to the hospital too.

 

[judyinthesky]

Symptoms:
*extreme heightened nervous system: constantly on the verge to a physical panic attack that makes the hands sweat and the head hot. I think it might be a form of excitotoxicity because that is how it started two years ago in Vietnam with the virus and stress and hyperthyroidism
*eating exaggerates this symptom, Xanax stops it
*started 8 hours into vaccine with extreme dissociation, then normal vaccine reaction, then the fatigue started - went from 80 to 20 on the scale, from very active to having to be in bed
*fatigue and nervous system heightening are at an extreme
*irritability and mood swings. Get compensatory depression every now and then, like a mental PEM of the severe kind.

 

[PisForPerseverance]

What about burning? You said you had burning, where is that.

Unfortunately the panic attacks might get you little investigation for everything, as really sad as that is. Emphasizing everything else, and de emphasizing panic attacks, is a strategy to make sure you get serious medical attention. If you're not getting panic attacks, don't mention it at all, is my advise. What about... Cognitive abilities. Can you look at a list of cognitive abilities and see if any of them are happening? I think downplaying emotional distress, even though it's a big part of your adverse event, would be the smart thing because they anything about mood, it's likely to be brushed off. It might be understood as part of the neurological event, but likely not. It depends how your country practices medicine. Where are you?

I looked back at your first post on your symptoms. In writing and when you speak to them at the hospital and with all your doctors, I suggest

Emphasizing trouble swallowing and digesting, sweating all the time, hands sweating, nerve twitching (what happens exactly), the sensation going up to your head (try to think of more descriptive words with that to add), heat (same with being descriptive), shivering, sound sensitivity, light sensitivity, only being able to eat liquids and small amounts, extreme weakness to the point of not being able to do such and such

And not mentioning the word panic attack at all or mood issues. (But do whatever you feel is best)

Using neurological terms about your sensations and experiences. (even though mood is neurological it's deemed as "psychological" at least in the US). Can you think of any other neurological symptoms you're experiencing? Does your brain feel swollen? If so, I would say that in words and writing. Saying nervous system heightening, though, is a code for anxiety and could get you dismissed.

Use weakness instead of fatigue. I wouldn't mention the word fatigue. Maybe sleepiness. And emphasizing how your muscles are, how your strength is. Your function, like how much it's limiting you.

Any lung symptoms? Tingling, numbness?

I hope this helps. Try to include all those symptoms in a written list to bring.

 

[judyinthesky]

I did a little bit of that. I do have intense mood swings but didn't mention so far.
In fact my mood swings come with my eating and my brain can feel inflamed after eating.
They also said that they have a fatigue specialist.
It's not too bad.
I don't even have a proper CFS diagnosis yet so far lol.

So in worst case I get that.
But it feels like physical anxiety attacks mixed with physical bipolar that is triggered by physical events.
Maybe that is what is CFS with mental PEM after all.

So long, greetings from the hospital everyone. Just had a soup and my head starts burning a bit.