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

[judyinthesky]

Forgot to add. I also have on and off formication - bugs crawling sometimes as well.

 

[PisForPerseverance]

Forgot to add. I also have on and off formication - bugs crawling sometimes as well.

Oh my goodness that is a lot of neurological symptoms. I would not put this down to ME. And be content with leaving it at that. It would be great to get the diagnosis but you've clearly had a strong vaccine induced neurological event, and it really needs to be investigated as such until you find your answers, hopefully. Now and the next few months are the most crucial. Leaving it as ME after this vaccine induced neurological event would leave you probably without much treatment. You're having symptoms far beyond PEM. So I hope that you keep investigating and asking to be investigated for answers, even if this hospital visit comes up with little.

Greetings to the hospital! We're in mid pm conversation but I wanted to reply here too.

 

[judyinthesky]

Thanks! Yes they are thorough here and good! I get to go into a sleep study tonight even. Wanted to do for ages.

Yes it's really weird. Had the bugs crawling before but now it's just more like a burning whereas before it was a minor inconvenience.

 

[Rufous McKinney]

should weigh the potential benefit of the vaccine against the potential risk with their doctor.

oh well then. Our doctors do they have informed opinions? Not on this illness.

 

[judyinthesky]

Every doctor will tell you to do this vaccine and I understand them. Statistics wise.
But greater would be to have knowledge and data on why some are badly effected and some not.

Meanwhile they are running me through all tests from Schellong to sleep study.

 

[judyinthesky]

Oh my goodness that is a lot of neurological symptoms. I would not put this down to ME. And be content with leaving it at that. It would be great to get the diagnosis but you've clearly had a strong vaccine induced neurological event, and it really needs to be investigated as such until you find your answers, hopefully. Now and the next few months are the most crucial. Leaving it as ME after this vaccine induced neurological event would leave you probably without much treatment. You're having symptoms far beyond PEM. So I hope that you keep investigating and asking to be investigated for answers, even if this hospital visit comes up with little.

Greetings to the hospital! We're in mid pm conversation but I wanted to reply here too.

By the way people have experienced the bugs here as well. It is also a fibromyalgia problem sometimes.

 

[Zebra]

Meanwhile they are running me through all tests from Schellong to sleep study.

Hi, @judyinthesky

I've been following your thread, but I've been too ill to be of any assistance.

I'm so glad you feel like the hospitalists are being thorough and running some smart tests on you. That makes me really happy to hear.

Have they taken your upper GI symptoms seriously? I ask because my disease began with severe "GI dysmotility", but of course, I had no idea what that even was at the time!

What happened to me is that over the course of 4 weeks I lost the ability to eat solid food until eventually I was only able to swallow thin liquids, in small amounts. When I did try to eat, it felt like I was having a "panic attack," which included a squeezing sensation in my chest, palpitations, lightheadedness, and feeling like I was going to pass out. It was a horrible feeling.

Most of my work up for these symptoms occured as an outpatient, after being discharged from the hospital. Tests I had include:

*endoscopy (showed gastritis in my stomach)
*esophageal manometry (showed severe esophageal dysmotility)
*gastric emptying study (showed impaired accommodation)
*breath test for Small Intestinal Bacteria Overgrowth (positive, due to dysmotility, treated with 2 week course of antibiotics)
*CT enterography of small bowel (normal, no signs of anatomical problems)
*Many years later had colonoscopy for severe constipation (visual & tissue samples were normal)

From what I've read of your symptoms around eating & drinking, I think the 3 most important GI tests for you would be the 1) endoscopy, 2) esophageal manometry, 3) gastric emptying study.

Positive findings might prompt your doctors look for the underlying cause.

I hope this info is helpful to you, and I wish you the very best!

Warmly,
Z

 

[judyinthesky]

@Zebra thank you so much. I'm at neurology and asked the Internist about gastric emptying, but said they would not do it. In all my history of gastro issues they've never taken this into account, so I often think this is run more often in other countries. Are you referring to the US by any chance?

Thanks for taking the time to respond
I've thought about things like dumping syndrome also, maybe also going back and forth there because that would also entail an emptying study.
I've had the other studies done a while ago (manometry and endoscopies) and they were fine. EUS last summer. I don't think they'll run them again. But I've done many endoscopies and always have light gastritis.
What got better is the sweating. Instead I have more cramping. Not sure what I like better
Interesting what you say with the panic attacks also. I know vagus can do this.

There's lots of changes in my body happening. Less sweating and still postprandial mystery.
I might have to ask about the emptying.

 

[gbells]

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.

Hypersensitivity with ME suggests viral nerve infection. The two most effective things I found were time released curcumin (Innovix) and sleeping grounded (earthing). Both lower inflammation. Diet is also very important to lower inflammation (and vitamin D, low red meat intake 1-2 servings per week maximum).

Good overview:
https://www.precisionnutrition.com/optimize-your-immunity-infographic

 

[Zebra]

I've had the other studies done a while ago (manometry and endoscopies) and they were fine

You are kind to let me know you've already had such testing. I'm very glad to hear it.

Are you referring to the US by any chance?

I am in the United States. However, I'm surprised you are meeting some resistance on the gastric emptying study. It's a very old, inexpensive test.

And, if your Tilt Table Test demonstrates abnormalities with your autonomic nervous system, it would make sense that your stomach might be affected by dysfunction of the autonomic nervous system as well. My fingers are crossed that you may be able to get this test at a later time.

Interesting what you say with the panic attacks also. I know vagus can do this.

Yes! When I was finally under the care of a skilled neuro gastroenterologist, she let me know that she suspected my vagus nerve was irritated or damaged by whatever was causing my upper GI dysmotility. She said that many of her patients experience these symptoms that mimic a panic attack. The good news is that they did finally subside. The bad news is that I still do not have a definitive diagnosis for what put all of this in motion.

I hope you are able to get some rest and some sleep while in hospital. I will continue to follow your thread. I really hope your hospitalization and testing sheds more light on your condition, even if you have more work to do as an outpatient.

Hang in there! (A uniquely American expression, perhaps?)

 

[Rvanson]

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.

I am so sorry for this happening to you Judyinthesky. It's one reason I will never take the vaccine. Being bedbound is a death sentence for me as I live alone so no help at all available Too, I count on Xanax to get to sleep. I know it's "addictive" but it works like nothing else does. Sleep is addictive, so IMO anything that works is OK by me. I'll go the opiod route if it is taken away from me, as it has been from others. I hope you start feeling better real soon Judy.

 

[judyinthesky]

Thank you all so much
Yes I need a neuro gastroenterologist.
That's on my list, next to the real specialists for CFS.
They are okay here with neurology, but not so much on the gastro front. I just asked for a simple decramping medication, and they said they don't have them, but I instited.

I don't know, I could well imagine that there's going to be somatization disorder on my file again.

At least I feel I am slowly getting out of the crash. My brain is working better, and I feel things are moving more towards the pain area now. Which is good because that can be treated with pain medication. For instance I get less sweating on hands but more pain in belly now. Not excruciating but keeps me from sleeping. But I am also not moving a bit here, so that helps.

 

[judyinthesky]

I take it all back, just tried to have a shower and that leads to a crash. It's hard to adjust from being able to do everything to not being able to do basic functions

 

[Rufous McKinney]

I count on Xanax to get to sleep. I know it's "addictive" but it works like nothing else does. Sleep is addictive, so IMO anything that works is OK by me.

I was using small dose Xanax as a sleep aid for quite a while- it worked for me (a few years). 0.25 mgs. before bed.

I did not have any issue stopping taking it- so at that low level, in my case it did not seem to generate any addictive or withdrawal issues.

 

[Rvanson]

Yeah, I don't know why such a small dose of Xanax would be cause for concern at all, but it seems to be these days.

 

[Rvanson]

PS: I think my state is way beyond herbs.

I feel very bad for you. I hope that something can help you. I wish I knew what it could be too.

 

[Rvanson]

@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?

No, I dont think it would. it only seems to have any effect in a very small percentage of people who have tried it and it takes weeks to become effective for that small group of people. Iv'e not found Buspar to be effective for anything.

It's a mystery why some doctors do still use Clonazapam, but not Ativan or Xanax, if they even use them at all. They are all Benzodiazapine medications. Klonopin(Clonazapam) lasts longer, but for me it's not as effective as Xanax is for getting some sleep.

 

[judyinthesky]

No, I dont think it would. it only seems to have any effect in a very small percentage of people who have tried it and it takes weeks to become effective for that small group of people. Iv'e not found Buspar to be effective for anything.

It's a mystery why some doctors do still use Clonazapam, but not Ativan or Xanax, if they even use them at all. They are all Benzodiazapine medications. Klonopin(Clonazapam) lasts longer, but for me it's not as effective as Xanax is for getting some sleep.

True, but I like it because it is not so extrem. Sometimes that's what you need.

 

[lenora]

Hello @judyinthesky & @Rvanson.....Judy, you're probably past the "window'" for using buspar, and who knows why it worked for me, but it did for years on end. But then the day came when it just didnt't work any longer and that day happened to involve having shingles....wretched illness.

So now I'm on xanax and the doctors at the hospital also had hysteria over that fact. Well, I'm going to trust my neuro far more than I am them, and even though I very nicely said that, my xanax was stopped. Probably more to do with the law of the country than anything else. Then, to make things even worse, the head neuro wanted to put me on an even more addictive drug! Fortuntely, Rod caught that one in time.

So in the end I do believe that drugs, herbs, vitamins...any of these things, are very dependent upon how the body will respond to them. One size doesn't fit all.

As far as xanax goes, I think it had the very bad reputation of being around at the same time as the opioid epidemic and then the New England Journal of Medicine came out with how it affected old people. Well, that's another thing....we're not all affected in the same way, and I've yet to see the statistics that were used as to age, etc. Doctors lost their practices to fentanyl use (even when perfectly justified), had to close their doors, patients were left with nothing in the way of help, suicides were high and yet no one cared. So I remain a little burned by the whole affair and don't trust much of anything. This wasn't fair on a lot of physicians who had tried very hard...addicts will always find a way, why couldn't the authorities figure that much out?....and why weren't the pharmacies prosecuted right along with a lot of innocent doctors?

I think I've been at this game for a little too long and if you can get away without pain, then you're very, very fortunate. For the rest of us....suffering is rather high on the list. And yes, I'll continue taking xanax. Why? Because it helps. I didn't ask for any of this....it happened and I'll use whatever gives relief of any sort. Why should my family have to put up with more than they do all b/c I "may fall" at some point in time? Well, I had 10 falls last year due to steroids....was anything written about them? Sorry folks, you shouldn't have to put up with this tirade. Yours, Lenora.

 

[judyinthesky]

@lenora thank you that is interesting.
The only thing that I don't know with the medication is that maybe it's masking what I need to understand about crashing. Are you using every or every other day?
Yes the neurological pain is real - the pain of the nervous system overload