PEM = mental/vagus - help me guess my pathology!

judyinthesky

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Hey all!
I'm cross posting from a Facebook group.
I would like to list my life of symptoms and want you to tell me - like you'll be invited as CFS expert on TV :) - what you think are the most likeliest underlying pathologies in my very weird and RAPIDLY DECLINING ME/CFS.

Can I use your clever brains to guess my pathology? Would appreciate that.

My doctors, family and myself are all at a loss.
I went from fully functioning and full time working to bedbound and having to be on benzos in a few weeks.
I would love ideas and explanations for the strange and rapid decline of my CFS.

My ME/CFS is rapid, unusual, and a lot of CFS specialists have missed it in the past in its mild form.
I'm at a point where 90% of my time is absolute torture, yet everything is always clear.
What is unusual is the psychiatric features for a person that is the opposite, the lack of brain fog and classic crashes. I do not really recover from crashes.

I personally feel there could be a mechanical element, just because of this huge disconnect between my personality and the features.
What's puzzling is the rapid decline.
I'll give you the basic time stamps and symptoms.

Before 2014:
Always cold hands and feet
Sweaty hands and feet (allergy against heat)
Often throat infection.

2014:
Thyroidectomy. Hard to adjust to hormones. Ft3 always low. Can't deal with T3.
6 weeks afterwards: development of burning mouth syndrome (neuropathy?). This got worse throughout the years (clenching my jaw at night), but also better.
Occasionally depression after sports.
Sometimes numb hands.
Some skin allergy starting.

2016:
12 months cough after moving to Hong Kong (pollution more than mold probably).
Hoarse voice. No reflux (did manometry and 24h study)
Always living with dry throat and changed diet to come by. Better 2018.
Developed constantly blocked ears and lump on throat (protection against silent reflux?)

2018: start of slower healing of tendons in different parts of my body.

2019:
Unknown virus in Vietnam.
Nausea for three weeks.
Then strange vagus nerve related illness, lost lots of fluid, change of stool.
Belly cramps after all food.
Diagnosed with severe pancreas insufficiency afterwards.
At the SAME time my pancreas and gut were off: my nervous system was constantly wired. Daily panic attacks just in my head, unrelated to my feelings. Pancreas treated with enzymes - took away pain and cramping.

2020:
Development of CFS mild.
"Anxiety" wasn't treatable with antidepressants (make me wired or instant panic). No help with therapy. I would more call it dissociation attacks than anxiety. This changed to mild depression which resolved after introduction of pacing (!)
This was when I undertood that my PEM manifested as depression/rumination/heightening of the nerves/somehow on the vagus nerve. It's like pocket windows of mental PEM.
2020: I developed postprandial syndrome: after all food my vagus nerve got "stuck" or high. Sometimes sleepy after eating, and walking while digesting was particularly bad.
Adjusted with pacing and worked full time in home office. Took Ketotifen, but mostly helpful with sleep.
Developed formication (bugs crawling) on skin.

2021, May:
Covid vaccine. Pfizer 1.
Extreme reaction. Dissociation 8 hour into it. Over 2 weeks my ME became severe - even though I paced.
Bedbound. My PEM again after physical and mental exhaustion: panic attacks and depressive rumination (indicating crash and lower baseline). Imagine that like a dissociation attack after eating, a shower - one that I can feel as my brain nerves (on top of my head) heat up.
Went into hospital to exclude other things. No autoimmune. Thyroid levels low (high TSH) despite no change in medication. Heart all normal. Slight bradycardia in sleep and shortened sleep.
Spinal tap done: normal. Two attempts, very traumatising as I was very nauseous and weak and almost passing out.

Crashed after spinal tap: very weak, post punctual headache/spinal leak.
Extremely high nervous system, extreme insomnia. Recovered a little but never completely. My main symptoms with the leak: burning scalp, skin, positional headache after 10 minutes. I felt my cranial nerves in the same night as my spinal tap.

Two weeks after spinal tap:
Positional headaches stop. Still scalp burning and migraines triggered. Very subtle symptoms of leak, in particular neurological.
But extreme crash after three weeks: to now very severe.
Extreme hyperacusis. Burning head/scalp. I get 8 hours nerve inflammation attacks per day where I can feel my brain inflammation. This is often related to burning back, burning between shoulder blades. Burning skin (arms, chest mostly).

Then I can have days with less symptoms.
All my PEM is daily. The brain inflammation is limiting and paralysing, but also related to extreme depression and rumination. Once the brain inflammation attack stops, I am back to my usual self. I describe this as daily torture.
All of my pain is in the head and apart from the migraines don't have to use pain killers as I am 100% flat.
I have to use benzos because nothing else helps and I have extreme medication sensitivity. It's like an otherworld, when the brain inflammation sets in. Also speaking is hard (due to nerve weakness?), and I have a big lump on throat.
Then every once in a while, I would get lead feeling in body. 3 good days. Back to wiredness.
I can't stand communication anymore, am extremely dysfunctional, my parents have to do everything. Sounds are like penetration, as is communication.
Of course this makes hospital or doctors extremely difficult.
I also have extreme reactions to medication (for instance trying a migraine med sent me into a big crash).
Eating and communication is very difficult.

Before the vaccine, I've always thought my ME is metabolic, due to pancreas illness etc.
But because of the mega unusual vaccine reaction and the mechanics of the fluid leak, which makes me believe that there could be nerve stretching involved, I've thought: what if my body is extremely sensitive to any changes in the nervous system?

Then there is this unusually rapid presentation and the extreme burning of my brain, but it is not a swelling.
So I am wondering what could be going on mechanically.
Recently I've even thought: what if it is not the crappy pancreas, but the pancreas just an expression of what's going wrong at the nerve (or even brain) front? In particular because my pancreas looks fine on imaging, so it can only be a hormonal or nerve thing.
The postprandial high nerves are definitely mechanical and not related to what I eat (although harder the more the pancreas is working!).

There is also so much talk about connective tissue recently.
Maybe there are other pathologies worth considering, for instance nutrition and gastro issues, next to EDS like conditions?

I've been wrecking my brain about my pathology. Likely there is more than one thing involved.

How does it read for you?
Are there other people who have a very psychiatric presentation and rapid decline? Did you find value in exploring the mechanical route or connective tissue theory?

<3 from brain attack torture land

Thank you for reading!
 
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I don't have a concise answer for you, especially because how complicated and diverse your symptoms have been over the year. However I do have a few thoughts and questions and maybe these will help in some small way.

I too find mental PEM to be absolute torture when it's at its worst. I usually don't describe it as depression/anxiety, partly because this gives people the wrong impression, but I guess it's within the same realm of experience - feelings of agonizing overstimulation, and deep, morbid dread. You mention 'heightening of the nerves', and attribute many of these feelings to brain inflammation, which I think is not far off the mark. Inflammation of glial cells, which are sort of 'helper' cells that coexist with neurons throughout the body, prevents them from resorbing glutamate, which can certainly lead to this hyperexcitatory state. Glutamate is also an immunomodulator, so its probably likely that the immune derangements of ME/CFS can contribute to excessive glutamate. If you have a glutamate problem, it would make sense then a benzodiazepine provides some relief. What benzodiazepine do you use for these symptoms? I've heard Klonopin is the most effective because it is also an NMDA (glutamate) antagonist. I know you are sensitive to lots of other medications, but I'm wondering if you've tried a lot of other sedative/anticonvulsant type drugs. I have found gabapentinoids to be partly effective at reducing PEM, as well as memantine. Granted, this angle is not going to cure your ME/CFS, but if you can at least reduce the symptoms to a tolerable level, I imagine you would be better able to try other approaches, as well as handle practical, formal tasks like arranging doctors visits, without risking an intolerable exacerbation of your symptoms.

Even from the beginning you have had low T3, and presumably high TSH, and taking T3 seemed to makes things worse. Did an endocrinologist ever weigh in on why this reaction occurred? It is very strange and seems to beckon a second look. I wonder whether you were given too much T3, and that a much smaller dose might help in some way. On the other hand, because of thyroid hormones' stimulatory effect on metabolism, including sensitivity to noradrenaline, it might be unwise to try that just yet. Perhaps even your reduced sensitivity to TSH is somehow your body's way of compensating for an already-overactive nervous system or broken metabolism.

You mentioned that a manometry and 24 hour test ruled out reflux, but let me assure you that negative results on these tests are pretty much close to useless. Aberrations in esophageal motility that lead to reflux are incredibly subtle and significant, visible reflux may not occur during a single 24 hour span. I had a bravo chip test done (the reading was 72 hours) and I had only one episode of reflux - had it been 24 hours, it probably would not have been caught. Despite this, my gastroenterologist was eager to label me with reflux - apparently even the most isolated instances are enough to settle the explanation for persistent symptoms. If your reflux is mild, especially something like LPR, it is very tough to treat by conventional means. Most likely if you do have reflux, it is secondary to your other GI issues, such as the pancreatic dysfunction. If your digestion is off, chances are you get bloated and this bloating presses your stomach contents up into your gullet. In that case, one thing that might be worth a shot is L-limonene. Taken once every other day for a couple of weeks it has been shown to directly block the inflammatory effects of reflux on the esophagus. Pretty good safety profile, few side effects.

However, if this hoarseness is not due to reflux, it makes me think, especially in combination with some of the nerve pain symptoms, that it might be due to Sjogren's. You can look into this first with a simple blood test - make sure to not just look at normal Sjogren's antibodies but also the 'early Sjogren's' panel. If these are positive, usually a lip biopsy is done to confirm, which is a real pain to do but presumably quite worth it if it ends up proving you have it. Sjogren's, in addition to its characteristic 'dryness' effects throughout the body, can cause all kinds of other neuropathic and inflammatory issues which certainly would at least begin to explain some of the other issues you're dealing with.

There's obviously some kind of immune problem happening in your case, but you didn't mention if you've looked at infectious causes - EBV, HHV, CMV, among many others. The jury's still out on whether these are truly causes of ME/CFS or just provoked by it, and if they do cause it whether ME/CFS is due to persistence of the pathogen or not, but it might help me understand the whole picture. Likewise, have you tried any immunomodulator drugs, like low-dose naltrexone? Corticosteroids are not usually recommended for ME/CFS, but a lot of people have taken then incidentally or as a sort of emergency treatment; have they had any effect on you?

It sounds like you're having a particularly tough time right now, and I'm sorry to hear that you're struggling. I know it's kind of trite, but it always seems to help me during times like these to remember that all you can do is your best. It's like chess - even when you're losing, you can still make smart moves. And often times you really don't know that you will lose until it actually happens. You are seeking help from your peers with such commitment and detail, and what I see is a skilled chess player playing from behind, or a skilled poker player making the best of a bad hand. You haven't lost yet.
 

judyinthesky

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@katabasis thank you so much
I've had a few of your thoughts already. Thanks again great thinking.
I've not had a Sjorgens test yet but all sorts of autoimmune things have been excluded. And no dry things or so.
I use passion flower, valerian and Klonopin atm, yes.
I've always got predominantly mental PEM, but, meanwhile it is at a point where every day my brain is inflamed and it becomes a sort of otherworld I get sucked into, a hour-long attack that can last the whole day.

Unfortunately I can't go to doctors atm.. I can't have conversations at all. Partly because of the weak throat, partly because of overstimulation. I would probably risk an MRI with lots of sedation. But I am very severe.

Regarding T3 I've tried extended release and also very small dosage when I was still a bit better and it never helped but made things worse.

I agree that in the case of the reflux it could be related to the pancreas issue and silent. With the recent lump I was thinking though that maybe it is also lumbar puncture and cranial nerve related. It sounds weird but that's when speaking started to make issues, lead to headache, or introduce PEM. Generally speaking is very bad.

So I wonder whether it could be cranial nerves related more than gastro, in particular since I haven't changed my diet
The other idea is that benzos could have an effect on the stomach sphincter. But then there is also a sickness nerve related feeling to it - hard to explain.
But I'll check out the stuff you mentioned.

Regarding viruses I've done a panel. Negative for EBV. Only herpes.
I've got LDN here. Wanted to start it when I stabilise. I'm a bit worried as headaches are reported though and it's a diuretic apparently - when I still might be leaking.
X
 

J.G

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Hey Judy,

I'm sorry to hear you've been struggling so much.

Your case sounds a little like mine. I have post-viral ME from an unidentified infection that I, like yourself, contracted in Asia. I also developed the severe idiopathic pancreatic insufficiency that you describe (for which I take prescription digestive enzymes; fats are a particular problem) as well as general GI issues ("IBS"). Like yourself, my PEM is cognitive as much as physical, and I too find that speaking makes my brain poop out ultra-fast. Any more than a few sentences will do it, with next-day PEM the result.

So while I can't help you, know that you're not alone with your symptom profile. Hang in there.
 

Pyrrhus

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I'm so sorry to hear about your situation!

I can't offer any great insights, but maybe a few hints:

Diagnosed with severe pancreas insufficiency afterwards.
A related discussion about pancreatic insufficiency:
https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Crashed after spinal tap: very weak, post punctual headache/spinal leak.
I'm no expert, but I have heard that leaks after a lumbar puncture may be a sign of poor collagen.

Covid vaccine. Pfizer 1.
Extreme reaction.
It's possible that you had a low-level infection of SARS-CoV-2 that your immune system had failed to recognize for some reason. Then, after the vaccine, your immune system suddenly recognized the infection.

If your reflux is mild, especially something like LPR, it is very tough to treat by conventional means.
You may be interested in this post:
https://forums.phoenixrising.me/thr...-away-after-a-proper-meal.82431/#post-2314171

I know it's kind of trite, but it always seems to help me during times like these to remember that all you can do is your best. It's like chess - even when you're losing, you can still make smart moves.
Very well said!
There's a good reason why they call it "doing your best". Because you literally can't do any better than that...
 

judyinthesky

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@Pyrrhus thank you
So, I have thought about the collagen issue and am already supplementing. My tendon issues could point in that direction.
I have no EDS though or so.
It might just be unlucky and I am thin. Risk group is tiny or thin women.

Regarding Cov, wouldn't my antibodies have to be higher then? Hospital did measure this and it was as expected.
The whole post vac process was very sudden, but the high nerves seemed independent from the normal immune response there.
Also, I felt like the vac reaction was so extreme just because it's been a new thing. Like a shock. The actual immune process took two days and it was normal.
It's interesting though and I've heard about it. I've had lots of tests though almost every week before this happened, since Cov tests came out, so I would have had to have bad luck in missing it. Is there anywhere I can read on this or anyone happened to know more?
 

judyinthesky

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Hey Judy,

I'm sorry to hear you've been struggling so much.

Your case sounds a little like mine. I have post-viral ME from an unidentified infection that I, like yourself, contracted in Asia. I also developed the severe idiopathic pancreatic insufficiency that you describe (for which I take prescription digestive enzymes; fats are a particular problem) as well as general GI issues ("IBS"). Like yourself, my PEM is cognitive as much as physical, and I too find that speaking makes my brain poop out ultra-fast. Any more than a few sentences will do it, with next-day PEM the result.

So while I can't help you, know that you're not alone with your symptom profile. Hang in there.
Interesting
The brain thing I only have since the lumbar puncture though

Yeah I do believe that pancreas illness can set somehow up for ME and that this isn't very well recognised by specialists yet.
My cognitive symptoms are never brain fog.
Always only extreme wiredness/brain inflammation torture. At least since severe.
 

Pyrrhus

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The whole post vac process was very sudden, but the high nerves seemed independent from the normal immune response there.
Yeah, if your reaction was only 8 hours after the first vaccine, it's hard to attribute this to development of antibodies, which usually takes 2 weeks.

The actual immune process took two days and it was normal.
I'm not sure what you mean by this?

I've had lots of tests though almost every week before this happened, since Cov tests came out, so I would have had to have bad luck in missing it.
In that case, I guess it could also have been a different virus, not SARS-CoV-2, that you were previously exposed to. If this previous virus was a different coronavirus, which is quite common, then you might already have antibodies to the spike protein, even if they would not show up on a SARS-CoV-2 antibody test. The vaccine could then have re-awakened an immune response to some previous virus?

Not sure, but you may find this paper interesting:

Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms (PolyBio, 2021)
https://forums.phoenixrising.me/thr...te-to-persistent-symptoms-polybio-2021.84761/
 
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judyinthesky

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@Pyrrhus there were two reactions to the vaccine
One that normal response
Expected flu like feelings feeling weak
Was not too bad and for two weeks
And another one that instantly heightened my nerves and made my CFS worse throughout the weeks
Weak legs etc