from profound fatigue to constantly reved up (and update, neurotransmitter and dental work)

vision blue

Senior Member
Messages
2,000
HI Everyone. been a while since I could log on. Its weird to think after decades of profoud fatigue, I'm now so revved up all the time. Sympathetic nervous system excess feels like 24/7. You'd think that would mean I could finally do more activites, but it does not- get too oversimulated, hypertensive crises, etc. I've been considering mast cell disorders (have plenty of those symtpoms), a recurrent virus (when it started), worening of AI disease (have that as well as CFS), pheochromocytome (my metenphrines in serum are only 1.5 times normal) The sympathetic excess seems to go with autodysfunction with difficulty regulating bp, heart rate, temperature, but not sure. Also wonder if my mother had someting similar. She had had AI thyroid disease bu tthen developed hard to control bp and in retrospect seemed to be revved up all the time.

But as long as I'm updating, wanted to say I remain convince no matter how many years go by that the stimulus for all of this was the dental work that I had bad immune reactions too so long ago. I think that it even gave me the intolerance i've posted about to tyramine (and other biogenic amine) containing foods, since those are very similar in effect to neurotrasnmitters. i mean neurostransitters are amines just like the foods I can't tolerate.

There's only a tiny bit of valication from a quack. when i read carefully to see why a clear greedy scam artist came up with something pretty close to correct (he argues that dental products like Dycal and later added many others to list) caused a neurocutaenous syndrome) and i saw that his very first patient number 1 in all his fake publications was someone who came to him from Sweden where it was there they diagnosed her neuro and other symtpoms as Dycal related toxicity! So that's where he learned of it. His name BTW is Omir Amin in Scottsdale AZ. I'd like to talk to that first patient of his, but i doubt they will put me in touch with her. Perhaps if I offer money for that info he will, since he's apparently very very greedy.

I think the order if i had to guess were: lifelong minor mast cell problem that's common (had dermographia since age 10, digestive issues since age 4 months), and the extenisve dental work with stuff I reacted to badly (after a local allergic reaction, got sick for nearly a year, did not tie it into dental work, fully recovered), then had more dental work maybe 5 years later with explosive clear allergic reaction, followed by increased basophils, followed by what was diganosed as CSF, followed by temperature elevation, followed by eventual autoimmune disease as well. Now fast forward, and we can say followed by symptathetic nervous system/hyperandrergic/dysautonomia. I should add chronic sleep interruptions also set the stagte( the reccruent virus , either zoster or hsv1, gave me what appears to be cranail neuralagia in upper division of trigeminal nerve). STill not sure exactly how neural toxicity from the (allergy to) dental work means hypersenstiviity to foods that mimic neurotranmitters, but tht started with all the other symptoms following dental work. (not just coincidentally follow, have more cause/effect data).

oi, getting very pained from typing so have to stop now, but wanted to update everyone and say hi. Also had an intersting observation. The level of scrutiny on this list is mjuch more thorough and analytic than any other. YOu might say ,well, we're all so desperate. But not true. there are alot of desperate conditions and desperate people out there - and it does not translate to these kinds of discussions. Instead, i think its a symptom we all share. So probably everyone is high in dopamine and nor epi etc. , perhpas years before CFS hit. Note how so many people talk about how they were very active they were before getting sick.

input welcome. i'm stil circling drain and have lost so much weight it is so very scary.

oh shoot, i have one more thing i want to say- i better start a new thread.
 

kangaSue

Senior Member
Messages
1,902
Location
Brisbane, Australia
Where a mast cell disorders is concerned, something I came across recently for the first time as a cause of IBS-like symptoms with chronic abdominal pain anf GI dysmotility is Allergic gastroenteritis and colitis and something which may represent a third type of GI mast cell disorder.

Mastocytic Enterocolitis is something similar but Allergic gastroenteritis and colitis has an even higher mast cell count per high powered field (>40) and whole blood histamine. Antihistamines and mast cell stabilisers should give relief of symptoms in either case.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346686/ (Allergic gastroenteritis and colitis)
https://www.aaaai.org/ask-the-expert/mastocytic-enterocolitis (Management of Mastocytic Enterocolitis)

Have you had autonomic function testing for POTS and or Autonomic Neuropathy?
 

vision blue

Senior Member
Messages
2,000
Hi. Thanks. Guess i need to look it up to see if the gastroenteritis can occur without IgE (probably yes - i don't think mast cells require ige to get released) and if can be delayed, and if can produce symtpoms like i get which extend well beyond GI symptoms- good lead though. By the way, i have loads of weight loss, not usually seen in "ibs type symptoms".

just realized this response makes the most sense for the symptoms i posted in a different thread. for this thread, not sure how its connected to the sympathetic nervous system excess.

I was going to try the mast cell stabalizer/bloker ketotefin which in now have - BUT have since read its also an H1 blocker. if this is true, its hard for me to risk. While h2 blockers alleviate alot of my symptoms, including itching, H1 blockers cause my bp to spike and heart to pound- very bad news when i'm often teetering on hypertensive crisis. Maybe i should try gastrochrom afterall - some said its less well tolerated that ketotefin so i didn't push it with the allergist. and now that all my allergy tests are turning out negative (I posted about this in another post), not sure i can ge more meds from her.

I have not had official POTs etc testing by a dysautonomioa center; just poor mans at home and in cooperative docs offices. Sometimes yes, i get 30 point rise in hr, but POTS is not a great fit and i view it just a symptom of dysautonomia.
 
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