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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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As soon as I start drifting off I'm shot awake by a shot of adrenaline and it's just that way the whole night. I never sleep because of this.
*Cold; mutaflor probiotic; identifying triggers*
From Basilico on PR:
My husband has had this issue [with adrenaline surges] a lot. For him, most of the things that cause the excessive adrenaline issues in some way do so by triggering a vagal nerve response. Also, his MAO system is not very efficient at breaking down adrenaline (which we learned after getting his genetic testing done), so when he gets an adrenaline burst, it lasts much longer than it should.
In terms of dealing with the adrenaline burst after it's already happened/happening, we've not found a magic bullet, but we have come up with a bag of tricks to help deal with it - he does sometimes need to use either Propanalol [or] Xanax works much better for him.
Additionally, we've found that being in a really cold environment (like A/C full blast) seems to prevent it or reduce it pretty quickly. We learned this after one of these attacks sent him to the emergency room, but after sitting in the waiting room which was really cold from excessive A/C, he suddenly felt much better. After that, we've tried experiments with turning the A/C really high in the car or at home, and it seemed to really help.
But probably what we try to focus on the most is preventing it from happening as much as possible by avoiding triggers. For him, there seem to be several triggers that prompt his wonky vagal nerve to trigger an adrenaline attack. His triggers are: low blood sugar, low blood pressure, and needles (so acupuncture was not really successful!).
He still is prone to excessive adrenaline, and it's probably something he'll have to deal with for life, but after taking a really good round of Mutaflor probiotic, a majority of the crazy adrenaline attacks just eventually stopped. He credits the Mutaflor for that, and I think it was likely that the Mutaflor did have a really big impact for him. Since gut flora control neurotransmitters, that's not such a stretch.
Also, certain supplements seem to trigger adrenaline attacks - for him, specifically P5P (B6). I don't know if you are taking any B vitamins, but if you are, you might consider testing them/suspending them to see if anything changes.
from belgiangirl on PR:
Another trick might help to lower your adrenalin in the body is this once told me by an older GP when I told him about my heart racing thing:
1. Start breath out as extremely slowly as possible, make it the longest outbreath you could ever do, it may take minutes (of course don't get dizzy or don't nearly try to kill yourself ).
2. Then breath in very quickly.
3. Then repeat: breath out extremely slowly ...
Most people's heart rate goes up when breathing in (adrenalin also) and goes down when breathing out.
I use to have this happen too. I would wake up with my heart pounding like it was coming through my chest. It still happens from time to time but it is much milder and I'm able to fall back asleep within minutes.
As I have improved my health, that symptom and many others are either gone or drastically improved. I improved by working on "very severe dysbiosis" found through testing and improving mitochondrial dysfunction.
I use to be severe, mostly bedridden, slept 16-18 hours a day, had PEM that would last for weeks at a time, etc. Now I do 6-7 hours a day of physical activity, my PEM never lasts more than 24 hours and only sleep 8 hours a night.
So in answer to your question, yes, by improving my severe gut dysbiosis and mitochondrial dysfunction. I have reduced the level of toxins in my body and reduced the immune system dysfunction, which I think is the root cause of my illness, caused largely by my gut.
One cause can be autoimmune dysautonomia. Increasing acetylcholine with pyridostigmine or Huperzine nay be helpful.is the heart pounding randomly during sleep from autonomic? i have this issue since years ago but im not sure if its because of ANS?
is there some research/explanation?
wasnt sleeping should be the most relax state...
ive been searching for answer for long time
also what you do to stop the attack?
hello.. i remember talking to you months ago about celltrend test(i think i remember correctly but im not sure if my brain is correct lol)One cause can be autoimmune dysautonomia. Increasing acetylcholine with pyridostigmine or Huperzine nay be helpful.
A cardiologist should check you out. But neurologists generally treat dysautonomia.
is the heart pounding randomly during sleep from autonomic?
I don't know. The way those symptoms have almost completely gone in myself is from improving gut dysbiosis, leaky gut and mitochondrial function. So I really don't know what was causing it specifically.
Well, the cell trend test would be useful. Why can't you do it now? Are they not running them? It's a simple blood draw, the challenge is mailing it to Germany, but mine was mailed from California, so should be doable from wherever you happen to be.
My neurologist is very much believing in dysautonomia being autoimmune. You can try direct treatments for symptoms like beta blockers and acetylcholine agonists like Mestinon or Huperzine A, and you can also try treatments that go after the autoimmunity, like IVIG or Rituximab. The trick with Rituximab is you have to make sure you are free of any infection before you do it, because it removes your B cells for about a year during the treatment and another 6 to 12 months after that. It's a little risky in a COVID world. IVIG is used in COVID patients so it's less risky.
The Huperzine A may be your cheapest and easiest option to try short-term. It is an over-the-counter supplement in the US. If it's a drug in your country, then you could ask your doctor for either Mestinon, also known as pyridostigmine, or the Huperzine A.
I've successfully shipped things from the US to Europe in the last 2 months.im already introduced to beta blocker since 15 years ago
but it only reduce heart pounding to some degree, it cant still make me normal/still cant do normal activities, i still got issues
(cant depend on it much for too long as it got side effects which isnt good)
im interested in testing the beta receptor antibody and maybe other test that could be connected to heart issues. since i also got positive antibody test to jo1. and pcna also one time elevated. so its weird.
during this pandemic i think the shipping and the laboratory would be more problematic(or i ont know if they accept it) but im not so sure if its operating normally nowadays i havent check with the update. because there was a lockdown at some places month ago.
but gut dysbiosis isnt connected to it? as far as i know...
did you cure it by supplementing? which supplement?
My experience is that having a healthy microbiome is not going to cure everything. My microbiome was in wonderful shape when I got dysautonomia, and it's been in worse shape (after a great deal of trying to fix it) since I've been improving. Ideally we should try to improve our microbiome health, but in my experience, it is a years' long project with mixed success, while treating dysautonomia can bring pretty fast relief.dysbiosis and leaky gut can cause many, many, symptoms including dysautonomia
is the heart pounding randomly during sleep from autonomic? i have this issue since years ago but im not sure if its because of ANS?
ive been going to cardiologist but they didnt found the cause. 1 of them said it could be autonomic but he couldnt confirm it. neurologist also dont knowm because in my country CFS, POTS, ETC isnt really known
My experience is that having a healthy microbiome is not going to cure everything.
Ideally we should try to improve our microbiome health, but in my experience, it is a years' long project with mixed success, while treating dysautonomia can bring pretty fast relief.
I think dysbiosis and leaky gut can cause many, many, symptoms including dysautonomia. It can also take a long time to improve them and be very difficult without guidance from a good functional medicine doctor.
Although it might not be what's causing your symptoms.