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Can some MCAS symptoms be due to it causing autonomic neuropathy?

MCASMike

Senior Member
Messages
126
I came about a thread on a different forum that included two people talking about their symptoms, which included a few consistent with autonomic neuropathy. I too have postural hypotension (in fact, if I just move my arms around enough my HR can rise substanially), I rarely sweat, parts of my body can be cold while others feel quite hot, apnea type sleep issues, and almost certainly exercise intolerance (the cardiologist said there was no need for a stress test because I would undeniably fail). Autonomic neuropathy can be caused by an autoimmune disease, so I'm wondering if these symptoms of mine are the result of MCAS. Anyone have a similar situation?

This is the thread mentioned above:

https://www.dinet.org/forums/topic/28719-total-body-anhidrosis-and-other-issues/
 

xebex

Senior Member
Messages
840
I have similar issues but not MCAS though I do have some kind of histamine/amine issue maybe mild mast cells activation. Pretty sure I wouldn’t get diagnosed., none the less I’m moderate/severe ME. A histamine issue could cause blood vessels to dilate and make blood pool, which reduces oxygen circulation in the body, over time that could damage nerves causing SFN it would also cause symptoms of low blood pressure and racing heart as it tries to pump blood back up the the upper part of the body hence why moving/raising arms make it worse .

However I also think this type of response can be caused by other things. A spine injury for instance, (of which I also have). Nerve damage caused by EBV could be another possibility.

For me various herpes viruses, amine issues and a spine injury that caused my ANS to go haywire are causing symptoms similar to what you are describing.

It’s just still so unknown.
 
Messages
89
I don’t sweat much since getting covid in april. My feet are completely dry. I have dysautonomia/POTS and I suspect some kind of mast cell issue since my collagen is breaking down too. In the past few weeks I’ve been reading about autonomic neuropathy and anhidrosis. There’s not much to read though.
 

dave11

Senior Member
Messages
158
Autonomic neuropathy can be caused by an autoimmune disease, so I'm wondering if these symptoms of mine are the result of MCAS. Anyone have a similar situation?

@MCASMike, I have MCAS. My symptoms are air hunger, more air hunger, muscle weakness, sleep apnea, and cold intolerance. My cardiologist had me do the stress test, and I thought I was going to die, as my heart would not slow down after it. Usually, my heart rate is on the slow side.

Here is a pretty good list of MCAS symptoms:

https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/
 

MCASMike

Senior Member
Messages
126
@MCASMike, I have MCAS. My symptoms are air hunger, more air hunger, muscle weakness, sleep apnea, and cold intolerance. My cardiologist had me do the stress test, and I thought I was going to die, as my heart would not slow down after it. Usually, my heart rate is on the slow side.

Here is a pretty good list of MCAS symptoms:

https://hoffmancentre.com/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/

Never heard of air hunger, but I guess that's what happens when I wake up feeling like I can't breathe (like I "got the wind knocked out of me," which happened twice when I was a kid and fell on my stomach). Fortunately, the MCAS treatment I'm using now (including loratidine, aspirin, D3, etc.) seems to be working quite well, though I'm only a month into it.
 

dave11

Senior Member
Messages
158
Never heard of air hunger, but I guess that's what happens when I wake up feeling like I can't breathe (like I "got the wind knocked out of me," which happened twice when I was a kid and fell on my stomach).

My air hunger is like a constant shortness of breath. At its worst, it is 24/7. Nowadays, it is much better, and is generally associated with a little too much physical exertion. What you described sounds more like sleep apnea. Recently, I took high dose melatonin for several nights, and was waking up to find I was not breathing. Scary.

Glad to hear you have your MCAS under good control.
 

MCASMike

Senior Member
Messages
126
My air hunger is like a constant shortness of breath. At its worst, it is 24/7. Nowadays, it is much better, and is generally associated with a little too much physical exertion. What you described sounds more like sleep apnea. Recently, I took high dose melatonin for several nights, and was waking up to find I was not breathing. Scary.

Glad to hear you have your MCAS under good control.

When I move around too much, even just bringing a lightweight object up from the basement, I am usually at least slightly out of breath, so would be consistent with "air hunger?" Thanks.
 

dave11

Senior Member
Messages
158
When I move around too much, even just bringing a lightweight object up from the basement, I am usually at least slightly out of breath, so would be consistent with "air hunger?" Thanks.

Yes. There are quite a few posts on PR on the term "air hunger," which you can find using the PR search tool.
 
Messages
62
I do have some kind of histamine/amine issue maybe mild mast cells activation. Pretty sure I wouldn’t get diagnosed. A histamine issue could cause blood vessels to dilate and make blood pool, which reduces oxygen circulation in the body, over time that could damage nerves causing SFN it would also cause symptoms of low blood pressure and racing heart as it tries to pump blood back up the the upper part of the body .

However I also think this type of response can be caused by other things.
@MCASMike I popped over to PR rising today to look up info in regards to MCAS.
For me I believe collagen is at the root, and mma. With this last crash it was discovered that my methylmalonic acid was life threatening high at almost 17,000 (s/b no higher than 29). The mma came down right away with B12, but the damage is not reversing. My red blood cells are always large being at the top or over the top of the range. I've been focusing on trying to get by B12 up, so that my red blood cells will normalize, so that they will be small enough to reach the smallest areas and therefore reverse the vascular damage and the neuropathy and the horrific headache (and occular damage). I've also been focusing on nutrients (IV NAD, IV ALA, bio-available silica, etc), PEMF and whole body vibration to improve my vascular system, but not is improving. (I'm doing injectable methylcobalmin daily, along with a full MTHFR protocol)

Friday, during an appointment with my bio-identical hormone doc she pushed a little harder questioning why my body is being so resistant to "nutrients" - not picking up even the injected B12. I told her my veins were just shot, and can't believe they aren't better, and neither is the neuropathy, or the horrific headache or vision. The more I thought about it, I had an NAD IV on Thursday and felt pretty good, and went to the dentist and within a few hours was knocked completely down and I knew it was an MCS/MCAS issue. My chemical sensitivities have indeed just gotten worse over the last few months rather than better. And my skin is excruciateling dry. Why? The phlebotomists continually complain about my veins and thick blood. I went to do a search yesterday regarding thick blood, and ruled out pretty much everything including fibrin because I take broad spectrum enzymes to deal with that. But histamine came up. BINGO! But I don't understand why?

Then when looking at anti-histamine foods - fish oil was listed. I've been taking 4-6 tablespoons a day of the stuff and it helps ...... a bit. I was taking it not because it's an anti-histamine but because it helps the brain "a la Dr. Nemechek and coat-hanger pain". Now I know why it's been helping. I added in quercetin, stinging nettles, and histaminum yesterday and things are a tiny bit better.

I've ordered freeze dried kidney (and some others) from Ancestriel Supplements which is high in DAO which I am hoping will help this dramatically. I've taken H1&2 blockers in the past and they help with some symptoms, but not much. At this point I'll go back on them, because the damage being done to my body is horrific.

@MCASMike I'm glad you posed the question, and @xebex I'm thankful you posed the hypothesis. I think it is sound and it is exactly what I've been living and putting together.
 
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Messages
62
I did want to add that ANYTHING that is vasodilating sends me to migraine hell.

And for those of us in this MCAS situation, beware of the filler microcrystalline cellulose.
 

MCASMike

Senior Member
Messages
126
Momentum, I am going in a more basic direction, I guess one might say. I'm taking 20 mg loratidine and about 600-620 mg of aspirin each day, along with at least 2000 iu of D3 and some other basic supplements (magnesium, C, Bs, selenium, calcium, etc.), and drinking tea made with Mexican oregano and gree tea bags (just started adding celery seed today). Most of my symptoms are gone or much better; my legs are still weak (though sometimes clearly better than a month ago) and I still get breathless easily. However, supposedly it can take around 3 months to see all the positive effects. I won't tell you what to do but I stopped all omega 3 supplements a while back after reading what Ray Peat had to say about them and saw some positive effects at the time, but some of the things that didn't go away got worse in recent years, and that lead me to MCAS. Basically. I now believe that "essential fatty acid deficient" people are better off in the context of chronic inflammation, so long as their diets are otherwise healthy.
 
Messages
62
Hmmm, I'll rethink the fish oil. It does bring about an hour of a bit of relief due to it's antihistamine effects. If I can find something that is as effective I'd gladly drop it. I was considering aspirin, but read that some people react to it. I wonder if they are reacting to the fillers rather than the aspirin itself. I do have pure aspirin powder. And I'm taking the other supplements you are on.


I haven't been addressing histamine/MCS/MCAS until the last few days. Just vascular health and have been getting worse. I'd have to avoid celery seed as it is high in oxalate and I believe oxalates set off my whole mma cascade.

It will be interesting to see how you do on green tea as I've read it is high in histamine, but we all have our triggers. I went to eat an apple, supposedly low histamine, yesterday and just the smell set me off. It was organic, but it smelled strange. No one in the family would eat it.

I'm wondering how much of this has to do with folate and methylation? I do take quite a bit of methylfolate. IDK.
 

MCASMike

Senior Member
Messages
126
Momentum, I didn't realize that about green tea, as I got my information about it here:

https://hoffmancentre.com/natural-treatments-for-mcas/

Would you get a lot of oxylates out of a few dozen tiny celery seeds after they were soaked in hot water? I don't know enough about oxylates to say, but supposedly if you eat calcium-rich foods with oxylate-rich food you don't have to worry about oxylates, right?

The thing about "essential fatty acids" is that if you eat enough, you get arachidonic acid in your cells. If you are "essential fatty acid deficient" but your diet is otherwise fine, you get Mead acid in your cells. Mead acid is a lot less reactive and can't be made into some of the inflammatory molecules that can be so dangerous; that's why I decided to avoid the "EFAs." That was after experience a whole lot of MCAS symptoms over a long period of time, and while I did get some symptom relief and other benefits, certain stressors still trigged certain symptoms. The worst stressor is (or hopefully, was) waking up too early, but taking aspirin throughout the day seems to help a lot with that (I tried that back in 2008, when I had to get up early for about a week, but I only learned about MCAS a bit over a month ago.
 

hapl808

Senior Member
Messages
2,178
Momentum, I am going in a more basic direction, I guess one might say. I'm taking 20 mg loratidine and about 600-620 mg of aspirin each day, along with at least 2000 iu of D3 and some other basic supplements (magnesium, C, Bs, selenium, calcium, etc.), and drinking tea made with Mexican oregano and gree tea bags (just started adding celery seed today). Most of my symptoms are gone or much better; my legs are still weak (though sometimes clearly better than a month ago) and I still get breathless easily. However, supposedly it can take around 3 months to see all the positive effects. I won't tell you what to do but I stopped all omega 3 supplements a while back after reading what Ray Peat had to say about them and saw some positive effects at the time, but some of the things that didn't go away got worse in recent years, and that lead me to MCAS. Basically. I now believe that "essential fatty acid deficient" people are better off in the context of chronic inflammation, so long as their diets are otherwise healthy.

Extreme leg weakness is one of my worst symptoms. Unfortunately I tried loratidine in the past before I even had extreme MCAS symptoms and it gave me a racing heart and palpitations back then - as do most antihistamines (I've tried claritin, zyrtec, allegra - benadryl is okay, but obviously has the sedative component which I don't like).
 
Messages
62
Momentum, I didn't realize that about green tea, as I got my information about it here:

https://hoffmancentre.com/natural-treatments-for-mcas/

Would you get a lot of oxylates out of a few dozen tiny celery seeds after they were soaked in hot water? I don't know enough about oxylates to say, but supposedly if you eat calcium-rich foods with oxylate-rich food you don't have to worry about oxylates, right?

The thing about "essential fatty acids" is that if you eat enough, you get arachidonic acid in your cells. If you are "essential fatty acid deficient" but your diet is otherwise fine, you get Mead acid in your cells. Mead acid is a lot less reactive and can't be made into some of the inflammatory molecules that can be so dangerous; that's why I decided to avoid the "EFAs." That was after experience a whole lot of MCAS symptoms over a long period of time, and while I did get some symptom relief and other benefits, certain stressors still trigged certain symptoms. The worst stressor is (or hopefully, was) waking up too early, but taking aspirin throughout the day seems to help a lot with that (I tried that back in 2008, when I had to get up early for about a week, but I only learned about MCAS a bit over a month ago.
It is so frustrating. I've read good and bad on green tea. I really think it is so individual. I think I'll try it again and see if I react.
As far as oxalates go, you'll have to forgive me because when I replied I had a screaming headache - still do - but I was thinking celery bunch, not seed. When I was juicing an entire bunch of celery/day - when the craze hit the country about two years ago - my hypermobile symptoms got much worse. I don't think a few celery seeds would hurt, just remember that oxalates are cumulative. My current "crash" - which is horrific was started with too many oxalates and I was having them with calcium. I was drinking a daily chai tea with plenty of cream. If a person doesn't have collagen issues, I'd imagine they can tolerate more oxalates.

Thank you for further posting regarding the EFAs. I definitely feel better for at least an hour after I take fish oil and I never knew why - other than "we need to balance our omega 3s to 6s". But in this video, albeit veterinarian, he states, "Omega 3s don't enter the arachadonic acid cascade"
This is a screen shot from the video. I like the chart because it's helpful not only in giving some possible remedies, but if those remedies improve symptoms I think this provides more specific clues as to what is going on.
Screen Shot 2020-12-12 at 10.32.05 PM.png

I'm glad aspirin gave you some relief. I'm going to give it a go. Stress is a big trigger for me, but so is mold, white wine, chemicals, and who knows what. Ultimately, I think I'd like to try a mast cell stabilizer to end this vicious cycle.
 

MCASMike

Senior Member
Messages
126
I began taking omega 3 supplement between 1 and 2 years before I almost died from malabsorption, cause unknown (as to the doctors' abillities/tests), until I began Betaine HCl supplementation. By then I weighed around 95 pounds at 5'9" tall, and a relative suggested I ask my PC doctor about taking a DEXA scan, which revealed severe osteoporosis. After reading about "essential fatty acids," around this time, I decided that notion made no sense and have avoided any foods rich in omega 3s and 6s for nearly 20 years.

As to dealing with MCAS, it's been just over 2 months now. I drink a celery seed and Mexican oregano tea each day (with other stuff like green tea, marjoram, cherry juice concentrate or prune juice, etc.), and take around 2000 iu of D3, along with the aspirin and loratidine (and some other supplements). The last couple of days I had a runny nose now and then but it wasn't bad, and the itchiness is mostly the same; I also needed to use the Zaditor eye drops once in a while (one drop in the right eye yesterday, for example).

During the holiday I stood up longer than usual and the next day I was really sore/achy in the legs at first but after a couple hours (drinking the tea and taking the other things), it was mostly gone. So, overall, I am definitely in a lot better shape than I was in mid October, and sleep is now almost like a normal person's!

Also, I don't tend to eat large meals but I did several days ago (though it wasn't that large) and had GI discomfort all night. I now plan on sticking to my usual 4 medium-size meals each day.
 
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