POTS with Mast Cell Activation

[Marco]

I thought this might be of interest given the prevalence of POTS and recent discussions about systemic mastocytosis and histamine :

Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders

Abstract

Postural tachycardia syndrome (POTS) is a disabling condition that commonly affects otherwise normal young females. Because these patients can present with a flushing disorder, we hypothesized that mast cell activation (MCA) can contribute to its pathogenesis.

In conclusion, MCA should be considered in patients with POTS presenting with flushing. These patients often present with a typical hyperadrenergic response, but ?-blockers should be used with great caution, if at all, and treatment directed against mast cell mediators may be required.

http://hyper.ahajournals.org/content/45/3/385.full

 

[Sallysblooms]

POTS is so awful. I flush terribly. RED hot,even though we keep our home very cool for me. My doc and I decided to try Claritin and my hands felt awful. I had no idea that and other antihistamines have so many awful reactions. Many people do ok with H1 and H2 blockers. Not me of course... I am on Quercitin & Nettles now. HistaEze is another supplement that is good. POTS is a very hard thing to deal with. I am improving greatly, but still flush. I have not been consistant with the supplements for the flushing so I hope to get a lot of relief.

I have been concentrating on the healing of my nerves since I have Autonomic Neuropathy, most POTS is because of that. That has been great, but nerves heal slowly.

 

[Ema]

I wish that I understood how all this fits together because it surely must!

I have very high whole blood histamine levels and OI that is pretty well controlled with Florinef, no flushing though. I investigated systemic mastocytosis through a tryptase test but it was not out of range or even particularly high. My doctor doesn't understand systemic mastocytosis at all though and ordered the test basically just as a courtesy to me.

I also have EDS and I've seen a website that discusses this condition along with POTS and systemic mastocytosis. I thought it was interesting.

The Driscoll Theory: The Role of External Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the Cause of POTS (Postural Orthostatic Tachycardia Syndrome) in Ehlers-Danlos Syndrome

http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory

 

[adreno]

Mastocytosis and MCAD are not the same. The former is increased number of mast cells, the latter is excessive mast cell degranulation.

 

[Ema]

It sounds like they can occur together.

 

[nanonug]

POTS is so awful. I flush terribly. I have Autonomic Neuropathy, most POTS is because of that.

Have you measured your plasma histamine levels?

 

[nanonug]

I have very high whole blood histamine levels

Whole blood histamine is not useful, because most histamine is "bound" in basophils, for example. You need to know plasma histamine levels.

 

[Ema]

Hmmm. That's interesting. Everything I've read on high histamine levels on the Internet deals with whole blood histamine and not plasma levels.

Can you point me to anything to read more about it?

Thanks!

 

[nanonug]

Everything I've read on high histamine levels on the Internet deals with whole blood histamine and not plasma levels.

Are you talking about things such as histadelia? Doing a search on Pubmed for the condition reveals: "Showing results for cittadelia. Your search for histadelia retrieved no results" In my opinion, histadelia is crapola!

Here's a real scientific article about histamine: Histamine and Histamine Intolerance. Look at Table 1.

 

[Ocean]

POTS is so awful. I flush terribly. RED hot,even though we keep our home very cool for me. My doc and I decided to try Claritin and my hands felt awful. I had no idea that and other antihistamines have so many awful reactions. Many people do ok with H1 and H2 blockers. Not me of course... I am on Quercitin & Nettles now. HistaEze is another supplement that is good. POTS is a very hard thing to deal with. I am improving greatly, but still flush. I have not been consistant with the supplements for the flushing so I hope to get a lot of relief.

I have been concentrating on the healing of my nerves since I have Autonomic Neuropathy, most POTS is because of that. That has been great, but nerves heal slowly.

Sally,

Do you your doctors do long-distance consultations? It seems you get a lot of good care from them and I'm interested in someone who knows supplements, especially because I'm having so much trouble tolerating so many of them.

 

[Ema]

Here's a real scientific article about histamine: Histamine and Histamine Intolerance. Look at Table 1.

I requested a plasma histamine test but I got another whole blood result! Grrr. The good news is that it has dropped under 100 ng/mL for the first time since I started measuring it a year or so ago. Still too high which indicates undermethylation but improving which is encouraging!

So I will try again at my next blood draw in about a month...

 

[nanonug]

I requested a plasma histamine test but I got another whole blood result!

Ema, actually a plasma histamine test will probably not be very useful either. The reason (unless you have a really big screw up going one - might be worth to test it once, I guess) is that histamine is rapidly converted to N-methylhistamine. N-methylhistamine stays in the body for hours and is eventually excreted in urine. Urinary N-methylhistamine is therefore the "useful" test.

 

[Ema]

Never underestimate the power of my body for a "really big screw up"! LOL.

Thanks for the info...I'll look into that test as well.