Four Hour Urine Methylhistamine Test

[EarthMother]

I finally got around to collect a four hour concentrated urine sample for the methylhistamine test. Folks may recall that researchers prefer the four hour concentrated collection (you collect for four hours following a flushing epidose). Reference the "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders" by Dr. Raj for more information on the study about POTS and MCAD.

Anyway, long story short my methyhistamine levels were not elevated. So its unlikely I have Mast Cell issues at play in my case of POTS. Good to know in any event.

Thanks to all for the excellent information.

~EM

[futurehope]

I finally got around to collect a four hour concentrated urine sample for the methylhistamine test. Folks may recall that researchers prefer the four hour concentrated collection (you collect for four hours following a flushing epidose). Reference the "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders" by Dr. Raj for more information on the study about POTS and MCAD.

Anyway, long story short my methyhistamine levels were not elevated. So its unlikely I have Mast Cell issues at play in my case of POTS. Good to know in any event.

Thanks to all for the excellent information.

~EM

It helps to know this is not the cause of your problems. You seem to have such good working relations with yours doctors that they just "do the test". I wonder which doctor to ask about this, the allergist maybe? And, then the testing, you have to know which labs to send the urine to, right?

Had you had a "flushing episode" prior to the test? And then you had your collection jug and script for the test all ready to go, right?

I admire how quickly you can get something to your doctors and have it done.

[juliegee]

Hey EM,

Your symptoms will help you figure out whether or not that one test can reliably rule out MCAD. First of all, I assume you had the test done within an hour or two following an episode- low BP, tachy, lightheadedness, nausea, "D", flushing, hives, throat/chest tightening, etc. If you just arbitrarily did the test on a "normal" day, it probably won't give your docs helpful information.

Secondly, do you continue to have MCAD symptoms? Most importantly, do you take daily H-1's and H-2's? Can you just stop taking them without an exacerbation of symptoms? If yes- you probably don't have MCAD.

In the end, time will tell. Your MCAD symptoms and dependence on meds could be quite telling and may necessitate a repeat test. My allergist has my carry a serum tryptase and methlyhistamine order in my wallet. If you're like me, it's impossible for me to drive in to a lab for testing following an episode (I'm sleeping once the shaking stops ) I need someone to transport and force me to get the tests done.

Lastly, I just wanted to share that I have learned so much through a masto support group that I have joined. The members share many informative medical research studies, etc. I've learned that elevated serum tryptase and methylhistamine levels are a possible indicator of anaphylaxsis, but they are not absolute. Researchers continue to search for a more reliable laboratory marker.

I hope your normal test is good news, but it may not tell the whole story

Julie

[EarthMother]

I had kept the collection jug and paperwork for months waiting for a true flushing incident -- which I had in abundance last year but that have diminished again over time.

On April 7th, I swiftly shifted into for lack of a better description a hyperadrenic stage I watched to see if there was any facial flushing along with the long flaires. There did not seem to be. But the intense pressure in my ears during the flair along with the other high agitation symptoms that seem to go hand in hand with my bad POTS episodes seemed to warrant at least a peak at the mast cell levels. So following one bad morning flair that had come on the heels of a facial burning episode I did the collection.

I don't do any H1 or H2, however despite my negative urine test I did ask my Doctor if I could try some atarax (hydroxyzine) to see if it might dampen the over stimulated nervous system when it goes into one of the long flairs. I had tried various benzos last year and they only seemed to compound the problem.

You are right though, a single negative test is just that. If the full on flushing comes back I may pursue further.

[ramakentesh]

The mast cell connection is an interesting one. i dont have facial flushing but I would definately fit the class known as the hyperadrenergic form of POTS.

I was reading recently that mast cell release has a significant role in migraine - and the causive agent in this is:

http://en.wikipedia.org/wiki/Calcitonin_gene-related_peptide

[edit] The Role of CGRP (Calcitonin gene related peptide) in Headache

Preclinical evidence suggests that during a migraine, activated primary sensory neurons (meningeal nociceptors)in the trigeminal ganglion release CGRP from their peripherally projecting nerve endings located within the meninges [17]. This CGRP then binds to and activates CGRP receptors located around meningeal vessels causing vasodilation, mast cell degranulation and plasma extravasation. [5] [17][18][19]. Human observations have further implicated the role of CGRP in the pathophysiology of migraine. Activation of primary sensory neurons in the trigeminal vascular system in humans can cause the release of CGRP. During some migraine attacks increased concentrations of CGRP can be found in both saliva and plasma drawn from the external jugular vein[5] [17][18][19]. Furthermore intravenous administration of alpha-CGRP is able to induce headache in individuals susceptible to migraine[20].

Now put this in the context of POTS. Some potsies have obvious mast cell elevation. But not all POTSIES do. Migraine is inmany ways connected to some extent with POTS.

if you read the information in this link, you will see that some researchers are now examinging whether inflammatory markers such as CGRP in the stomach are causing excess nitric oxide levels in that area, resulting in pooling and POTS or specifcally normal flow POTS with excessive reflex sympo excitation.

http://72.14.235.132/search?q=cache:466tR3...=clnk&gl=au

So if this peptide has a role in this form of POTS it could account for the degranulation of mast cells found in some POTS patients.

Been meaning to post this for a while - sorry for the delay.