After approximately a year and a half of very problematic symptoms beginning in 2010 (and a lifetime history of lesser impairing and odd symptoms), I was diagnosed with hyperadrenergic POTS at Mayo - Rochester in Nov '11. Since then, treatment has proved mostly refractory to the many medications and other treatments my local cardiologist has prescribed based on, and in addition to, the physicians at Mayo's recommendations and other treatment literature.

In addition to a very large number of POTS symptoms, I also have a handful of symptoms that are seemingly unrelated to POTS (e.g., chronic yeast infection, hypercholesterolemia, sound sensitivity, wheezing and other allergy symptoms). From the scientific literature I've been reading on MCAS, I believe my problems may be related to it and that the POTS presentation is a result of MCAS. As such, I requested a 24h methylhistamine test and baseline/flushing episode tryptase test from an allergist. My methylhistamine test was reported to be "normal," but I wasn't given the numbers from it, and my tryptase was also "normal"(via my nurse's report) at 3ng and 4ng, respectively.

I started taking a combo of H1 and H2 blockers a couple weeks ago and felt much better for several days. However, that response has diminished markedly (which is another aspect of my clinical presentation; several times medications have appeared to work quite well for 3-4 days, then lose effectiveness and never regain it). However, at times, it seems that the antihistamines are still really helpful.

Last week, I started a low histamine diet and have made some striking discoveries - I seem to react to foods. Big time.

I've been in touch with Dr Afrin and he's emailed a "primer" on testing for MCAS to my local allergist. She's currently reviewing it and consulting with other docs in her practice and is going to get back to me when she understands things a bit better. Honestly, I feel like if she can't handle the testing (which would certainly be understandable), I am ready to shell out some fat cash and travel from OK to SC to get a better handle on this stuff.

I have some specific questions, so I suppose I should do a few posts in appropriate areas now.

BTW, I have been reading posts on this site off and on for months now, thinking I might have some MCA issues going on. Thank you to everyone who shares knowledge and support here! This site is a wealth of information that is not readily available anywhere else. I am so appreciative to have this resource available.

Ana,

Thank you for your reply! You have actually helped me a ton and you don't even know it. ;) I've been a member of dinet for a long time now and have followed your posts there and here re:MCAS with great interest.

For a long time, I thought my sx didn't fit with MCAS and didn't pursue it. However, after finally accruing some additional sx that could be indicative of MCA and pretty much exhausting all the POTS meds, I started to reconsider it. Your posts about MCA have helped provide an impetus to learn more about it, myself, as well. Thank you for sharing about what you have learned. It has helped me immensely. :)

Just contacted my allergist today to see what she thought of Afrin's primer. Unfortunately, but understandably, she does not feel equipped to do the testing OR provide ongoing treatment for me.

I immediately called Afrin's office to schedule an appt and am eagerly waiting on a return phone call tomorrow or Mon to make the appt.

Now, I need to get in touch with my internist to see whether she'll feel comfortable managing my treatment locally. If she doesn't, I'm not sure who to contact.

Recently, I called doctors' offices, told them that I have a rare immune system disorder, and asked if there's a doctor in the office who's brave enough to take me on!     LOL.

Hey Pepper, I'm a patient of Dr Afrin and love, love, love him! Don't be surprised if when you get your appt it will be a couple months out. They don't mind you calling (daily if you want) for cancellations you might be able to take. If you look under the 'mast cell doctors' topics I posted my experience with travels and appt with Dr Afrin.
Crossing my fingers for you

I got my appt scheduled with Dr Afrin! I'll be seeing him on Aug 13. I'm so ready!