New Member -- Questions About Nyc Doctors And Mcad Flushing

[Sunshine88]

Hello everyone,

I've been reading through the archives for a couple weeks and really appreciate all the great information here. I recently received a possible diagnosis of POTS from a primary care physician, who suggested I see a specialist. (He ran all the tests of exclusion, and my heart rate and symptoms fit the criteria, but I haven't had a tilt table test.) If it is POTS it would make a ton of sense, going all the way back to my history of vasovagal syncope as a very young child through my teenage years. I don't faint anymore, because I can recognize the signs to sit/lie down. (Which is occasionally embarrassing: in line at an ice cream shop, suddenly needing to sit and grabbing the only free chair in the place, at a table with a surprised mom and two kids ("sorry... I'll just be a minute") and then realizing it wasn't cutting it and stumbling outside to lie down on the grass in a daze. I don't want to know what everyone thought!)

My symptoms were chalked up to depression for the last 15+ years, which is understandable since I have had recurring bouts of severe depression (which respond best to stimulant medications). The past four years have been difficult, though, as the fatigue has never fully gone away even when my mood has improved, which got me a diagnosis of treatment resistant depression and a several-year tour through all the treatments imaginable, including MAOIs, ketamine infusions, and prescription dextromethorphan. It's only recently that we finally teased out that yes, there are probably two kinds of tired at play here, and we've fixed the depression kind. Now I need to find someone to help with the POTS kind.

I'm near NYC and have lousy insurance for this type of visit, so as much as possible I'd like to find the right person on the first try. I don't think my POTS (if that's what it is) is extremely severe, at least not compared to much of what I've been reading here. I haven't been able to work full time in several years, but if I manage my schedule just right I can get by with part time hours that are enough to (just) pay the bills. Mostly I need to schedule in alternate days off and a few hours down time in the middle of the day when I can be horizontal and quiet. I've had some success with fluids, salt, and compression socks recently, but not as much as I'd like.

I was very active before this became a more pronounced problem in the past several years, and I've put on 40 lbs from a combination of medications and exercise intolerance. I used to run 4-5 miles in the evening several times a week, but now I can only do a mix of walking with 1-2 minutes slow jogging, which puts my HR above 200. (At 31, my supposed max is 189.) I'm worried a doctor might say that I'm deconditioned and that I just need to get in shape, but I've been trying very hard (I've committed to Couch-to-5K several times, but I just can't get past a couple minutes of running, no matter the repetitions over the weeks... which makes sense now that I know my heart rate is in the "workout" zone just lacing up my running sneakers.) I walk and bike as my only means of transportation, so I do have strong leg muscles, but I have blood pooling in my feet regardless. I'm hoping to find a doctor who will realize that deconditioning and weight gain came because of the fatigue, and not the other way around.

Since reading this site, I'm curious whether my flushing and allergy symptoms might point at MCAD. I am very sensitive to skin irritants and have allergic reactions to things, but the allergy tests have always come back negative. (They gave me an epi anyway, given the reactions I'd had.) If you'll forgive the ugliness of these photos (and I never really understood the effectiveness of creating anonymity with a rectangle over eyes, but I added it anyway), I wonder if this type of flushing looks familiar to MCAD folks. I turn bright red, sweat excessively, and get a runny nose while exercising, and continue sweating usually for 60-90 min after. The flush gradually goes away by two hours later. It's VERY red when I'm actually exercising, and always splotchy. I also flush after eating sometimes, and when embarrassed or hot. I'm not sure how to tell "normal" flushing from MCAD flushing, though... maybe this is nothing out of the ordinary:

30 min post-exercise: http://smg.photobucket.com/user/porticas/media/30minpostexercise3anon_zps448a7662.png.html

30 min post-exercise:

http://smg.photobucket.com/user/porticas/media/30minpostexercise2anon_zpsfdbf36cf.png.html

60 min post-exercise (still sweating):

http://smg.photobucket.com/user/porticas/media/60minpostexercise1anon_zps38c6eeaf.png.html

90 min post-exercise (not sweating, almost back to normal color):

http://smg.photobucket.com/user/porticas/media/90minpostexerciseanon_zpsa615b771.png.html

I have a list of NYC doctors I've culled from the archives and site, but I wonder if anyone has recommendations specific for my situation. I imagine I'm not severe enough to see Dr. Weimer, for example, but I wonder if there's someone who is kind and sympathetic, and knows their stuff about flushing/MCAD, if that seems like it might be related.

Thank you for reading! I'm sure I'll have more questions, but this is enough for now. I appreciate any help!

[Chaos]

Hi and Welcome! Sorry you're having such issues.

A few thoughts that arose when reading your post. I remember one of our former members who had MCAD explaining that MCAD was a diagnosis that explained allergic type reactions in people who didn't have traditional allergy testing come back positive. She said you could have both traditional allergies and MCAD reactions but it was a particularly helpful diagnosis for those (like you) you didn't have traditional allergy testing come back positive but still clearly had allergic type reactions.

Your flushing certainly looks like it is worth having checked out by a MCAD knowledgeable physician. Unfortunately I'm not in that part of the country so can't recommend first-hand physicians who are good over there. I'm sure others on here can and will though.

Do you have hypermobility as well? POTS/MCAD and hypermobility seem to be a triad that occurs with some frequency although they certainly don't always go together.

Good luck in your search for answers!

[Sunshine88]

Do you have hypermobility as well? POTS/MCAD and hypermobility seem to be a triad that occurs with some frequency although they certainly don't always go together.

Good luck in your search for answers!

Thanks for the reply! I don't have any hypermobility, or at least not that I know of. (That's something I'd definitely know, right? I looked up photos and I don't think my joints do anything too unusual.)

What you say about negative allergy testing makes sense. The last time I had everything tested on my back, I told the allergist to please use gentle tape, as I'm very sensitive to adhesives. She assured me that they used the most hypoallergenic tape there was, and that nobody ever reacted to it. A couple days later when she pulled the test off my back, I hadn't reacted to a single thing... except the tape.

I've been tested a couple times now after having fairly robust reactions (eyes swelling shut plus some wheezing, but nothing life-threatening) but with the negative tests, it's been hard to pin down what's the culprit. I sometimes think that it takes a combination of two things to set me off: for example, a little alcohol is fine, and shellfish are seemingly okay, but I've been violently ill the two times I had a glass of wine together with shellfish. I also get the odd single hive popping up for no reason a few times a week, but it usually goes away in a few hours.

I might take an antihistamine before my next run and see if that helps the flushing, which might provide some clues.

Thanks again.

[davecom]

Hi Sunshine88,

I'm in New York so I'll message you privately about some doctors; however I would just add to the discussion by saying you may want to consider starting your reconditioning with recumbant exercise (exercise biking, rowing machine, etc) before getting back into running. It seems to be helpful for a lot of POTS people.

[Sunshine88]

Thanks for the advice, Davecom. I'd like to try rowing, but I don't currently have a gym membership or machine of my own. Same for recumbent biking, though I (regular) bike a few miles almost daily to get from place to place (which somehow makes it not "exercise" in my mind, even though I get flushed and sweaty and gross regardless). It's a good point, though. If I don't have any improvement with running soon, I think I'll look into gyms nearby so I can try rowing or recumbent biking.

[Chaos]

I remember my allergist describing a weird reaction he'd seen in one of his patients where she had a wheat allergy but it was only activated by exercise. So I think there is something to the idea that there sometimes needs to be two or three "strikes" to set some of these things off.

I have had that single hive thing happen at times as well. Along with spontaneous angioaedema, patchy rashes popping up all over for no apparent reason etc so seems like MCAD would be worth checking out for you.

[blueskies]

Hi,

I'm allergic to a number of things. Some allergies are very serious and some not so much. I know what most of my allergies are but not all. I too have been given an epipen. I also take anti-histamine 'cyproheptadine' when needed. I'm using it now as I have quite a few hives so I have reacted to something. It's only a H1 blocker. I have problems with H2 blockers -- they make my severe constipation problems worse. I am now reacting to zylocaine so next trip to the dentist to have work done will mean taking 25 mgs of cortisone the day before, 50mgs on the day of the procedure, and 25mgs the day after as well as crossing my fingers. There's plenty of info here on mcad. I just have not been to successful with the usual meds such as singulair and cromoglycate.

When I do any activity I go bright red and sweat like crazy. But I can do that sitting on the couch, too. Sometimes certain foods will cause it.

I just wanted to say that I doubt that you are deconditioned. Given that you bike and walk for transport I would think you would be in pretty good condition -- just not as fit as you were when you could run. Perhaps it's that you are used to being extremely fit from running and are negating the fitness you'd get from biking and walking. Just a thought.

blue

[Sunshine88]

Thanks, Blue. I should clarify that I didn't mean I bike *everywhere* no matter how far. But I don't have a car and live in a suburb, so if its a couple miles I walk, 5-6 miles I bike, and if it's much more than that I usually can take a bus or train. I think you're probably on track that I'm not entirely deconditioned: it's more that exertion really takes it out of me more than it used to, and yeah, I'm not nearly as fit as I once was (and a bit heavier!). Even walking and biking around town really wears me out, and it takes so long to recover afterward.

The more I read about MCAD in the archives, the more convinced I get. And what you say about going bright red and sweating with activity, or sometimes without... bingo!

Thanks for the response. I think I'm being pointed in a productive direction!