adigitalashley57

Wellbutrin was started primarily for my MCAD at my suggestion to the Doc just from the things that I had read. It's a dopamine and norepinephrine so I'm not sure how it makes sense other than maybe it controls the Norepinephrine?? Also Dopamine is the feel good nuerotransmitter so maybe that helps curb your idea of what pain is.....I'm not doc of course. But I've found it to be quite mild compared to the regular SSRI's and i was actually kind of scared of it because all the stuff saying it can cause anxiety etc. And of course more being on the Hyper side makes you more prone to anxiety. hope this helps!!

- It took me a while to find an antihistamine that worked for me without crazy side effects so don't give-up!! Also Mast Cells are sneaky little critters and anytime your antihistamines start to wear off they will come back with a vengeance thats why a lot of MCAD-ers multi-dose. Your symptoms sound Exactly like mine. With me, the heat more causes my to feel unwell, tachycardia, BP flucuations etc. I will get Hives if I'm too exposed to heat but really my Hives are spontaneous and come on more with an entire episode..

All the these posts are very interesting. I think the idea that MCAS patients are NOT supposed to be on Beta Blockers is of extreme importance to this subject. Also to comment on Sue1234 post I have noticed a significant but definitely slow improvement in symptoms now on the MCAS/ (formally MCAD) regime. I must say though that I am still trying to find the best H1 fit for myself as Allegra makes me super duper hyper and my heart race and Claritin puts me to sleep. I have found that I think so far Zrytec seems the most mellow of the name brand bunch. Also On the MCAS forums they say that Zrytec is good for palpitations- I don't know how based in actual truth this is so don't quote me on it but I think I've found it to be true for myself for sure. Also I should comment that Claritin helps me immensely with Tachycardia and that is something i noticed pretty immediately when one morning i was unable to take it until much later than i normally do and was really struggling with a racing HR. And then as soon as I took the Claritin it settled down immediately. This would actually make sense because in MCA, if your having an episode your body is filling up with too many Histamines, so think of it as the beginning of an allergic reaction. Well what happens in an allergic reaction? Are hearts start to race, are bodies flush, we get an over reaction of our sympathetic nervous-system. Also I have seen several quotes from Dr.Grubb's patients saying that they were told Wellbutrin was the AD of choice for this specific subtype. So again, I am not a medical doctor but I have found for myself so far it seems to be doing a pretty good job compared to the others i have tried. (which i have tried a bunch!) ex. Lexapro was too activating/ Celexa made my dysautonomia 20times worse/ Prozac worked for a bit but then made my Ehler-Danlos go crazy giving me hyper-extension of my muscle's. (which pretty much feels like you can flex your muscles until they snap!!!) The thing is I think most Doc's are afraid to try Wellbutrin on us because its so activating, so I'd love to know the science behind why this drug in particular has the reaction that it does in MCA patients who normally present with extreme hyper-sympathetic tone. Also finally, most people on the MCAS boards swear by Singulair and say that that was the game-changer for them in over all better control of symptoms. My Autonomic specialist, once he realized that i had Mast Cell Disorder he asked if I had ever tried Singulair, and I had not and wanted to do some research on the matter before i went down that road. I have a follow-up with the Doc this Monday so I think now that i have done my homework I might give it a try.

http://hyper.ahajour...t/45/3/385.full I wanted to start this thread because i feel like there is some real momentum in the medical autonomic community in regards to Mast Cell Disorders. I myself am an old hat at being diagnosed with just plain old Dysautonomia. But I recently have been pinned down as Mast Cell Dysautonomia/POTS. Actually, side note, at my autonomic specialist they say i have S.T.O.P. the opposite of pots because everything was slightly off or backwards to the normal patient. haha. But so, as everyone on here is different and all of our symptom profile's are similar but different, I would like to get a consensus on if there is anyone out there with a symptom profile more similar to mine. I think this would be so helpful for patients out there like me that suffered tremendously that could just hopefully click on this and maybe they will match up and a light bulb will go off for them!! Start of illness- Initial symptoms: Shortness of breath and chest tightness like an allergic reaction- constant and severe temperature deregulation body temp. of 95.9 96.5-severe hyper-adrenic feeling state. could not calm my body down felt like adrenaline coursing through me 24/7- very severe Chronic Hives. Covered in trunk area and arms. -severe Ears Flushing- severe. Chronic throat tickle. created this slight constant cough almost like a tic. -severe. heart beat irregular with palpitations and tachycardia -severe heat intolerance. couldn't even stand in a ray of sunlight- very severe Hypoglycemic feeling. -very severe. Only fainted/blacked-out once when I was a few months on Prozac trial and walked 3 blocks on a humid day. never had a low blood pressure reading, if anything it goes up upon standing. Which is also not comfortable.

Also another helpful link!!!! http://hyper.ahajournals.org/content/45/3/385.full

Hi I was diagnosed with Dysautonomia 3 years ago but was just recently diagnosed with MCA, and was diagnosed with EDS about a year ago by an orthopedic surgeon. My Mast cell activation disorder presents itself when i am having a dysautonomic episode. But apparently this is more common in the MCAS type as the mast cells are going out of control making for a cascade of dysautonomic symptoms. I have just started the antihistamine's and have tried to start Cromolyn/Gastrocrom a few times now and just cant tolerate it. But something I have noticed my heart stops racing immediately after i take a Claritin or Allegra or any of the H2 Antihistamines. Heres an interesting link for all of you MCAD-ers out there. I'd be interested in starting a new thread on this and maybe we can learn more about this more rare version. My autonomic specialist said to me when he witnessed my ear flushing and chronic hives, "I'm sure you read the Website Forums and you just don't quite match but to all of the POTS patients you are reading about..." and I swear he took the thoughts right out of my mind with that comment. Us MCAD-ers DO NOT match up at all to basic POTS. And if treated improperly and made much more sick. i.e. people with MCAD are NOT supposed to be on Beta Blockers. If anyone wants more info pm me, but I might start a topic to see if other people have some good MCAS stories. ashley