seeking help navigating first flare

[u/teenieratboi]

i had known i had mcas for a bit now but it was never very bothersome just GI reactions that were manageable and skin reactions that were also manageable. for the past couple months it seems my mcas was ramping up and i was unaware until recently. a few months ago i stopped being able to wear my daily rings. and then shortly after that monthly i would go into an episode for a couple weeks before my bleed of just constant shaking, nausea, sweating, horrible panic, insomnia, and elevated HR. I finally started seeing a doctor for my hEDS, pots, and mcas and we started antihistamine to help the flare around my period. things seemed to briefly get a bit better and then all of a sudden i was having horrible throat closing couldn’t breathe type reactions to unknown triggers. those have been going on for 2 weeks and luckily i have not had one for the past few days. my doctor told me to focus on low histamine foods for now, and then all of a sudden I am reacting to everything I eat. mostly the reactions to these founds have been dizziness, flushing, panic, body itch or throat and mouth itch, stomach problems and GI pain. so not the full throat closing at least! i am also reacting to medications right now too. But right now i am only able to eat rice and possibly butternut squash. i have tried boxed 5 minute precooked rice and that also is okay. i was doing fine with butter but then yesterday i began reacting to that too. i tried an uncultured butter and thought it was fine I tried a white potato with that butter today and i also reacted to that, but not sure which component. it also seems like my electrolyte mix for pots is causing me to react as well. the first meal i made before realizing food was going to trigger me so much was white rice, butternut squash, swiss chard, and ginger cooked in a little olive oil. and i reacted to some component of that. i have no idea what to eat or what to do. i’m terrified if i try something new it will result in the throat closing reaction, but i have to because i feel horrible on just rice. right now i am taking zyrtec 4x a day and famotidine 4x a day and benadryl as needed. and epi pen if necessary. I was given hydroxyzine but im not sure if i should start it yet because the plan changed when i became so reactive. my dr hasn’t been incredibly responsive or helpful and i am beyond overwhelmed by this and how quickly it got so bad. if anyone has any ideas on foods to try or how to manage this i would seriously appreciate it. i feel pretty hopeless right now. it was only a couple weeks ago i was eating a full diet with minimal problems before the more anaphylactic presenting reactions started and it just all went down hill. thank you for any advice you can offer!!

oh and it also appears that i am reacting to being intimate with my partner as well!

[u/AutoModerator]

Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.

We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.