u/Hyperfocus_Queen

Hi all! I’ve got SEVERE asthma and LPR (silent reflux), as well as EDS and POTS, and highly suspect I have MCAS, but I’m already taking most of the medication that they recommend for MCAS: Dupixent, montelukast, cetirizine, Omeprazole, famotidine. These are all for my asthma, acid reflux, and environmental allergies.

MCAS seems so overwhelming and confusing to me, as it has so many random symptoms (many of which I seem to have), plus I live in New England, and a lot of providers in the area don’t “believe“ in MCAS, so the odds of me being able to find a provider who would prescribe me cromolyn is pretty slim, even though I think it would be helpful, but it is truly the only thing that seems to make all of my random allergies make sense. I also feel like, because I’m already on so many of the meds that they typically prescribe for MCAS, it would be incredibly difficult for my symptoms to show up in earnest, particularly in any type of diagnostic test, which we all know are very difficult anyway. Has anyone ever been in this situation and been able to get a diagnosis? Also, how did you even put together all of the pieces? Especially with the comorbidities of EDS and POTS, it’s so hard to figure out which symptoms go with which diagnosis. Any advice is welcome!

So I have highly symptomatic hypermobility, regularly dislocate or sublux body parts, global pain, “complex”. I have a syringomyelia as well as occipital nerve pain, probably occipital nerve entrapment.

I can only work part-time, and I love my job so much so that has been very difficult for me, plus I can’t do many of the recreational activities I really love - tap dancing, ice-skating, roller coaster riding - and even the ones I still can do - crafting, Lego-ing - I have to do in moderation or else I will experience significant pain. I work so hard just to kind of have a normal life, and even then sometimes my body sabotages me.

I just started a new medication, topiramate, to help with my nerve pain and migraine-like symptoms, and one of the side effects is that it makes bubbly drinks taste flat and alters the taste of food. I already struggle with sensory issues related to food, but I haven’t noticed altered taste as much *yet*, but the immediate side effect was that my seltzer tastes flat. Anyone who knows me in real life knows that I am never without a seltzer in my hand. It is the one thing in my life that consistently brings me joy. It is how I get almost all of my hydration (don’t come at me, it hydrates just as well as water), but as soon as I took the first dose, my seltzer tasted flat. I’m devastated. Like, I’m so devastated that I’ve been crying off and on all day about it. I’ve read several medical sources that claim that this symptom can go away after several months, but from all of the patient accounts I’ve read online, for those who’ve experienced the side effect, it never goes away.

Am I being dramatic about this? My gut tells me I'm not, and that there are other medications that do similar things that I could try instead. Is it too much to ask that this one thing be preserved??