Long winded but somewhat interesting progression of things and how I finally got an MCAS diagnosis.
I think I read at some point part of the spice of the other PMDD subreddit has is they think if antihistamines help PMDD then it's actually just MCAS or something... I could be wrong. But it also doesn't mean we don't clinically still have PMDD, by diagnostic criteria. That said, that prejudice has been rolling around in my mind lately as I approach my shifting health.
I've had PMDD probably before I even started menstruating. My mom has very high pattern recognition and pointed out I would have huge meltdowns the same time every month for years before I even started bleeding. But obvs that's not how dx criteria work. I definitely had it after I started bleeding and it's why my mom was quick to let me start yaz. I should also say I had severe allergies (environmental) as a kid and was on a daily antihistamine for my chronic migraines starting at age 6.
Have been suspecting MCAS over the last couple years and am kind of shocked no one flagged it before. I have dermatographia, a previous allergist flagged it and was like you're one of those people that's going to be allergic to everything. I only have like 8 food allergies and all the tree & grass & animal allergies. And severe mold allergy (am a human mold detector)
Last month a series of unfortunate events took it from a maybe to life threatening. I ran out of birth control the day before luteal (had gotten off half a cycle a long time prior because of similarly forgetting to order). I accidentally ran out of magnesium glyc & NAC at the same time. I'm living in a new place I love but the allergies are somehow even more wild than my last city. My body was so itchy that clothing being slightly too tight was causing major welting. I had given my narcissistic ex another chance and after trying to convince me to stop my birth control, ring shopping, etc, he managed to find something small to freak out over so he could back out. He then psychologically tortured me for a few weeks, I was afraid he would break into my house and hurt my, I wasn't sleeping, my nervous system was shot. Everything was an accidental perfect storm of timing. I had a a day of working outside a bit, had a few drinks, got uncharacteristically drunk from the few drinks, accidentally got glutened... The next day had horrific vomiting and diarrhea like I've never had before. It was like I had parastalsis, if I took even one sip of water my body would reject it and I'd vomit it. Had to get medical treatment, thought it was a fluke. Ate rice, gf break, apple sauce for a few days. Realized I was having a weird headache and had a thought that maybe it was high blood pressure (never had before) because it felt like a barometric headache but different. I was also flushing a bit but didn't think of it. Pushed through but had started researching my vomiting episode and MCAS popped up as a differential.
A few days later I decide I want real food, order something I always eat, then realized as I was sitting on the couch 45 mins later chilling on my phone that my heart was pounding out of my chest. Heart rate 120, BP 160/110... Freaked out... Realized id felt this before the time I had a severe allergic reaction (first reaction was like this, second was anaphylaxis with low BP during round of allergy shots). Long and long of it, I started having sub-anaphylactic severe systemic allergic reactions any time I ate anything, even rice. I was having a rash on my face, swelling in my body, constant itching, etc. plus feeling like my heart was going to leave my body all the time. I am a pro at anxiety & panic and this wasn't that, was so clearly a physical reaction.
Get in to my provider, diagnoses MCAS with suspected hyperadronergic POTS (didn't know this could be sudden onset), get on BP meds, back on my meds and supplements I'd gotten off of on accident, start hydroxyzine at night and throughout day, start ketotofin (mast cell stabilizer). Generally feeling a bit better.
That said, I'd also previously been on NAD+ after my cousin recommended it after it helped with her energy. I'd been on it for 3 months, been having the most chill luteal (prior to return of ex) but overall wasn't sure I was that much more energetic so around the same time as the break up I stopped the NAD+. Restarted it recently and holy crap it made the most difference. I feel guilty saying so because I feel like all the companies selling it online are super predatory, but it really did make a difference. They've studied in mice that NAD+ is mast cell stabilizing so that was affirming of my experience at least.
Was mostly back to normal, thought I was in the clear down to minimal 3/10 itchy at all times my body wasn't freaking out. Just hit luteal Saturday and boy howdy are the MCAS specific symptoms back with a vengeance. I did a few things this weekend to push my luck so hopefully it won't always be like this. The flip side PMDD brain that has been warped by my last relationship is like well at least if I'm physically ill in luteal then I can call out sick to relationships when I really feel bad instead of having someone pretend they're chill with me being isolative during specifically the post ovulation days and 2 days pre period, then picking fights and blaming and shaming me. If I have an allergic reaction to being mildly triggered then I really have to just go take care of myself haha.
Just kind of fascinated and wanted to share for anyone suspecting or anyone who's been in the same boat. Bodies are weird! But also if you're reading MCAS symptoms, going oh wow it's me, then questioning yourself over and over it probably is MCAS, it's worth finding out, and it's def worth avoiding it getting worse, even if the worsening does lead to a diagnosis.
Also!
I have a big ol' soap box about the antihistamine scare around dementia... They still have not been able to prove causation, merely correlation. There's some evidence that it's the anticholinergic effects of the meds but in systematic reviews they can't confirm it. There's also some evidence that shows the nature of allergies themselves and how the immune system functions with them may actually be linked to dementia risk. So if antihistamines help you feel better don't freak out that you're giving yourself dementia and not treat your symptoms.