Looking for some opinions from this ultra-tough MCAS community.
Since I was a kid (I’m 37 now), I have been struggling with episodes of intense symptoms such as vertigo, difficulty speaking, strangled throat feeling, dropping sensation, sensitivity to light and sound (I feel it in my stomach), nausea, facial drooping and tingling, trembling, heart racing, sweating, excessive urination, and pre-syncope type sensations. Honestly, it feels like I could collapse or die.
After being treated unsuccessfully for panic disorder, I decided to switch doctors and look for a more physiological explanation.
My new doctor is referring me to a migraine specialist. I am so excited to have a new direction to explore, but I was somewhat surprised, since some of my experience is very different from the people I know who suffer migraines. Some examples...
Most notably, I don't have a headache. My neck at the base of my skull usually hurts before and/or after, but it's not the incredible pain like migraine sufferers describe. More like a dull, pulsing ache. Annoying, even nauseating, but not debilitating.
My symptoms come on FAST. Once triggered, my symptom cascade starts immediately. For example, the first signs of hunger, flashing lights or glare, pressure changes (even an elevator ride can do it, and every airplane ascent is instant hell), and the first sip of caffeine or alcohol will start the symptoms within minutes or even seconds. I was always under the impression that migraines develop from triggers over the course of hours or days.
Migraine suffers I know are completely incapacitated. For me, I want to MOVE. Sitting is almost unbearable, laying down helps some, but walking or even lightly jogging feels a bit more soothing, even though I feel like I'll pass out. I feel like moving will KEEP ME from passing out. This really doesn't seem to fit.
Caffeine is my #1 trigger. I thought caffeine helps people with migraine. Reading through Reddit, it seems like sometimes too much caffeine is a trigger. However, even a sip of coffee can send me into misery.
Duration. Though sometimes I have days-long periods of recurring episodes, most of these episodes end after only 40 to 60 minutes. Afterwards I’m just exhausted, but comfortable. From the people I know, migraines last much longer than 30 minutes, like at least 4 hours.
Crying terminates it. I can't force it, but if I am so miserable that I have a good cry, this is literally the only thing that sometimes ends it other than time. This is also contrary to a lot of what I read, where crying is usually a major trigger for migraine.
I never throw up. But belching (which I do a lot of during an attack) brings momentary relief. Maybe related?
I will, of course, take my doctor's lead and see the migraine doctor, still months from now. I just want to know whether to ask about this theory as well since it might match up better. Any insights you can offer I am very grateful for, as I have a flight coming up which is my absolute worst trigger (always hits hard immediately during ascent, sometimes descent).
THANK YOU, you mighty crew! 💜