Hey, folks, great to get to know everyone, I read just about every post here. Anyone have any intel on headache and MCTD? Mine is unilateral, involves left eye radiating to right ear, and is very odd in character-- an extremely unpleasant, abrasive sensation that's almost impossible to describe. The most recent change for me is really ghastly tinnitus-- two separate tones, one steady and high pitched, the other lower and oscillating. Etiology of headaches generally, and particularly w/ MCTD, seems insanely complicated... everything from thromboses and physical inflammatory pathologies that mere mortals might attempt to comprehend, but once we get into CGRP, cytokines, and neuron-glia crosstalk, well... let's just say, trying to make any sense out of that does not improve my headache! The neurologist they referred me to treats migraine as a standalone symptom, and diagnosed me with medication overuse headache, which seems totally depraved, given that I can have as many as two consecutive headache free days, I never get morning headaches when medication wears off... her attitude is that my migraine should just get better on its own as you get older, and the best thing to do is withdraw medication completely, which she wanted me to do on a taper with her. Then, they just try medications sort of randomly one by one-- uh, no thanks, yours truly has had some truly awful and bizarre reactions to medications that are really unpredictable. Instead, I did stop medication abruptly, had zero rebound headache for two days and zero withdrawal symptoms at any time, though headache crept back in on day three and is now brutal on day four (too much sun and exercise, probably.) Fortunately, I managed to get a referral to a much better neurologist for mid November, and I want to get a workup from audiology and opthalmology.

It's so crazy. Every time I have a few days without headache, I will gaslight myself: "Maybe you made it all up, maybe you just want opiates" but then it's like, I've gone 80 hours without them and I'm laughing and playing with my wife and dog, and have no craving for anything and anyone whose known me more than 15 minutes knows I'm not a dope fiend. My friends who are in recovery, and who WERE dope fiends, and my colleagues who work in recovery, all think I'm at nearly zero risk for addiction. Then I'll think, "Maybe the headaches are gone for good! Maybe it's finally over!" But it never seems to be. Thanks for your patience with the long rant.

Does any of this sound familiar? Anyone have symptoms like this, or any thoughts about pathogenesis or any non-narcotic, non serotininergic treatments that work? I've had a little luck with vitamin B2, but the benefits seem ephemeral-- works for a day or two when I first try it, often really well, but benefits then poop out. SSRIs and SNRIs are way too dangerous for me. Many thanks!