For most of my life, I’ve suffered headaches and migraines. They got worse in my twenties and thirties, beginning to have floating stars and became so debilitating I went to the ER once (do not recommend—the only med they gave me left me in the same pain, but unable to talk about it anymore).
I would get a migraine two or three times a week that would leave me retreating to a dark, silent room, unable to deal with kids or work or anything. Sometimes the migraine would last for more than a week, so that sleep didn’t help and I’d wake up worse off than when I went to bed—if I could sleep at all. I couldn’t even read a book, which was worse than regular sickness. Normal migraine medications often didn’t help much, or they made it impossible to sleep or made me so nauseous and jittery that they were worse than the migraine.
Since I got diagnosed with autism in 2017, I have had a dramatic decrease in the number of headaches I suffer regularly, to the point that I sometimes forget that I should keep medication for migraines around for the odd, once or twice a year situation that comes up. I believe this is entirely due to my changed behavior since diagnosis. Now that I know who I actually am, I have stopped forcing myself into so many social situations on a regular basis. (Also the pandemic helped enormously with my migraines since I stayed home all the time.)
I used to believe that I was a very social person. It’s true that I have high empathy and I like people, but the truth is that I like intense, one-on-one conversations with others, rarely larger groups. More than five is a severe strain on my autism and causes (Surprise! Surprise!) migraines.
I’ve also realized that noise, music, and lights tend to trigger migraines. Not coincidentally, those three are all things that happen when I force myself to stay in a neurotypical situation. Since I’ve figured out the triggers to avoid, a series of problems have fallen away. I no longer struggle with staying in hotel rooms now that I know I need a face mask and earplugs to sleep (and no roommates). I wish I’d figured this all out earlier, but I’m passing it along to anyone else who might need to hear it.
Although I've been lucky enough to have very few headaches and none that go into the migraine range, I do hold my tension in my neck and shoulders. I wish that learning more about being autistic and respecting my needs for quiet, rest, alone time and limited social engagement reduced that tension. But I'm in almost constant neck and shoulder pain. Fortunately, yoga and frequent stretching keep me from totally seizing up. However, I wonder if I'd known and understood my neurodivergence as a naturally-occurring human type, would I have not developed and held so much stress in these areas of my body?