We have had issues with migraines since 6th grade. Our mom and both our sisters get them too so it’s clearly largely genetic, but since system discovery we’ve wondered how much ours are tied to our DID and switches. We have a neurologist for them, but nothing really seems to help except caffeine and our medication which is part caffeine. We don’t have an official DID diagnosis, we do discuss it with our therapist and psychiatrist, so we don’t feel comfortable telling other doctors unless it’s necessary. On top of that for all we know it wouldn’t help at all because it may not change our treatment. I really wish there was a way to know what is our genetic migraines and what is our DID migraines, we also recently developed POTS which can worsen our headaches and migraines.
Our baseline, or what is “normal” for us, is a mild headache. We have not gone without our head hurting at all in nearly a decade. It’s hard to know when to take our migraine meds because we can’t just take them constantly (The dissociation doesn’t help with remembering to either). We’re constantly in a variety of pain, so we’re constantly disassociating from it, which makes it hard to ask for help and get it treated. We’re so used to our pain we can’t fathom what it would be like without it, which I think you all will relate to whether mental or physical. I just want a doctor who knows what they’re doing and maybe knows how to ask the right questions so we can remember what’s wrong, but that feels like a lot to ask since we need more that mentally and physically able people.
I’m lucky that the headaches I get these days aren’t nearly as bad as when I was in my 20s. I still get switching headaches sometimes, though, so I feel your pain to a degree. I don’t have any great solution for it; I just wanted to let you know you’re not alone and thank you for posting. :-).