Medical mystery


All of a sudden, my migraines have gotten much more frequent (six in the past month or so) and two of them occurred in the middle of the night. This morning, I woke up, dropped something on the floor, bent to pick it up and there it was: another migraine aura. Shit. And even though it’s gone now, I seem to have a bit of double vision after this one, which is a pain in the ass and has never happened before.

The kind of migraines I get are relatively rare (opthalmic migraines, with no head pain — although oddly, I had pain with the one last week) and so far, I haven’t found a doctor who specializes in them. I’m kind of tired of talking to doctors who only have the vaguest idea what I’m describing — “Talking Out My Ass” syndrome, in which they’re spitballing, rather than admit they don’t know. I read everything I can find on the topic and always know more than they do.

My big concern, as always, is that I’ve gone 20+ years with untreated Lyme disease, which is said to spread into the brain and heart. I did find a dedicated Lyme program at Johns Hopkins that just opened, and while I don’t fit the exact profile (they’re looking for relapsing Lyme patients who have been treated and I never have), maybe I can see someone who knows something.

Assuming my insurance will cover out-of-state consultation, that is.

8 thoughts on “Medical mystery

  1. For what it’s worth, lists a long-term study, that doesn’t say anything you don’t already know but might be useful to bring to doctors who’ve never heard of it. The link is just to an abstract, and I can’t find the complete article. Elsevier is a real piker like that.

    I don’t see anything in the first couple of screens’ worth of article results that suggest a connection to Lyme’s, but the article does say migraines can be connected to “any acute episodic neurological disorder” which I think fairly describes some of the downstream Lyme’s consequences.

    What I’ve always found is that the more intelligent the doctor, the more willing they are to *listen* to you. Which means Johns Hopkins may well be a good bet for getting something useful accomplished.

  2. I can’t get high to deal with this, I have to stay functional. The migraine itself only lasts twenty minutes or so and I’m not in pain. I’m more concerned about it as a manifestation of some other problem.

  3. That picture ^ is a pretty good representation of what I see after I eat anything that contains msg.
    I hope you figure out what’s causing yours.

  4. My partner gets ocular migraines sometimes, fairly rarely. His ophthalmologist seems to know all about them, says they just happen to some people, that they don’t (by themselves) progress to anything worse or indicate some dread underlying disease, and that he didn’t need to worry about them. If they happen, he’s supposed to stop what he’s doing, and lie back with a sleep shade on until it’s settled down.

    Fwiw. Just one doc’s take on it.

  5. Perhaps not smoking/vaping (getting high) but taking regular pills with the active ingredient? From the same article link above:
    “Eventually Edie found a Doctor willing to prescribe Marinol, a form of oral cannabis, and the migraine attacks ceased.”

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