Penis-Head, Non-Sexist Doctors, and Trigeminal Autonomic Cephalgia!!!

So, I went to Columbia Headache Center, spent several hours with a headache specialist, and this was my diagnosis! Not penis-head — that was Luis’s diagnosis. I had my films with me from a former brain MRI I’d had that my neurologist had given me to take to the headache specialist, and after looking at the slides, he told me I could keep them. So, since I go to the dance studio on my way home, I had the films with me, and when Luis asked me what was in the huge shiny silvery envelope marked “images” and I told him “my brain,” he said, “cool, I’ve never seen one of those before. Let’s see!” So there we stood in the middle of the studio floor, under the chandelier, looking at a bunch of small images of my brain from various viewpoints. In one of the shots that looked like it was taken directly above my head, Luis found an object that he thought was shaped exactly like a penis (only Luis!). I couldn’t completely make it out, but Luis obviously has much more experience with male genitalia than I do, so I believed him. He yelled, “now we know what’s on YOUR brain, Tonya!” He also found some shapes resembling grass and weeds… So, my diagnosis from the head pain neurologist was “Trigeminal Autonomic Cephalgia,” and my diagnosis from my gay dance teacher was “Penis Brain.”

Anyway, I’m very excited about my diagnosis — my official one that is! After patiently listening to me go on and on and on about my latest headache episode, the doc said right off I have this rare neurological disorder, so rare that not a whole lot is known about it other than certain meds work on it and certain ones don’t. And apparently it’s not dangerous, like stroke or aneuyrism-related, thank God! It’s just one of those things, where the person gets certain kinds of pain — in my case pain in one temple and side of my head and in my sinus cavities on that same side– as well as sinusitis-like conditions — congested nose, ear, and very watery eye and swollen lid. But there really isn’t a sinus condition, which is why the antibiotics the doctor had given me to kill the sinus and eye infections I didn’t really have, and all the decongestants, did nothing. And since it wasn’t a migraine, that is why the migraine meds didn’t work either. So, now I’m armed with an entirely new arsenal of meds for the next one. One even comes in the form of a shot! He taught me how to administer the shot myself. I have to stab myself the leg hard and fast. It kind of made me queasy thinking about it, but I KNOW the next time I have that severe of pain, I’m not gonna be thinking about being queasy! Because the pain and sinusitis-like conditions are brought on simply by the way the brain is structured, it’s NOT about caffeine, chocolate, MSG, cheese, stress, lack of sleep, or estrogen. It is just because it is, basically. So the reason I’m so excited about being diagnosed with a rare, scary-sounding neurological disorder? For one, I feel unique — how many people can say they have Trigeminal Autonomic Cephalgia?!? And, two, and most important, is that I feel vindicated! I KNEW IT WASN’T A MIGRAINE; I KNEW IT WASN’T A MIGRAINE; I KNEW IT WASN’T A MIGRAINE!!! So, NO ONE can tell to just deal with it until my period’s over, like a woman should, lie down with a cold rag on my head, not take on so much so as to stress myself out, or even just that I injest too much coffee, wine and chocolate. The doctor laughed when I screamed all this out at him. Even if they were migraines, he assured me, I was regurgitating the old decrepit school of thought — telling a woman she should take it easy lest she ‘compromise her delicate composition’ etc. If they were migraines, he’d give me meds responsive to migraines, not tell me I shouldn’t try to be a lawyer, writer and dancer at once. So, my doctor’s COOL! Because, honestly, another general pract I’d seen for these (yet another time my regular primary doc was out on vacation) told me exactly that: I was doing far too much and needed calm. And I remember him focusing on my job too… “You don’t really like being a lawyer, do you?”, as if such a profession was enough to mentally destroy any poor girl, or as if, even if I did hate it, that had anything to do with the fact that my eye was the size of a golfball, I couldn’t breathe out of one nostril or hear out of one ear, and it felt like someone was stabbing me repeatedly on the side of my head. Who would think that sounded even mildly like a migraine??? But of course they were migraines because I’m a female of child-bearing age, and that’s the kind of headache females of child-bearing age get. That doctor was near retirement (and now is, thankfully); my new head pain specialist was pretty young — late 30’s. And the fact he wasn’t far out of med school worked in my favor too — he remarked when he diagnosed me that he could barely remember this weird disorder from his textbooks; a doctor who’d been practicing longer, and never seen a patient with it, might not have. Ugh. I don’t give a damn if I sound ageist, but if older means too sexist to give a proper diagnosis and proper medical treatments, they need to change the way they think or get out of the profession.

Okay, off to bed. So I can get up early for my trip tomorrow morning to Martha’s Vineyard for beach and ballet!!

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