I had my first dance lesson last night since my headache episode! I’m still a tiny bit hazy from the whole ordeal, but I’m so so SO glad to be dancing again! And, since one of the group classes was cancelled, one of the many former ballet dancers at my studio who’s training to teach ballroom was free to help teach me how to do my dream trick: the hands-free fish. A picture of real dancers (ie: Marcelo Gomes! and Gillian Murphy from ABT) is here. Oooh, but it’s soooooooooooo unimaginably hard! I couldn’t do it, try as I did. Your back needs to be so incredibly strong. It makes me realize how tough ballerinas are; elegant and graceful as they seem, their backs and legs are made of steel! I need to hook my leg around Luis’s back and hold myself onto him with that leg only. If I let my back collapse, I will fall to the floor. And it doesn’t look like it from the picture or when you see people perform it, but it’s so hard to keep your back arched and not collapse it. The ballet dancer gave me some serious exercises to do, mainly where I lie on the floor on my stomach and arch my back up to the waist as high as I possibly can, and hold and hold and hold and frigging hold. Ugh, it hurts! But I wanna be able to do this so so bad, it’s worth all the work! Happily, I’ve been able to sell Luis on it; he thinks it would be so cool to end the Latin routine with it. Consummate Latin dancer though he is, he’s been really receptive to much of my ballet-y suggestions — Luis’s great!
Tomorrow, I have an appointment with my regular primary care doctor to discuss my headache episode (see last post). The doctor on call phoned yesterday to tell me the sinus x-ray was normal. So there was no sinus infection, which scares me because that means it was neurological, as he said. I did some internet research today, and from what I’ve read, I truly think it was a kind of cluster headache, which is an extremely rare neurological condition, even more rare in women (at least 70% of sufferers are men). But migraine descriptions just don’t describe my pain very well. With migraines, you have pulsing pain on one side of your face, no necessary sinus connection, and you want to lie down and try to sleep it out. With mine, and clusters in general, the pain is sharp sharp sharp, boring, drilling into your skull, exruciating, searing, honestly even suicide-inducing, making the sufferer want to scream out in pain or even knock his or her head against a wall. One sufferer whose account I read described it as having surgery without anathesia, which is precisely how I felt, and hence was why I was begging the doctor, who laughed at me, for an emergency morphine injection. And your eye on the side of the face where your pain is located is watery and red, and you have sinus congestion on that side as well; not so with migraine.
Most interestingly, you absolutely positively cannot lie down with a cluster or the pain is even more excruciating; instead sufferers pace the room, walk, run, must remain active at all times, which is exactly how I was, to the confusion of one friend who commented that I “take pain like a man” — ie: actively jumping around, not passively lying on the couch. That characterization made some sense to me, but it wasn’t like I was trying to act like a man. When I read about cluster headaches (hereinafter “CH”), and realized they described my pain more precisely than migraine, and read that men are overwhelmingly the sufferers of such head pain, I realized I was possibly handling my pain “like a man” because I had a predominately male headache. The only part of the description that doesn’t fit me is that mine was one long, 4 1/2 day headache, whereas CH’s are typically 1/2 to 3 hours in duration coming and going throughout the day for a period of weeks. I found this amazing CH support group website and almost cried when I read some of the accounts. I know this is badly anti-feminist of me, but when I first read that most sufferers were men, I immediately thought, oh my gosh, I can’t imagine a man going through this. Last week I was literally walking the streets of Manhattan screaming and bawling out in pain, with cab drivers, store clerks, pharmacists, even a group of police officers in a deli where I went to buy ice taking pity on me, trying to hold my hand, helping me get to where I wanted to go. Not to mention all of my friends and co-workers… But in our society, which stigmatizes any male showing of pain or emotion, it seems a man would have to try to hide his pain, would never be able to act like this, or would surely scare people. Sure enough, some of the accounts on the support group website talk about running to the basement to pace, bang heads against the wall and cry and scream out, desperately not wanting wives and children to witness such a state of helplessness. Other men likewise talked of “not feeling like a man,” being humiliated, feeling out of control, etc. So much worse to have to deal with these societally-based feelings on top of this horrendous, horrific pain. And, in my New York example, especially with the police or even begging the doctor for injectible narcotics, so much the worse if the man is minority — he may automatically be suspected of being an addict or criminal… Ugh, so nasty on so many different levels…
Anyway, I’m gonna talk to my doctor about it all tomorrow, and ask her to consider sending me to a headache specialist instead of my same neurologist. Even if I end up with a diagnosis other than CH, I feel like I’ve learned about another sad world through all of this. Bottom line: if you know people who suffer from chronic headaches, of whatever type, please offer all the love and support you can, and please don’t dismiss them!!