My name is Antonia and I am a columnist/blogger for Canada's biggest paper, The Toronto Star. I found you guys yesterday and I have already printed off the O2 info for my doctor who is well-meaning but clueless about how much I need. I am on 8 on the regulator, which is as high as it will go. It works, but not as fast as it can, plus the headaches will come back later in the night. I need a new mask like those described here plus more O2.
I never thought I would find myself here. But I am glad that you exist.
My first attack came in 1975, when I was in my early 20s. They came back, like Swiss trains running through my head, every Jan-Feb after that for 15 years.
They thought it was neuralgia, sinus, tension, migraine, tumours ... They put me on Demerol, Percodan, Fiorinal, Valium, codeine ...
I'd take the drug and then, by the time the headache went away, I was Miss Dopey.
Believe me, if you think they know nothing now, you should have seen what it was like then. Not even Dr. Google to help you out.
Finally, the guy who was gonna perform sinus surgery (!!!!) on me decided, just to be safe, to get an opinion from a neurologist. I will never forget this guy. Old, in fact retired, with an eastern European accent. He sat in his chair, palms pressed together, and asked "So? Tell me?''
Well, I have these terrible terrible headaches. They always wake me up although I sometimes get them in the day.
What else?
They're always on the right side of my head, like an ice pick here, right above me eye.
And?
Well here's what's really funny, you can set a watch by them. They always come at the exact same time.
He looked at me and said, well dear, in 50 years of practising neurology, I have never before diagnosed CHs in a woman.
Lucky me.
He gave me 8 pages photocopied from some medical journal and wished me luck.
It went on for another 5 years when I moved to Toronto 9from Montreal) and my doctor here prescribed Elavil, Inderal, a beta-blocker, and Demerol. The beta-blocker helped a bit, I think, because my headaches only lasted half an hour instead of two hours and were never quite so awful.
I had my last attack in 1990.
Then, last month, wham. As I posted elsewhere, I had a 19 year remission and now, here I am, sucking 02. At least we know about this now, and also have Imitrex. (I use the nasal one but I am not allowed more than two a week.)
We also have Dr. Google, and each other.
Even now, friends and family who remember my attacks from the old days say, maybe it's stress ...
You know what I am afraid off? That these will become permanent, chronic, something.
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