Posted by Bruce Marcus (220.127.116.11) on February 07, 2000 at 02:47:34:
I've been lurking here a bit of late. I find that when I am in a cycle I can take much comfort in knowing that there are others out there who know what it is like. Just found this site at the beginning of my current cycle about 10 days ago. Have been at the Mass Gen site and a few others over the years. Haven't felt any desire before to add to the conversation, but it has finally dawned on me that in all my reading on the invasion by the monster I have never read of anyone else who has had their headaches triggered by an activity that, when I am in a cycle, invariably brings mine on.
First, the bit of intro requested of newbies by the FAQ, and an apology beforehand for the length of my message. I do tend to go on some:
I live in Maine. Moved here 29 years ago from NYC. Had my first CH a month after I arrived. First thought that they were an allergic reaction to new rural environmental stimulii. Oddly, as it turned out, my somewhat serious hayfever which flourished in an urban setting completely cleared up in the wilds of rural Maine. I mention this because I have always wondered if somehow the two events, my reduced allergen sensitivity coinciding with the onset of CH, has any relevance.
My first visit carrying my symtoms into the belly of the medical beast resulted in a diagnosis of sinus headaches. That was followed by about five or six other mis-diagnosis, all resulting in therapies which were, I later learned, counter-indicated for the treatment of CH. I finally stumbled upon the correct diagnosis while reading the diary of an obscure British novelist, who's name I've even forgotten.
My cycles have always been somewhat erratic, skipping a year once or twice, having only one or three or four cycles in others, but most commonly, two, one in the late summer or early fall, the other starting in late January. That one is the one constant. If I have any cycles at all in a year, one of them will always be the mid-winter one. The duration of the cycle, about two weeks, and the dynamic of the headaches themselves remained pretty predictable until about five years ago. Until that point I never had a headache that lasted more than 1/2 hour, or that presented me with a level of pain that I couldn't somehow endure. I never had more than one full-fledged headache in a day. Then all hell broke loose. Cycles started lasting a month or more. Headaches started lasting 2-3 hours or, rarely, longer. They began occuring twice a day. The level of pain reached unimaginable heights and trips to the ER for the administration of unspeakable narcotics became common. Twice, alone in the house, I went into shock and woke up lying in a pool of vomit, which could well have become a life-threatening condition.
Was perscribed all the usual suspects, some of which, like oxygen, did me no good whatsoever. Others, like cafergot, helped for a while and then squat. I got used to thinking of my affliction in anthropomorphic terms, that it was some sort of alien higher-order being that did battle in my head with armies of defense I sent at it, often retreated a bit, but always would prevail in the end. I did a lot of "why-meing" and spent a fair amount of time focusing on suicide.
Three years ago I found a neurologist who seemed to know a good deal more about the illness than most of his profession around here. Tried Prednizone, then Verapamil, and finally and, for the moment, successfully, a cocktail of the two. Since then no series has lasted more than ten days, though several times it came right back as soon as I had gone off the meds. Going back on a second time has worked so far. The duration and intensity of the individual hgeadaches has not diminished, however. Thankfully, Imitrex does the job and for two years now I have not had to suffer through a complete headache.
Finally to my trigger; I have, since a very young age, slept very little. For most of my life much of my time, stolen in the early hours of the morning, was given over to reading. I have also, since a very young age, been a rather obsessive movie addict. With the invention of the VCR, I have spent a lot of time sitting inert in front of the one-eyed blue monster, something I never did much of for TV programming. At some point early on in my career as a video addict it started happening that when I was in a cycle, watching the tube for any length of time beyond a few minutes would bring on a headache. Until the great change five years ago it was most often a very mild and short one, a sort of trailer for the one that would hit me later, about an hour after I went to sleep. Since the change it often triggered what was THE headach of the day.
I know that CH tends to strike at moments of repose, in my case only in moments of repose. But during 29 years of CH I have never had a single headache come on while I was reading, and could not watch a movie or anything else on the TV, in cycle, without having one.
Has anyone else had this experience? I have several speculative thoughts on the matter, but I'll wait to see what turns up in response first.
Once again, sorry for going on at such length. Now you know why I have previously been reluctant to submit postings to the MB. I am not famous for my brevity.
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