Greetings. My name is Shawn, and I am a 39.5 y.o
female (I clarify that I am female simply because Shawn is a name more typically associated with men than women) living in the Adams Morgan neighborhood of Washington, DC.
As you can see from the time stamp, it is after 3:30am EDT, and I am up with The Beast yet again.
I'll confess up-front that until 7 days ago, I had never even considered that I might be a CH sufferer. I began getting what I thought were migraines when I was still in high school, so I have been suffering (and misdiagnosed) for almost exactly 20 years; God, just writing that makes me want to put my head into a vise
What may be even more depressing is that I remember that first attack so vividly, it's frightening. I was 18, getting ready to graduate from high school. We lived in a very rural town just outside the south entrance of Yosemite National Park, and north of Fresno (for anyone who knows California).
My parents both worked in Fresno, and most days, I would come home from school, do my homework, start dinner, and wait for my mom & dad to get home, which was usually around 9:30 at night. I'm not sure why, but I feel it's pertinent to mention that I'm an only child...
Anyway, The Beast reared its ugly head. I had never felt such excruciating pain in my life, so I called my mom at work, and she said, "There's some Darvocet in the bathroom. Just take one and lay down." Well, I took the Darvocet, and decided that the kitchen floor was the coldest surface in the house, so that is where I chose to lay down (because the cold seemed to at least numb my head).
I fell asleep on the floor while waiting for either 1) The Beast to go away, or 2) my parents to get home from work. Imagine being a parent and coming home from work to find your only child out cold on the kitchen floor - my mom shrieked, thinking I had died (no such luck, as far as I was concerned).
So when subsequent attacks hit, Darvocet was what I took, until Imitrix came on the market. Then I used Imitrix (with limited success) up until about three years ago, when it stopped giving me
any relief. Then I switched to Maxalt, which has also now stopped offering any relief.
I believe now that I have been in a cycle for several months (if my memory serves, this one began in July). Last Friday (the Friday before Columbus Day), The Beast came calling sometime in the evening, and I rapidly cycled for four days. When I finally broke down and called my doctor, he told me to go to the e.r. I ignored his advice, because I had no desire to sit in a hospital all night, waiting to be seen.
But by this last Tuesday morning, I surrendered. And while in the e.r., for the FIRST TIME, a physician's assistant said, "Your symptoms are more indicative of a CH than a migraine. Have you ever been seen by a neurologist?" Well, no, I haven't, because all this time, I thought these were migraines!
I saw my doctor on Wednesday, and he decided that maybe we needed to experiment with narcotics, so I'm now trying Vicodin and Fioricet. His instructions were to try one, and if it didn't help, to try the other. And if neither helped, to try them together.
My husband (a photographer) had a wedding shoot yesterday (or rather Saturday, because it's now Monday), and I accompanied him. The Beast came and went several times over the course of the day, unfortunately.
And if you're like me, when The Beast visits, the very last thing you want to do is be social. But I somehow managed to get through the day (go me).
Today was better, until about four hours ago, just as I laid down to go to sleep. I've gone through two attacks writing this introduction (more like a novel, now). The Beast is coming up for round three, I fear, as my right eyelid is becoming swollen, and my nose is beginning to run.
As far as the meds go, well, the Vicodin makes me itch all over (I believe that's an allergic reaction). And instead of making me sleepy, it makes me wired - all I want to do is get some damned sleep! I'm exhausted! And I was avoiding trying the Fiorcet because it's got aspirin and caffeine in it, which seems counter-intuitive to my getting any sleep. But I think I'm going to have to try it, and hope I just pass out from sheer exhaustion.
I was also wondering if perhaps I should try Maxalt
and Fiorcet - does anyone have any experience with that combo? Or does anyone have any suggestions in general (aside from the aforementioned vise, or just walking myself into SE DC and hope I get shot)?
I did see that there's a local neurologist who specializes in CH, so plan to call his office first thing in the morning.
Well, so, there's my introduction, long-winded as it is. I'm so thankful to find others to talk to, who know exactly what I'm feeling, and what I'm going through. I hate that CH is the underlying reason for all of us gathering, but I look forward to "talking" with you, and listening, too.
Relief and sweet dreams to those of you up at this ungodly hour,
Shawn
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Hello from Washington, DC (Read 2056 times)
