ReeseC
CH.com Junior
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I Love CH.com!
Posts: 34
San Francisco
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Hi, this is my first post.
I remember getting my first behind-the-right-eye headache when I was 12. It was the second time I remember ever getting a headache, the first time being when I had the flu, and the very back of my head felt like I had bruised it.
For years afterwards, I thought that two types of headaches existed. I thought people got the back-of-the-head pain when they had the flu, and the behind-the-eye pain when they had a headache. So when other people would say they had a headache, I didn't understand that they were not feeling what I felt.
Because of this lack of perspective about CH v. other headaches, whenever I would get a tension headache, I just always thought I was tired. I had no idea that a tension headache was a headache. Those don't really hurt! They're just uncomfortable. It was a miracle to me when I realized that Tylenol can make me feel "awake" again if I had a tension headache. I wish the same were true for my CHs!
I remember that at age 12, the pain came back daily, and lasted between 30-60 minutes, and the cycle lasted a few weeks. I had "headaches" again, behind the eye, when I was 16, 19 and 22.
I NEVER thought to see a doctor for them until I was 22. After all, no one else sees doctors for their headaches unless they had "migraines." I didn't have auras or light sensitivity, so I knew I wasn't a migraine sufferer.
When I was 22, in 2000, with the internet at my fingertips for the first time, I looked up my syptoms. I searched for "behind" "eye" "extreme" "headache." And one of the first results was a site for "cluster headaches." It was the first time I had ever heard of the name.
After realizing the seriousness of my condition, and that it actually HAD A NAME, I went to the doctor for the first time ever. She said that I DIDN'T have cluster headaches, even though I was naming off all the textbook symptoms, because I was a girl, and according to her textbook, only men get CHs. She prescribed for me these giant horse-pills of 800mg ibuprofen. I also tried Excedrin on my own. I'm not sure whether they actually worked for me because I can't tell if the CH aborted on its own or if it was because of the ibu and Excedrin. Whether I take the pills, they would last between 60-90 minutes. In retrospect, knowing what I know now, I suspect that the pills had little or no effect on me.
Even though previously I had cycles ever 3 years, I was in remission for 8 years, until 24 days ago, when the beast reared its ugly head again. I'm 30 now. This time I saw a doctor right away. Again, the diagnosis did not come immediately. She told me to just take Excedrin while she consulted with neurology.
After suffering daily for TWELVE DAYS, she finally called me back and told me to come in. She had a diagnosis. She said, "I believe you have either migraines or Cluster Headaches." No sh**! I thought to myself. Did I say that 12 days ago?
She put me on Maxalt 10mg, and verapamil. She told me that I needed to take verapamil for 8 weeks, and that it was going to make me dizzy and constipated, but that my CHs should start going away after 4 weeks.
After 4 weeks?! Dizzy and constipated? I was already on Day 17 of my cycle when she gave me the prescriptions, so I was reluctant to start the verapamil. I still have not started on verapamil, hoping that my cycle will naturally end soon, by Day 26 or 28. I've had 6 hits since, and the Maxalt has worked somewhat for some of them. I'm lucky in that the most attacks I've had in a day is 2 attacks, and I've had a couple of pain-free days since the beginning of the cycle.
The pain is scaring my husband, and is making me really really really behind on work. I'm constantly worried that I will lose my job. I'm an attorney at a law firm, and I'm not sure how sympathetic they are to my needs. They are not assigning me new projects, and have reassigned a couple to other attorneys. I still have a lot of stuff to work on that have mid-August deadlines, so I'm working half-time, plugging away at them whenever I can. After I first sent out my email to my bosses telling them about my diagnosis, no one has sat me down to talk about it. I told them that in the past, a cycle typically lasts 2 to 3 weeks. I suppose they are just waiting to see whether I will be able to bounce back, or whether I will become useless to them.
I am just so glad that I have a name for my pain. Most of my friends and colleagues are internet savvy, so if they find information on Wikipedia or on this site about cluster headaches, I'm hoping that they will understand.
I will keep reading and keep posting.
Maybe if this cycle doesn't go away soon, I will have to start the Verapamil.
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