Friday, October 17, 2008

About my CH

I was just thinking, I didn't really elaborate on what CH does or is. Well in my terms here we go...
Cluster Headaches are very rare and effect men more than women. Im only the 3rd woman my neurologist has seen in 15yrs!! CH are usually one sided, even though they can change sides. (Like me) CH has the most severe pain I have ever felt. It feels like someone is poking a red hot ice pik into my eye. (The eye pain, and tearing starts first for me) Then the world comes crashing around my feet when the head pain starts. It is UNBEARABLE!! Sometimes the pain happens so quickly I have no warning signs like the eye tearing, I vomit. But that is rare. Once a month??? The AMOUNT of pain cannot be decribed into words. But in my opinion it's an an intense burning, stabbing and squeezing comparable to what some may say childbirth, sans epidural. The pain of a CH has led people to classify it as a "suicide headache". All because the horror is so excruciating you could take your life. I tend to rock while sitting, holding the side of my head that hurts, or even bang it on the floor, wall or table etc. And cry.... cry cry cry. It feels at the onset that it will never end. I just try to breathe, focus on a beach somewhere, or pull any happy image to help me get through it. Usually I can't do this. Its tough to try to focus on anything other than the grasping demon in my head. I still worry at this time about what my husband sees. Its got to be the hardest thing seeing a loved one in so much constant pain. Even my mother has seen it, and knows what it does to me. I still wonder what thoughts went through both of their heads. Wait im babbaling... Then 20-45mins to a few hours later its over.
The most attacks I've had in a day is 8. All severe in pain. Level 10. All lasting around 45mins and 20mins apart. That was the defining day for me. April 22, 2008. That day was both depressing and encouraging. I realized that I would never be the same person. I had to deal with this or suffer. Which I still am to this day. I was on prednisone during that time. I thought "my god is this what my life is going to be like?" because the prednisone is a steroid and supposed to surpress the attacks. I didn't want to live with the attacks, but didn't know what to do. If the steroids weren't helping then what would?? I fought harder for my disability claim. I knew as much as I didn't want to realize that I needed it. I couldn't tell when they were happening, and still can't. I couldn't function, or even sleep. I needed to help myself before it got worse. If it could even get worse then that.
I would advise anyone to goto the O.U.C.H website. (organization for understanding cluster headaches) If you want more detailed info on CH.

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