Friday, October 17, 2008

hello world!!!

I am so happy that I'm finally doing this!! Well about me... I'm 27, and I've been dealing with Cluster Headaches (CH) for 2yrs. (Episodic: meaning they come in cycles with pain free remissions) I know it's not long for some people but, if you deal with this horrific pain, its sure long enough. I have been on 15 different CH medications in the past year. Absolutely none of them have seemed to help. Except for the Prednisone (steroid), and my first trial of Verapamil (preventative). I just recently went to see a neurologist. That was fun... He didn't do much, atleast not yet. Just asked the routine backround questions, and put me back on Verapamil, at a signifigantly higher dosage. Which I wasn't happy to be back on!! I hate how tired it makes me. Also I have been on it for a year now, and it only helped for 6 months. But who knows, maybe at this dosage it will show some improvement of regulating the headaches.

Right now at this very minute, I don't know what anyone would classify my pain. Small almost non exsistant CH? All I know it's about a pain level 5. (Completly normal for me on a daily basis) It's just a constant annoying pain, in my neck, cheek and ear. (Right side) It has been around for 2hrs or so, and has not changed pain level wise.

I suppose your wondering why I have called this "I don't know". I absolutely hate to say this, but that's kind of my motto. I don't know what tomorrow has in store for me, or any day for that matter. My CH attacks are so spontaneous that I don't know when they will happen. Also, I really don't know what's next for me. What medication will finally help to prevent the attacks? What will help with the pain? If I'll have to get surgery? I just don't know. Its all a guessing game. What I do know is that I'm very informed, I do constant research on CH. I talk to my Dr's on a constant basis filling them in.

I don't want to become a victim of this condition, but its VERY hard not to. Speaking of that, I'm home on disabilty. My attacks are so varied that its hard for me to have a normal life. I cannot make plans, because even I don't know how I'll feel til that very day. The worst part is that I've lost my love for hobbies. Its hard to try to focus on something when you feel depleated. I try to make the best of it, but sometimes depression washes over me like a wet blanket. Hampering any kind of energy, emotion, and just leaves me an empty shell for days on end. No one can even begin to know the pain I go through, unless you see it in action. That's another hard thing for me to deal with. Spreading the information on CH. A lot of people around me DO NOT understand what my life is like. Most likey they probably never will. A headache may be a headache, but a Cluster Headache is vastly different...

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