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...

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.