Coming out of the closet...

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Posted by Kathi ( on July 25, 2000 at 11:45:20:

I've had clusters for 15+ years. I've seen every doctor under the sun. I quickly learned (through the school of hard knocks) that most doctors don't know a damn thing about clusters. I was accused of being a drug addict for going through 20 tylenol and codeine over a two week period. (I'm a person who doesn't even THINK about pills when I'm in a pain free period) I fought long and hard to treat my clusters as holistically as possible until I was a beaten woman. I finally gave up after doing it drug free for seven years. My five year old daughter caught me beating my skull in with a shower massage one morning at three AM and that was it for me.
I wander around, muttering, screaming and crying when I get one. I awake from a sound sleep thinking someone is stabbing me in the head. I try to hide from anyone I care about because of the embarrasment. Then, when it ends, I go through this burst of euphoria. I can't stop talking and I keep looking around in stunned disbelief that the pain has finally stopped. Then I get what i call a "cluster hangover", extreme fatigue, weepiness, disorientation and a fog.
I can go a year between attacks and when they hit, they usually last a month. I can't take Imitrex because I have an arrythmia. I've been a smoker and a non-smoker...niether made a difference. I can enjoy a fine wine without a problem, except during an attack. Strong foods like spice or garlic can bring on a waking cluster during an episode. Hell...during an episode...just about ANYTHING can trigger a cluster.
I've been separated since October. My ex and I are very good friends and he was terrific with my clusters. I have been living in fear of the new man in my life seeing me during one. Well, my worst fears came true this week. This is my first bout since Oct. 99. I woke up crying yesterday and shocked my lover (even though I had warned him it could happen at anytime) He got to see this calm, rational woman he loves reduced to a blubbering pile of hysteria. I hope that he loves me enough to stick with me through this.
I have found a few things that work...or at least lessen the time of an attack. I lean over the tub with the shower massage on as hot as I can stand it...neck and temple. Also, a shot of Afrin nasal spray can sometimes stop the pain almost immediately. Hot towels held to my cheek and eye with alot of pressure can help. My daughter (now 12) brushes my hair, VERY HARD and it seems to help. And when all else fails, a couple of good hard hits against a concrete wall at least make me feel like I'm fighting back!
One of my most difficult aspects of this demon in my life has been my child. I see the fear in her eyes when I have an attack and it breaks my heart. She runs around with ice packs and brushes and hot washcloths. She hovers around me, afraid I'm going to start bashing my brains in. She cries when she hears me babbling incoherently and thinks her Mom may be going crazy. And worst of all, she lives in fear that she may one day get them too.
I've learned alot by reading this sight. I've been told time and again that women don't get this, NOT TRUE. I've been told that "it's just a headache", NOT TRUE. I've been told I can do much to alleviate it by watching what I eat, etc...NOT TRUE.
Hold on everyone, we're obviously not alone.

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