sisters in pain...

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Posted by Kathi ( on August 08, 2000 at 10:15:21:

In Reply to: I can't stand this anymore posted by L.A. on August 07, 2000 at 16:21:23:

I've had these for fifteen years. I had no less than three doctors tell me they weren't clusters because woman don't get them. I have smashed my head into walls, doors and bashed my head in with a shower massage. I've had hypnotherapy,oxygen, drugs, heat, ice, name it. Some attacks are horrible (I'm episodic) some are fairly manageable. I have had times when I was so out of control with the pain that I would just cry uncontrollably and rock myself like a mental patient.
The best I can tell you is that I haven't damaged my head (internally at least!) and I know the pain has made me a more compassionate and sympathetic person. Previous to the clusters, I was a very cold, tough person. The clusters bought me to my knees and made me "feel" the pain and sensitivity of others. Right now, my soon-to-be ex husband, who is also my best friend has a brain tumor. I know I wouldn't be half as compassionate about it as I am now because in a very small way...I know what he's going through. Insights? This is all I have to offer...
1) When you have a cluster, do WHATEVER it takes to make you feel better (short of overdosing or self-injury) I feel better when I'm stark naked, I can't stand having clothing on during an attack.
2) Do ice, do heat, do pressure on the part that hurts. Rant, rave, cry, rock. Even if they don't help, at least they make you feel proactive.
3) DON"T GIVE UP!!! Find a doctor who knows what he's doing. Any idiot who tells you it's "female stress" or "just a headache" doesn't have the tools to treat you. I found a doctor who HAS clusters. His lights are dim, he listens and speaks to me in a quiet voice. He knows when it's bad, I just need pain relief and a sympathetic ear. He saves the heavy conversations for when I'm feeling better.
4) I don't know if you have children, but don't hide from them when your bad. Obviously spare them the head banging and rocking but let them fetch ice or washcloths or really helps them feel less powerless and scared. Explain to them that you're not dying and that it's temporary.
Write me anytime, it's nice to know we're not alone.

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