Out of Control

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Posted by James ( on February 26, 2001 at 11:01:40:

Hi group. Hope everyone is having a good day.

I've posted here before but it's been awhile. I'm episodic and have been for over 18 years now. I've been through just about everything but it seems there's something new every year.

Usually when a cluster starts I'll have a few light HA's that foretell what's coming but two weeks ago I started with a bang. No warning at all. Watching the 6PM news and within ten minutes I was in a killer.

I had been on Verapamil and Depakote with light dosage. I luckily had some Imitrex nasal spray which I had saved. I've learned to get all my prescriptions when available and save them.

Any way I called the Neuo the next morning and went back to heavy dosage of the usual drugs and started Prednisone a couple of days later. I'm having my first morning of no pain in almost two weeks now. I know it will be back before the day is over but for this moment, I'm OK.

What is strange is that this thing has been raging, completely out of control. I did nothing I know of that brought it on. Same ole me and same ole lifestyle, you know, watching what I eat, etc.

It takes some time for the heavy dose of Depakote to work for me, if it works for me. It did last year. It takes time for it to build up in the blood. The Prednisone only works for a couple of days but you do feel good while you're on it even though you may still have the attacks.

I do have a question about Depakote, for those who might have used it. It seems to have a calming affect on me. Not sleepy calm but my attitude seems to be more laid back. I seem to look at things differently and to tell the truth that's a good change for me. Anyone else had any similar affect from Depakote?

I also hate to report that for many of us these things only get worse with age. I'm 54 and wish I could go back to the old days when I only had the attacks in the evening or at bed time. Now days I can have a serious attack at 7 in the morning another at noon and another at 2PM. My nights are filled with many attacks. Sleep for 45 minutes and awake and on the oxygen. Many nights I repeat that cycle for as many hours as I try to sleep. The more tired I am the worse it is.

It works about the same way when eating. If I fill my stomach with anything I'm in an attack within 15 minutes, so I must have light snacks several times during the day and don't even think about eating at night.

I know I'm preaching to the choir about this stuff. It's just more ammo for a real push for more research and a national voice. By the way, I doubt a cluster-head is ever going to get that job done. We're all too consumed with our disease, as we can't help but be. I've had to be self-employed for over 10 years now and would fire myself if I could. There are many days when I'm no use to the world on any level. I have to spend all my "normal" time on feeding myself and there is little room for excitement about an organization, of any kind.

Best wishes to all.

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