Here is what I do

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Posted by Russell ( on January 13, 2000 at 15:46:04:

This was my "words of wisdom" to a sufferer,
so I thought I would post it here, so I could get
advice on my advice and others could share.

First of all, I am not a doctor, GO SEE A DOCTOR.

I have had clusters for 25 years.
Cures are as different as people.
I avoid antihistamine at all cost, causes my clusters to go through the
Also coffee and cigarette smoke really kill once mine get started, not
so much otherwise.

When I can't get serious meds from the doctor, here is what I do:

1. Don't overuse OTC painkillers.
2. Start with 2 Aleve and 2 Tylenols, then 2 Tylenols every 4 hours, and
1 Aleve in 12 hours. This can be repeated the next day, but please ask
your doctor. This doesn't take the pain away, in fact at times it still
hurts like crazy, but it does help.
3. Find a comfy place to lay down. I quit tantruming quite a few years
ago, however I do still humm (the vibrations seem to help) and gently
pound my head.
4. Roll up a towel or use a headace pillow under the neck (experiment to
get the right size roll). This helps sometimes, and sometimes not, but
never seems to make things worse. I can feel my neck poping and cracking
like it is alive or something, it is wierd.
5. Also a hot bath or shower can be a treat, but is not a long time

As far as my Rx meds go:

1. I take 120mg of Propranolol each morning.
2. I use Imitrex shots to abort the serious ones, but for me one shot
kills only the current headache and the next one is back in two hours.
Imitrex can only be used at the rate of two shots per night, four per
week. So needless to say if it does not break the cycle (sometimes it
will), I get to keep getting headaches.
3. I also use Stadol NS to mask the pain when things get bad. My doc
doesn't like to give this medication out, so I don't get much of it. I
spend many cycles without this med. It will make you either sick or
high, depends on the person, I get high. It takes a level 7 or 8 down
to a level 3 or 4, which is a big help.

My last word of advice:

If he/she won't help, find another.
Clusters can be life threatening.
This isn't easy, doing all the insurance changes and paying fees and
filling out forms.
But I spent 15 years from when I was 12 years old trying to get help.
I didn't think it existed, I had given up by the time I was 27.
Then out of the blue, a doctor cared.
He's gone now, and the new doc don't care so much, but he still knows
about clusters.
It is worth the hunt.

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