Posted by Vince S. on May 20, 1999 at 15:14:56:
In Reply to: Re: Hello...My Story posted by Linda B on May 20, 1999 at 14:46:41:
Sarah,
The headaches you have sound terrible. But before you convince yourself (or some unsuspecting
doctor) that you have “cluster” headaches, do some research about the symptoms. First of all,
they’re called “clusters” because they arrive and stay with us for a while. In other words, most of
us have headaches every day (or night) for an extended period of time, and then they disappear
for a while. These stretches of “remission” can last longer than the headache periods - and then
they’re BACK. Before you start reading, here are some symptoms I have.....as well as many
others who suffer from cluster headaches:
1) The BURNING!!! It starts behind my right eye, and travels all the way across the top of my
head and down to the base of my neck. Cold compresses seem to work best for me to ease this.
2) Feverish feeling. My head becomes “hot”.
3) My right eyes waters constantly, and turns red during the actual headache.
4) I almost NEVER get the headaches during the day (unless I’m catching a “cat nap”) - they
almost always wake me out of my sleep at night. This can go on all night - up and down, up and
down.
5) Conventional pain medication doesn’t help. Prescription pain killers (the GOOD ones!) only
make me feel “drunk”, and less capable of “fighting” the headache. I nearly LOST IT one night
on Demerol many years ago. I was stumbling like a drunk and couldn’t manage to tend to the
headache. I was numb all over, but the headache was even MORE intense. For me,
anti-inflammatory drugs seem to work best during an actual headache - even regular aspirin.
Also, caffeine, even if it’s just a strong cup of coffee, will help shrink the swelling in my head
for a short time. I use verapamil hydrochloride as a preventative medication, which is normally
used on blood pressure patients and heart patients who suffer from periodic angina. Sometimes it
helps.....sometimes it don’t!
6) The headaches ease up when the cluster is about to end. Sometimes, like a fireworks show,
I’ll have on last “good one” before it’s all over.....but usually they just start to fade before they
disappear altogether.
7) Most doctors are IGNORANT about clusters, and will try to treat them like migraines. In most
cases, their treatments don’t work.
I hope the above list helps you to identify whether or not your headaches are actually of the
cluster variety. If you’re only having one headache every couple weeks, this may indicate that
you suffer from a different kind of headache. Follow the advice given to you by the other people
on this message board and SEE A NEUROLOGIST WHO HAS TREATED CLUSTER
HEADACHES!!! Make sure you’re CRYSTAL CLEAR when describing your symptoms, and
make sure you provide him/her with all the results of your previous tests, even those ones which
yielded negative results.
God Bless and Good Luck!! --Vince