Greetings:

I have had CDH for about 13 years. I started out in my early
twenties with migraines after an industrial injury. I had classic
migraines to start with. Then, after about five years of a few
migraines a month, then I started having really bad headaches at
work. Within a few months of that, I was having constant headaches -
and have had them every since. I now not only get the daily
headaches and classical migraines, but also get common migraines and
cluster headaches. I used to get quite a bit of migraine medication,
but when my husband's employer changed insurance companies, I was
limited to three tablets every 20 days. I used to take narcotic pain
relievers to deal with the constant pain, but then I developed a GI
problem that was due to the daily use of narcotics. I have now been
off all pain relievers for about four months, and my headaches just
keep getting worse.

My doctors have tried Neurontin, but I had a horrible reaction to it
and cannot use it. I am hesitant to use any anti-seizure medication
as my problems with Neurontin were so severe. I've had several CAT
Scans and MRI's over the years, but they found nothing - well, other
than my brain, that is.

I get tired of headaches. The things that make my headaches worse
are light, noise and smells - sun light, lamps, etc., we have three
small children, and live in a crappy neighborhood where everyone
considers it their right to blow their horns for their friends to
come out and let the rest of us enjoy their blasting music, and
chemicals, perfume, some herbs (lavender kills me), stuff like that.
My biggest migraine trigger is light - strobes, flashing light,
reflected light off mirrors, windshields, bumpers, etc. I have no
known food triggers and avoid foods with chemical additives.

Right now, I just suffer. Tylenol doesn't do a thing, and I can't
take most of the others due to a blood clotting disorder. I'm so
tired of having a headache that I could just scream. It certainly
doesn't make me much fun as a mother and I try to avoid going outside
just to stay out of the sun.

I can't find a migraine medication that is cheap enough that my
insurance company will let me have enough to try to keep my pain at a
reasonable level, and there is nothing that I have used that works
other than narcotics for my constant headache and I can't take those
any longer.

If any of you have any suggestions, I would love to hear them. My
doctor is very open to trying things to give me some relief, but we
sure haven't found anything yet. When they don't even know what
causes headaches let alone migraines (yea, some of them think they
do, but I doubt it) how in the world are they suppposed to treat it.
And I just love the doctors who try to say that if they can't find a
reason for it, then they can't treat it - like it only exists if they
say so.

I hope you all are having a better day than I am.

Kathleen in Escondido