hi
i have visited this site many times over the past 7 years ( as long as i've lived with CH's), but never posted on your message board before.

i am 36 years old, a mother of 3 and an RN. i live in ontario, canada and got married 2 weeks ago.
i began having CH's 7 years ago,  and used to get them every fall, for about 6-10 weeks. the cycle then changed a few years back, and now i get them in the late spring/ early summer, and depending on the drugs that i use to treat/ prevent them,  they last anywhere from 4-8 weeks.

my pattern has typically been that i get a CH within 1 hour of waking up, which fluctuates since i work shift work ( 12 hour days and nights). i go from pain free to 10/10 pain, in/around my right eye within 10 minutes. Honest to God, when i discovered Zomig, i wanted to write a letter to astra Zeneca and thank them from the bottom of my heart. this drug changed my life. the problem was, i ended up needing to take it twice a day, because the CH's began happening 12 hours apart every day. I was also on an SSRI antidepressant and being on both, developed serotonin syndrome, which landed me in the ER.

I went to see a pain/ headache specialist, who put me on high dose prednisone, DHE shots and isoptin (verapamil), which worked well to abort the cycle, but the side effects of the prednisone were terrible, and i hated injecting myself in the thigh with the DHE, especially since i could never get proper needles for it and had to use subcutaneous needles. hurt like hell.

soooooooooooooooooooo, this winter, in preparation for my wedding in the spring, i started taking isoptin, 260 mg to try and
prevent them from starting, BUT, got my first CH on June 8th.
they have no pattern at all this time, they come at random times and the zomig does not work as well as it normally does.
I have rolled the dice by taking the zomig out of desperation a few times, but am taking my SSRI only every other day to lessen the odds
of getting serotonin syndrome again.

my MD started me on topamax on wednesday, and i have weaned myself up to 100 mg so far. feel pretty confused, dizzy, tired and clumsy, but the CH this am was no where near as bad as the others
thus far, so here's hoping it's gonna work. if not, i'll be back here looking for advice about occipital nerve blocks.

anyhow, sorry this was so long. glad to have a plce to share and hope i can be of help and support to others here as well.

try the DHE nasal spray it works better for me , its two sprays in each nostrail at night and when you wake up, its better then the shot, the med name for it is magrainal its DHE  wish you the best, also sence yours are seasonal , its better to get through it with med then do something earreversitial to your body !!!!!!!

thanks so much for your replies. i did not know that A) DHE was available in a nasal spray or B) zyprexa was used for CH's.
considering my drug company is giving me a hard time about covering the topamax since i don't have seizures, i can just see trying to get zyprexa covered!!!!! i think i am gonna become psychotic from the pain.......

i think it is really interesting that psych and seizure meds are used interchangably for headaches/migraines/CH's. anyone know more about this?

The cross-over use of meds from various categories tells you that we have VERY little understanding about the physiology of CH.

If you had been searching the med literature 15-20 years ago you would have seen an endless round of crap shoots going on, trying this and then that. The introduction of the triptans has been one of the wonders for CH folk!!
---------

Even if you have to pay out of pocket for Zyprexa it's affordable and I found that it gave me total, instant relief in 20-minutes.

Cathi_Pierce wrote on Jun 24^th, 2008 at 10:19am:


hi cathi

i used to work in ER, and when one would start, i would hide in a patient room and slap O2 on, but it never worked for me.
also, re: verapamil, i have been on 240 mg SR since Feb. my BP and heart rate are pretty low as a result, but hopefully with the "dopey max" ( i think people think i am high all the time now, cause i look TOTALLY zoned out), the combo will work.

thanks for the warm welcome all.

hi

i am in durham region. whitby specifically.
how bout you?