Posted by Karen (188.8.131.52) on March 12, 2001 at 18:03:39:
I have never written but have visted your site many times. My daughter got her 1st CH 2 yrs. ago at age 18, it lasted 1 month with CH about every 2 to 3 days. Went to nero., had all the standard test done, on oxygen and steroids seemed to go away by itself, then she had another attach 6 months later that also lasted about 30 days then nothing for 1 1/2 yr. But Sept 9, 2000 she started all over again, this time it almost killed her, it went on daily and nightly for 6 months, betweeen 10 to 12 per day with at least 3 being a 10. We went to 3 nero., tried Lithium, Depakote, DHE, steroids, verapamil, maxalt, Lidocaing, Sansert, was hospitalized twice, I prayed everyday for her, it was killing me to see her in so much pain. She lost her job and even her friends became scared for her. She was taking vicodin, percocet, demeral and stadol for the pain but that only knocked her out for a hr. or two, then up agin with another CH. Our third nero. put her in the hosp. to get her some releif for 3 days, she had not slept more that a few hrs at a time for 6 month, she lost over 30 lbs and was becoming desperate and depressed (so was the whole family) he was the best doc. we had seen, was truly concerned even called us to find out how she was. He told us he would get her well which is something we all needed to hear.In the hospital he had her on DHE and Steroids along with Demerol for the pain, although she had had all these drugs before he added Topamax. After leaving the hospital he kept her on Topamax and the Migranal to abort the CH. After coming home she had 2 bad days and used the Migranal which did help to bring the level down, he kept telling us to keep taking the Topamax and upped her dose on the third day, he sd. it would take about 2 weeks for it work. Beleive it or not on the 14th day no headache, we could not beleive it. It has now been 5 days headache free (2 shadow per day but nothing to talk about so she tells me) Thank God for this doctor. Keep the hope and go through as many doctors as you have to, you will find someone who cares. God bless you all, and may the coming spring bring you all pain free day.
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