Poppy
CH.com Newbie
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I Love CH.com!
Posts: 4
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Don't know if I'm doing this right! The attached file is my CH history. Have tried just about everything and am now on my 6th neurologist in 10 years. The current regime was first Rx'd by neurologist #3 (no longer in practice) plus had to convince current Dr. to Rx oxygen (insurance won't pay for). Read a lot and found your site many years ago, helped me get Rx for O2.
Insurance companies are not very informed about CH, but it's going to get Obama Better once Big Gov takes over? Be very afraid of the future for CH sufferers! I don't think Big Gov will care a lot about a MINORITY of people suffering with our condition. Okay, no more politics!
Think this is enough for first post. Someone let me know how I did?? Thanks, Poppy P.S. 17KB file would not attach will try and copy here: Poppy History: Diagnosed 10+ years ago and for 8 years had active 6 to 8 month periods of CH’s with 4 to 6 months of remission. CH’s usually started in September, October and would stop March, April. Last two years there has not been a remission period for over 2 weeks. Current Medication: 200mg Verapamil: Twice a day 500mg Depakote: Once a day Oxygen @ 12 ltr/min: As needed, 5 to 15 minutes until pain subsides 40mg Relpax: Every night that I want to sleep more than two hours at a time Current Symptoms: Ghost headache entire day, two or three days a week will take Goody Powder if pain starts to interfere with work. Try to go to bed 9 to 10 o’clock (alarm set for 4:30am), two hours after falling asleep will wake with headache. 5 to 6 nights/month, if headache is minor (1 to 3), do nothing and hope it will not return, try to go back to sleep. If pain persist, I use oxygen therapy and can usually go back to sleep. 6 to 10 nights second attack will occur, it’s now 3am, use oxygen to stop pain, make coffee, take Goody Powder and stay busy till it’s time to go to work. Most nights pain is 4 to 7, use oxygen, take Relpax, go back to sleep and wake up when alarm goes off. Since I can only get 18 Relpax/month will go weekends with just oxygen. This usually means 2 to 3 attacks/per night, fairly tired the next day. If I try to nap on the weekend, almost every time wake with (4-5) CH. This has been my normal routine for two years with the only real remission being twice a year when I took prednisone for a month So, I’m a 61 year old walking headache, Dr. doesn’t want to try lithium and I understand his reluctance. Of the three (lithium, prednisone and Relpax) Relpax seems to have the least side effects, but don’t know about taking 18/month for the next 15-20 years? Although I’m not showing any symptoms (complete yearly physical) family has history of heart problems.
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