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Title: Hello from Ohio! Post by stargirl50 on Nov 21st, 2006, 10:41pm Hi everyone, I've been to this site many times in the past but this is the first time I've spent much time reading the message boards, so I thought I'd share my story. I'm a 23 yo female, and I'm a medical student. I got my first cluster headache when I was 15 and was diagnosed almost immediately (thanks to my dad, who is a doctor). I get 1, sometimes 2 clusters/year, usually fall or winter and spring. During a cluster, I get ~3 headaches/day, almost always in the middle of the night or first thing in the morning. I use prednisone, taper over 3-4 weeks + Topamax (right now I'm taking 150 mg/day with good results-- at the end of a 6 week cluster). I also use Imitrex and O2. I have tried verapamil and Singulair, but those didn't work for me. Prednisone has always worked well for me in the short-term (take the prednisone in the afternoon, headaches dont come back that night), but my headaches would often come back as soon as I got down to 20 or 30 mg if I wasn't taking something else (Topamax). Topamax has really been a life saver for me-- I feel like it's the only thing that will stop my cluster. I had headaches like 5 Christmas mornings in a row until I was put on Topamax. I've taken it on and off for 4 years now and I have no major complaints-- EXCEPT, I just paid $320 for a one month supply. ahhhhhhh! I just read that it's going generic in Sept 2008. So... just a couple more years. :) In the many years I've been messing around with these headaches here are some other things (in addition to a good med regimen) I've found that help me to break out of a cluster: -water water water (I know thats somewhere on this site!) -don't take naps -go to bed the same time every night, and wake up the same time every morning -I also sleep with a mask over my eyes so that the sun doesn't wake me up in the morning. I know it sounds silly, but for some reason I think it helps. -eat regular meals, and try to eat healthy (less soda, greasy foods) I'm looking forward to "meeting" you guys! Stay pain free ;;D |
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Title: Re: Hello from Ohio! Post by MJ on Nov 22nd, 2006, 1:29am Welcome aboard Stargirl. |
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Title: Re: Hello from Ohio! Post by bothofus on Nov 22nd, 2006, 4:31am Welcome, Glad to hear the dopeymax is working for ya. So no problems with kidney stones? I believe that's what I've read about it. To have a dad who's a doc, and knows clusters, now that's fortunate. Unfortunate ya got these nasty buggers though. Carl |
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Title: Re: Hello from Ohio! Post by roy21302 on Nov 22nd, 2006, 10:20am Welcome to the board, sorry your here, stick around Cheers Roy ;) |
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Title: Re: Hello from Ohio! Post by stargirl50 on Nov 22nd, 2006, 12:21pm Yeah-- I was lucky that my dad recognized the headaches. I was taking antibiotics at the time and at first my pediatrician thought I had some intracranial swelling from those. But I wasnt so lucky :) Ive never gotten kidney stones from the topamax-- I do drink a LOT of water though which is supposed to help with that. When I first start taking it, I have a little bit of the tingly fingers/toes but my tongue feels REALLY weird: tingly, and nothing tastes right, especially soda. I do also have word finding difficulties, but it's the worst when I first start taking the medicine, and doesnt get worse when I increase the dose. Bottom line, the side effects are annoying but worth putting up with cause it makes the headaches go away. |
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Title: Re: Hello from Ohio! Post by Guiseppi on Nov 22nd, 2006, 1:05pm Welcome to the club! Great first post, you sound like a med student as organized as you are. Please stick around and help educate all your associates/future doctors on this stuff! You'll be a gold mine for future sufferers! Guiseppi |
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