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Topic: My first post (Read 216 times) |
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GreggD
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Hi everybody,
Quick background... I've been a Cluster sufferer since 1990 and have gone through hell with these things. It's been a long road, but I think I may have found my answer!
Since I was diagnosed with Cluster headaches, I've pretty much tried everything to stop the headaches to include Depakote, sansert, and Lithium. However, last year after finally giving up on Lithium, my doctor suggested that I try Verapamil in large doses once again to try to prevent the headaches. Early in my diagnosis, I used Verapamil, but I don't think it really helped. Anyway, I gave it a shot and it WORKED. I was taking 480 mg of Verapamil everyday until they stopped (it took about a week), and I was obviously very psyched. I hadn't got another cycle until 3 weeks ago (it was 1 year and 3 months headache free). I immediately called my doctor and he again prescribed me the same dosage of Verapamil. After 3 days... NO headaches. I'm still on the verapamil, and will continue taking it for a few more weeks. Can this be my answer!!!! WHO HOOOOOO! Sorry... Had to get that out.
One thing I've noticed since I've been diagnosed with Cluster headaches... When I first got them, I got them every six weeks for about 2 weeks. It eventually became every couple months for several weeks which the norm for me. The past few years, the clusters moved farther apart, but when I got them, they stayed a couple months. Weird! Anyway, thanks to Imitrex and everything else I took, I managed to deal with it, although it really affected my everyday life. I absolutely dreaded going to sleep at night (kind of like the Freddy Krueger movies). Anyway, I just wanted to post this to let you know that there is hope. I know I'm not cured, but thanks to Verapamil, my life has just got better!
FYI: I'm 36, a NON-smoker, very athletic, extremely healthy... and I still got them.
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baldy
New Board Newbie
Eat fish everyday
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Re: My first post
« Reply #1 on: Oct 12th, 2002, 8:52pm » |
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Happy for you with the treatment lasting so long. What are the side effects, if any??
I'm 63 and have had these things for 20 - 25 years. The first several years I chaulked them up to just a bad headache but they got progressively and aggressively worse until I was almost taken to bed all the time. I went to the Cleveland Clinic after about 5 years of asprin and was told there was help for this. I was RX'd Indomethacin and have been on that all this time. I only take it when attacked, which could be anytime at all. While in a cycle, I take it 3-6 times a day as a preventative..works sometimes. When I get them, they are not as bad as originally. My longest period of relief was about 5-6 months. I'm just coming off that period. They are getting even for 5 months of relief.
Luck all.....baldy
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GreggD
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I haven't experience any side effects to verapamil, except for some dizziness when I start taking it. I use Imitrex injections to treat the headache (same short-term side effects as most).
The worst side effects I've experience from Preventative medications was from Decadron... I'll NEVER take that ever again. I've tried many, many medications, but as I stated, I'm very pleased that verapamil seems to work to break my cycle... It's cheap, and I don't experience any negative side effects. I never heard of your medication, but I hope it works for you. If not, there's a bunch of meds out there, also combos... The key is to find out which works for you. Good luck!
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Marc
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Re: My first post
« Reply #3 on: Oct 12th, 2002, 11:12pm » |
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Gregg,
Glad you found something that works for you. Verapamil doesn't help everyone by a long shot, but it's my life saver too. In my humble opinion, it should be one of the first things to try, but it must be taken at high doses as you are doing.
Too bad you didn't find it sooner!
Marc
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| « Last Edit: Oct 12th, 2002, 11:14pm by Marc » |
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Mark C
CH.com Alumnus
New Board Hall of Famer
Onward through the fog.
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Re: My first post
« Reply #4 on: Oct 13th, 2002, 12:54am » |
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Hi Gregg,
Glad you are here posting and even more glad you have found an effective treatment in managing your CH. I too like most long time sufferers have tried many different meds through the years to treat CH. Most dont work for me for long, at least the preventive stuff. I have had some luck with the abortive things lately, Imitrex, Zomig, etc. I think the important thing is to keep trying to find the personal treatment plan that works for you and share the results here! I am still searching for the elusive combo that will free me from the beast and I will keep looking untill I do.
See ya,
Mark
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