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Cluster Headache Help and Support >> Getting to Know Ya >> New to CH.com but not the new to the "Beast" http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1288018447 Message started by Tony_C on Oct 25th, 2010 at 10:54am |
Title: New to CH.com but not the new to the "Beast" Post by Tony_C on Oct 25th, 2010 at 10:54am
Hello everyone. My name is Tony and I am in the sunny state of Florida. I have been dealing with CH's for about 7 years now. After a couple of different doctors I took upon myself to make an appointment with a neurologist who had dealt with CH before. He scheduled me for an MRI and after determining that there was nothing else wrong he diagnosed the CH. They are chronic and they usually start about September or October and last about 2 - 2 1/2 months. My alarm clock is usually around midnight when he wakes me. I have tried most abortive treatments such as the oxygen and imitrex and have still yet to find one that works for me. Ice did relieve it to some point up until this particular bout. Now it seems to aggrivate it. I will be trying the Redbull in the next couple of days. I have been taking topomax 20mg twice a day once a bout starts and in the past it did seem to cut down on my occurences substancially, like from ever night to twice a week. When this bout started I started the topomax and I have been taking it for 3-4 weeks and it does not seem to be helping this time. Has anybody had this happen and if so can I increase the mg's or is it time to try something else? My ENT doctor suggested Propranolol, is it even worth trying? I am glad to have found this site and hopefully someday the medical society will have answers to our wonderful CH.
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Title: Re: New to CH.com but not the new to the "Beast" Post by mikstudie on Oct 25th, 2010 at 11:10am
Tony,welcome,sorry you had to find us but glad you did.
You sound like a night hitter like me. This place saved me by one simple suggestion. 10mg of Melatonin 1 hour before bed, I tried this and have not had a night hit for about 5 weeks. All night hitters owe it to themselfs to try Melatonin.. |
Title: Re: New to CH.com but not the new to the "Beast" Post by Tony_C on Oct 25th, 2010 at 11:15am
I was going to try that. How and where do you purchase the melatonin for that dosage? Is it on the shelf or should I just go right to the pharmacist and ask him?
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Title: Re: New to CH.com but not the new to the "Beast" Post by Guiseppi on Oct 25th, 2010 at 12:14pm
Melatonin is an over the counter available at any health food or vitamin store. Start with 9 mg about 30 minutes before bedtime. Some go as high as 12-15 mg to get relief. One sufferer posted he found the best results by combining slow release pills, with regular release pills. The obvious advantage being it gets you later into the night before it runs out. Be patient, several have posted it took a couple of nights before the prevent effect kicked in.
Joe |
Title: Re: New to CH.com but not the new to the "Beast" Post by mikstudie on Oct 25th, 2010 at 1:40pm
Tony,I take one 5mg regular release and 5mg slow release an hour before bedtime. Took 3 days and I havn't looked back since. Some wild dreams the first couple weeks, but thats ok better than walking around the neighbor hood half the night,no other side affects. Any drug or vitamin store,8 bucks for 60 tabs.
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Title: Re: New to CH.com but not the new to the "Beast" Post by Mike NZ on Oct 25th, 2010 at 2:48pm
Hi Tony
Tony_C wrote on Oct 25th, 2010 at 10:54am:
Have a read of the oxygen info on the left. Many who have found oxygen not to work have found it does when following these instructions. Hopefully you'll be able to use it. Tony_C wrote on Oct 25th, 2010 at 10:54am:
Always see your doctor before changing the dose you're taking of medication. There may be something in your medical history or other drugs you're currently taking that might impact what you can change. |
Title: Re: New to CH.com but not the new to the "Beast" Post by Tony_C on Oct 26th, 2010 at 5:52pm
Thanks for the help. I tried 9mg of Melatonin last night for the first time. I had no problems getting to sleep and had no weird dreams. I did have a CH attack at the same time as normal. I popped up and drank a Redbull 5hr and smoked a cig. 10 minutes later I was able to go back to bed with the icepack and was sleeping 25 minutes after waking. Should I adjust the melatonin dosage for tonight or keep the 9mg for a couple of nights and see what happens?
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Title: Re: New to CH.com but not the new to the "Beast" Post by George on Oct 26th, 2010 at 6:02pm Tony_C wrote on Oct 26th, 2010 at 5:52pm:
You might consider staying at the same dosage for a couple nights and see what happens. For me, it takes a few days to a week before it starts to reduce the number of nighttime hits I get. Unlike some other folks here, it's not 100 percent for me--but I'll take fewer hits, anytime. ;) Best, George |
Title: Re: New to CH.com but not the new to the "Beast" Post by Tony_C on Oct 26th, 2010 at 6:11pm
Thanks George. That is what I was thinking also. Last night was definitely better than previous nights by comparison. The pain and duration were less. I will stay the same for a couple of days unless somebody else has input and good reasoning to change. :)
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Title: Re: New to CH.com but not the new to the "Beast" Post by wimsey1 on Oct 27th, 2010 at 11:50am
Hey Tony. I'm one of those who take 10-15mgs melatonin at night and it has helped a lot. Keep in mind a couple of things about melatonin, though. First, it requires B6 to metabolize so if yours doesn't come with that added ingredient you might want to include it in your daily vitamin regimen. Also, we've been warned against some bottles labeling as melatonin, when it's really not. Read the ingredients to make sure it is what it says it is. And try the O2 as suggested. Good luck and God bless! lance
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