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Topic: Any ideas? (Read 594 times) |
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oceangirl
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I was wondering if maybe someone had any suggestions. I see people have suggested verapimal and topomax. I tried to take these medicines about a year and a half ago but had reactions to them. Verapimal made my blood pressure too low and topomax made my hands and feet numb. The oxygen seems to work sometimes but not others. I have also seen energy drinks suggested but I don't drink caffiene. So I am out of ideas.
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Redd
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Re: Any ideas?
« Reply #1 on: Nov 18th, 2007, 5:36pm » |
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Quote:| I have also seen energy drinks suggested but I don't drink caffiene. |
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I really don't mean to be glib about this, but with the overwhelming help these energy drinks provide to so many people, it might be time to rethink the caffiene. If it were to help why would you NOT try it?
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Kevin_M
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Re: Any ideas?
« Reply #2 on: Nov 18th, 2007, 6:19pm » |
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Managing clusters with a preventative is always something to keep looking for, apparently those two mentioned were not comfortable with you, but...
Make sure you are using 100% oxygen, 12-15Lpm with a non-rebreather mask or a Clustermasx if you can get one. Keep breathing a little longer past the relief stage. Just covering the bases here, better methods, better results. OUCH oxygen info page.
http://www.ouch-us.org/medications/oxygen/o2info.shtml
Melatonin before sleeping has helped some, working up to 12-15mgs if you have to has prevented night attacks.
Ice helps, there are some suggestions also in the first thread that is locked to the top of this meds and treatments category.
There are alternatives.
Prevention is a goal, here is a list of meds from the OUCH website.
http://www.ouch-us.org/medications/medications.htm
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| « Last Edit: Nov 18th, 2007, 6:26pm by Kevin_M » |
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Brew
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Re: Any ideas?
« Reply #3 on: Nov 18th, 2007, 6:21pm » |
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I'm with Redd on this one - if you can't tolerate any side-effects, you're going to have to put up with the main effect of the disease. Everything's a trade-off. Which way is my life more tolerable?
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Bob_Johnson
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Re: Any ideas?
« Reply #4 on: Nov 18th, 2007, 7:38pm » |
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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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Bob Johnson
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Kevin_M
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Re: Any ideas?
« Reply #5 on: Nov 18th, 2007, 9:06pm » |
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Thanks Bob for being here and all the 1500 posts milestone. 
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Guiseppi
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Re: Any ideas?
« Reply #6 on: Nov 18th, 2007, 10:54pm » |
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If you haven't tried lithium yet, and aren't afraid of all the stigmas that go along with a "psyche" drug, you might want to give it a shot as a prevent. For dosage comparisons I'm 47, male, weigh 190. I take 1200 mg a day of lithium while on cycle. I'm episodic, typically 2 X a year, spring and fall, 8-12 weeks worth. I've had cycles last as long as 8 months and have stayed on lithium for that long with no significant side effects.
It takes about 10-14 days to reach a level in your bloodstream that it's effective. Many on the board have had success with it so it's certainly worth consideration. Good luck.
Guiseppi
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Beastfodder
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Re: Any ideas?
« Reply #7 on: Nov 19th, 2007, 5:38am » |
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You've my sympathy - hated some of the side effects of stuff I've been prescribed in the past.
Give the O2 the best chance it can have with a non-rebreather mask like the clustermasx.
For me alternatives now mean I don't have to put up with the likes of verapamil etc. Only thing that's come close to solving it, first time in about ten years I've been through Autumn without CH (so far). If you don't get the cycle you won't need the 'nasty' meds.
I've also started regular cardio exercise (running) no less than three times a week. No idea if it's had any effect on CH but feel better for it.
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O2 and clusterbusters - naturally
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sandie99
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Re: Any ideas?
« Reply #8 on: Nov 19th, 2007, 10:49am » |
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I know that feeling about not wanting to use caffeine. I don't drink coffee, I won't touch soft drinks with it.
But quess what? Drinking Red Bull/taking caffeine tablets help me with ch the best. Less side effects, quick relief. I respond badly to many meds (my BP went down to the level of fainting with verapamil) and I've tried plenty of them. Caffeine-taurine combo helps me.
It's one thing if you cannot stomach caffeine or have some medical reason not to give it a shot. But if you simply don't want to... That's one I gave up along the way; getting back to normal PF life meant more.
I know that caffeine does not help everyone, but it's worth trying. Have one energy drink the second the hit begins and see if it helps.
Lots of PF days,
Sanna
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JDH
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Re: Any ideas?
« Reply #9 on: Nov 19th, 2007, 12:46pm » |
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on Nov 18th, 2007, 5:26pm, oceangirl wrote:| I have also seen energy drinks suggested but I don't drink caffiene. So I am out of ideas. |
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And I don't eat dog crap but if someone told me it would stop the pain I think I might reconsider 
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Brew
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Re: Any ideas?
« Reply #10 on: Nov 19th, 2007, 2:32pm » |
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on Nov 19th, 2007, 12:46pm, JDH wrote:
And I don't eat dog crap but if someone told me it would stop the pain I think I might reconsider
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Maybe your pharmacist could stuff it into gelcaps for you.
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JDH
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Re: Any ideas?
« Reply #11 on: Nov 19th, 2007, 2:45pm » |
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on Nov 19th, 2007, 2:32pm, StrangeBrew wrote:
Maybe your pharmacist could stuff it into gelcaps for you. |
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I'm just sayin' the pain must not be that bad if you're not willing to try something different.
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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Brew
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Re: Any ideas?
« Reply #12 on: Nov 19th, 2007, 3:15pm » |
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on Nov 19th, 2007, 2:45pm, JDH wrote:
I'm just sayin' the pain must not be that bad if you're not willing to try something different. |
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I knew exactly what you were sayin', knucklehead! And I was just tryin' to make you laugh. 
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thomas
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Re: Any ideas?
« Reply #13 on: Nov 19th, 2007, 5:54pm » |
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How about magnesium and melatonin?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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annar
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Re: Any ideas?
« Reply #14 on: Nov 19th, 2007, 9:12pm » |
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Im on Topamax and its working fine for me. In fact, my feet are tingling right now! Im going to go eat a banana and hope it goes away, if it doesn't, i'll eat another one and walk around a little. Eventually it will go away. If it really bothers you, ask you doctor for a potassium supplement.
Also, the O2 works for me, and like the others said, if the caffeine is just a diet choice, then it's time to reconsider, at least for as long as your in your cycle. I just try to remind myself that this is all temporary. good luck
reg
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sandie99
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Re: Any ideas?
« Reply #15 on: Nov 20th, 2007, 11:52am » |
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on Nov 19th, 2007, 5:54pm, thomas wrote:| How about magnesium and melatonin? |
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Thomas is correct; magnesium can help: when I first added magnesium tablets to my daily routine, one tab at the time of the hit actually aborted it. I noticed back at my chronic days that NOT taking magnesium every day at an impact on my head; I got a lot more painful hits. Try it!
I've noticed that simply drinking ginger ale can also help; in my case it gives me relief when I'm shadowing. It doesn't help with the hits, though.
Best wishes & PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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oceangirl
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Re: Any ideas?
« Reply #16 on: Nov 21st, 2007, 1:14pm » |
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I was just wondering if maybe someone had any new ideas I hadn't heard that is why I posted. I don't drink caffiene but I would be willing to give it a shot. If the pain wasn't that bad I wouldn't even be having this discussion. I was just wondering what other ideas were out there. I appreciate the ideas people gave me.
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