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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Any ideas?
        
(Message started by: oceangirl on Nov 18^th, 2007, 5:26pm)

Title: Any ideas?
Post by oceangirl on Nov 18^th, 2007, 5:26pm

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.

Title: Re: Any ideas?
Post by Redd on Nov 18^th, 2007, 5:36pm

Quote:

I have also seen energy drinks suggested but I don't drink caffiene.

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?

Title: Re: Any ideas?
Post by Kevin_M on Nov 18^th, 2007, 6:19pm

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

Title: Re: Any ideas?
Post by StrangeBrew on Nov 18^th, 2007, 6:21pm

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?

Title: Re: Any ideas?
Post by Bob_Johnson on Nov 18^th, 2007, 7:38pm

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)
================
Treatment guidelines from Europe

------
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.)

Title: Re: Any ideas?
Post by Kevin_M on Nov 18^th, 2007, 9:06pm

Quote:

Bob Johnson Posts: 1500

Thanks Bob for being here and all the 1500 posts milestone. :)

Title: Re: Any ideas?
Post by Guiseppi on Nov 18^th, 2007, 10:54pm

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

Title: Re: Any ideas?
Post by Beastfodder on Nov 19^th, 2007, 5:38am

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.

Title: Re: Any ideas?
Post by sandie99 on Nov 19^th, 2007, 10:49am

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

Title: Re: Any ideas?
Post by JDH on Nov 19^th, 2007, 12:46pm

on 11/18/07 at 17:26:07, oceangirl wrote:

I have also seen energy drinks suggested but I don't drink caffiene. So I am out of ideas.

And I don't eat dog crap but if someone told me it would stop the pain I think I might reconsider ;)

Title: Re: Any ideas?
Post by StrangeBrew on Nov 19^th, 2007, 2:32pm

on 11/19/07 at 12:46:55, JDH wrote:

And I don't eat dog crap but if someone told me it would stop the pain I think I might reconsider ;)

Maybe your pharmacist could stuff it into gelcaps for you.

Title: Re: Any ideas?
Post by JDH on Nov 19^th, 2007, 2:45pm

on 11/19/07 at 14:32:29, StrangeBrew wrote:

Maybe your pharmacist could stuff it into gelcaps for you.

::)

I'm just sayin' the pain must not be that bad if you're not willing to try something different.

Title: Re: Any ideas?
Post by StrangeBrew on Nov 19^th, 2007, 3:15pm

on 11/19/07 at 14:45:51, JDH wrote:

::)

I'm just sayin' the pain must not be that bad if you're not willing to try something different.

I knew exactly what you were sayin', knucklehead! And I was just tryin' to make you laugh. ;;D

Title: Re: Any ideas?
Post by thomas on Nov 19^th, 2007, 5:54pm

How about magnesium and melatonin?

Title: Re: Any ideas?
Post by annar on Nov 19^th, 2007, 9:12pm

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

Title: Re: Any ideas?
Post by sandie99 on Nov 20^th, 2007, 11:52am

on 11/19/07 at 17:54:44, thomas wrote:

How about magnesium and melatonin?

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

Title: Re: Any ideas?
Post by oceangirl on Nov 21^st, 2007, 1:14pm

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.