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        New Message Board Archives >> 2003 Posts >> I got some new meds today
        
(Message started by: Frank on Mar 13^th, 2003, 10:13pm)

Title: I got some new meds today
Post by Frank on Mar 13^th, 2003, 10:13pm

I have been getting hit real hard since early December. Old reliable verapamil isn't stopping them, O2 won't kill a Kip-10 if I wake up when it is already above Kip-7 or 8... Maxalt MLT won't either. Ten days ago I did the six day prednisolone trip... didn't work either. I noticed the attacks have changed in the past ten days though... now I feel shadows all f*cking day long... didn't get that before... just the nightly Kip-10. So now I'm really f*cked? Today I started 25mg per day Topomax. 25mg doesn't seem like much... but maybe as they say size doesn't matter. :'( What's the usual dose of Topomax for CH?

Title: Re: I got some new meds today
Post by Karla on Mar 13^th, 2003, 11:31pm

My neuro had me on 200mg of topamax that did nothing for my chronic clusters. I was sent to a neuro in the Headache/Pain clinic. He tried me on 400 mg of topamax. I still got no relief from it and I had terrible mental confussion with the higher dose. The dr. said I could have gone up to 600mg. So 25mg is a very very low dose.

Title: Re: I got some new meds today
Post by Jim R on Mar 14^th, 2003, 8:48am

Hi Frank,

I too was on Topamax for a very short time - 200 mgs./day. It did nothing for my CH's but sure as hell spaced me out. Your dose is extremely low.... Like you my Verapamil and O2 don't always cut it. I've been on lithium 1200 mgs. day and that ddid work the first year, didn't last year, but I think my neuro is trying me on it again next cycle. Clonodine, a BP med. is helping me somewhat now, but with a lot of breakthroughs...

Good luck bro.

Jim R

Title: Re: I got some new meds today
Post by Bob P on Mar 14^th, 2003, 9:11am

From the OUCH Library:

In an open-label study of topiramate, Wheeler and Carrazana evaluated 11 patients with episodic cluster, 3 with chronic cluster, and 1 with cluster-tic syndrome. They treated the patients with 70-100 mg/day of topiramate. Thirteen of the 15 (87%) patients achieved remission. Two patients did not tolerate topiramate because of fatigue. Headaches remitted 1-3 weeks after beginning topiramate (mean, 1.8 weeks).

Title: Re: I got some new meds today
Post by jimash on Mar 15^th, 2003, 5:38pm

I took Topamax for about 110 days.
50 mg. seemed to be enough to stop the headaches cold.
I went up to 150 mg. That was intolerable for me.
I was well and truly spaced out.
Sex was out.
And my knee blew up and I had to move my kneecap around by hand.
Then I stopped sleeping.
So I quit it. 3 weeks ago.
All the side effects stopped.
Except for a week of weird prodromal symptoms I am free of headaches and because I have not had one in a while it seems like I can fight them off drug free for the moment.
It is nice to see that in fact with no pain and no drugs I can eat and sleep and function ok.
I am staying stress free and alcohol free and seeing how long this will last.
My longest remission. So it's not all bad.
Jim

Title: Re: I got some new meds today
Post by jonny on Mar 15^th, 2003, 6:03pm

Jimash,

reading your posts it seems you get some kind of negitive reaction from any drugs you take.

Why dont you try not taking any and stop berating meds on this board so newbies dont freak out.

Just cause shit dont work for you dont mean it wont work for others and you know this.

You bagged on my 80%, you wish you could have that.......LOL

..............................jonny

Title: Re: I got some new meds today
Post by jimash on Mar 15^th, 2003, 6:28pm

Jonny you are probably right. I will sit down.
My experiences and feelings may be unique.
But I was not trying to rag or bag.
Just the facts.
Actually I was implying that despite my negative reactions
there may be some LASTING good from a course of Topamax.
Jim

Title: Re: I got some new meds today
Post by Frank on Mar 15^th, 2003, 10:05pm

I have read the manufacturers recommended prescribing information for Topomax (keeping in mind that its FDA approved labelling is for prevention of seizures). Since it isn't specifically approved for CH... I'll go with the 25mg. for a week... then ask the neuro to increase it to 50mg or 100mg. Also don't want to piss off the new neuro.... and at the same time I want some relief NOW. Damn I hate politics!

Title: Re: I got some new meds today
Post by amber on Mar 16^th, 2003, 11:23am

The thing about top. is that you have to start slow. 25 is awfully slow but surprisingly, if you look up prescribing info on the web, that is the recommended start area. I started with 50 one week, 100 the next, 150, and then 200. I'm getting off it now cause it does shit for my ha's but it was worth the try anyways.

Good luck and I hope it helps!
Amber