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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Verapamil works for how long???
        
(Message started by: bigboltrules on Jun 15^th, 2004, 10:37pm)

Title: Verapamil works for how long???
Post by bigboltrules on Jun 15^th, 2004, 10:37pm

hey guys, since I started taking Verapamil 180mg 2 times a day, I have been CH free... So far.. I started taking it right after my last cycle, and right now is when I SHOULD be getting some pretty bad ones... Anyone here use this and have it work in the long term??? I read some other posts, and I get really worried about it not working... I have had CHs now for 9 years, im 22 now and I just want to be CH free... 13 is a rough age to get CH... Anyways, please let me know how long this works for people, and if it keeps working for most... I know that I will have to incress my dose at some point.. but I REALLY want to get an idea on how long... Thanks!

BoLt

Title: Re: Verapamil works for how long???
Post by kimmiedawn81 on Jun 16^th, 2004, 12:26am

I've had these headaches for about the same amount of time and I'm also 22. I was put on Verapamil 180 about a yr and a half ago and I'm in my second cluster since being put on it. I only take it once a day, but it doesn't seem to do much for me. I'm very glad that it is working for you though. I hope that you stay pain free for as long as possible.

Kim

Title: Re: Verapamil works for how long???
Post by OneEyeBlind on Jun 16^th, 2004, 7:08am

The higher doses of verapamil seem to have helped some. Just smile and skip a cycle !

Title: Re: Verapamil works for how long???
Post by Bob_Johnson on Jun 16^th, 2004, 8:39am

There is no evidence that we develop tolerance to Verap so that it becomes less effective over time. That does not mean, however, that changes in dosing may be needed from cycle to cycle--for reasons we still don't understand.

I know one lady who has been on it continuously for 10-years or more only because she is afraid to stop using it. But she hasn't had an attack in all these years. If her case in any example, appears to not be harmful and her doc supports her.

Title: Re: Verapamil works for how long???
Post by bigboltrules on Jun 16^th, 2004, 9:05am

on 06/16/04 at 08:39:38, Bob_Johnson wrote:

I know one lady who has been on it continuously for 10-years or more only because she is afraid to stop using it. But she hasn't had an attack in all these years. If her case in any example, appears to not be harmful and her doc supports her.

Thank you, that is what I was looking for... my last cycle, I started on Veramamil and it stopped it.. I stopped taking it because I couldnt afford it and I was fine, but then about 2 months ago I got two ch in about a 4 hour period, so I dropped the cash and got it... Since then.. CH free!! Alot of the time on these boards, people post that things DONT work for them, but I just wanted to get an idea if this was going to work for a while... Thank you for the hope ;;D

Title: Re: Verapamil works for how long???
Post by don on Jun 16^th, 2004, 9:56am

Quote:

There is no evidence that we develop tolerance to Verap so that it becomes less effective over time.

Goadsby, on the other hand, suggests terminating the verapamil 2-3 weeks after the cycle to maintain the effectiveness the next time it is used.

Quote:

There is no evidence that we develop tolerance to Verap so that it becomes less effective over time.

Where did you find this info ?

Title: Re: Verapamil works for how long???
Post by Racer1_NC on Jun 16^th, 2004, 10:41am

It worked great for me for 3 years.......then POOF, it stopped helping.

Bill

Title: Re: Verapamil works for how long???
Post by Superpain on Jun 16^th, 2004, 4:06pm

I don't take anything between cycles. Why would you? Unless you're chronic or have extremely close cycles, why be on drugs you don't need?

I'd wait and make sure I was going into cycle before starting a preventative.

But I sure as hell wouldn't wait to suck on some O2 or maybe give myself a jab in the arm with a headache.

I was on 480mg per day btw...

Title: Re: Verapamil works for how long???
Post by don on Jun 16^th, 2004, 4:16pm

Quote:

I don't take anything between cycles. Why would you? Unless you're chronic or have extremely close cycles, why be on drugs you don't need?

BINGO !!

Title: Re: Verapamil works for how long???
Post by 5-string on Jun 17^th, 2004, 12:15am

My last cycle,I went on it. It pulled me out of the attacks. The shadows hung around,but no attacks. The shadows started going away and I stopped taking it. 3 weeks later I got slamed out of the blue with no warning.Full on attacks.I went back on it and it pulled me out again.
I learned that just because I was feeling better did not mean I was ready to abort Verapamil. And I'm eposodic.
Just thought I'd share that with you.
Take it easy,
...Mark..

Title: Re: Verapamil works for how long???
Post by k9n8 on Jun 21^st, 2004, 6:56pm

That is my experience as well. I have only been on verapamil for about 4 months, I had an immediate positive response, knocking kip10s down to kip5 at the most, BUT I have stopped taking it 2 times and have been throw right back into a more persistant CH set. I dont want to take a pill for the reset of my life, but I will if I have to, and as of now I will only stop taking it in month or so just to see if it brings another round of fun. I will continue to test this every couple of months just to make sure, but my doctor says keep taking it, dont stop.

Title: Re: Verapamil works for how long???
Post by Kris_in_SJ on Jun 22^nd, 2004, 10:33am

I was put on Verap 4 yr. ago for CH cycle. Amazing, but after 5-6 days of only 120mg, cycle halted. They kept me on it all this time. When this cycle started though, I had to go up to 480mg/day before it started to work - 2 weeks of hell before that happened.

My doc recommends weaning down dosage after my CH have been gone for 6-8 weeks. Otherwise it might not work at all for next cycle.

Kris

Title: Re: Verapamil works for how long???
Post by mustang on Jun 25^th, 2004, 8:37am

I am chronic and been on 640 mg of verapamil for about 7 mo. No major CH a few shadows that is when I try to taper off. If I go done to 480mg I get them back. I had a complete heart examine by a specialist and he said all is fine, the high does does not hurt me , stay on the dosage.

Title: Re: Verapamil works for how long???
Post by don on Jun 25^th, 2004, 10:45am

Stay on the dosage UNLESS you are episodic.

The word from Goadsby is that it is best to stop the verapamil when you are out of cycle.

Title: Re: Verapamil works for how long???
Post by mustang on Jun 25^th, 2004, 2:46pm

I think you meant stay on if you are chronic. I have no cycles my CH's come all the time day and night.