Verapamil has been a miracle drug for me and has stopped my cluster headaches.  I have been taking verapamil, dramamine and melatonin every night and this has stopped a brutal headache cycle.  But I feel like the verapamil is making me somewhat depressed.  (I am not complaining but don't particularly enjoy the feeling--but I would use it again in a heartbeat if my headaches started again but I wish I could go off it now, but I am too afraid the headaches will come back.  I have not had a headache in many weeks, but I sometimes get pressurey feelings on the left side like my head is not totally normal--but they are not twinges and they are not shadows but they are a feeling that my head is not normal if this makes sense.  Should I proceed with trying to stop taking verapamil? (This is the first cycle I have used it so any advice appreciated).  I hope everyone is doing well--you guys helped me so much maintain my sanity for a month of these brutal headaches.

I usually stop taking it after I have been PF for 2 weeks. Fortunately for me I have no side effects from it and just stop when I feel I can.  I'm currently on 650 mg a day and still get an occasional shadow but I'm not completely ready to stop taking it. Been in therapy for 5 weeks. Hope the cycle will be busted shortly!!

I taper off right now I do 3 am 2 pm I'll go to 2 and 2 then 1 and 1 and then stop. As I stated before I was 2 years without anything then about 5 weeks ago WHAM!! they just came back went on therapy right away and they are bearable.

There are no clear guidelines and most suggestions here is to taper off a "few" (2-4??) weeks after your last attack. But be prepared to get back on if attacks return--don't wait and see what develops.

In rare situations, folks with rapid cycles or very unstable patterns, may stay on Verap. 100%--but I know of only a couple of situations where that was needed.

You all,

Thanks so much for all your feedback.  It seems from reading here that it makes sense to taper off instead of just stopping abruptly.  Technically I think I have not had any head PAIN for at least 2 weeks--just weird pressurey feeling about every 3 days.  I do have a feeling of apprehension that since my cycles are usually 3 1/2 months how could I have gotten a break like this and maybe they will return but I will at least give it a try.  I really feel for those whose headaches came back when they tried to go off of it.  I am fearful mine will too but as others are saying it was a no brainer to go on the verapamil, because the headaches were way too ferocious this time starting out the cycle with 4 per night--one and a half hours of sleep--don't want to go back to that but my fingers are crossed and will try to taper off soon and let you guys know how it goes.  Good luck to all of you--I'monlyhuman, don't know if this helps but I did find that 12 mg melatonin and 4 dramamine per night along with 360 verpamil seemed to be a magic combination.  I tried benadryl also but found that although benadryl seemed to be working better intially it's positive effect was not long lasting over the course of weeks and it was the dramamine that seemed to really get me sleeping in combination with the melatonin (which I am really not sure how much if any positive affect melatonin had this time I would say very little) and verap that helped.  So I credit the dramamine and verap.  Hope this can help at all.

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Ditto

Souns like beasty may be done with you this go round, hoping that's the case Sue. You might consider lithium as your prevent next go round. I'm male, 51, about 190 lbs, my effective dosing is currently 1200 mg a day when on cycle. Blocks 60-70% of my attacks. Used to block close to 90% at dosing as low as 900 mg a day, but like with everything else, beasty seems to find a way around it!

Only side effects are you pee a LOT the first couple of weeks..it is a salt...and you get a little lethargy, nothing a cup or two of coffee doesn't take care of.

Joe

If you don't try Sue, you will never succeed!

Respect

Gary

Thanks Joe & Gary
Back on the meds
Had a little dance last night but 'he' aint going to get the better of me!!!
Sue

I used to use the oral cafergot too. In the earlier stages of CH, they built relatively slow, and the oral cafergot worked okay. Others have used the suppository form of cafergot as it gets in the system quicker. It's fallen out of favor as there are many more efficient treatments, without all the potential side effects!

Glad to hear the verapamil is giving you some peace, there's a reason it's the front line prevent as it works so well for so many. Have you had a chance to try 02 yet?

Joe

240mg of Verapamil is still a pretty low dose with 360-480mg being what is commonly needed to be effective with some people taking up to 1000mg.

When you tried oxygen at the doctors was it at a high flow rate (15lpm or higher)? Was it using a non-rebreather mask? Did you start it within a few minutes of the CH starting? If the answer to any of these was a no then that probably explains why it wasn't too effective.

I'm currently on 80mg Verapamil x3/day and it seems to be fairly effective, but the doc says I'm going to be on it for the rest of my life - even when I'm out of cycle.

Now I just need this cycle to end!  I haven't had a decent night of getting sloshed in over a month!   

Hey guys, I have not been on here for a while and did not know people were still posting on this thread.  Glad to see that it was a useful topic to bring up!
For an update, I am still on verapamil.  The weird pressurey feeling every couple of days never went away and I was too nervous to go off the verapamil.  Unfortunately about a week ago I began having more ominous twinges--some that would wake me up right after I fell asleep--weird--but no headaches.  Anyway I am taking my doctor VERY seriously when he said to wait 2 full weeks with no head pain/twinges/pressure.
Needless to say I am scared of the alternative which is going back to basically nonstop CHs at night.  BUT I will say when this bottle of verapamil runs out I will probably give it a try to see if I can get through the night.  I have turned into a wimp!  Maybe I will try sooner to stop taking it.  Anyway, very interesting to read what people have written.  Verapamil has helped me tremendously but no doubt it has extended my cycle--doesn't matter to me though as the alternative was horrendous.