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wip5150 CH.com Veteran Offline I have tired head Posts: 119 Naperville, IL Gender:	Re: Verapamil info Please Reply #25 - Oct 16^th, 2009 at 3:42pm In cycle, I'm at 540mg daily (180mg 3X daily). Out of cycle, I'm off the stuff. For me, it's really been quite a miracle drug after many years of just dealing with the cycles. I'll take the plumbing problems over the feeling of an icepick in my eye stabbing me any day!
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CH

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Re: Verapamil info Please
Reply #26 - Oct 21^st, 2009 at 10:30am

My husband took Verapamil a few years ago, and I seem to remember it helped, but don't remember the details. However, at the time, I knew very little about CH. We are going to the doctor today for the first time in over 5 years for these since an episode has started again. Is there reason to take the Verapamil when not in an episode if the episodes typically only happen for him once every 1-3 years?

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Re: Verapamil info Please
Reply #27 - Oct 21^st, 2009 at 4:03pm

I've recently undergone a planned Verapamil therapy trial.

My consultant started me on 80mg three times a day for two weeks. Then I had ECG and once GP had looked at it and said OK, then I went up 80mg per day (i.e 320mg in week 3). then another ECG at end of week 4 until I got to 720mg per day and the ECG showed some rhythm change - but GP happy and we went on to 960mg per day. That was the limit the consultant wanted to try and although I had some ectopics, it was fine. Trouble was it had no effect on the Cluster!
That said for many it helps a lot. Just make sure your medic keeps an eye on you for cardiac changes and it's a very good drug to try. Best of luck with it.
Andy

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Kevin_M

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Re: Verapamil info Please
Reply #28 - Oct 22^nd, 2009 at 6:51am

CH wrote on Oct 21^st, 2009 at 10:30am:

My husband took Verapamil a few years ago, and I seem to remember it helped,

Is there reason to take the Verapamil when not in an episode if the episodes typically only happen for him once every 1-3 years?

Taking the verap was for the purpose of preventing CH hits while in cycle. When the episode is over, gradually tapering off the drug a couple weeks after would seem to put him back in the state where he was before the cycle, Ch pain free. If unaffected by Ch during this off time, it wouldn't be needed preventing something that is not going to happen.

Consult your doctor on this about gradual increases when cycles start and tapering off afterwards, if he recommends staying on verapamil, I'd inquire of the purpose.

Incidently, I taper incrementally up or down as fluctuations in Ch occur as chronic, in order to use the minimum amount needed. When decreasing, results for me are felt about 48 hours after. Had an EKG last week.

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« Last Edit: Oct 22^nd, 2009 at 7:08am by Kevin_M »

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Bob Johnson

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Re: Verapamil info Please
Reply #29 - Oct 22^nd, 2009 at 2:57pm

SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: Verapamil info Please Reply #30 - Oct 22^nd, 2009 at 3:43pm Kevin- Thanks for this tip! -Joni "When decreasing, results for me are felt about 48 hours after."
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Marc

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Re: Verapamil info Please
Reply #31 - Oct 23^rd, 2009 at 8:47am

Bob Johnson wrote on Oct 22^nd, 2009 at 2:57pm:

SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Well controlled studies or not, I can tell you that there is a huge beneficial difference for me.

I've had a chance to experiment with the two formulations for the last 13+ years and the regular release version provides FAR better results for me.

I would recommend that people who get "weak" results with SR, switch to regular release before giving up on Verapamil.

Marc

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CH

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Re: Verapamil info Please
Reply #32 - Oct 26^th, 2009 at 10:31am

Thanks for the tips and responses. The doc did prescribe 120 mg Verapamil 2x/day (not SR), 9 day taper of Prednisone, and we also picked up Taurine supplements at GNC since he was finding that energy drinks helped some. He has not had a CH since he started the meds, but did feel the pulsing with no pain one night. I'm a little concerned that when the Prednisone is over, he will have more headaches. But I guess we'll wait and see.

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Kevin_M

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Re: Verapamil info Please
Reply #33 - Oct 26^th, 2009 at 6:40pm

CH wrote on Oct 26^th, 2009 at 10:31am:

but did feel the pulsing with no pain one night. I'm a little concerned that when the Prednisone is over, he will have more headaches. But I guess we'll wait and see.

May be good to schedule a follow-up appointment for soonafter ending the pred, to check progress or if adjustments may be needed.

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Doug Rosskamp

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Re: Verapamil info Please
Reply #34 - Nov 13^th, 2009 at 4:52pm

I have been taking Verapamil for 3 years, 480mg, once per day. If I do not take it headaches come on quickly. We have tried many medications and treatments and the verapamil works great. I am currently in my sixth week of this current episode and the past few days appear to be signaling the end of this cycle...hopefully.
I take Imitrix shots which are a God send! Normally, but not always, 2-3 minutes after a shot and I can feel it melting away. What a great feeling. In January I went through this for 8 weeks. I ran out of Imitrix and had to buy it resale. What a shock when I was told $350.00 per box! I do not have insurance nor a job for 8 months now so I get a shipment from GlaxoSmithKline every 2 months. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Thankfully there are organizations out there willing to help.

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