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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Verapomil – To try or not to try http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1266695350 Message started by Bob from Poulsbo on Feb 20th, 2010 at 2:49pm |
Title: Verapomil – To try or not to try Post by Bob from Poulsbo on Feb 20th, 2010 at 2:49pm
Just curious as to what the more experienced folks here think about this scenario:
I started to get episodic CH in my 30’s (I’m 54 now). For the first several years it kicked in routinely twice per year and always lasted exactly 2 weeks, and was very severe for about 12 days, then milder the remaining 2 days, and then was gone. In recent years it has changed to where it’s kicking in only every two years or so, but with longer cycles (about 6 weeks). I am currently in my FIRST cycle where I actually know that this is CH… like others, I had always gone on the assumption/advice that this was all about sinus issues (even had surgery about 6 years ago). This current cycle has been a bit different, in that most of the attacks have been kept to a maximum of around KIP 6 or 7 (with only a few going higher). I am using O2 to treat the attacks now, and so far I’m feeling that it’s helping. On the other hand, it could just be the fact that I know what I’m dealing with this time and that in itself helps keep me calmer than I otherwise would be. I’m also not following all the sinus-infection treatments that past docs have always tried with me (and avoiding pain meds). My pattern this time has so far been the first time where every few days I actually skip nightly attacks, or at least only have one or two. This greatly improves my daytime experiences, as my face isn’t getting quite as beat up feeling as it always had in the past. I’m about four weeks into this cycle now. My wife, bless her… is one to always strive for “more”. She has read about Verapomil, and just yesterday convinced our doctor (he’s just a GP, but did consult with a headache doc) to prescribe some (in conjunction with Prednisone). He has issued a prescription for 120mg/day, along with a course of Prednisone. I am extremely hesitant to go down the Verapomil route just yet, given some of the anecdotal stories I’ve seen about it possibly prolonging (or even cronic-ifying) peoples’ cycles. I’m guessing/hoping/praying that I can sail through the remainder of my current cycle to its normal conclusion in another week or so with the O2 alone (I’m also trying to drink loads of water, and of course avoiding things that I know trigger me). I also have some Lidocaine spray which helps ease the sinus irritation. The thought of inadvertently extending this cycle is particularly unsavory to me, especially since I have a cruise booked for late March. I’m curious as to peoples’ thoughts on this, particularly from those who have direct experience (good or bad) trying Verapamil. |
Title: Re: Verapomil – To try or not to try Post by seaworthy on Feb 20th, 2010 at 4:52pm
I wouldn't go through a cycle without it.
720 mg per day. |
Title: Re: Verapomil – To try or not to try Post by anthony g on Feb 20th, 2010 at 5:05pm
im towards the end of my cycle now 720 mg a day!
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Title: Re: Verapomil – To try or not to try Post by Bob from Poulsbo on Feb 20th, 2010 at 6:49pm seaworthy wrote on Feb 20th, 2010 at 4:52pm:
Do you take it by itself, or in conjunction with Prednisone? |
Title: Re: Verapomil – To try or not to try Post by seaworthy on Feb 20th, 2010 at 8:51pm
Always with a pred. taper
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Title: Re: Verapomil – To try or not to try Post by Joni on Feb 20th, 2010 at 10:01pm
I have had CH for 25 years.
I have used Verapamil for the last 2 cycles. My cycles are still 8 weeks long as usual. But the shadows are terrible and I never had them before. I cannot say it is the Verapamil, though, as CH can change over time. I don't know the answer, but I am afraid not to take it. It does help. Everything is a gamble, but the bottom line is what I will do for pain. |
Title: Re: Verapomil – To try or not to try Post by DennisM1045 on Feb 21st, 2010 at 8:41am
The choice to go prevent free is a very individual one. We all have to do what works for us.
However... ;) If you start the pred taper without the verapamil it may put you in a very bad situation when the taper is gone. For some folks, the taper kills the cycle. End of story. For others, it just really pisses him off. It can be a rough ride. So if I was starting a pred taper, I'd start the verpamil too just to be safe. Good luck either way. -Dennis- |
Title: Re: Verapomil – To try or not to try Post by Bob_Johnson on Feb 21st, 2010 at 9:28am
Headache. 2004 Nov;44(10):1013-8.
Individualizing treatment with verapamil for cluster headache patients. Blau JN, Engel HO. Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018). 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. ========== And PDF file, below..... ![]() |
Title: Re: Verapomil – To try or not to try Post by TcRoc on Feb 21st, 2010 at 1:23pm
It has been a life saver for me currently on 360mg a day and may up it
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Title: Re: Verapomil – To try or not to try Post by neuropath on Mar 6th, 2010 at 2:22am
Dear Bob,
In my humble opinion, being a chronic (and taking Verapamil daily) and reading that your cycles only occur once every two years for 6 weeks, I would suggest that you take a course of prednisone and then deal with the remaining cycle, if it isnt concluded by the time you taper off the steroids, with O2. I would not introduce Verapamil to your "diet" unless absolutely necessary. Prednisone on the other hand once every two years for two weeks is a very manageable therapy that is (unless you have any counter-indications to it) very risk-free. Although there is no real evidence to suggest that it morphs your cycles, there is evidence that Verapamil has an impact on your cardio-vascular system. 120mg really is a pointless dosage and you would have to go to dosages of at least 480mg a day or more to make an impact, taking it at the start of the pred treatment, for it will take 2 weeks to have an effect. At this dosage an EKG is required in advance. Not knowing you of course, it strikes me as unnecessary for someone of your age to introduce a drug like this to reduce (and probably not eliminate) the CH attacks for a 4 week period, if you have an arsenal of abortives at hand that will do the job and if you will have 2 years of PF periods thereafter. Although I havent tried myself, there are numerous Episodals that have tried Kilowatt3's all herbal recipe, which apparently has aborted episodes and have left them seemingly entirely PF. I am not advocating the treatment but am advocating alternatives over chemicals where possible. Maybe worth reading his posts and forming your own opinion. I hope this helps and that you will be PF soon and for as long as possible. Best |
Title: Re: Verapomil – To try or not to try Post by NancyB on Mar 7th, 2010 at 10:35am
I agree with Batch, you might ask him about his lowering your blood ph with lemonade too. Especially if your half or more through your cycle. Sounds like by the time you get any relief from the other meds you'll be done anyway.
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Title: Re: Verapomil – To try or not to try Post by boxcorner on Mar 18th, 2010 at 6:03am
As always, another excellent post by Bob_Johnson. I recommend the PDF attachment as required reading. Objective rather than subjective. It should be elevated to READ THIS status.
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