I just wanted to provide the group with an individual review of my use of verapamil to treat my cluster headaches. I have suffered from cluster headaches for approximately 8-10 years. Mine a relatively seasonal with 2-3 clusters a year with which I will get daily headaches for a 1 month time frame.

I also have outlying headaches outside of the cluster periods that are triggered from foods, alcohol, stress, etc.

I have been taking verapamil twice a day for the past year and a half and have been pretty happy with it. It by no means has eliminated the headaches but has definitely made them more manageable. The outlying headaches occur less frequent and are less severe since I have been on Verapamil. Also during the off cluster periods I can take more liberities enjoying a few cocktails, wine, beer, etc. without worrying about triggering a headache.

The severe clusters though still remain but I have enjoyed what the verapamil has done outside of those periods.

Hi there,

What dose Verapamil are you on? Do you use oxygen to abort your CH's?

Caron

I am on 120mg 2x a day

I recently started Verapamil (120mg 2x/day) as well and within about 2 days this virtually stopped my headaches from occurring.  Same thing occurrred last year when my cycle started.  Tried a glass of wine the other night, but unfortunately that brought one on.

You are getting good results with a low dose (fo CH). If you are satisfied where you are fine, but you migh consider that a modest increase would resolve more of the pain.
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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).

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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.

Great to hear the verapamil is working well for you. If either of you do NOT have oxygen yet, read the oxygen info link on the left and consider giving it a shot.

I use lithium as my prevent and my results are similar to yours with verapamil.  By no means a cure or a 100% block, but really reduces the number of my attacks. When one does break through, I can usually knock it out in less then 10 minutes with the oxygen.

Joe

Hey Joe, just curious why Lithium instead of Verapamil?

Probably because verapamil doesn't work for Joe. I'm just guessin'.

When I first tried Verapamil I was in my early 20's, this was early 1980's. I now realize the dose was probably a bit low, I'm thinking back it was like 120 mg a day. The sudden difficulty with maintaining an erection was devastating to a young, virile, newly married man like myself!  :'( On top of that after a week or two it didn't appear to be having a positive effect on my CH. Some of that may have been directly related to my age and the fact I wanted a pill I could take and imediately be cured!!!!

Anyway, when Verapamil didn't work my GP sent me to a neuro, who started me on the lithium. He combined that with the Prednisone taper, so it was like an instant "cure!"  Once I went off the prednisone and was just on the lithium, the "cure" evaporated, but the lithium still blocked a large percentage of my attacks so I've stuck with it!!!

So a really long way of repeating Brew's answer. ;)

Joe

For the cycles I used Verapamil I followed Bob's plan posted above.  It worked to eliminate 90% of my attacks.  What was left was easilly dispatched with Oxygen.

-Dennis-

Joe, thanks for clarifying, I had no idea it had that side effect. 

No problem. I don't know if it's a universal side effect, but does appear to be a common one with men on the board who use it. ;)

Joe

Guess I was lucky my last cycle 5 yrs ago when I was on up to 480 mg for several months

Guiseppi wrote on Mar 23^rd, 2010 at 11:34am:

No problem. I don't know if it's a universal side effect, but does appear to be a common one with men on the board who use it. ;) Joe

Hence my comments about bone loss in another thread. ;)

Sadly Brew, soft humor is lost on many! ;D

Joe

So based on experience of MALE episodic sufferers, is Lithium the next best (traditional med) preventative of choice? 

Well funny you ask, according to history, lithium was supposed to be more effective for chronics then it is for episodics. That being said, over 20 years of using it as an episodic and it's still working great. Sadly it's far more trial and error then exact science finding the best prevent.

Joe

I hear ya Joe, the trial and error is understood.  My last cycle which was about 5 yrs ago I used a Pred taper and Verap at 480mg, worked great!  However, after reading about the erection issues, not interested in chancing that loss if there is another preventative that is equally effective as Verapamil.  Think I will start reading up on Lithium in preparation for my next cycle.

LasVegas wrote on Mar 23^rd, 2010 at 3:18pm:

I hear ya Joe, the trial and error is understood.  My last cycle which was about 5 yrs ago I used a Pred taper and Verap at 480mg, worked great!  However, after reading about the erection issues, not interested in chancing that loss if there is another preventative that is equally effective as Verapamil.  Think I will start reading up on Lithium in preparation for my next cycle.

Just in the FWIW category, Verapamil doesn't have that effect on everyone.  No problem for me at 480mg steady with bursts of 720 as required.

It's hard to determine who will be let down.........

Marc

Marc wrote on Mar 23^rd, 2010 at 4:09pm:

Just in the FWIW category, Verapamil doesn't have that effect on everyone.  No problem for me at 480mg steady with bursts of 720 as required. It's hard to determine who will be let down......... Marc

That's because Marc is a man's man. ;)

"Let Down"........damn..........I gotta give you that one Marc!!! ;D

Marc, I hear ya pal, and most likely will go back to the Verap while using a Pred taper.  However, should I have that issue, I want knowledge to prepare for other preventative meds that may be as effective as Verapamil.   

Brew wrote on Mar 23^rd, 2010 at 4:17pm:

Marc wrote on Mar 23rd, 2010 at 4:09pm: Just in the FWIW category, Verapamil doesn't have that effect on everyone.  No problem for me at 480mg steady with bursts of 720 as required. It's hard to determine who will be let down......... Marc That's because Marc is a man's man. ;)

Yeah, right...........Bragging days were a long time ago. It's just a chemical thing that hit some guys softer than others.

I will say that getting hammered with K-9' and K-10's doesn't do a lot for the libido........