Are you using any med for prevention of attacks?  We would regard that as an essential part of any treatment program.

Do you have access to a doctor who specializes in treating headache? We have found that the level of kowledge/skil among general docs is often inadequate to deal with a disorder which is more complex than is generally appreciated.

Print the PDF file, below. It's a useful tool to use in discussing treatment options with your doctor.

Verapamil is the most commonly used medicine for prevention.
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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.

Our experience with Verapamil: 1. The article I sent about rather high doses during active periods has become a commonly used pattern among our members. Low doses are too often ineffective. 2. We usually keep using it for a few weeks after attacks appear to have stopped. There is no reason to not take it even when you are not having attacks and, do so, appears to prevent a recurrence. Some people who have very short periods between cycles will use in 100% of the time.

If you doctor is willing to try you on the higher doses mentioned in the article, let us know so that I can sent some material about the need to do regular EKGs. Very high doses are associated with a heart problem but not of such seriousness that, usually, the Verap. has to be stopped. But, the doc needs to be aware.

The benefit far exceeds the side effect risk.

When I was reading your description, Paka, it sounded more to me like the way Prednisone is administered. It's a Prednisone taper which starts out high and then gradually reduces in order to do just what you said: break up the cluster pattern. I've never heard of using verapamil that way. I understood verapamil takes time to build up and to be effective must be maintained. Curious. Have you tried prednisone, or some other steroid? They can be quite effective. God bless. lance

Don't forget to read the PDF file I mentioned in my first response to you.

Paka, steroids can be scary if you take too much for too long. But we don't as a rule cross that line. As an intermediary preventative they can be very helpful. Not always but sometimes. It's one more arrow in our quiver. Along with a good preventative and effective abortives, like O2 and energy drinks. God bless. lance

you got lucky to have found a doctor that seems to have at least heard of CH, and seems to care about your pain.  Believe me, thats hard to come by!!!