Hi and welcome

Your verapamil dose of 240mg a day is pretty low with most people needing 360-480mg a day, so you may be able to increase that but only do so under direction of your doctor.

Are you working with a headache specialist, not just a GP or a neuro? CHs are not exactly common and many doctors have very little experience of how to deal with them effectively.

It's probably not possible to know what brings on a new episode of CHs. Some people go years between them, others every spring or autumn (fall), others at random. So don't blame yourself for missing a dose of verapamil or a change in sleep patterns.

Don't be scared of visiting this forum in case it makes your CHs validated. Here you'll be able to learn a lot, lot more about them and how best to deal with them. It's knowledge that gives you power over them, taking control back of your life from CHs.

Everyone here either gets CHs or supports someone with them. So we totally understand what it's like to get them.

Have you tried using oxygen to abort CHs using a high flow rate (15lpm+) via a non-rebreather mask? This allows me to kill mine off in about 5-6 minutes, which is a life changer.

Although you've tried imitrex nasal spray, have you tried the injection version?

Keep reading and asking questions, people will try to answer any you have.

Since you are here, we'll assume you have overcome your "bliss" period and are seriously seeking. <bg>

Verap dose is rather too low. Print this protocol out and use it to discuss some changes with your doc.
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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.
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Ditto for the PDF file, below. Time for a new review of your treatment plan, which may include changing to a headache specialist if your present doc doesn't have a solid background in treating headache.

I used to get brand name Imitrex, but recently my coverage by default uses generic sumatriptan, which doesn't seem to work for me. It seems as though the company line is that the generic works just as well as the original, but that hasn't been the case for me (and some others as well, according to doctor honesty). As of yesterday, I was able to finally receive Imitrex again, after special order. I was also able to get o2 at home as well, so I must admit I feel better prepared for attacks.

A couple notes to pass along from my neurologist, fo whatever they are worth. First, I was told that anything above 360mg of verapamil has not been shown to be effective. Also, she debunked the mass water theory, saying that regular hydration is important, but that she does not believe great volumes will be any more effective. As you can see, she is pretty conservative.

Baker78 wrote on Dec 30^th, 2011 at 10:02pm:


Pretty conservative is an understatement.  I say she is ignorant on the treatment for CH's.  This is not surprising as many of us have to be a self advocate and actually educate our neurologists because they are misinformed, only remember old literature, etc.  This is not a common headache disorder, thus minimal time/effort involved to keep updated on evolving effective treatment.

Knowledge is Power and you will most likely need to eduate your neurologist from the best CH resource available, right here at your fingertips.

See a thread titled "Verapamil Dosage" under the board Medications, Treatments, etc.

You will find some of the most recent posts on this thread "Verapamil Dosage" to include neurological literature supporting higher Verapamil dosages, including personal experiences from me and others regarding Verapamil.

"Water, water, water"....very helpful for many w/ CH's, and can't harm you that's for sure!