Many here are on a higher dose of verapamil than you are and have been for years, myself included.  To date the only occasional side affects I have had from it are mild ankle swelling and constipation.  Both can be dealt with by lowering your salt intake and adding fiber (fruits and veggies) and more olive oil in your diet.

Take it slow but heed your Doc's advice, if you start getting any side affects discuss them with your doctor.  If that happens there are other things you can try.

Hang in there!

During most of my cycles, I've done well on 240mg twice a day.  During the last two, I've had to increase to 360mg twice a day.  I still tend to shadow, but after a week at the higher dose, I've had no breakthrough clusters.  My only side effect has been constipation, but I'm hypertensive so actually benefit from the added dose.  Constipation is easy to deal with next to a kip 8-9.

As already said, follow your doc's advice.

Best Wishes, 

Kris

You all thank you so much for putting my mind at ease.  (I don't why I am such a worry wart--that is how I always am and then being in cycle raises my anxiety level I guess--nice combo lol!)  It is really good to hear from people who are on the medication and that it doesn't sound like you have had any bad side effects.  Also, yes, I did need a reminder of what the alternative is--NOT good.  The drug has really helped me a lot, and my doctor is the only one who has helped me so I will listen to his advice.  I love sleep!  I am getting too old for all of the wake up (or any) from the headaches. (Even at 30 it was easier to handle--had an easier time getting back to sleep.)  Thanks you all for being there--all the information gained here has been priceless.

I recall, when I was about 10 or so, my mother and her generation talking about their fear of breast cancer. They often totally avoided exams--self or by their doc--lest something be found: As if ignorance would protect them. Today, this is attitude is stil killing men who avoid exams for prostate cancer even though it's the second largest killer of cancer deaths.

The long term issue is to learn how to cope with the unknown vs. being paralyzed with fear. Please see:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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The immediate issue of dosing. Verap has a long record of effectiveness and safety. The protocol for its use is widely used and, as you can see from its date, has been around for some time, so this is not a experimental approach. Why not print it out and use it to discuss your concerns 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.

one more voice - I used to be wary of Verapamil but now am a fan. Can deal with constipation and hand tremors.

The only question I have for the group is what about rebounds when coming off Verapamil? Any experience there?

thanks. I think I am going to lose it. Generally have cycles every few years, lasting 4 months at most. This cycle lasted for 5 months, and then when I finally tapered off Verapamil two weeks ago - I was hit with an inredibly stressful week. And the CH came back (it seems).

I do so hate this beast.