Hello everyone. I figured it was time to say hi and thank you to all. I've been suffering from CHs for 17 yrs. In the past 5 yrs or so they have really taken a turn for the worse lasting about 2-3 months and 1 hr and 15 mins religiously.

A few yrs ago my wife (DP80) found this website and we have learned so much from you all. So Thank you all.

Today I went and got some imitrex injections, prednisone and verapamil. Not sure how great they will be yet.

I've been treating my CHs with a million aspirins (very bad) melatonin, energy drinks, peanuts, oats, ice packs and plenty of water.

Sometimes this crazy combination works but not enough to keep me away from the neurologist.

For many yrs I just put the Dr off for lack of insurance and for being hard headed but enough is enough and I had to go. I got imitrex tablets but they dont reach the problem on time.

So... thats my story. Again thank you all for sharing so much info. Hope not to see you soon.  But I will....

I thank her all the time. I can't believe many would be nearly as supportive specially when yrs ago we didnt even know what I had other than headaches that visited me yrly

JustNotRight wrote on Sep 4^th, 2009 at 6:31pm:



Most experts, including Prof P. Goadsby, recommend the regular release Verapamil. That's also the experience reported mostly on this board.

                

Brew wrote on Sep 4^th, 2009 at 8:24pm:



which is the Verapamil SA?

I saw a massive improvement moving from larger doses of SR, 2/4 times per day to many smaller doses regular release for the same total.  ( I ramp between 360mg to 720mg as needed)

The effectiveness of this approach was reported here for years, but I shrugged it off and trusted my old Neuro to take care of me. What a mistake. Be sure that you are not using the "sustained release" formula. It won't hurt you, it just won't work as well.

Now I'm proactive in my treatment and have my life back.

Marc

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.
=======================

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).

WOW I love you all! So much research and information. I feel like I'm back in school! Thank you so much

Lawrence wrote on Sep 4^th, 2009 at 8:32pm:

Lawrence - If you're going to slice and dice quotes, you gotta make sure you're attributing to the proper person. I never said what's stated above.