Just a hello,
I have'nt been diagnosed but i was entering my symptoms in the NHS.UK site and i was directed to Trigeminal Neuragia, this was'nt exactly what i suffered but i saw "other headache" and CH was listed there. I never heard of it before.
I must add that my Doctor had said for years that it was muscular and that my shoulder muscle was pulling on the tendons in my neck which in turn was causing the pain.....the pain in my head.
I couldn't make anyone believe me how much pain i was in, i told the Doc, friends and family that i could predict when i would get my headache, they said doing that might bring on my headache. I started to write down everything i ate thinking it might be an alergy and through this discovered my headaches had a pattern.
The pain starts 3.30 am and i get waves of pain that last 30mins at a time, it lasts all day then, 8 days later i get the same. This happens for a month and stops. Then in a couple of months is starts again.
It feels as if there is a spear going through the right side of the back of my head and pushing my right eye out, the top of my head above my right eye and my right inner ear feels the same. my neck and right shoulder kill me too.
I went to the Doc and virtually pleaded with her to consider Cluster Headaches and refer me to a Neurologist..."please, please i cant stand this pain anylonger."
The Doc has refered me to a neurologist(18 week wait) and  has given me Sumatripan 50mg and told me to take 1 three times a day starting 3 days before i think i am due to have a headache. My headache is due Monday and i am on the second day of my medication.
I'm dreading it....
thanks.  Alan

Your local support group is an excellent source of help:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Confirm with them, that you have a right to obtain direct referral to a headache clinic, by-passing the usual referral routine. (Given the, apparently, poor knowedlge of many of your local docs, so often reflected in messages like your's, getting to an expert would be a good step.)

Using sumatriptan as a preventive has been tested and found to be ineffective in U.S. studies.

See the PDF file, below. This will give you a guide to the most currently used meds for Cluster. Docs who are not working from this list would be suspect in my book.

As a preventive, following is a commonly used approach in the U.S.
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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.