Hi All
just like to introduce myself, up till six months ago i got these terrible headaches and didn't know what they where until my neurosurgeon told me what they where.
Just to give you a little more background I'm now 44yrs and i had my first episode when i was 18 so that's how long I've coped without any medication, in the first instance i went to the doctor but since the pain caused my teeth to ache he sent me to the dentist this is where the fun starts.
The dentist said i had wisdom teeth coming through and since there was plenty of room let them come through this is whats causing the pain, so that's what i thought for twenty odd years, until my dentist retired and i asked my new dentist why i was still in pain, to which he xrayed me and said i ain't got any wisdom teeth where the pain was, hey presto i was referred very quickly to the neurosurgery unit to be told i have CH's
I've been told and written up for verapamil,o2 and sumatriptan injections, I'm in the UK by the way.
On visiting the doctor she was reluctant to put me on the verapamil because it was unlicensed for this condition, she point blank refused to get me any o2, in fact told me to go the hospital if i needed o2, to which i said you try driving whilst in the middle of an attack
The last thing is i only have two shots of the sumatriptan at a time, I've never taken it and the silly season started for me last Thursday night, Friday night was the worst don't remember much after 8:15pm the pain was that bad it lasted for about an hour and i then fell as sleep till midnight.
i didn't take a jab at the time i don't know why but it was good job i didn't.
yep you guessed it the doctors don't do emergency supplies I'll have to wait till the middle of this week to get more, if i was a diabetic or had blood problems i could get emergency supplies, but if i wanted to throw myself off a bridge to get rid of the pain that doesn't count
Anyhow sorry for the rant I'm sat here with the only medication i know that works a full bottle of Rum and two shots of suma,the verapamil doesn't work, and I'm just waiting for my next one its been niggling me all day 
so what do i do next insist on the o2 change my doctor ??
i feel even if i asked for the suma tablet i wouldn't get them or do i just suffer in silence for the next twenty years mind you that ain't going to happen because I'll have drunk myself to death before then
Thanks for reading my post great site this first time today i've been on it, nice to know folk out there have the same issues

all the best Mike

Let's get you connected to your excellent support group and let them guide you around your health care system.

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This bit-and-pieces is from several UK messages and may give you some leads.....

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Giving you two medical journal articles to help you learn about CH so that you can use the information as a discussion tool re. treatments.

See the PDF file, below.

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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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I've never heard of the block to using Verapamil. Given it's long history of effectiveness and safety I would be questioning the doc's statement.

Here is a protocol, wide used in the U.S., for its use. Clearly, using an abortive and not along with a preventive is poor medical practice.

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.

Hope this helps; please keep us informed.....

Thanks for the replies guys some good info there, yep you right stay off the alcohol not good didnt help, got wacked again at 3:30am this morning, funny this was the first time i've ever used the sumatriptan injections, its works really well at aborting the onset infact to well down to my last shot until i can get more tomorrow.
going to browse through the posts latter as its 7am uk time now and i'm shattered off to bed for a bit