Hi Dave

Welcome to the forums where you'll learn more than you though ever possible about CH and how to deal with it effectively.

Verapamil is a pretty good CH preventive, but it isn't 100% perfect, so you'll always get some CHs that get through. For these you need an effective way to abort the CH so you don't have to ride out the CH but kill it off quickly.

What I and most others here use is oxygen at a high flow rate (15lpm - higher is better) via a non-rebreather mask. With this setup, at 25lpm, I can kill off my CHs in under 5 minutes, which is a lot better than the 45-90 minute torture sessions I used to have. You can get oxygen on the NHS in the UK.

Read all about oxygen via the link on the left.

Imitrex injections (the pill form is too slow) can also kill off CHs in minutes, but they have a few more side effects compared to oxygen which has none. You can get these on the NHS too.

Red Bull or similar energy drinks with both caffeine and taurine drank at the start of a CH can drop the intensity and duration.

Read up about how high dose vitamin D3 is helping many, myself included - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

And read and read and read. You'll learn a lot and ask all the questions you can think of.

There is also a UK specific group - Ouch UK - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

They have UK info and a phone help line. Make sure you also tap into their knowledge and skills.

So many of the folks who write from the UK convey the difficulty of finding a local doc who has any knowledge/experience treating Cluster. Often the treatments offered are just wrong or outdated.

Work with your support group (address given) and ask them about a law which, I understand, gives you the right to move directly to a headache clinic for care, by-passing any local docs.

Print the PDF file, below, and give to your present doc. May give him some guidance for the most current good practices

For your information, print this entire artricle:




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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This site has some good material but it takes some patience to explore it--but written by one of the better headahce docs.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
============
Expore the buttons, left, starting with the OUCH site, for some good material.

You will find many of your questions/issues regularly explore on our pages and so regular reading here will help.

Welcome!

Hi! I'm also from the UK and although I've only had clusters for 2 years have found this site amazing.  The amount of really useful info and experience is great.  It's also making me realise how lucky I am.  I live in north Yorkshire (the rural part) so to get diagnosed after so quick by my local doc is pretty good going.  The best thing about the site is you are not alone!  I've just started on prednisolone today 12 x 5mg for 14 days and have had a pain free day!  Am also on verapamil but breakthroughs have been fairly serious even on 480mg so by my reckoning by the time my pred tapers off I should be nearing the end of my cluster period anyway.  I really feel for anyone who has suffered as long as you without a diagnosis.  Keep in touch and check out all the great info on here.

hi dave, im also in the uk and have suffered for about 7 years now with cluster headaches, i found verapamil made me feel very sick and didnt helpp my headaches at all, neither did sumitriptan or oxygen.... ive been reading about deep brain stimulation.... looks very promising!