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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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Sadly, your experience is too often reported to us. Two responses: work with your excellent support group on dealing with your system.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Second, I understand that you have a legal right to be referred to a headache clinic, by-passing local health providers. The OUCHUK folks can guide you.
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While you are taking these steps, start educating yourself by exploring the buttons, left, starting with the OUCH site; ditto for your UK group. If you have specific questions about Cluster, post them and we can send some basic medical material.

Fortunately for you, you are coming along at a time when there are some helpful treatments available and a growing sophistication in knowledge. But patience!
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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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Print the PDF file, below. These are the standard meds used to treat Cluster.

Welcome to the board, and yes, sadly, your tale is a bit too common on your side of the pond, as well as on ours!

Lance and Bob have started you out with great advice. Knowledge is your most powerful tool against the beast, use these boards to educate yourself, and then work with your doc to form a long term treatment plan. Great to have more media on board to help get the word out.

Joe

Get in contact with the OUCHUK group, at once. Really need some guidance both re. meds and working with your healthcare system.

For some good basic learning this manual  worth printing:

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.

Thank you for your reply, Stephen. Now things may be making a bit more sense. To begin with, the triptans are a great abortive. O2 is better, in high flow with a good nonrebreather mask. High flow begins minimally at 15lpm, but is much more effective at 25lpm or more.

The steroids (maybe prednisone, or methylprednisone) are a solid intermediate Rx. Generally given in a two or three week taper, starting rather high, and gradually tapering down. They can, and have, interrupted some cycles successfully, but often become less effective as you move toward the lower doses. They tend to be used to provide relief while a longer term preventative builds up in your system. Things like lithium, verapamil, topamax, etc. They may have different names in the UK, but are the same meds.

There are no diagnostic tests for CHs, just tests to rule out other diseases that mimic CHs in symptoms. I understand your reluctance to get on meds long term, but you have to weigh that reluctance against the pain and disruption these things cause. Hope this helps you determine a good course of action. God bless. lance