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                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Formal studies (and our collective experience) indicate that geneal neurologists have poor/limited training about headache. We urge, if at all possible, finding a headache specialist.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Understand that no matter how many web sites you explore, like this one, you: 1. are dealing with folks who are unknown to you ref. our educational background in medicine, the accuracy/worth of our comments/advice; 2. no such group is an adequate substitute for a well trained and experienced doc., 3. our passions about this-or-that treatment are not a measure of truth/validity. Again, need for a well grounded doc. Take our suggestions but get a good doc to be aware and in agreement.
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We can give you leads to good MEDICAL information if you ask specific questions and you mihgt start looking over some medical sites.
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PDF file, below.
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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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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Web site of one of the better headache docs in the Midest.

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

Hey! if it wasn't for women getting cluster headaches you wouldn't have been able to legitimately say that they were worse than childbirth!  I will have to get back to you on that one as i am yet to experience that one! I didn't hear it from any doctors, but i did notice it on the info sheet my GP printed out for me...also found many sufferers are/were smokers and I have never smoked...I must be rare 

Thank you for your help and support.

i have changed the settings on my profile to show i am in the UK - more specifically Northamptonshire. 

Glad that you identified UK because it changes my suggestion, obviously.

OUCHUK can advise how to by-pass your local doctors and move directly to a headache clinic. I understand you have a right to this move.

Based on multiple comments from the UK, such a move is important because local docs are notably lacking in training & skill treating headache.

Oh Hoppy, as I'm sure you know, surveys are like any other statistic!!! So many interpretations!

This was one of the biggest surveys ever done on many, many aspects of CH, here's a link if you're interested in that sort of stuff. The survey didn't attempt to determine tobacco's role in CH, strictly how many do and how many don't.

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

Joe

Thanks guys!
I signed up to OUCH straight away. Lots of help and support on there.

I was just wondering, how have cluster headaches affected your work? I have taken 2 days of one each week last week and will probably be off tomorrow as well I am getting stressed about it!