Our collective experience is that findin a doctor with knowledge/experience of treating complex headache disorders is the major problem. It does not follow that a neurologist is qualified for they receive remarkably little education in headache in school.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

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

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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.
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Start learning. This article an excellent starting point; the buttons (left) open up a broad range of materials and there are many internal links to explore. Start with the OUCH site as well organized.
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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 best overview articles I've seen. Suggest printing the full length article 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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The second title has the advantage of presenting  complex issue in an organized manner. The biggest problem for the new person is trying to make decisions about treatment before they have a basic understanding: this book is a good entrance.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Read everything posted by Bob_Johnson.

                    Potter

Hi gema . . . and thanks for being a supporter.

  First, we all hope it's not CH . . . but if it is you're definitely in the right place for info/caring/sharing. 

  Ditto the above . . . you need to rule-out other possible causes that can be detected with various tests (CTs, MRI, etc.), which most of us have had.  One of the frustrating things about CH is that these tests will come back "normal" . . . if it is CH.

  How long is it til his appt.?  Are most of his attacks at night or does he have day hits too?  Multiple attacks daily?  What is average length of attack?

  The worst part (for me) about CH before I had a diagnosis (13 months) was the not-knowing . . . What is it? (CH pain gets so severe you KNOW it has to be life threatening), When will the next one come?, How long will it last?, How bad will it be?

  When I came here (2/02), after my wife found this site for me, I was having 6-8 attacks per day, sometimes 3-5 per night, Kip 5-9, most 30-45 min, and the occasional 1 1/2-2 hr horror.  This place gave me the info/ammo to take to my doc and finally get some control over this malady we call "the beast".

  If indeed the doc agrees that he has CH. . . .DO NOT LEAVE HIS OFFICE WITHOUT A SCRIPT FOR OXYGEN!  02 is the first-line abortive for most of us and can work in minutes.

  If he consumes alcohol . . . STOP!  For most (not all) of us alcohol is a major trigger . . . a real beer or shot of brandy will trigger an attack for me in minutes, also exhaust fumes, some chemical fumes . . . . we're all different . . . . .triggers (or meds) don't necessarily affect everyone the same way.

  As a supporter, don't be offended if he can't stand for you to touch him during an attack . . . and don't freak if he starts banging his head on the wall . . . know that it will end. 

  Read, read, read . . . and visit the supporters board for your own support.

  Be Safe,   PFDANs

     Richard