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Headache, in general, is a far more complex area of medicine than is appreciated. That you don't have a doc who knows what to do suggests the first step: find some skill. The alternative is, like far too many folks, to spend years struggling with a disorder which can be controlled, with appropriate knowledge.
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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
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On-line screen to find a physician.
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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.
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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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IF you are stuck with you present doc, the question shifts to: is he open to receiving good medical info which we can offer. Many of us have had to educate our primary care doc so that they could treat us. Not the best approach but, with a good, open working relationship, it works. Might try by print out the PDF file and give to you doc as a "discussion" tool re. treatment. His response will be telling.
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Educating yourself is critical so that you know when you are being treated well.
PDF file, below, is the latest evaluation of commonly used meds for Cluster and if doc is not using, it signals an issue to attend to.
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Cluster headache.
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(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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Explore, buttons, left, starting with the OUCH site, and these links:
A couple of 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
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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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Search under "cluster headache"
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Crank up your printer. Author, and the associated site, is excellent source; one of the better headache docs in the mid-west.
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ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic
Free, 50-page. Covers all major headache Dx and
related issues.
In a PDF file.
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He has two books, one for M.D., one for us. The second one is worth a buy and read. Believe titles on listed on this site.
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Given the vulnerability of your work situation, would suggest that you use the most aggressive meds to both reduce/prevent attacks and those which kill an attack.
There are a number of alternative treatments which you will find mentioned here but my bias is for those with solid, published evaluation data (considering the work situation).
Until you have developed an effective, stable treatment plan--working with the doc--I'd encourage you to not try multiple treatments at the same time. Confuses any effort to determine what mix is best for you.
Read stuff here as much as you can and ask specific questions.
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