Good that you are being active in learning how to care for ourself. But the first step is to get a solid diagnosis. You say the doc in the ER clinic "guesses" you hae Cluster but this is not a simple diagnosis. There are a number of conditions which appear to be headache but which mimic cluster.
The problem so many face is not having access to a doc with training & experience in this complex area of medicine. Encourage you to explore locating a headache specialist to get a clear, firm Dx. (This is NOT any general neurologist--most of them have discouraging little education in headache disorders.) Regardless of who you see, directly ask about his experience with Cluster--don't assume!
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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.
5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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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.
6. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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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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A related issue: when Cluster first shows itself, the symptoms are often unclear, changing in intensity, location. This means it's a diagnosis which cannot be firmly made for, perhaps some weeks or months. Requires working with a good doc, being patient as you both watch for any evolution of the symptom picture.
These cautions don't mean you can't start learning even as you wait for a final Dx. Read here, explore buttons, left. Look at:
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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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
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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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