Take the quiz on the bar to the left of the screen called cluster quiz.  You don't give much of a description of your symptoms - but take the quiz.  If it is CH, you should have a better idea after taking the quiz.

Also - Imetrix in pill form does not normally work fast enough to help and 50mg 1/2 the normal dose given.  If the quiz makes you think you might have them - and your doctor rules out other things, ask him to try the injectable form of Imetrix - normal dosage is 6mg/0.5ml - should work in 5 to 15 minutes depending on how soon after the CH starts you take the injection.

Good luck - for your sake, I hope it is something else.

When you have a family history of headache making a good diagnosis becomes more complex. IF you are starting to have Cluster, it's very common for the symptoms to vary in quality, degree, location, duration often for months before settling down into a stable picture. So, takes some patience before a doc can make a solid call.

Many neuros lack skill/training with Cluster. If you have the option&$ seek a specialist.
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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. 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 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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Generally, imiterx pills are the least effective form of this med for Clusters--too slow acting. But before you can get into treatment, it's essential to have a good Dx. There are many disorders which mimic Cluster and so sorting thru the potentials is essential.

IF this turns out to be Cluster, it will become important for you to learn about them. We're talking about a condition which will continue for years but which, with good treatment, need not become an impossible burden.

While seeking a doc, start learning. Buttons, left, starting with OUCH. Then,


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
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This one is a bit deep but file for future use:


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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It's possible for one person to have both episodic and chronic cluster, chronic usually developing after some time of have episodic. But the "rules" with this disorder are rough approximations--experience varies widely amont us.


Best to you!

Bill and Bob have given you excellent advice. Liooking back I realize my ch started in my late teens and didn't really establish a pattern until my 20s. An accurate diagnosis is key to an effective treatment regimen. Starting with a headache specialist neuro now can save you a lot of pain.if it is ch its not the end of the world. I am 52 and they have not killed me yet!

Joe