Hello all; I wanted to introduce myself quickly and ask a question immediately because it's been bugging me the past few days. I'm Zac, I'm 20 and I'm a college student at a small liberal arts school in Wisconsin. My headaches have been a relatively recent phenomenon (the past 15 months or so). I've seen tons of neurologists and no one knows exactly what's going on. They're kind of like CH, sometimes, but sometimes they're not. They aren't cyclical... they've been going strong since they started 15 months ago. As so many of you are unfortunately familiar with, they are excruciating and disruptive and horrible. I believe that currently my neurologist has diagnosed them as Paroxysmal Hemicrania but they last so much longer than those do, usually. My headaches generally respond to triptans (Zomig currently) and I was on Indocin until it caused an internal bleed. My question is whether or not anyone personally has any experience or knows anyone with TMJ. It's never come up with my doctors before, but I finally noticed my jaw clicking and I am a musician (horn player) who unfortunately plays with a lot of tension in my face. I've heard and read that TMJ can cause SERIOUS headaches that frequently get confused with other sorts of HA conditions. I'm definitely not looking for a diagnosis but I'm really curious if anyone has any insight on the matter.

Hello again and thanks in advance,

Zac

Welcome to the chaos of Cluster! <sigh>

TMJ has been a suspect and rejected as causal for Cluster.

If at all possible, line up a headache specialist--not a general neurologist. Studies of medical education have revealed just how limited is education in headache even for neuros. Our collective experience is full of stories about it taking years to find a skilled doc so, learn rather than repeat our stories.
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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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It's not uncommon for symptoms in a newly emerging case to be unclear, wandering, changing, just not fitting into a coherent diagnostic picture. Hence, the value of a specialist.

The probability is that, at you age, you will be Dx with Cluster or a common variation. However, the medical literature is discussing more situations which are called, "cluster-like" headaches. These disorders give every appearance of being Cluster but are, in fact, unrelated disorders, some of which are quite serious. Another reason for working with someone who is aware of this potential in terms of the diagnostic work-up.
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I'd strongly encourage you to not get into efforts at self-diagnosis and self-treatment. Stay focused with a good doc and only after you know what you are dealing with can any consideration be given to the variety of treatments which are available.

Bottom line: we cannot Dx your situation; it's unethical for us to start offering treatments, etc. when none of us know exactly what's going on.

During this early period you'll discover what most old hands have learned: patience is a survival skill.
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But you can explore on your own.




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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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 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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Print the PDF file, below. It will be a tool for discussing treatments with any doc.

I thought I should reply to all this and specify some things. I appreciate all the links but should have been clearer; I have been to see a few neurologists and am currently with a headache specialist. I'm not even so concerned about TMJ being causal as much as contributing. My worst areas of pain are at least slightly different from most people with CH (though of course that doesn't rule them out) which is why I'm so curious about TMJ. I feel most of my pain in my jaw and my temple on the one side. The headache specialist has tentatively called my headaches Paroxysmal Hemicrania but he said he's really not sure because my symptoms (other than location of pain) are extremely variable. The biggest problem at the moment is I'm at school in WI and while I have a neurologist (not HA specialist) to touch base with out here, my HA specialist is in NYC, near home. I have another appointment with him in about two weeks as well as an appointment with Thomas Jefferson Headache Center in Philadelphia for some very involved 5-hour affair... has anyone been there for their headaches?

Jefferson is first-rate. Glad that you have such rich options for consultation & treatment...