Hi there.

I'm Aaron (25yo) and I was diagnosed with CH yesterday. I am in the direct middle of an attack that I have no idea will end.

Maybe I should start with symptoms or something?

It's always focused on the left side of my head. The sensation is akin to someone taking a 3 foot long rod entering through the temple and out my eye. This rod, as it were, is then pushed and pulled through my skull for the better part of an hour while there is someone in front of me hitting the end of one side with a hammer repeatedly with no rhythm whatsoever.

My triggers are barometric pressure, the Equinox, Daylight Savings Time and general season changes. They hit like clockwork at 3am. I take a sumatriptan as soon as I can and just rock back and forth on my couch for an hour or two until I can slog back into bed and pray for sleep.

When I first got these headaches, 2 years ago, I was always at odds with friends and coworkers and doctors about what was wrong with me. "wow how you can you move while having a migraine?!" "Oh it's just a headache, take 2 advil and stop being such a wuss." "Don't come back to my office again until you've cleaned up from your pill addiction." (I hate pills more than anything else in the world)

I just want this to stop. I want to know that people out there, other than CH sufferers and relatives, realize how far away from a typical headache it really is. I want to know what I can do to stave off these attacks as much as possible. I'm slowly losing my grip on reality and I notice that no one around me either notices it or probably even cares because to them it's "just a headache"

Last week I hit 4 straight days where I was kip9 and there have been many days in the previous year where I've hit kip10++ The only reason I'm still here is because I fear death and nothingness more than these CH's... barely.

Thanks for your time and attention.

We can't diagnose you condition nor, I hope, would you be willing to accept a diagnosis from strangers.

Given our location I expect you should have no prolem locating a headache specialist. Much preferred over a general neurologist, a group which has little education in complex headache disorders.

Important to not only diagnose the specific headache type you have but to exclude a number of disorders which mimic Cluster.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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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As you search for a doc, educate ourself on Cluster.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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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Print the PDF file, below. These are the major meds which you should he hearing about from a skilled doc.

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Aaron, who diagnosed you, and what was the treatment plan? I ask because as Bob points out headache symptoms are complex. From your description it sounds as if you were given a pill form of sumatriptan. If that's the case, it is way too slow for CHs. When someone is seen by a headache specialist with at least some knowledge of CHs, we generally see a regimen of preventatives, intermediates and abortives prescribed. A full frontal attack on the pain. It doesn't sound like that's what you're getting. Blessings. lance