Greetings and thanks for all the info so far.

I'm glad to know what I have because until I did I thought I was going crazy. I'm really glad my doctor diagnosed it right off instead of writing it off as migraines.

Last night was the first in more than a week where I slept without waking to the feeling of being shot in the left eye and having sulfuric acid poured into the wound. I'm not sure what I'm in for but now that I know what I'm dealing with there's some hope.

Long as you're still drawing breath, there's always hope! Like Jerry said, we're a nosey bunch. The biggest strength of this board is the combined real life experience of all of us. When you get a second, let us know what you're using for prevents and abortives, what has and hasn't worked etc.

And please read the "oxygen info" link on the left, then get it prescribed! Enjoying an impressive success rate on the board. 31 years of these and it's still my first line and most effective abortive. Welcome home.

joe

Here are the mainline treatments for CH:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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This may be a bit of a slog for you because it was written for M.D.s, but it's a good grounding in CH......

 
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]

I'm with Brew on the O2.... Most of us (about 70% of us) SWEAR by O2 -- it's our first line ABORT when the demon comes visiting.

BUT it has to be high flow rate (15-25 liters per minute) with a non-rebreather mask. The masks at the CH.com Store are great and worth the money (lots better than the disposable ones).

I'm in a very LONG cycle (it started in 97, but I'm expecting it to end any day now  ) so I go thru a lot of O2 tanks. I keep cafergot handy IF the O2 doesn't work (occasionally it doesn't, but that's rare). But it's been my lifesaver.

Get hooked up...

Hugs BD