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.

Welcome to the asylum!  I've known what I have now for almost 30 yrs, and I'm still going crazy! :D

Please take the time to tell us a bit about yourself.  How long have you suffered, episodic or chronic or don't know, what meds have you tried adn what worked or not, etc.  We're rather nosy you see, and with out the input it is hard for us to advise you.  That is really what we are here for.  Others have helped us, and we are just paying it back/forward.

Glad you had a PF night last night.  Hope tonight is as good, and it is just the beginning of life without the beast, but if not we are here.

Jerry

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

Right now all I'm doing is taking 1/2 an Immitrex pill with a 16oz rockstar when I feel one coming on. It starts between my left eye and the bridge of my nose, my body temp rises quickly then I start feeling it in my teeth.

Four years ago I got sober from drugs and alcohol. Shortly there after my doctor put me on Effexor to help me stabilize a bit in early recovery. I stayed on it until a couple months ago. Sunday before last I was blasted out of a dead sleep to a pain I dont need to explain I'm sure. A few days later it peaked at a 7. I thought maybe I had some dental issues and went to see my dentist describing the pain I was having. He explained the symptoms of TMJ and cracked/sensitive teeth and basically said the pain I was having doesnt fit the profile.

Last Monday I saw my doctor. Thanks to the poor chap from Middleton, ID on Extreme Home Makeover, she knew exactly what I was talking about. Of course the first thing she did was insist that I quit smoking and then gave me a scrip for Immitrex telling me she'd give me one for something stronger (narcotic) which I turned down. She also suggested O2 but not really knowing what I was in for I turned that down too.

The only demon visits I can really count on are around lunch and midnight. The only time I havent had an attack has been in the morning which I'm extremely grateful for. I'm an early bird and get a lot done in that time. After 2:30, I could care less. As near as I can tell I've never had an attack that ranked more than a 7 but thanks to Rocktar and Immitrex, they rarely last more than 20 minutes.

In my research I've seen Effexor mentioned as a preventative. Has anyone tried this? Everything I've read about the stuff suggests that once you go on it, you dont get off it. This has lead me to wonder if the onset of CH might have something to do with that. My doc wants me back on the effexor and I'm inclined to go along with her. I'll take those side effects over CH any day of the week.

Anyway....thats my story so far.

Here are the mainline treatments for CH:

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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: 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]

Back the truck up. Call her and tell her you've reconsidered the script for O2. Minimum 15 liters per minute through a non-rebreather mask. You won't be sorry.

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 :-*