Hi, my name is Clint, I'm 33 and have been suffering from this condition since my early 20s.  My remissions back then varied so much that I had no clue what was going on.  Now my remissions are at 1 year +or- a month or 2 each cycle.  Sometimes I get lucky and can knock them out with 2 Aleve at onset if I catch them at the very 1st acute sign, but when that fails I rely on Imitrex injections.  I'm currently in cycle with no Imitrex, believe it or not, may be a God send, it's what lead me here. I'm married with a 9 year old step son and my  baby boy will be 2 in December.  I work in corrections, not a very conducive enviroment for someone suffering the hell we all know too well. Anyone here able to give me any advice on how not to use all my sick days as I wait on my Imitrex?

Read the PDF file and print out the whole article which follows.
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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]

  Thanks for the info so far.  I'm on Topamax, but still fighting the beast way too often.  I keep Mt. Dew and Chocolate handy for the caffeine, but usually doesn't seem to help.  I will try the energy drink, I don't know why I didn't think of that.  O2 therapy doesn't seem to be my thing the few times I've been connected at the hospital, it hasn't seemed to have any effect.  Now that I know this support group is here, I'll be reading as much as possible, and if I can ever do anything for any of you, I'll do all I can.
Thanks again, Clint

I'm afraid Mike is right - the bozo laden medical profession is way behind regarding O2 and CH.

This site is actually the main place CH'ers find out about how to use O2 in a really effective manner, and so many of us have found great relief using O2 as outined in the oxygen info link, after the old and dumb low flow/rebreather method, still universally clung to by ignorant medical professionals, failed us.

You've been given some great advice, I'll re stress 2 points. Oxygen needs to be used correctly or its worthless. I average about 6-8 minutes per abort now. The keys:

A high flow regulator, at least 15 LPM, preferably 25 LPM or better.

A Non Re Breather Mask.

Get on it at the first sign of a hit.

If Topomax doesn't appear to be doing the trick as a prevent look into Verapamil or Lithium. I use Lithium at 1200 mg a day while on cycle. It will block about 60% of my hits.

Glad you found us!

Joe