A year ago I found this site and cried.  Not alone after all, not crazy, not suffering from a basketball sized brain tumor...just normal, everyday cluster headaches! LOL  
For nearly nine years, without drugs for 7...what was I thinking? Just annually, around Thanksgiving into January, pacing, headbanging, crying, clutching, desperately searching for a pressure point that would help.  Whenever I would FINALLY get the courage to go to the doctor (I hate them, hate pills, they have no answers, just "try this"), the cycle would end and I'd forget about it.  Then the beast would return...
Two years ago, I finally went, Doc prescribed Imitrex...and after reading the "potential" side effects, was afraid to take it.  Then last year, it hit again, and I used the spray and it more or less worked.  So, this past winter, it hit again, and the spray kept working...and then I ran out and then they wouldn't refill and what a *^&(%% fight I had to put myself, Doc and Medco through, and finally they authorized unrestricted access....more or less.  Doc also put me on Verapamil, which seemed to help...UNTIL
April of this year...it started again!  Shocked the heck out of me, since I usually get those blessed 10 months off.  So, today I finally go to a real live neurologist, thinking, maybe I really do have a brain tumor.  So he said, "have you ever been CTscanned..." I said no and that was the end of it.  After hearing me describe my symptoms...he concluded that I too was a clusterhead.
So here's the real irony.  While sitting in his waiting room for 45 minutes, I feel an attack coming on.  I sort of start to panic, knowing that I'm in a strange place and have to drive.  Finally, I'm called in to see him...and he gets to see first hand what's happening to me.  What p...ed me off, he didn't immediately volunteer any meds.  But as we're talking, he says he "may" have a sample for Zomig, which he says has worked for some of his patients.  Lo and behold, the attack was abating in under 5 minutes.  So, guess what I'm switching to tomorrow!
He also prescribed prednisone.  A little worried about that one...I remember some of the issues with that.  But, we'll see.  He also discussed oxygen.  I'll hold off on that if I can.  Sounds cumbersome, frankly dangerous (I smoke)...  But, that may be in my future...keeping an open mind...at least while it's not exploding (my mind, NOT the oxygen).
Anyway...I'm glad I found you all.  I'm in South Florida, turned 59 this past Sunday and pray that someday, there's not just a treatment, but a CURE.  And frankly, has anyone found the CAUSE?
Thanks for reading.
Jay

Jay,

First thing we need to do is CHANGE your mindset. :)  A LOT of us smoke and still swear by O2. It is NOT that cumbersome and can be your best friend. It does NOT explode - just don't smoke while using it. ;)  Go over to the left side of the message board and read the O2 info.

We have a couple of O2 gurus (sp) around here to give you all the nitty gritty details on the whyfores and whatas's about the use, but I do know it works for me. I used it "wrong" for years, but a year ago Chuck got me using it "right" and I don't have to take pills any more. I'm whipping the beast and he's not hitting near as often as he used to.

Glad you finally saw a neuro (why are YOU MEN so darn stubborn???). Wish we could answer your question about a cause, but it's still being worked on. It's something to do with the hypothallamus (we've got too much gray matter or something), but so far - it's just being worked on.

Welcome to Clusterville. I've been here since 98 and each day hope there's a breakthru. One of these days I'm going to sign on and Bob Johnson will have a post that a cause and maybe a cure has been discovered.... There's a lot of really good folks here.

Hugs BD :-*

I hope that you will read this entire article and then work to understand that CH is a very complex disorder, not easily diagnosed and often troublesome to treat. Cynicism gets in the way.
========
 
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]

Welcome Jay, sounds like you're on the road to good treatment. My husband uses the prednisone as he starts a cycle (with a few week decreasing taper til off) to help prevent while his lithium builds up to continue the prevention. He'll be on later today (Guiseppi) and will say more. Most use a combination of treatments; something to prevent and something to abort. 02 is definately his best abortive, with no side effects.

He tried the nasal imitrex and it was not effective. He uses the shots now, but not very often as the 02 is usually doing the trick without requiring additional medication.

Thanks... started prednisone today...we'll see what happens.  My only real problem with O2 is just dealing with tanks, masks, etc.  I actually get claustrophobic with a mask...dentist once tried nitrous oxide on me and I freaked...also, did a sleep apnea study once, and then the device they use also made me crazy.

Now, this may sound very stupid, but I have found that if I use the most annoying of commercially-advertised products, HeadOn (apply directly to the forehead, LOL) at the very first sign, it often wards off a full attack...perhaps 30% of the time...mostly my daytime attacks.  Has anyone had similar experience?  When I first bought it, I was desperate...not sure what's in it, probably just junk since it's over the counter, but the icy-hot feel seems to occasionally do the trick.  Has there been any discussion about that?

And BarbaraD, it's not that men are stubborn (well, yes we are...asking directions being the worst), it was my mother who "taught" me this.  She used to refuse to go to the doctor, using the line "My mother went to the doctor, and what good are they, she died anyway!"  Well, my grandmother died of breast cancer in the early '70s...a likely outcome back then...in her early 70s.  The irony of my stubborn stupidity is that my mother didn't go to the doctor, and she died at the age of 71 ten years ago.  So, she made me averse to them, even though they probably could have saved her.  But, you're right, men ARE very stubborn creatures....part of our charm, I guess!
Jay

Order an O₂ptimask at the ch.com store to the left, and use the mouthpiece instead of the mask.

What claustrophobia?

Head On uses an oleocapsium (sp?) extract. It hasn't enjoyed much success on the board. There are a whole bunch of ongoing studies about how oleocapsium interacts with our nerves as a pain killer. I'm convinced there's something to it and eventually they'll come out with a version that'll have a better success rate then the head on does.

The mouth piece will hopefully help you with the claustrophbia issue. Oxygen has been my life saver. Love the lack of side effects after the headache is gone!

Joe