Hi, Will here from South Africa - been suffering from cluster headaches since 1980.
Strangely enough they were diagnosed correctly from the very beginning i.e. my sister's boyfriend at the time was a medical doctor (he still is, but is now my brother-in-law) and when I phoned my sister - who is a nursing sister - to query what I thought were horrendous migraines, she asked Joe what he thought about the symptoms and he came straight out with "cluster headaches."
By then I had had the headaches for about a week, and he prescribed Cafergot.
There are probably less than half a dozen things in my life that I can recall with perfect clarity - one was the very first cluster headache I ever got: It was a Friday evening in the summertime, hot as hell and I had just hit the highway on my way home from work, squinting into the sun (no dark glasses) when it zapped me from nowhere - a kip 8 or 9 - which I now know is weird, given that all my episodes since start out at about a kip 4. Anyhow, I could not pull over on the highway and had to battle it out for the next half hour with this red-hot poker through my right temple and my right eye watering like a tap. I got home, took half a dozen disprin and lay down in a dark room. Big mistake. Had to get up and pace around for a while until it faded and disappeared.
I put up with these for about 4 or 5 days, thinking they were migraines.
The next perfectly recalled memory I have is the night I woke up with a really bad episode and took my recently prescribed Cafergot for the very first time. It must feel like that when you win the lottery. Within seconds I went from full on pain to nothing.
Of course, now that I had the Cafergot I thought Cluster-headache Schmuster-headache - bring it on!
Sadly, as everyone here surely knows, you build up a tolerance very quickly.
Nevertheless, I still use a mix of Cafergot and Red Bull for my first 4 nights of a new episode and thereafter go to the O2.
I tried O2 with my last episode last year and had very limited success - in fact as many people here might testify, when a cluster headache thinks you are trying to tiptoe through the tulips it lobs a hand-grenade into your head just for being cheeky enough to try and avoid it.
However - and this is a HUGE however - the Oxygen link on this web site put me straight on the correct use of O2. I had been sniffing away on a maximum of 6 or 8 lpm which only annoyed the headache. I can heartily endorse everything on the Oxygen page, and am very grateful to you guys for putting it up. In 30 years it is the first truly effective treatment and will abort the headache in about 15 minutes flat (for me) - every time.
So thanks again and sorry for being so long-winded.

Sweet post.

        Potter

Hi Will!
Welcome!
Sounds like you have alot to offer others who are just starting their fight against this disease.
Good to hear from you!

Hey !!!
welcome to the club :)

loved your description :

" when a cluster headache thinks you are trying to tiptoe through the tulips it lobs a hand-grenade into your head just for being cheeky enough to try and avoid it."

you described it perfectly lol...

Glad that you have found us and I do hope you will mine the site for the extensive medical material which you will find.

Start with the OUCH site, left, and work thu the other buttons as you have time. Throwing a couple of good introductory items which are good groundings....

PDF file, below.
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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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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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. Rozen)
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Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)
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One of the more important issues we face is locating a doctor who has training/experience in handling complex headache disorders. Finding such a doc and getting a replacement for the Cafergot would be high on my suggestions.

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I must agree with the others - that is a perfectly excellent post Will.  [smiley=thumbsup.gif]

chopper922 wrote on Jul 24^th, 2010 at 2:27pm:

Hey !!! welcome to the club :) loved your description : " when a cluster headache thinks you are trying to tiptoe through the tulips it lobs a hand-grenade into your head just for being cheeky enough to try and avoid it." you described it perfectly lol...

I'll Second ^^^^^^^^^That!   ;D

Welcome Will ! 

Welcome to the board Will. As you've already discovered with the 02 issue, MD's are a little behind the times on the best way to treat these. Educate yourself and help your doc help you. Sounds like you have a great handle on it at this point. Glad you've found us.

Joe

Welcome, Will.

Pull up a chair and make yourself at home.  There is a wealth of information on these boards that can help you and your doctor try to get a handle on this beast.

Don't be afraid to ask any question you might have.  Someone is always here and will try to answer it as best we can.

Sandy

Hi Will

Just wanted to ask what is Cafergot ?


Nicky

Nicky, Cafergot is the proprietary name of a medication consisting of ergotamine tartrate and caffeine. It's an old school CH med I was first given in the early 80's. In it's oral form it takes too long to be absorbed into the system to be much help for my attacks as they build too fast. Some on the board used it in its suppository form and found some level of relief. It has fallen out of favor as there are so many more ffective meds available now.

For many years I was using the oral form of cafergot in combo with my oxygen. 02 would knock an attack down, cafergot would keep it away for up to 12 hours. I now combine an energy drink, I prefer sugar free red bull, and get pretty much the same results as I used to get with cafergot.

Joe

Welcome Will,

We're here as your new family.
Sounds like you are on the right track with your management.  O2 rocks!!!

Thanks to everyone for their welcome - I find this a very informative and supportive forum.
I have a number of questions regarding my latest cycle, which is very different from all previous ones, but will take my questions to a more appropriate posting area.
Thanks again - do you know how amazing this is compared with 1980?

Exactly Will!  In the early 1980's when Guiseppi started having CH's we didn't know what they were and the doc just gave him narcotics which would wipe him out. Not too cool since he was in law enforcement!

Welcome to the clubhouse (nut-house).

Will Smith wrote on Jul 30^th, 2010 at 4:03pm:

do you know how amazing this is compared with 1980?

Yes - from first hand experience I do.  :o