Hey, I'm Josh. I'm 20 years old and have had clusters for about 3 years now but only recently (about 9 months ago) have been diagnosed with cluster headaches. At first (like many) I had been misdiagnosed as having migraines but the preventative medication I had been given never worked, which lead me to pursue it more and get a proper diagnoses. I live in a small town in New Zealand and though my doctor does know what a cluster headache is, she is very unfamiliar with it and it's a pain (literrally) trying to work out meds and treatment that works but I am slowly getting there as I have just been perscribed with "Imigran" which seems to work for me.  Also my family and friends aren't very supportive as they don't understand or know what a cluster headache is and often just think I'm being dramatic when I do "the dance", my mum has even gone as far as to say that I shouldn't be taking drugs to deal with something as small as a headache!! So it's awesome to find a place where the people do understand.  Anyway I thought I would search around the net and do some research on it myself, and that's how I found this site and so far the information on here has been invaluable. Thanks so much!

Edit: After reading a bit more info on the site I think most of you know "Imigran" as "Imitrex"?.....Pain in the arse New Zealand names for drugs.....  :-?

Good Mornin Josh,

Sorry you had the need to find us but Welcome Home!!  You will find a great bunch of new friends here to answer your questions and give you support.

And you'll get lots of questions as you will soon find out...lol.
You mentioned Imagran (called Imitrex in the US), is it pill or injection form?  Pills typically work to slow for most clusterheads.  Has your doc tried you on any prevents like lithium or verapamil? Probably most importantly, if you haven't used O2 as an abortive, read the yellow oxygen info tab on the left!!  I'm 62 and have had CH for over 25 years.  My life with CH is so much more manageable after finding this site in 2005 and learning about O2!!

Again, Welcome Home and wishing you some PFDAN's

Dallas Denny

Josh, if you have no options re. a skilled doc, you might do what so many of us have done--teach the doc! A wonderful Christmas present for her:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Print this entire article for her:

 
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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A big g'day from over the ditch, Josh. Sing out if we can help in any way, especially in lessening your beer supplies so as to remove temptation.

Ha! Aussie Brian does bring up a pertinent point if you're not aware of it already: Drink no alcohol when you're in cycle! For most of us it brings on one real crusher of a CH hit.

If you could show your mom/family/friends info where neurologists studying CH refer to it as the worst pain known to mankind, and the fact that its also known as "suicide headache", who knows, maybe that could help? OK I wouldn't count on it - mostly it'll just be us here who know that score.  :-/

BTW I think Imigran is the name used in pretty much all western countries except the US, so it has become a familiar name to us US forumites.  :)

Dallas Denny 62 wrote on Nov 26^th, 2009 at 7:27am:

Good Mornin Josh, You mentioned Imagran (called Imitrex in the US), is it pill or injection form?  Pills typically work to slow for most clusterheads.  Has your doc tried you on any prevents like lithium or verapamil? Probably most importantly, if you haven't used O2 as an abortive, read the yellow oxygen info tab on the left!!  I'm 62 and have had CH for over 25 years.  My life with CH is so much more manageable after finding this site in 2005 and learning about O2!! Again, Welcome Home and wishing you some PFDAN's Dallas Denny

Thanks for the warm welcome, I have been put on one preventative called "Dixirit" which is a pill containing 25 micrograms of clonidine hydrochloride......It doesn't seem to work at all but I'm giving it a fair chance, don't want to run back to the doc only a couple of weeks into it and complain it's not working. I will be asking about the other preventatives you mentioned plus O2 next time I'm there. The form of Imigran I have is Pill, it seems to work after about 10mins and if I can take it at the very first signs of a CH and ride out the first few mins it seems to be good....I'm have a pretty big fear of needles and injections so at the moment I have avoided the subject with my doctor, getting all the blood tests done when I was first getting diagnosed was hard enough, nothing can put my lights out faster than needles....lol I guess if the CH get bad enough I will have no choice though....

I'm not familiar with that prevent your taking but I suspect one of our more knowledgeable members will come along shortly and tell me what the common med name is!

The pills will work for people whose pain progresses slowly up the KIP scale. In my late teens and even early 20's, my pain would ratchet up over a 20 minute period and the oral meds would help. As I morphed into adult hood the pain would just ratchet up too fast for the pills to help. Thank God for oxygen! (You'll hear that a lot) Less then 10 minutes of huffing oxygen will leave me pain free...a beautiful thing!

Welcome to the board....and stop your whining it's just a headache! ;) (Yeah...we do understand!)

Joe