It's a whisker frustrating isn't it? At the same time, it's not entirely their fault. They get  a couple hours total education on ALL headache types at doctors school. None of them see a CH'er their whole career.......then you come along!!! Doesn't ease the frustration a bit though does it!

Joe

Print whole article (link, 2nd line) and give to your doc.
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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 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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J Neurol Neurosurg Psychiatry. 2001 May;70(5):613-7.  


Cluster headache in women: clinical characteristics and comparison with cluster headache in men.

Rozen TD, Niknam RM, Shechter AL, Young WB, Silberstein SD.

Department of Neurology, Jefferson Headache Center, Thomas University Hospital, Gibbon Building, Suite 8130, 111 South 11th Street, Philadelphia, Pennsylvania 19107, USA. todd.rozen@mail.tju.edu

OBJECTIVE: To study the clinical characteristics of cluster headache in women. Cluster headache is a disorder of men (male to female ratio 6-7:1). METHODS: Retrospective chart review to identify all women diagnosed with cluster headache at an academic headache centre from January 1995 through July 1998. RESULTS: Thirty two women and 69 men were identified. The mean age of onset of cluster headache was 29.4 years in women versus 31.3 years in men. Two peaks of onset in women (2nd and 5th decade) were identified compared with one in men (3rd decade). Episodic cluster headache was present in 75% of women and 77% of men. Women and men had on average 3 attacks a day, but attack duration was shorter in women (67.2 minutes v 88.2 minutes). Cluster headache period duration (11.1 weeks v 10 weeks) and remission periods (21.1 months v 23.1 months) were similar in women and men. Miosis and ptosis seemed to be less common in women (miosis 13.3% v 24.6%, ptosis 41.9% v 58.1%) whereas lacrimation and nasal congestion/rhinorrhoea were almost equally prevalent in women and men. Women had more nausea than men (62.5% v 43.5%, p=0.09) and significantly more vomiting (46.9% v 17.4%, p=0.003). Photophobia occurred in 75% of women and 81.2% of men, and phonophobia occurred in 50% of women and 47.8% of men. CONCLUSIONS: THE CLINICAL CHARACTERISTICS OF CLUSTER HEADACHE IN WOMEN ARE VERY SIMILAR TO THOSE IN MEN. WOMEN DEVELOP THE DISORDER AT AN EARLIER AGE OF ONSET AND EXPERIENCE MORE "MIGRAINOUS SYMPTOMS" WITH CLUSTER HEADACHE, ESPECIALLY VOMITING. BOTH MEN AND WOMEN HAVE FREQUENT PHOTOPHOBIA AND PHONOPHOBIA WITH CLUSTER HEADACHE ATTACKS. THESE SYMPTOMS ARE NOT INCLUDED IN THE INTERNATIONAL HEADACHE SOCIETY CLUSTER HEADACHE CRITERIA, SUGGESTING THE NEED FOR POSSIBLE CRITERIA REVISION.

Publication Types:
Comparative Study

PMID: 11309454

For what its worth----Some say that that there may be a hormonal link-  Check out some posters experiences with the use of testosterone.  Donna D , a former member,  has posted her theories on this.   Another member Mityrare, I think,  is having some success with testosterone treatment.   

Mine started around the age of 24 or 25 too( I'm 39 now) .  I've always had issues with my hormones and have been paying close attention to threads relating to this.  I'm not too optimistic though that I'll ever discover the connection 

Sounds like your Doc hooked you up on some good abortives. 

Kelly

mezza wrote on Feb 4^th, 2009 at 11:07pm:

That'd be DonnaH_again. 

My doctors have got their education via this site and the resources here.  The first time I was getting hit, they put me in a dark room and injected me with a heavy painkiller.  For me, it made it worse, but I was drowsy too!!!

Remember folks, unless they are a headache specialist, they have little training on rare diseases!

we can close this post now. haha