Hi my name is Danielle i am 19 years old and have been suffering from cluster headaches since i was about 16 i was only diagnosed with these in november last year when my GP refereed me to the royal infirmary because he couldn't do anything else for me. The hospital told me there was nothing they could give me to get rid of them but there was other things that could be tried but only if i felt they were getting worse but i had to go back to my GP for them so i am going back to him on Monday. Everytime i get an attack no one understands me they just think it's an ordinary headache like my work they just odon't care and i'm at college and i take days off college when i get these attacks becuase i just can't concentrate so i end up just not going. I feel like these  are ruining my life and for the first time i've found this website where people for once undertsand what i'm going through and how i feel.

hope to here from anyone soon x[/size]

Hi Danielle,

Sorry you have to go through this crap.  You are among people who know what you are going through.

check out this letter for you co-workers  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Keep reading all you can here and take all the info to your doc.

                                            welcome to the group
                                                       JPC

You are about to learn an old lesson: We have to educate our doctors about this uncommon disorder before they can understand us, much less help us!

First, start to educate yourself.

1. Make contact with a most excellent support group:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

2. Print the whole article for your benefit:

 
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]

3. Print both of these articles for your doctor and use as starting point to discuss treatment options. Since both come from good medical sources, your doc will find them more comfortable to accept what you are offering.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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)
================
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:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
(Thanks to "cluster" for link.)

Hi Danielle

You have come to the right place. All the info you could possibly imagine.
Not to mention an amazing group of people who really care.

All the best in your battle.

Walk in peace