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Cluster Headache Help and Support >> Getting to Know Ya >> Hi, I'm..
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Message started by Solen on Mar 28th, 2009 at 10:39am

Title: Hi, I'm..
Post by Solen on Mar 28th, 2009 at 10:39am
Hi, I'm Margaret from Poland and I was officialy diagnosed with cluster headaches on Wednesday. It is my second period of attacks.
I'm eighteen. I just thought to have some contact with people who understand how it feels. This pain starts to break my family and demolish my plans in the International Baccalaureate class. When I started reading the page I was.. crying. It felt that there are really people who get that. Who understand. Hi!

Title: Re: Hi, I'm..
Post by Bob_Johnson on Mar 28th, 2009 at 10:45am
Glad that you found us. As you have time, explore all the buttons (left), starting with the OUCH site.

There is much experience to be shared with you; just ask questions.
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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.
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND 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 Login or RegisterEND PRINTPAGE
(Thanks to "cluster" for link.)
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (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]

Title: Re: Hi, I'm..
Post by Guiseppi on Mar 28th, 2009 at 6:30pm
I just posted to your other post....but PLEASE take the time to read the info in Bob's post. You will have as good or a better understanding of your CH and it's treatments then most doctors you will see!

We suffer from an unfortunately rare ailment so its incumbent on us to educate ourselves and work as a team with our doctor to formulate a treatment plan. We'll help you every step!

Joe

Title: Re: Hi, I'm..
Post by papagimp on Mar 29th, 2009 at 2:47pm
Welcome Solen.  I too just found this site mere days ago. It was very rejuvinating just knowing their others out their who understand.  These people seem full of good  advice and kind words.  I've had 4 attacks since finding this site and following just some simple bits of advice have managed to "deal" with at least 3 of these attacks without ever hitting that excrutiating point.  Best wishes and again welcome :)

Title: Re: Hi, I'm..
Post by Lefty on Mar 31st, 2009 at 6:33am
Hi Solen,

Welcome to the Site..!

Unfortunately your condition has led you to this site
but i can assure you that these first steps you have taken will empower you with the coping skills in your journey ahead. Until I found CH.com i felt very lonely and afraid. The wealth of information and kind words offered by everyone enabled me to finally tackle my condition head on and enjoy my pain free days. Please involve your family and friends as this can also be a very testing time for them.

Lefty

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