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Cluster Headache Help and Support >> Getting to Know Ya >> new member / long time sufferer
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Message started by Hollerin Jim on Jun 23rd, 2009 at 1:12pm

Title: new member / long time sufferer
Post by Hollerin Jim on Jun 23rd, 2009 at 1:12pm
new to this board.  i hope to glean information and possible coping skills to help me battle these CHs.  Male, A-55; now in my 5th week of this, my 4th episode in 15yrs.

just released from 4 days in hospital being monitored while DHE administered in attempt to "break the cycle".  didn't work this time (but it did the last time).

Hollerin' Jim

Title: Re: new member / long time sufferer
Post by Guiseppi on Jun 23rd, 2009 at 1:31pm
Welcome to the board! Yeah, start reading like a mad man. More info on this board then you'll find anywhere else, that's for sure. Sounds like your doc is pretty up on CH treatments. Have you tried oxygen yet? Read the link on the left, I'm male, 49, 31 years with CH, episodic. 02 will abort an attack in as little as 6-8 minutes for me. It must be used correctly or it's worthless so do take the time to read the "oxygen info" link, very well done complete with pictures and terms.

Glad you found us, hope we can help relieve the pain!

joe

Title: Re: new member / long time sufferer
Post by Racer1_NC on Jun 23rd, 2009 at 1:52pm
Welcome!

I second what Joe posted about the O2. If it works for you it can be a life changer.  ;)


Title: Re: new member / long time sufferer
Post by Bob_Johnson on Jun 23rd, 2009 at 3:44pm
Let me throw some of the current thinking about CH and treatments. Ask questions as they arise.
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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--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 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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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