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Hello from a returning newbie after 8 years away (Read 600 times)
JamesF
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Hello from a returning newbie after 8 years away
Mar 21st, 2009 at 8:13am
 
Hello everyone, my name is James and I have had a wonderful few years of cluster remission due to Verapamil. However, in the past 3 weeks the attacks are back so I thought I would come back to see what new treatments there may be, while waiting for an appointment with Prof Goadsby's replacement at the London Hospital for Neurology.

I used to live in Florida and attended the OUCH convention in 1991 in Atlanta. I have since moved back to the United Kingdom.

I dont know if anyone I used to know is still on here, but hello again to those that are and nice to meet you to those of you that do not know me.

JamesF
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Bob Johnson
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Re: Hello from a returning newbie after 8 years away
Reply #1 - Mar 21st, 2009 at 9:40am
 
I'll assume that you haven't kept up with developments over the years and so sending along some basic stuff.
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Your excellent support group: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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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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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:
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(Thanks to "cluster" for link.)
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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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Bob Johnson
 
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Guiseppi
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Re: Hello from a returning newbie after 8 years away
Reply #2 - Mar 21st, 2009 at 2:20pm
 
Welcome back, damned sorry the beast has found it necassary to screw your life up! He's amazingly consistent that way. Sadly it's not at all unusual for a med that's worked for ever, to suddenly stop working.

Bob's given you the latest and greatest in treatments to read up on. The only thing I'll add is do take the time to read the "Oxygen Info" link on the left, hi-lited in yellow! It's having an incredible success rate as we refine how to properly use it. Should be your first line abortive.

Here's hoping the beats leaves you soon! By the way, big get together in July in Saint Louis, it should be a huge group this year!

joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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