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New Kid on the Blog (Read 906 times)
seano
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cool by the pool


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Cape Town, South Africa
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New Kid on the Blog
Jan 22nd, 2009 at 2:21pm
 
...sean from Cape Town South Africa, been getting CH for 7 years for 30 days a year except im now going into my fifth month this time, medication has been helping me get through, on my second course of prednisone, also tried calcium blockers for the first time but lost its affect... anyway long story short, when ever the CH starts i go into denial and do new research and this time i came across this wedsite and its been nice to know that there are people out there that know what i go through... hello!
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sean vic scharneck  
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Just Plain Carl
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Re: New Kid on the Blog
Reply #1 - Jan 22nd, 2009 at 2:30pm
 
Welcom to the group Sean.

Sounds like you have turned chronic.  5 months is a long time.  Bummer!!

Are you taking anything along with the prednisone?  Alot of us use Verapamil or Lithium. 

There is alot of other stuff out there.  Let us know what all  you are using and have tried before. 

Also, you will be hearing alot about oxygen.  If your not on it, you will be, after everyone here gets to ya.

                                                      PFD's
                                                       JPC
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Bob Johnson
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Re: New Kid on the Blog
Reply #2 - Jan 22nd, 2009 at 2:37pm
 
Here is the most current thinking from Europe and the U.S.

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 Login or Register
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:
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(Thanks to "cluster" for link.)
==============

 
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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seano
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Cape Town, South Africa
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Re: New Kid on the Blog
Reply #3 - Jan 23rd, 2009 at 12:30am
 
...Thanks Carl, now i feel better "CHRONIC"!!! NOOOOOOO!!! jokes.  Well just taking prednisone at the moment, was taking trepiline (anit-depressant) to help me sleep and calcium blockers but stopped that... ive been told to try out oxygen but need advice there as ive also been told that you need a certain type of mask and a good flow???

thanks Bob, need all the information i can get...



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sean vic scharneck  
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UnderTheRadar
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Re: New Kid on the Blog
Reply #4 - Jan 23rd, 2009 at 12:33am
 
Welcome to your new family!  Cheesy

You'll get lots of good info thrown at you.  And lots of support.  I'm glad you found us!  Also, check out clusterbusters.com for some alternative treatments that are gaining a lot of attention.  Good luck.
-Paige
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Remember- double-line the foil, shiny side out.
 
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Guiseppi
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Re: New Kid on the Blog
Reply #5 - Jan 23rd, 2009 at 3:47am
 
For oxygen to be effective, it's critical you start as soon as you feel the attack begin, and your lungs must get only pure oxygen. No exhaled air, and no outside air. This is best accomplished using a Non Re Breather Mask, and a regulator set to at least 15 LPM. Some on the board go as high as 25 LPM to keep up with their breathing. Nasal Canulas and Re Breather Masks allow outside air and exhaled air into your lungs, both will blunt the effectiveness of the treatment.

Glad you found us, you don't have to fight these damned things alone anymore!

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