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Re: Newbie and not happy to join the club (Read 798 times)
George
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Re: Newbie and not happy to join the club
Apr 13th, 2009 at 9:56am
 
Assuming that your MRI turns out fine, it may well be CH.  It's not the worst news--as painful as this condition is, it won't kill you. 

Diagnosis of cluster headaches is most often the result of eliminating other causes first.  Sounds to me as if your doctor is doing this.  Good.  When your diagnosis is firm, he or she will likely present you with treatment alternatives.  There are some effective methods available to stop an acute attack, and to reduce the number of attacks.

Some of our more knowledgeable members will be along soon to provide you with links to treatment protocols and discuss some of the alternatives available. 

In the meantime, have a look around and read, read, read.   Smiley

Welcome to CH.com.  We'll help you along the way in any way we can.  We're not doctors, but we've been patients for a long time.   Wink

Best wishes,

George
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"Whoever loveth me, loveth my hound."  (Thomas More, author of "Utopia", and Chancellor of England.  1477-1535)
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Bob Johnson
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Re: Newbie and not happy to join the club
Reply #1 - Apr 13th, 2009 at 10:55am
 
This will give you some basic information and treatments. (link on 2nd line for full text.)
========
 
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: Newbie and not happy to join the club
Reply #2 - Apr 13th, 2009 at 11:38am
 
Bob's given you your first required reading assignment. While it sounds like you're fortunate in that your doctor knows about CH, it doesn't hurt to educate yourself as thoroughly as you can, and partner up with your doc to plan your treatment. Most docs never see CH in their practice so it's not suprising most are not up on the latest and greatest treatments.

I'll give you my treatment regimen as an example as it seems no 2 are the same!:

I'm episodic, meaning I get headaches for several months and then pain free times lasting up to 18 months. When the headaches start up again I go on 1200 mg a day of lithium. We call this a preventative medication. It reduces the number and the intensity of my hits. Mnay other prevents to read up on in the meds info.

When a headache starts, I breathe pure oxygen. Read the link on the left "Oxygen Info" complete with pictures to show you how to get set up. I can stop an attack in 6-8 minutes using oxygen. Beats the hell out of the 90 minute headbangers!  Occasionally I still do the imitrex injectable using a stat pen  but I HATE how that stuff makes my body feel. Fortunately oxygen almost alway does the trick for me.

Many variations of my regimen that are effective for others. For now, buy a six pack of energy drinks, monster, rock star, any containing the combination of caffeine and taurine. Chug one of those down at the first hint of an attack. Many can abort an attack or at least substantially reduce it using those.

Welcome to the club! It's a great group but the dues suck! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Em
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Re: Newbie and not happy to join the club
Reply #3 - Apr 13th, 2009 at 12:49pm
 
Hey Dan,

Sorry you had to find us, but welcome to the madhouse! You'll find so much useful information here, and if you've got a good doc, you'll soon get a diagnosis. If it is CH, then you've come to the right place for information, support and so much more.

Have you been given anything for the headaches at all?

Em
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