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Big John
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Jun 11th, 2013 at 5:04am
 
Hello all I'm new to this site and to cluster headaches though I've been suffering for some time I've only been recently been diagnosed.
I'm English and from the West Midlands and would be interested in hear from anyone that understands how these CH makes you feel and any tips you might have in helping with the pain. I have oxygen and sumatriptan that help but is there anything else that help.
I look forward to hearing from you and hope to get to know you all a little better.
Thanks for reading
Big john
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: New
Reply #1 - Jun 11th, 2013 at 6:58am
 
You have an excellent support group which you should contact at once. They can help with your questions and advise how to work with your health service to get a referral to a headache clinic, by-passing local health care.

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Bob Johnson
 
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wimsey1
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MA
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Reply #2 - Jun 11th, 2013 at 7:56am
 
Greetings, John, and welcome. You have the two best abortives assuming you have been given the proper sort: O2 with a 25+ lpm regulator and nonrebreather mask, and imitrex (suma) injections, not the pills. Add to those Red Bull or any one of its taurine/caffeine cousins to be chugged at the first sign of a hit. You don't mention preventatives: verapamil, the D3 regimen, etc? Anything along those lines? Keep in touch and God bless. lance
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Bob Johnson
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"Only the educated are
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: New
Reply #3 - Jun 11th, 2013 at 10:13am
 
Some sources of basic information re. Cluster.

PDF file, below, re. treatments.
==

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--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]
====

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.


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Bob Johnson
 
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Big John
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Re: New
Reply #4 - Jun 17th, 2013 at 3:02am
 
Thank you all you have been a great help to me. And I'd never heard off the red bull I'll give it a try
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