Hi, Emelle here from Scottsdale, Arizona.  I was diagnosed today with CH from a neurologist at the Mayo Clinic.  I've been having 'migraines' for almost 40 years and FINALLY have gotten some clarity as to what I'm suffering from. 

I've been started on Indocine, 50 mg 3 x day and am to call Dr. in a week.  All of my headache episodes fit the CH pattern and no one had suggested that I had anything except Migraines for years and years - was even in an early Migraine study using Imitrex in the 90's in Denver run by neuros, anesthetic drs. etc and still was never diagnosed with CH.

I am so grateful that maybe I've been diagnosed correctly and based on all I've read today on the internet since the Dr's appointment I fit the profile exactly.  WHEW!!!  And I hope to check in here to hear more from you all and learn more about these headaches.

Thank you for creating this website and message board.  How wonderful to have a 'family' that understands now.  I'm single and while my cats are very sympathetic to my pain they really don't add much to discussion groups...LOL

Have a great evening - I'm planning on it.

Emelle

Well we're danged glad you found us. Suggest you start by reading this link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Oxygen has been a major game changer for many.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

Check out:

Clusterbusters.com

For some alternative therapies. Then just start reading like crazy. in short order you'll know far more then most doc's about CH. WE'll help you any way we can.

Joe

A few items for your information:




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END 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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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"

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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.

Scottsdale huh?  If you've lived there for those 40 yrs. I am really surprised,  since that area is so well known for it's upscale doctors (as well as other things)   ;D

I'm so glad you found our family here.  There is no better site on the entire web for information and support as here as well as O.U.C.H   (link to the left of here.

welcome !

Linda

Hi Linda,
I moved here in late '90's and it took a while for me to get connected.  You are correct -- we have fabulous Dr's here.

Good to hear from you.

Emelle