Hi I'm new to the site my name is Leah from the uk and was told by my doc this morning I have cluster headaches I'm a little shocked by not overly surprised as it all makes sense now the pain on my right side of my head in my ear in my jaw in my neck down my arm. I find it unfair to be honest I'm healthy and active and hardly ever ill but this has well and truly knocked me off my feet I can't believe the pain sometimes I want to take my brain out and do something that will stop the pain.
Oh dear I've rambled lol just wanted to say I'm glad I've found this site and any hints and tips will be gratfully welcomed

You have a fine support group in the UK which you might explore. They can be a resource in dealing with your health system.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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And the PDF file, below....

Hi thanks for all the info the main thing I'm concerned about if am I going to suffer with these ch for the rest of my life 

If it is CH...yeah...it's with you for life. You'll have short remissions, and some really long ones...but he'll always find his way back. The cool thing is you will now meet a group of life long friends on this board....that you'll never have to explain CH to.

Joe

Leah wrote on Sep 6^th, 2010 at 9:47am:

  We've all been there and have the T-shirt 
Hang in there you will probably hear a lot more stupid comments like that over the years.

Guiseppi wrote on Sep 6^th, 2010 at 10:10am:



lol yeah i heard that already stop smoking hmmm dont think that may help well it might but think giving up may cause me more of a headache lol i also heard try and relax more !!!

Hi Leah

It's good to meet you but I'm sorry that is has to be because of this horror.

I got mine in 1969 when I was 23 and they lasted until 1991. Long remissions can happen and I know how lucky I've been. One theory is that as an epileptic too, I've takens a pile of different drugs over the years and that may have had something to do with it. There is no way to know.

Anyway, some CHers have had long remissions and no doubt some have left this board because of it.

In any event you'll find tons of good information here. Let us know how it's going.

Charlie