Hello,

I have been reading your website and board for a while now but decided it was time to register and say hello.  I am the supporter of an Episodic CH sufferer.  He was finally diagnosed a few years ago after years of trying to convince doctors he wasn't just "stressed".  He is in the middle of a bout at the moment and it has hit us both pretty hard.  Currently in the process of arguing with docs over meds but have at least got as far as injections (albet it only 4) after providing all the reseach I had done on the various CH website (including OUCH UK).

He suffers bouts of about 3 months but thankfully the "beast" goes away for about a year, after reading the stories of those who are chronic I consider ourselves to be pretty lucky in this regard.

Guess I just wanted to say hi.
D & C

Good to read that you have done so much homework. The only question remaining for me: can OUCH UK give you any advice on how to deal with the docs?

I assume that you are working at the level of primary care--the level where so many docs have virtually no training in complex headache disorders. If you can maneuver to the level of specialist care....maybe.

But we have several members from GB who will, I trust, speak directly to the barriers you face.

It is somewhat concerning when I know more about the condition and the medications for CH that our local GP!  However, the neuro who diagnosed him seems pretty good and clued up so fingers crossed we get somewhere.

I trust you have seen these two items posted here--but just in case...
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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 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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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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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)
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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.)
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Please be specific if you are looking for focused informaion. Number of well informed folks here.

Sadly it's not at all unusual for us to know more then many docs. It's a rare condition, most docs will go a career and never see a CH patient. It's our job to bone up on CH and help our doc's assist us.

Do read the oxygen link on the left. It's enjoying an incredible success rate, cheap, no side effects, certainly worth a try. [smiley=hug.gif] That's for being a supporter. My supporter of 29 years is all that's kept my sanity! Supporters rock!

Joe

Bob Johnson wrote on Apr 20^th, 2009 at 8:38am:

Good to read that you have done so much homework. The only question remaining for me: can OUCH UK give you any advice on how to deal with the docs? But we have several members from GB who will, I trust, speak directly to the barriers you face.

yes, if you phone the OUCH (UK) helpline on 01646 651 979, leave a short message, and a contact no, (pref landline) one of the volunteers will phone you back, we get a lot of questions about how to deal with gp's and can give you really good advice to deal with these situations!!

Sandra xx

Thanks for your kind responses - have spoken to OUCH UK and got some good advice.  Working on the docs at the moment - I am armed with lots of reasearch and information and I have my diary of events ready - they may know nothing now but they will by the time I have finished with them!!!!  It's been good to get the support and advice offered here and at OUCH UK- thank you very much - I just want to be the best supporter I can.

Best wishes to you all.

You might also want to print out the information, behind the tab, on the left side of your screen: oxygen info and bring that in for your Doctor to read.  

Good luck, and keep us informed!

Chuck

You could also ask your doctor to look in his BNF (British National Formulary - GP's prescribing bible) section 4.7.4.3 on cluster headache and he will see that Imigran injections  are the only licensed treatment for CH, and that high flow oxygen is also recommended.

If you've got a printer, go to this link and download a part completed HOOF form. Take it along to him, get it filled in, and ask him to fax it off to your local oxygen supplier.

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Hopefully the results of the Oxygen trials carried out at Queen Sq. will soon be made public and doc's will be in no doubt of the advantages of using O2. This costs a few pence compared to £28.00 for a shot for Imigran.

Rod