Andy,
Glad you found our little website!  Also good to hear that your girlfriend is understanding, my wife is too, and that makes a world of difference.

Have you tried Oxygen?  It works for most of us. 
Here's a link that will explain:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Also there's an anti-inflammatory vitamin supplement regimen under the post "123 days pain free and I think I know why" that has been a great help to me and others.

More members will be along soon to post their ideas for what might help you.
Best of luck!
-Gary

Because so many docs know very little about Cluster, it's important for you to learn as much as you can.
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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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See the PDF file, below.
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You have an excellent support group which I'd encourage you to join:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Explore the buttons, to the left, starting with the OUCH site and its many links.
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Reading this site regularly will exposure you to many people with knowledge and skill in dealing with CH.

This fragmented message will give you some other leads for treatment in the U.K.:

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hi Andy,
I'm new here too ( about 2 weeks ) and your story sounds pretty much the same as mine with years of mis-diagnosis - toothache, migraine, sinus etc etc, before I read up on CH, then spent the next 2 cycles trying to convince dr's. Finally saw new dr last month who confirmed ch and prescribed sumatriptan tablets, she can't prescribe anything else so Im waiting to see specialist - Ct scan booked for wednesday just to rule out any nasties.
Just really wanted to say that in the last couple of weeks  these guys have been fab, I haven't relied to much but I have read the message board daily and the empathy and good advise has been so helpful, they really do help more people than they know. You have found the best place to help you through this
Thanks guys

HI everybody Im Darren from wales in the uk. i joined about 6yrs ago but never posted. im 43 and have suffered with this demon for 8 yrs now.I am currently in another bout due to change in weather. my story is just like everybody elses really my gp is crap he knows nothing of cluster headaches only good thing is i get whatever meds i need unlimited imigran injections these are life savers. i have tried all the main tablets and oxygen but has no effect on me. so imigran for me also taking lithium leaves horrible taste in the mouth. i saw prof.goadsby in his london clinic about 5yrs ago but nothing realy positive from it.some days i realy want too give up but the bastard wont beat me yet. we can only hope for a cure one day pigs might fly eh. regards too everyone Darren

Hey Darren!
Another Welshman!    Welcome!  My dad was Welsh (my grandfather was from around Cardiff) and my wife (Kathy) and I honeymooned in Wales on up to Snowdon.  Batty has been a great encourage-er to me (and just about all the newbies) and he's right on the Oxygen.
You might also look at the post entitled "123 days pain free and I think I know why" put up by Batch.
Glad you finally posted, now that we know you're out there we'll help as much as we can.

Cheers!
-Gary

Hi gary nice too meet u mate. I live in prestatyn in north wales. With ref to the oxygen i was given cylinders and a mask and was told i needed 25lpm. I dont think the  mask was any good realy. Trouble is my gp is crap he doesnt know where too begin with o2. I am trying too educate him mate. I may try again thanks mate.

hi lance nice too be on board .thanks for the info i am going too try with the mask again.cant do nothing till next week my gp away again. far too complicated explaining to somebody else in the surgery. i wish they would find a cure it destroys so much of our lives. anyway thanks lance regards Darren