I've had CH's for the past 5 years and started around my 25th Birthday. Initially my doctor thought it was migraines and dismissed my symptoms. It wasn't until 8 months later when I had a huge attack, slumped over the wheel of my car crying from one eye and headbutting the steering wheel that the A&E doctor said I had a CH and pumped me with a dose of  Sumatriptan and gave me 02, I then promptly passed out. Since then not a lot has happened, every doctor I go and see tell's me the same thing 'Since the Sumatriptan injection pens no longer work for you, there's not a lot we can do, oh and you need to give up smoking.' For the past 8 months I've had the same attack, always with a dull migraine then sprouting with severe pain (normally on my left) once my jaw starts to ache. The cluster headache lasts for about 8 hours then dies down for a couple of hours which is when I sleep. I look like I've got a black left eye, can't eat, sleep or even work (as I'm a truck driver). The only kind of relief I get is if I sit on my kitchen chair and tilt my head back so I face the ceiling, for a moment it hurts worse...then it eases and goes dull. Can't sleep like that, but for as long as I stay there I can think of something more taxing than 'Please just kill me now!' Sorry if this post is erratic or makes no sense but I'm really getting my arse kicked here. Does anyone else in the UK know how to get the NHS moving in the right direction? Oh and for the past week I can smell burning hair, not just sometimes, all the time. Google say's it's a tumor and I'm going to die lol, but my Doctor say's 'Burnt hair huh? You need to give up smoking.'

Hi and welcome

For a load of UK based info about how to get the NHS to properly treat CH have a look at the OUCH UK web site - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . They also have a helpline number you can ring too.

Also start reading here too, ask questions and you'll learn a lot.

Hi Drew

As per Lance's comment, your symptoms don't sound stereotypical, but then none of our symptoms are the same.... we're all just that bit different!
You do need to read all you can and get as much information as possible. Go back to your doctors and insist on an urgent referal to a headache specialist. You need to do this if its CH or something different, your obviously suffering badly and these things are best not left!!
If your current doc won't play ball, ask to see a different doc in the practice. Even change to a different practice, if that is what it takes.
The problem here in the UK is that some of our doctors think the money they manage is theirs!! They don't seem to appreciate that it comes from us, the tax payer. They also don't appreciate just how painful CH is.
On a positive note, I've had some good support from doctors and specialists alike, for most of my CH career. But not always!!!

Best regards

Andrew