Hi Every one
I am Darren from the UK, CH sufferer for 20 years, only diagnosed a couple of years ago, always told I had migraine. When I read this board I realise how lucky I am. I have an 18month cycle. 4-5 weeks of ch then 18months off. It was a revelation reading this site, to realise there were others like me....I kept thinking the Dr s dont believe me when I tell them how bad this hurts.  I am lucky cos when I read this I realise alot of you suffer, really suffer. This board has helped me through this and I now use Sumitriptan injections on Prescription when needed. I just wanted to express my thanks to everyone on here who contributes and makes people like me very humble....good on yeah all!!!

If you are not using a preventive medicine along with the Sumitraip. you treatment is incomplete.

We receive a steady run of messages about the poor training/performance in treating Cluster because your docs receive poor training with complex headache disorders.

Under your health law, you have the right to be referred to a headache clinic for care,by-passing local docs.

Suggest you conact your excellent support group for advice on how to handle your situation.

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Hi Darren,  I'm in the UK too.

Bob is right about our doctors being poorly trained. Most GPs have not even heard of cluster headaches and many neurologists are very slow to diagnose. But there are a few good ones out there. I suffered for years with an idiot who thinks women don't get clusters, but at last I have found one who speaks our language.
As Bob said, "ouch" will send you in the right direction, (follow his link) although as you have already been diagnosed maybe your doc is OK.

Ask him to prescribe Oxygen for you. But you must have at least 15 litres per minute with a non- rebreather mask. If you get either of those wrong it won't be effective. You can use it as often as you like, unlike sumatriptan which is limited to 2 per day. I use the 02 at home and save the injections for when I'm out.

We all know what you go through so you have come to the right place for support and you will find plenty of suggestions on these boards. Some will help and some may not, but all shared with one goal in mind.
Maz.