Hi peeps. havent posted on here for a while so i thought id give a quick update.

Have now been officially diagnosed by a neuro, it took 16 years but got there in the end. He recommended injectible sumatriptan, oxygen and steroid preventative (cant remember what it was called). Prescription was left for my GP to sort out.

Here lies the problem, since seeing the neuro ive moved house, this means im outside the catchment area for my previous GP surgery and have had to find a new one. So ive done this and made an appointment, armed with information from this forum and ouch plus the letter from the neuro explaining the situation.

I get called for the appointment and the first question I ask is has she ever dealt with anyone with CH before, to which she replied yes. This seemed encouraging until she opened her mouth again. She completely disregarded the neuro's opinion and insisted that i should have sumatriptan wafers instead, she also said she didnt see the need for oxygen and that it wouldnt help and even if it would she couldnt prescribe it anyway.

It was at this point that i realised that she had probably never treated anyone for CH in her career and had a limited understanding of the subject.

I sort of lost my temper at this point and let fly, I explained to her that she was not the expert, the neuro was and that if she didnt give me exactly what was recommended I would be making complaints to anyone who would be willing to listen, she gave in a little and agreed to prescribe the sumatriptan immediately and then consider oxygen after she had contacted the neuro.

I recieved a phone call from her later on that day the tone of her voice had changed as if she had recieved a dressing down from the neuro, she now began asking questions about my home life, i knew straight away she was looking for an excuse not to provide oxygen.

Basically what she said was smoking causes cluster headaches and that if you smoke you have lighters around. If you have children they run around the house with lighters and oxygen is explosive so you cant have it.

Where do they get this stuff from?

I told her that I smoke outside, I dont live with my children any more and that in fact oxygen is not explosive.

She then agreed that I could have oxygen as long as there are no children present and that if i moved back in with them they would stop my script for O2.

The thing is I do live with my children and was basically telling her everything she wanted to hear in order to secure the O2.

I feel that ive alienated my GP on the 1st visit and its going to be an uphill struggle from here on. I know from the reading that i have done that if oxygen works it would be unethical for her to withdraw it but i get the impression thats exactly what she would do.

So anyway the beast is back, ive been having shadows for the past 9 days. At least this time im prepared. 

Brian, I vote for all of the above. 
Seriously, evo, that's one hard-luck story. Is this the only GP you can go to? I have found it requires great tact to speak with a doctor about treatments. Their egos tend to be as large as their med school payments and that makes getting what we need tougher. Sometimes bringing literature can help. Good luck here and maybe the worst is over? blessings. lance

Taking charge and doing all you can to get your CH dealt with properly is essential, so good on you for doing all you need to do.

You mentioned just a steroid as a preventive. This is most likely prednisione which is normally only used as a short term preventive with a taper dose, starting high (60 or 80mg) and dropping down over about 10 days to nothing. It normally works pretty well other than side effects like wanting to eat everything in the house including the pizza box. However it is not good to use it long term as it can impact your body pretty harshly.

Prednisione is used to give a longer term preventive, like verapamil / lithium / topomax, time to build up to an effective dose level. However you've not mentioned one of these.

Doctor shopping is probably my best option, shes ugly as hell and I dont imagine prison doctors being any good either 

Mike it was predisolone that was prescribed but i did a bit of reading prior to the GP appointment and decided against it for the moment. Im still exploring all my options.

Yes bob I am across the water, I was diagnosed by the neuro from my local headache centre (University hospital of wales) and then sent back to the GP to deal with. If anything changes or treatments dont work I can ask to be referred back but apart from that im on my own so to speak.

I visit the Ouch forum but havent got around to registering with them yet.