Hi all. Unfortunately after a rest of nearly 3 and a half years my ch are back. Went to doctors today as had a attack last night that lasted nearly 7 hours. (New record for me). Decided to try the O2 method that heard all talking about. The doctor said no chance would he prescribe it a it's an alternative medicine that is not liscenced. He has given me  sumatriptan tablets. Anyway just wondering if anyone knows best way to get O2 in uk. Thanks chris

Hi Chris,
Your doctor is telling you porkies - He's probably more worried about his budget than his patient. It's totally rediculous to say that 02 is unlicenced, or that it's an alternative medicine. They use it every day in every ward in every hospital in the country. I have 2 family members who have it at home for respitory problems, and I myself have it delivered regularly for my CH. So does another young lady I know who is a member of this site. It's in the very air we breathe and safer than any drug. It's the first thing they give you if you need to go to the ED, whether you need it or not.

Mine is prescribed by my doctor and delivered by a company called DOLBY VIVISOL. They deliver all over the country. Your doctor needs to fill in a HOOF form. (that stands for "home oxygen something something").You need a flow rate of at least 15 litres per minute with a non-re,breather mask.
If you get either of those wrong it won't work.

If he still refuses to prescribe it for you I would find another doctor. It is your absolute right to have the correct treatment, and 02 is the first line of treatment for CH.  Do you have a neurologist - perhaps you could phone him for help. He may be willing to speak to your doctor or prescribe it himself.

Also, Sumatriptan tablets are not much good as they take too long to get into your system. Ask for Sumatriptan auto injections.They are absolutely fantastic and will abort a big one in just a few minutes. I have the 02 when I'm at home and the sumatriptan injections when I'm out. I never leave home without them.

Good luck with you doctor. Let us know how you get on.
Maz.

Can't be bought over the counter ?   Welders can buy it!!!  Lots of American people who have issues with insurance buy welders oxygen, and then fit a regulator. and buy a mask. There is a tab on the left of your screen entitled "oxygen info" highlighted yellow. Have a look there and it may help.

It can be a fire risk if you are stupid. Obviously, don't smoke while using it or for 30 mins afterwards as it can saturate clothing and furnishings, and don't use it in any room where there is an open flame ie: gas fire, cooker etc. But it has to be controlled is a bit strong. The leaflet that came with mine suggested we tell the fire brigade that we have it in the house. They said no problem. We  informed our house insurance and they too said no problem, and there was no increase in our premiums. We also told the car insurance (it can travel, but don't smoke in the car) and there was no increase there either.

If, no,when you do get it , DOLBY VIVISOL will deliver to any other address in the country if you give them 3 weeks notice, so although it can travel there is really no need. It's great when I want to visit family up north.You can also get small ones that you can carry around.

I've always said I wouldn't wish CH on my worst enemy, but I'm beginning to think all doctors should have at least one. They'd soon find that HOOF form then, wouldn't they.

In the meantime, at the very first sign of pain (don't wait till it ramps up) gulp down a red bull, really fast. It's the combination of caffiene and taurine in a sudden hit which does the trick, so any energy drink with those ingredients will do. It doesn't work for every one, but does for many, so worth a try.  It's not very conducive to sleep, but then neither is CH. Also search these boards for info on a vitamin D3 regime which has taken the CH community by storm and had great success for 80% of sufferers. And don't forget to ask for the injections. They are life savers.

Finally, I really do urge you to see a different doctor if you can. Yours is treating you like an idiot with his stupid excuses and not giving you the help you need and deserve. Some of them are just so arrogant. Two months to see a neuro is not bad - I waited 9 months for my first appointment, then he told me women don't get clusters. Fortunately I have a couple of very open minded GPs in my surgery who do all they can to help.

Hope all this helps a bit. Tell us a bit about yourself - Age, family, supporters etc.
Let us know how you get on.
Maz.

Also pain seems to have moved from mainly behind eye to temple and neck. I don't know if lack of sleep effects ch as have not slept more than a couple of hours a night for a week