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        Cluster Headache Help and Support >> Cluster Headache Specific >> Oxygen in the UK
        
(Message started by: theimage on Nov 18^th, 2006, 10:19am)

Title: Oxygen in the UK
Post by theimage on Nov 18^th, 2006, 10:19am

I hear a lot of Americans talking about oxygen for CH but is there anyone in the UK that has succesfully got it from the doctors? They sort of look at me funny when I mention it.

Title: Re: Oxygen in the UK
Post by astings on Nov 18^th, 2006, 10:39am

Oxygen therapy is available in the uk

Your GP will need to complete a Home Oxygen Order Form which will be faxed to the oxygen company and they will contact you direct to arrange delivery. The oxygen company will supply the cylinder, complete with the correct flow regulator and non-rebreather masks and tubing.

If you need any more info either post here or IM/ email me.

Tom ;)

Title: Re: Oxygen in the UK
Post by Yorky on Nov 18^th, 2006, 2:02pm

air product's uk ......homecare helpline 08000 373 580

Title: Re: Oxygen in the UK
Post by NovellRed on Nov 19^th, 2006, 12:30am

You have welders in the UK, you have oxygen. Same stuff the tanks are treated differently, but heck the tanks are under pressure the only thing that could contaminant a tank would be connecting it to a higher pressure source.
Oxygen is like magic for me. I do whatever I need to obtain it.
Yes medical O2 would be best, but sometimes you have to do things for yourself.

Title: Re: Oxygen in the UK
Post by pubgirl on Nov 19^th, 2006, 12:38am

on 11/18/06 at 14:02:15, Yorky wrote:

air product's uk ......homecare helpline 08000 373 580

Different areas of the Uk have different 02 suppliers. Air Products may not be the right one, and in any case won't supply diddly squat without a GP authorisation.

"astings" is, I promise you "the man who knows" in the UK so "theimage" I would take him up on his offer. Most UK sufferers use 02.

Wendy

Title: Re: Oxygen in the UK
Post by The Image on Nov 19^th, 2006, 6:06am

Yes, I really ned to look into this. My problem in the past is that I think of all this while having CH attacks and then when they stop, my mind thinks 'Oh well, that's that for at least another year' so I do nothing (lazy) and then a year later I'm back on CH wishing I'd done something which is where I'm at now.

Title: Re: Oxygen in the UK
Post by davyp on Nov 19^th, 2006, 6:15am

Hi the image,

Go to your GP and tell him to look in his BNF (The gp`s prescribing bible) under cluster headaches and he will see that O2 is listed as a treatment for CH.
I would also recommend you have a chat with TOM (astings) as i am sure he will be able to help.
I used to use O2 and it is a godsend but unfortunately not for me at the mo as it seems to have lost its effectiveness, that said i would still recommend it to all.

:) Dape :)

Title: Re: Oxygen in the UK
Post by LeLimey on Nov 19^th, 2006, 7:34am

Image another "selling point" for your GP is cost!
Imigran injections are the only licensed treatment for CH in the UK and will cost them £56 per day for you.
O2 doesn't actually come out of your surgeries budget as it's paid for centrally by the NHS. It's also considerably cheaper. To give you some idea of how long it takes if you go to see your doctor tomorrow and he faxes your hoof (Home Oxygen Order Form) you could have a delivery weds/thurs. They supply masks and everything so it is delivered ready-to-go.
You need to have a flow rate of 15 litres per minute and your doctor needs to write cluster headaches on the HOOF and also tick the box for ambulatory Oxygen so you get some small canisters you can carry around.
I swear by O2, it's my favourite abortive. I can abort a hit using o2 in 5-7 minutes (using a clustermasx)

Helen

Title: Re: Oxygen in the UK
Post by Tybo on Nov 19^th, 2006, 2:08pm

Once you've got the HOOF form filled out,it seems to be the easiest thing to get hold of in my opinion.
When you're running low,you just phone the suppliers direct,and it's delivered to you're door within a day or two. ;).

hope you get it sorted :)

Title: Re: Oxygen in the UK
Post by LeLimey on Nov 19^th, 2006, 4:07pm

I have another question for you both Image and Tybo? Are you episodic or chronic and if episodic, how long do your cycles last?
Humour me! I have a good reason for asking as you are both in Air Products regions (as am I!)
Helen

Title: Re: Oxygen in the UK
Post by chopmyheadoff on Nov 20^th, 2006, 5:53am

hi mate , i was having the same trouble with my gp.
I "grassed him up" to my neuro who wrote him the following letter :-

Dear DR ***
I have spoken to andrew on the phone today. There is no problem with him using imigran as this works for him and i think it is unlikely to have any significant effect on his heart. He is very keen to try oxygen and unfortunately i cannot prescribe this because it has not gone through the medical drugs and thereputics committee at the walton centre. I have been trying for over 5 months to get the pct to give us directions about oxygen but i have only just managed to arrange a meeting. The lead on oxygen has been very difficult for us as a hospital to track down what we are supposed to do. That said, all of my patients who see me for cluster headaches are recieving oxygen with no difficulty from their GP's and i have spoken to several GP's who say they are using the HOOF form with no difficulty. For those that arent wanting to use this system i understand they are still using the old fasioned prescription and getting a cylinder of oxygen and then the patients get a regulator which allows 100% high flow oxygen. this is not the same as hyperbaric oxygen but purely a higher flow rate of oxygen which is not mixed with air .
Please prescribe this for andrew immediately using whichever method is in use at your practice and contact my clinic should there be any issues regarding this.

with best wishes
Dr N.C.Silver
(letter edited for length)

i should note that he mentioned hyperbaric oxygen because thats what my gp started to bleat on about when i mentioned oxygen !!

and whadda you know ???? you got it - oxygen is now on its way and GP can consider himself told !!!

way to go Dr Silver

Title: Re: Oxygen in the UK
Post by Tybo on Nov 20^th, 2006, 10:50am

on 11/19/06 at 16:07:19, LeLimey wrote:

I'm episodic,and how long my cycles last is difficult to explain.Well lately they have been anyway.
My cycles used to be like clockwork,but now,they're all over the place.
They used to last from 2-4 weeks,4-6 times daily.
This one started about two weeks ago,but my last was a Kip 10 last thursday,where the oxygen wasn't having much effect.
Picked up my first prescription of Immitrex injections to
try out last Thursday,but have been PF since :D.

Why do you ask ?

Title: Re: Oxygen in the UK
Post by LeLimey on Nov 20^th, 2006, 10:56am

Different O2 options - namely liquid Oxygen is available for those with long cycles or who are chronic. If you had been either I would have made sure you knew all about it as its a really good option to have when you use O2 daily as I do!

Im glad for your sake you have such relatively short cycles though - I hope this one is over for you soon
Helen

Title: Re: Oxygen in the UK
Post by Tybo on Nov 20^th, 2006, 11:14am

I've never heard of the liquid oxygen,but i suppose i haven't really had to find out about it.

I can only imagine what it must be like to be chronic :-[

The only thing that gets me through,is knowing it's going to end.

I guess i must be one of the luckier one's.

I feel for you. :'(

Title: Re: Oxygen in the UK
Post by LeLimey on Nov 20^th, 2006, 11:22am

This has been discussed here before Tybo, those who are chronic always say they wouldn't want the fear of it coming back hanging over their head, at least we know what we have to deal with and those who are episodic fear the continuity. You learn to play the hand you're dealt I guess!