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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> O2 in the UK
        
(Message started by: southwalessunshine on Jul 10^th, 2007, 7:12am)

Title: O2 in the UK
Post by southwalessunshine on Jul 10^th, 2007, 7:12am

Hi all,
I'm new to this place and have heard alot about the benefits of O2. My doc or consultant have never even hinted of it's benefits or mentioned it to me in any way. I have been led to believe that beta blockers or anti epilepsy drugs are the end of the line for me and as I'm severly asthmatic I cannot take beta blockers and am scared of going down the epilepsy road just yet. Some of the meds mentioned here are completely alien to me! is that because we get different stuff here in the Uk? I have noticed a few Uk people have got O2 from their docs, how do i get them to take this as a serious option? How do I put it to them and get a positive result?
Also I have been interested in reading that many of you go to the ER when you're in the midst of a really bad attack. i have felt like this many, many times and my partner begs me to let him take me there. I have never taken this as a reality though, i guess I'm scared that they'll send me away as an over reactor?! Is this just me being a typical british martyr or is CH just taken more seriously in other countries? I was admitted once yrs ago with an extremely bad attack and got given 3 lumbar punches, when they realised it was a headache they discharged me pronto, I felt like a fool and think this may have put me off going again. Howver whilst there they knocked me out and that was great! Are there any brits here who do goto casualty to be knocked out and freed from the pain? how are you generally received by the hospital? Are you made to feel like you're putting it on or are they understanding? The only meds I have been given are sumatriptan pills and the self injector, I have no abortives or preventatives at all, so sometimes the lure of the hospital could help out alot. Or should I just demand O2 and see if that does the trick? Can I demand it? help! I'm all confused! [smiley=huh.gif]

Title: Re: O2 in the UK
Post by andrewjb on Jul 10^th, 2007, 8:51am

:), hello, suthwalessunshine. have a look at the link to ouch uk. <http://www.ouchuk.org/html/> good luck. andrew.

Title: Re: O2 in the UK
Post by southwalessunshine on Jul 10^th, 2007, 9:10am

Hi Andrew,
Thanks for that, at least i can go to the doc armed.
However, i am always made to feel alittle bit like fraud when i visit my doc surgery and could do with talking to some fellow brits that actually got O2 from the doc. Do you personally take it Andrew/
i just want to know how difficult it was to get it prescribed and are docs generally willing to prescribe it or did you have to fight for it? AsI said before it has never even been discussed with me, even by a consultant.
Thanx

Title: Re: O2 in the UK
Post by andrewjb on Jul 10^th, 2007, 9:17am

:). there are people here and on "ouch(uk)", that swear by it. read, read and read some more. have a look at the oxygen info, on the left. not sure but i would imagin that "ouch(uk)", have a simalar link. andrew.

Title: Re: O2 in the UK
Post by Squanto on Jul 10^th, 2007, 10:18am

Sorry you have cluster headaches - glad you found this resource.

Your reluctance to seek help at the "casualty" (called the ER over here) is understandable. Some times the wait is so long the worst of your current headache has passed before they get around to seeing you.

Here's a couple of tips that may help the helpers help you.
- Don't just say "my head hurts"
tell them you have a recurring one sided headache that is associated
with (whatever other signs you may have)
- the pain occurs at the nearly same time each day
- the pain is always on the right (or left) side of your head.
- your eye is congested on the same side that your head hurts
- your nose is congested and runny on the same side that your head hurts
- your forehead sweats on the same side that your head hurts.
- that you've had episodic headaches before (if you know your cluster headache cycle - tell'em.)
- tell 'em if other doctors have made a diagnosis of Cluster Headache, (speak clearly and emphasize so that they don't forget!!)
- if you've gotten relief from the sumatriptan injections (that's an abortive) tell them.
If you think your pain is so bad that you won't be able to tell them all this at the time of your visit - write your information down ahead of time and carry the note with you.

All this helps the folks in the ER to sort you out from the "everyday tension headache " or the "life-threatening" headache of meningitis or cerebral bleeding.

Remember, the "experts" say and write medical articles about the benefit of high flow 100% Oxygen in treating cluster headaches. Offer to provide the medical evidence if your primary care givers are ignorant. (OBTW: don't call them that, just help educate them. Stupid is permanent, ignorance can be helped.)

Squanto

Title: Re: O2 in the UK
Post by aloneuk on Jul 10^th, 2007, 10:33am

hiya

o2 is a life saver to me 99% of the time, when i 1st asked my doc about it she was a little shocked and said she would ''look into it'' two days later she phoned and said no problem and i got it that day.now i just ring them up when running low and get it straight to my door. its really worth asking about and to be honest i would demand it !!

as for going into A'n'E ive done it twice and the 1st time was horrible they really didnt understand the pain and gave me 1 tramadol pill !! about a month later i had a 3hr k9 and really couldnt cope and went into A'n'E and they were no better but i did get o2 that time.

so if your really in a mess id say it may be worth it just to get o2. but for now get your self some red bull and get your self to the doc and demand oxygen !!!
red bull works for quite a lot of us if taken so soon as you feel a twinge !

i really hope you get a break soon
ike x

Title: Re: O2 in the UK
Post by LeeS on Jul 10^th, 2007, 1:30pm

Oxygen therapy is normally readily available in the UK for CH sufferers. It is a recognised treatment (as stated in the British National Formulary), although many sufferers over here continue to find it difficult to source, for a variety of reasons which I won't go into here.

As from 2004, O2 should be delivered to your door by the oxygen supplier who won the tender for each designated region (previously it was sourced via prescription from a pharmacist). All cylinders now come complete with an integral high flow regulator (up to 15 l/m) and non-rebreather masks (although I would personally recommend the clustermasx!). Suppliers should be able to deliver by the next working day, but for true emergencies they must deliver within four hours. Normally, my delivery takes 2-3 working days; and from a very, very, nice man ;)

Sourcing O2 can be quite complex initially, but once sorted, it will be readily available to you free of charge. Firstly, you need to get your GP to accurately complete a HOOF (Home Oxygen Order Form), and he/she then faxes to the supplier that covers your region. Sometimes it is easier for you to personally complete the form and just get your GP to sign it.

Full details can be found at the OUCH (UK) site as quoted by Andrew, but at the moment they are changing servers so they may be off-line for a while. They have full details about how to successfully source O2, including how to complete a HOOF.

This is what they say about O2 in general:

Quote:

Oxygen

Breathing in pure oxygen at a rate of between 7 to 15 litres per minute is relatively fast acting in providing pain relief amongst most sufferers. It should be inhaled continuously for 15-20 minutes using a non-breathing mask i.e. one without holes.

Sufferers of CH should use the high flow rate regulator, which now come integral to all oxygen cylinders supplied for home use in the England and Wales for CH. The low rate regulator (2-4 litres per minute) is generally unhelpful. In Scotland, sufferers of CH should use a bespoke high flow rate regulator, which unfortunately is not available on the NHS in most areas and therefore is not usually an option for sufferers who can't afford it (although a loan regulator is still available through OUCH (UK).

Hope this helps but please just shout if anything is unclear.

-Lee

Title: Re: O2 in the UK
Post by southwalessunshine on Jul 12^th, 2007, 6:21pm

Thank you all so much for your comments and advice.

i visited my Gp surgery and decided to see someone new as my regular doc isn't too great when it comes to my CH. The guy I saw was awesome! he took me seriously as soon as i told him I had CH, he had come across it before and it's a personal interest to him(how lucky was that?).
He hasn't personally heard of the benefits of O2 but is going to look into it and hopefully get enough evidence to approach our local health Authority and request O2 for me. I'm feeling a little more positive about it at the moment.

As far as visiting ER, I have visited Er once before,many yrs ago. They thought I had meningitis as I was so bad. They gave me 3 lumbar punches but I never even felt them. When they finally realised it was Ch they discharged me on the spot! i felt so helpless I guess it kinda put me off going again. Anyway, hopefully if I can get the O2 going I shouldn't need to go to ER.

Title: Re: O2 in the UK
Post by michael on Jul 13^th, 2007, 5:16am

Don't doctors just piss you off. They just don't understand the urgency to get relief with this condition.

How can a doctor have a personal interest in cluster headaches and yet not have heard of oxygen therapy.

All he needs to to do to research it is to look up the OUCH site.

For you to get oxygen all he has to do is fill out a HOOF (Home Oxygen Order Form) and fax it to your local oxygen supplier and you should have oxygen in 3 days.

The notes that come with this form show your supplier for Wales to be Air Products.

You can get your own copy of this form to take to your doctor if you wish.

Search google (pages for the UK) for: HOOF form
It will be the first item listed.

Don't let him fob you off any longer.

PF vibes on their way to you.

mike