Oxygen Use

Hi Richard,

You need the flow at 15 litres per minute and the rule of thumb is to stay on the oxygen until the pain has gone and then for a further 5-10 minutes just to mop up the attack.  Please have a good look on this site at the info about oxygen.

all the best

Liz

Hi Richard ,

pleased to read that you have now received your oxygen, will be a great help to you, so easy to use,

i keep mine in the spare bedroom sits beside a nice comfy chair as my attacks are in the early hours of morning I prefer to be alone so hubby knows not to appear,ha ha ...

As Liz says stay on till pain goes and then the extra time,  I have found that I check the clock then when pain has really gone I check again the time and stay on the extra 15 mins, all just to make sure,  good luck .

Elma

Hi Richard,

How did you manage to get the oxygen, im having a really bad time at the moment and my doctor wont prescribe oxygen without the consultants say so, ive rang his secretary who says they dont prescride oxygen.

Neil

Hi Neil,

You might find the document below useful to whip the GP into shape. It sets out everything they are expected to do, including prescribe oxygen for the acute treatment of CH. 

My husband is not allowed oxygen, but we used these guidelines when the GPs were refusing to prescribe adequate amounts of nasal triptans.

Hopefully you can use them to make them give you your oxygen!

http://www.nice.org.uk/guidance/cg150/resources/guidance-headaches-pdf

Best Wishes

Harriet

Hi Harriet,

Thankyou very much for this information, ive got an appoitment with the pratice manager on thursday to try and resolve some of the problems ive had with my doctors, ive had no support and been left to deal with getting stuff faxed from the consultant back to the doctors because the doctor never rang the consultant, its been a nightmare, on top of all this ive been having 5 to 7 cluster headaches some days.

As from tommorrow im trying verapimil to see if that will improve things, again thanks for the link.

Kind Regards

Neil

Hi Neil,

Good luck with the appointment. Be very interested to hear how it goes.

I am sick and fed up with all these tales of the ridiculous carry on over CH. It may be a rare condition, but we do have information technology these days for goodness sake. As far as I am concerned there is simply no excuse for so called Proffessionals not accessing the information and following the guidelines. It isn't rocket surgery! And meanwhile people suffer......... It beggars belief!

Rant over. lol. 

Harriet.

Hi Harriet,

Yes i totally agree, wiil keep you posted and thanks once again.

Neil.

Hi Neil

In the Resources section of the website, under downloads you will information on using oxygen and also a document called 'The Basics' for newcomers, which tells you how to get oxygen, injections and how to get a referral to a headache neuro.

Val.

Hi Val,

Cheers for that ill have a look, thanks.

Neil.

Hi Val,

Cheers for that ill have a look, thanks.

Neil.

Hi Val,

Cheers for that ill have a look, thanks.

Neil.

Hi Harriet,

Thought i would give you an update on the meeting at the doctors with the practice manager, well it didnt happen.

I got a phone call the day before of her assistant to say she had a death in the family and had to take some leave, i was advised that all the doctors were having a meeting last friday to look at some at the shortfalls in the way i have been treated over the last weeks and i would be abvised by letter of the outcome.

This still dosent change there position on oxygen, they insist it still has to come from the neurologist at the hospital who still refuses to give me this, he has started me on verapamil but am still having lots of cluster headaches each day. I have been using sumatriptin injections but can only have two in 24 hours, i have suffer with the other attacks, sometimes 3 or 4.

My dosage has just been increased to 120mg x 3 per day, hopefully this will start to have some benefit soon, im the meantime ive also rang PALS at huddersfield hospital who hit a brick wall like me, they tride to find out why the consultant wouldnt prescribe oxygen. They advised me to put a official complaint in againts the consultant and his team for the way i have been treated and they assure me they will hopefully be able to get me an answer why this consultant thinks he is god and withholds basic care from me.

Sorry for going on a little

Regards

Neil

Hi Neil,

This is appalling! Have you read the OUCH download 'O2 information for GPs and neurologists'?

It is very clear in that and also the NICE guidelines that GPs are expected to provide it.

In your position I would print off the OUCH info, and pages from the NICE guidelines that say people with CH must be given oxygen, and send it to the Practice Manager with a letter saying please read these and sort it out because it is unacceptable that the treatment you are supposed to recieve for a severe neurological condition is being witheld from you.

I just cannot believe the way Clusterheads are mistreated.....and so sorry that you are going through all this. 

H.

Neil,

I know that the local respiratory nursing teams are the link between GP's and the oxygen provider. They are the only people that can assess you for home oxygen and order the correct amount of cylinders etc. Why not try the back door method and contact your area respiratory nurse for advice, they may provide a solution.

This is a mess and you need O2 relief.

All the best....

John

Does anyone know how long you can use the oxygen tank for in one go? My husband has been on for 30 mins but came off. He wants to go back on but we don't know how long you can use it for in x amount of time?