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New to Oxygen - Advice Please

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#1 Thu, 23/06/2016 - 17:27
MissKittyB
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New to Oxygen - Advice Please

Finally the big O2 bottle has arrived! Not very attractive is it? Looks like I've taken up welding in my spare time. Methinks I will have to knit some kind of extended toilet-roll cover  for it. And the mask smells 'orrible!  I've stuffed it behind the sofa for now.

Anyway.... I'm not sure how and when to use the stuff. At the first mild twinge that may or may not develop? When I just get a 'feeling'?  When the Demon Woodpecker is right there in my eyeball ? And how long for, and how often. And what sort of breathing?

The neuro may have explained this,but I was in brain-fog at the time, so in one ear......

Many thanks in advance for the avalanche of replies! Biggrin xxxxx

Miss KB.

 

MissKittyB.

Thu, 23/06/2016 - 23:25
Andymac
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Hi Miss Kitty,Great to hear you have finally got your Oxygen,I really hope it works for you.

The general rules with using oxygen is to get on it as soon as you can at the first sign of the attack starting and you need it up at 15 litres from the start then just breath as normally as you can (it generally takes 20-30 mins for the attack to go) ,but just remember we are all different and it may take you a bit less or a bit longer time.Once the attack has gone then stay on your oxygen for an extra 5-10 mins just to make sure the attack has completely gone as if you come off it too soon you could end up getting re-bound attacks.

Also you can use your Oxygen as many times a day as you need to.

Good luck.

Andy (ouchuk helpline supervisor)

Sat, 25/06/2016 - 08:42
MissKittyB
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Thanks Andy. I wasnt using it correctly - not long enough.

Hopefully I'll get a better result next time.  Good

Miss KB

MissKittyB.

Mon, 27/06/2016 - 09:02
Val
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Read this Kitty, its in the downloads section of the Resources page on the website: http://ouchuk.org/sites/default/files/downloads/high_flow_oxygen_therapy...

Val

Wed, 03/01/2018 - 20:58
Sheppy
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Hi guys, just been to see my doctor for my o2 as just started my bout after 2 yrs off. 

she filled in the HOOF form but it has been rejected. The reason was that o2 is now being heavily regulated due to increased risk of having it at home. She shown me the screen that had a big stamp on it saying this can now only be prescribed by a neurologist and home oxy has been taken off the list of cluster headache treatments UK GPs are able to prescribe. 

she is a good doc and has prescribed a ton of Suma inj on repeat prescription. 

She has put in another asap referral to the neuro for me. 

has anyone else had this problem? 

Thanks
Sheppy

Thu, 04/01/2018 - 12:37
Val
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Hello Sheppy

We're checking up on this, we've had no notification of changes regarding CH.  What has come in in recent months is something called an IHORM, where the GP has to assess if you are a suitable candidate for home oxygen, i.e. you don't smoke, or no-one at h ome does, that you don't live in a h ouse of multiple occupation, etc. etc.  Basically it is a risk assessment.  I'm waiting for updated advice from the oxygen companies.  Watch this space. 

Val. 

Thu, 04/01/2018 - 16:29
Val
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I have heard from Baywater who supply Wales and two o r three regions in England, and they state that there has been no change to the way in which GPs can prescribe high flow oxygen for cluster headache, using the Part A form.  Further, the form we have on our website under Resources/downloads is the correct and up to date form to use.  It is part completed ready for a CH sufferer.  What is new is the GP has to complete a form called an IHORM  [home oxygen risk management form] and has to sign on the Part A HOOF form to say that he has completed the the risk management form, if he does not sign that part of the form, it will be rejected.  This info may be of help to you: https://ouchuk.org/basics.   There has been no other change to prescribing of oxygen.  Obviously Baywater cannot speak for other oxygen companies.  What region of England are you in?   If there had a major change then they would usually be across the board and we would have received notification.  

Perhaps your GP is not familiar with using the Part A form, and the NICE guidelines for prescribing for CH.  

The oxygen supply company will deliver provided the form has been completed properly by the GP to say they have done the IHORM, put the patients details in and the surgery details.  

Let us know if you have further problems. 

Val.

 

Fri, 05/01/2018 - 00:54
Sheppy
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Brilliant information thank you Val. 

I will spend another decade trying to book a GP appointment again, print off the form and take this information with me. I agree, I think she wasn’t aware of this part of the form or she was trying to use an old hoof form I had from last time. I am in Manchester, so North West. 

I also learnt that Sun-pharmaceuticals have discontinued Sumatriptan injections and now the only available brand is imigran. With this, everywhere is now out of stock of imigran due to high demand. I had to travel 80 miles today just find a chemist that had some in stock for my prescription. 

Theres always something! I will try again with this information you have provided and hopefully get my first line of defence back!

Thanks
Sheppy

Fri, 05/01/2018 - 10:08
Val
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Sorry to correct you Sheppy, but the Sun ones are available, there has been a shortage of the GSK ones though.  A couple of years back Sun did stop production and upgrade their production process and they have been available again since 2015.  My surgery pharmacy has been dispensing the Sun ones ever since then.  I've checked to see if there is any notification from the pharmaceutical industry about Sun production, but nothing found. 

Good luck and we have a current Part A HOOF form available to download on our website: https://ouchuk.org/sites/default/files/downloads/hoof_part_a_2017_0.pdf

Val. 

Mon, 08/01/2018 - 14:34 (Reply to #9)
TonyMc
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Hi

 

I was told before Christmas by my GP that he was not allowed to prescribe me oxygen despite me showing him the HOOF from I downloaded from here. Despite my polite insistence and "undeniable Irish charm" I was still refused and told  I could only get o2 from a neurologist.

To add insult to injury I was given 4 sumitriptan injections to last the whole of Christmas and was subject to a number of CH attacks with no meds!!!   Agghhhh!

I kicked up such a fuss I now have an appointment with a neurologist this wednesday Jan 10th

All advice welcome please  I am new to this   I know I need O2  What do I ask for?  What do I insist on?

Help please

Wed, 10/01/2018 - 11:41
Val
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Tony read this its from this website, under Cluster Headaches, called 'The Basics'  : https://ouchuk.org/basics, it explains in there how to ask your GP for oxygen and what form  to download and take with you to the GP.  The same form can be used by the consultant.  Also you will note from 'The Basics', that NICE have written 'headache pathways' specifically for GPs and it tells them in there they can prescribe oxygen on the Home Oxygen OrderForm, also in 'The Basics', it explains that every surgery has a copy of the Home Oxygen Service specification in which it states that the Part A form can be used by GPs for prescribing oxygen for pain conditions such as cluster headache.  Also on the Home Oxygen Order Form, [in the Resources and Downloads section of the website] is a part completed Home oxygen Order Form ready for a CH sufferer to download and take to their GP and in the list of conditions on the form for which the Part A form can be used, at no 18 is cluster headache.  If your GP still refuses to prescribe it for you, then we suggest you speak to the Prescribing Adviser at your Clinical Commissioning Group [CCG - used to be PCTs] and tell them you are being denied a medication which is listed by both the BNF [GPs prescribing bible] and NICE for your diagnosed condition.  Probably   the consultant won't know how to prescribe the oxygen, but the HOOF form can be completed by him.  See 'The Basics' document for how and who submits the form to the oxygen company who then contact you direct to arrange delivery.  

This information is all on this website and there is a wealth of info on other aspects of living with CH, prescribing, treatments etc.  

Val. 

Wed, 10/01/2018 - 11:41
Val
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Oh and is your neurologist a headache neurologist? 

Val

Thu, 11/01/2018 - 14:16
TonyMc
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Thanks Val

The neurologist was fantastic as was his assistant.

Oxygen ordered, sumatriptan injections ordered, upped dosage of verapamil. Feeling more capable of dealing with this now.

Before my appointment, I had visited my  pharmacy with a renewal prescription for sumatriptan  only to be told none were available until Jan 15th.  Luckily for me my neurologist kicked ass and made it all happen.

I think one of the most stressful things is doctors either not listening or not understanding. 

 

Just a quick note to also say you guys at OUCH at fantastic  Thank you

Tue, 16/01/2018 - 18:25
Dorothy
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That's brilliant news, Tony! So pleased for you.

Dorothy

Fri, 26/01/2018 - 09:13
Val
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Excellent news Tony, glad we could help. 

 

Val. 

Fri, 02/02/2018 - 14:44
Ed
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Hi Everyone 

I started with epesodic CH in my late 20s (25 years ago) and was lucky enough to have a doctor who was right up on the subject. At the time the only oxygen available on the NHS was at 2 l/min but my doctor worked round this by making it possable for me to buy a multiflow O2 regulator myself (through the local Pharmacist). Oxygen was then prescribed through my Doc and I collected it at the pharmacy . All good,Thank you Doctor Disney! 

My headaches would last for a 1-2 month period suffering with 2-4  daily and would reoccur at 1-2 year intervals 

As time passed oxygen supply changed to direct supplier as it is now and I have move area twice. 

Over 6 years have now passed since my last bout and I thought I was CH free (4 years ago I had a PE and it was found I had a blood condition called protien c deficency and have been on Rivaroxoban ever since. I came to the conclusion this new drug perhaps stopped my CH) Unfortuanatly not, as I now find myself once again having up to 4 attacts a day, they started last Saturday. I went straight to the docs on Monday morning (new doctor who hasnt help me with CH before) He prescribed me 2 sumatriptan immediately (fantastic! I thought that will last me!!) I explained to him once again, so he put it on repeat and upped it to 4. He proceeded to tell me he couldn't prescribe the oxygen as things had changed and I had to see a neurologist. I assumed this was correct and headed straight round to the pharmacy to collect my 2 Sumatriptans ! 

After reading up on here that my doctor can prescribe oxygen I went straight round armed with all the relevent print outs  to be told theres no available appointments, I asked that they give the doctor the notes I had printed off from here. 

Ive been informed today that they have spoke with the neurologist team at Stoke general hospital and they have backed up the doctor and said he can't prescribe oxygen without me being seen by the specialist . The earliest appointment for this is in 95 days ! (clearly time to emmigrate) 

My doctors surgery have offered me a referal letter for me to pay private if I want to be seen earlier! I have begrudginly said yes

Any help or advice on this would be appreciated 

I am cuirrently, seriously considering driving down to BOC and picking up some welding oxygen 

Cheers 

Ed 

Fri, 02/02/2018 - 16:49
TonyMc
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Hi Ed

 

Your dilemma reads just like mine but I was lucky to get a better outcome

I kicked up a major fuss because I had numerous attacks without any meds or O2

 

I insisted on seeing an emergency doctor I went from a paltry few Sumatriptan injections to a decent supply. I now have oxygen.  The neurologists will hopefully try and push your case forward but hard as itis can I suggest you keep hassling the doctors until you get what you need. Its a lot better than the pain

I am no expert but this site is a great help. I am also on Verapamil which is really helping.

Good luck

 

Tony

Fri, 02/02/2018 - 17:15
ElizabethK
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Hi Ed,

Sorry to hear about the trouble you are having.  Was it Dr Davies’s team that said you could not have the oxygen at Stoke?  If it was, he may have another medical reason for wanting to see you first before he orders the oxygen.  If it was not Dr Davies, ask to be referred to him!

take care

Liz

Fri, 02/02/2018 - 17:38 (Reply to #18)
Ed
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Thanks Tony

Fri, 02/02/2018 - 17:42
Ed
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Hi Liz 

Thanks for your reply 

I live in Tean so I have been using the Docs in the village. Is Dr Davies the neuologist at Stoke hospital or like  a GP local to you ? 

Cheers 

Ed

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