"My sleep apnoea just requires me to pop a mask on before I go to bed. But your circumstances may be different."
Sleep Apnoea Forum Bringing Help + Support to the Patient
Welcome to our Forum - Feel Free to Introduce Yourself Here.
Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers.
Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation. Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.
Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum. Don’t be shy in posting and sharing, as we’re all in this together and to help each other.
Best Wishes for good sleep!
Kath
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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You're very welcome Tam, and as well as having a good supportive clinic, it's crucial to have fellow sufferers to talk to as well for good tips. Sleep apnoea sufferers can feel very isolated just now, but that's only because most people are still undiagnosed. However, it's a very common condition and we sufferers also have to keep raising awareness so that others struggling through life can get the help they need
Tam said:Kath thank you for taking the time to reply. Finding this forum may just be the support I need and I intend to be as pro-active as possible. Thanks for having me.
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Permalink Reply by DAVID BROOKES on
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Thank you for letting me join ..know I not on own now ..
hospital just gave me a cpap and left me to get on with . year since seen going next week but at least now I have a lot of things to ask about ..
brought a hose extenision arm yesterday and used last night . what a difference mask didn't leak and wife not moaning about noise . and no wet eyes this morning ..
they never told me to inform DVLA or anything but gave my HGV up myself was not propared to take risk and only drive car local and then only if used CPAP night before ..
Also have barretts which causes reflux when lying down was major problem at night trying to sleep but since been on CPAP no problems when on as air stops reflux
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You're very welcome David and glad you found us as there's no need for anyone to cope on their own
Some clinics are more supportive than others, but I'm surprised they didn't advise you to contact the DVLA. Fortunately, you've been sensible in not risking driving when tired!Glad you've found the Hose Lift helpful - I was the same when I found it, and wondered how I'd managed without it!
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Hi,
I thought I'd already posted on here, but obviously haven't.
Anyway, I was diagnosed with OSA in 2000, and finally got my CPAP machine from Churchill Hospital, Oxford in January 2001. They thought I had had sleep apnoea since I was about 12, caused by the shape of my jaw. I felt much better after receiving my machine. I am now on my third machine, and second ResMed S8. I use a full face mask, as I am unable to breathe through my nose.
I'm 41, and am married with 2 children. I am carer for my daughter, who has Autism. I became a stay at home Dad after losing my job in 2013 due to having Fibromyalgia.
Cheers,
David
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Thanks for the introduction David and it's amazing just how many of us can trace our sleep apnoea right back to childhood. Hindsight eh? There's a good article here explaining how 80% of fibromyalgia sufferers also have sleep apnoea http://www.sleepdisordersguide.com/fibromyalgia-overview.html and sorry to hear yours was bad enough to lose your job. On the plus side, you get to spend more quality time with your precious daughter
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Thanks for thelink, Kath. I had heard somewhere before of a link between OSA and Fibromyalgia, but that article goes into much more depth. I must have done something really bad in a previous life to end up with these!
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Aw bless you, and remember we're the lucky ones as sleep apnoea is so common, yet most people are undiagnosed at the moment!
David Henderson said:Thanks for thelink, Kath. I had heard somewhere before of a link between OSA and Fibromyalgia, but that article goes into much more depth. I must have done something really bad in a previous life to end up with these!
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Permalink Reply by Iain Noble on
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Dear Folks, I am not sure if there is such a thing as a "typical" sleep apnea sufferer? I am a 67 year old retired man who got his diagnosis and machine a couple of days ag
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Welcome Iain and whilst it's not nice to find out you have sleep apnoea, hopefully now you're on therapy you should be able to enjoy a long healthy retirement. No, there's no 'typical' sufferer, as our condition affects people of all ages and sizes (1 in 30 children suffer from this too), and the worrying thing is that most people still remain undiagnosed!
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Permalink Reply by Christine Ranaldi on
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This is a fantastic support hub, I don't have a consultant as such I only see sleep nurses. They are really nice but I feel you just get left to get on with it! I was wondering if anyone could tell me where to get a longer hose for my machine, any help would be great.
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It would probably help the nice folks n here to help you if you mentioned which model of machine you are using? Also where you are in the world?
In the meantime checkout http://www.cpap.com/cpap-hose.php
Christine Ranaldi said:This is a fantastic support hub, I don't have a consultant as such I only see sleep nurses. They are really nice but I feel you just get left to get on with it! I was wondering if anyone could tell me where to get a longer hose for my machine, any help would be great.
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Lots of people in different clinics don't seen consultants Christine once they're on good therapy unless problems arise and are handed over to the sleep nurses/techs. At my own clinic we do see the consultant every time, but this is more rare. If you ring your nurses at the sleep clinic they will probably be able to provide you with a longer hose. They give out the standard 6 ft ones, but do have longer ones when the need arises.
Christine Ranaldi said:This is a fantastic support hub, I don't have a consultant as such I only see sleep nurses. They are really nice but I feel you just get left to get on with it! I was wondering if anyone could tell me where to get a longer hose for my machine, any help would be great.
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Latest Activity
UK Attendance Allowance
Does anyone know if Obstructive Sleep Apnoea can be the basis for a claim for attendance allowance in the UK?See More
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"Ah, yes, I hadn't spotted Vueling's statement. Thank you. And your tags are very similar to the one I purchased at the start of my CPAP journey in the 15+ years ago.
My only bad experience (as I have written about here) was…"
"The link I provided to Vueling had sub-links Jonathan and this is from one of them about carrying medication onboard, and clearly states you can carry CPAP at no extra charge. I was impressed at the info provided from a flight company I'd not…"
"I have a large swing-tag attached to mine. This appears to be an up-to-date equivalent https://www.cpap.com/productpage/medical-identification-luggage-tag-cpap-equipment
The only short-haul flight I have taken was with British Airways, and it…"
"Glad you found us Antony. I had a sleep endoscopy by Bhik Kotecha many years ago but I told him he was coming nowhere near me with his scalpel lol, as I have too many reasons for my severe sleep apnoea. We have Dr Vik Veer now who runs the UCLH…"
"DVLA just create problems by not being clear about things. At least you won't need to tick the box next time as it says 'a condition you haven't reported before.' Glad this came up though as we get lots of DVLA queries at the…"
"Thanks Kath, I'll hope that they don't pick up on it if I don't tick that box in three years time! I'll apply in good time just in case."
"So pleased to have found this site, thank you. I'm a retired doctor and have had OSA for about 20 years despite having a BMI of 23, only ever sleeping on my side and not smoking. Over that time I have had five successful procedures of…"
"Thanks Kath, I had tried to contact Vueling about this but hadn't found the web page so that's really helpful."
"I had to check out Vueling as it's not a flight company we've been asked about before (perhaps they're newish). If you go to this page on their website you'll see it states you can take the CPAP in its bag and store it under the…"
"Thanks for bringing this up Antony as it's going to cause confusion like it did with you. The most important word when completing the form is 'Syndrome,' ie Sleep Apnoea 'Syndrome.' The DVLA call it Sleep Apnoea…"
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