Hope2SleepGuide

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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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.


Hi Sandy I'm very new to the therapy so not much help to you regarding the facial marking but just thought I would say hi .


Sandy Davis said:

Hello. I have suffered from sleep apnoea for about 4 years but have only just found this site

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.

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 

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!

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

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

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!

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!

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

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!

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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