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

Views: 12533

Reply to This

Replies to This Discussion

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.

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.

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.

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
yesterday
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Sunday
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Sunday
Becky Murkin posted a discussion

F20 AirFit small marking bridge of nose

Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
Mar 19
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted? I'll try again and I'll also discuss with the clinic whether an APAP…"
Mar 13
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Ramble alert!  My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu.  This was a very long time…"
Mar 12
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
Mar 12
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"This is NOT a recommendation http://www.youtube.com/watch?v=VNUWhd2UgQM"
Mar 11
Frances Knight posted a discussion

Air Sense 10 - changing pressure settings

I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
Mar 11
Swen Greve is now a member of Hope2SleepGuide
Mar 4
Jonathan replied to Sue Reeves's discussion A few questions..
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
Mar 3
Sue Reeves posted a discussion

A few questions..

A quick bit of backgroundDiagnosed with OSA about 7/8 years ago by my local sleep clinic and given a F &P Icon CPAP.  After a couple of follow-up appts to sort out any issues, I was sent on my merry way. I have had no further face to face…See More
Mar 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I previously had a DeVilbiss Sleepcube and the dehumidifier did sometimes run dry.  On the other hand I now have an AirSense 10 and it never runs dry, and I've had the humidity turned up high."
Feb 26
John posted a discussion

Airsense 10 -humidifier runs dry

Hi. I'm finding the Airsense 10 the hospital gave me, the humidifier chamber runs dry. It's not even on max settings, which I'm guessing would empty it a lot quicker. Seems like a big design oversight to me. Does anyone else have this trouble? The…See More
Feb 26
David Hudson posted a discussion

Decline in hearing

HiI have regular, well yearly check ups at work. One being a hearing test. Since having my cpap machine my hearing has declined rapidly in 1 ear.....could this be as a result of pressure? I believe I'm on 15cm p max h2o. I just use a nasal…See More
Feb 26
Profile Icontim richards, mark & les, Lesley Parks and 1 more joined Hope2SleepGuide
Feb 13
Jenny Wren replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"I've got lucky! I can collect a new machine next week. It's been really helpful to 'speak' to people here and to Kath. It alerted me to the fact that I'd slipped through the net. The clinic were very apologetic and now all…"
Feb 8
Ejog1 replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"Thanks. Good news for me today, my clinic did finally reply to me and they’re giving me a new machine. The person I spoke to was super helpful. The NHS clinics are great when you’re able to speak to them, but they seem to be…"
Feb 7
Jenny Wren replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"Yes, my machine is affected. Seems I slipped through the net. I'm now on the sleep clinic's radar again and am hopeful that this will be sorted soon. Thanks for your reply and stay well."
Feb 7
Jenny Wren replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"I'm sorry to hear that. I emailed Kath about this and she was very helpful. She advised me to get in touch with my sleep clinic and I have had a reply from them. I so hope that you get a response soon."
Feb 7

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service