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: 12989

Reply to This

Replies to This Discussion

It all depends how quickly each hospital work Dee.  Some people hear very quickly, yet some are kept waiting several weeks.  Hope you hear something soon, and that you got enough sleep for them to get the evidence they need. 

Hi

I received the letter yesterday my appointment is 23 April.  

Dee

Good luck Dee.

DeeNJai said:

Hi

I received the letter yesterday my appointment is 23 April.  

Dee

Hi to everyone, I'm new to the group, but I've had lots of advise, from Kath hope , I had severe sleep apnea, but after 3 months on cpap have improved greatly, I'm learning all the time, and thank you all for the information on this forum, it's helped a lot, I'm still struggling , but looks like everyone does, I'd like to say a real big thank you to Kath, she has the patience of a saint,

welcome to the group Susan, I'm glad that Kath helped you.  It's a lot to take in when you are told that you have severe SA and you have to use a machine when you sleep.  It a while to get your head around it, the book they sell on here about sleep are great I am reading CPAP and VENILATOR secrets.  I wish I had this book before i started using the machine.  I have the Kindle reversion which means I can have it read to me if I need too.  I am trying to read it on the bus when I am traveling.  

Dee 

You're very welcome Susan, and glad you're getting on well now in the first 3 months.  You'll still no doubt have more benefits to feel as your body heals from all the years of untreated sleep apnoea - many people find things continue to improve for up to a year once on successful therapy.  Do feel free to start up any new discussions for any more help you need Susan.

Dee, glad you're finding the 'CPAP & Ventilators' book of help.  Marion, the author, is a member of this forum and she's already written a book specifically for children on CPAP or who have family members on CPAP, as sometimes the children can find it quite frightening.  In fact the children's book 'A Monkey, A Mouse and a CPAP Machine' has won Wishing Shelf award.

Hello all I'm Douglas and thanks Kathy & Mike for adding me to the group.

as a sufferer of O.S.A it was great to find a site that was informative and to read bits and pieces from fellow suffers that is relevant to my own situation that i can put to use so thanks all for your input 

Great to have you Douglas, and yes we're all in this together. Have you been on CPAP long?

Hi I,m Ian, 

I have recently had the test for sleep apnea with the gadget on the finger overnight, that was on 10th March but still waiting for results.

Next door neighbour has told me today he was tested for it a few months ago and as he only stopped breathing 17 times an hour they said its not bad enough to give treatment.

At the moment I am getting 3hrs sleep a night and thats only with a fan blowing cold air across face, no fan = no sleep but I am constantly tired and have to have a sleep every afternoon.

Welcome to the forum Ian and hope you get your results soon. I'm rather surprised that your neighbour has been told that an AHI of 17 isn't bad enough to treat, as that's moderate sleep apnoea and anything over 5 warrants treatment.  I would not be happy with this at all and would be seeking a 2nd opinion!

Well I would agree with your statement but according to my neighbour, hospital down here wont give any treatment until you stop breathing 50 times an hour which I think is far too much.

Kath Hope said:

Welcome to the forum Ian and hope you get your results soon. I'm rather surprised that your neighbour has been told that an AHI of 17 isn't bad enough to treat, as that's moderate sleep apnoea and anything over 5 warrants treatment.  I would not be happy with this at all and would be seeking a 2nd opinion!

You should ask them this yourself Ian, as that doesn't sound right at all. Most people on CPAP don't stop breathing 50 times an hour - anything above 30 is classed as severe.  Even mild sleep apnoea with oxygen desaturations can cause damage.  Besides, people who only have a mild AHI of say 10 per hour, might actually stop breathing longer than someone with moderate to severe.  Things need changing at that clinic if it's true, so it will be interesting what they say when you ask them.

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 Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
Oct 17
Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service