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: 12996

Reply to This

Replies to This Discussion

LOL.  See you there......

Joanne Hollett said:
I am counting Kath, and I'm going to visit your shop now and order myself a stand... :-)


Hi,

My name is Cathy, I am a Liverpudlian living in California.  I recently joined the sleep forum and am enjoying reading your blogs.  My sister Joanne, who lives on your side of the pond, was recently diagnosed with apnea and referred me to your wonderful site.

I was diagnosed with severe central sleep apnea about 6 years ago.  I have tried to use the BiPAP twice before with no success.  This is my third try and I am determined to make it work.  I seem to get less sleep using the BiPAP than with it due to waking up with mask leaks.  I toss and turn like a fish out of water and the seal leaks when I turn on my side.  I usually cannot go back to sleep after fixing the leak.  I thought my latest mask, a Mirage FX might be the answer to my prayers, but no such luck.  The mask is whisper quiet, incredibly light and extremely comfortable to wear, but it seems to leak just like the nasal pillows.  Does anyone know of a mask designed for side sleeping mouth breathers?

Cheers.

 

Hi Cathy.  It's amazing having 2 sisters from different parts of the world joined on here :)  Incidentally, have you been tried on an ASV (Adaptive Servo Ventilator) which are supposed to be better at treating 'central' sleep apnoea?  As for full face masks, well it's the usual case of what suits one doesn't always suit another.  My favourites are the Innomed Hybrid + Respironics Fit Life (in fact there's currently an ad at the top of this page you can look at for that one).  Some people say the Resmed Quattro FX is good, but I can't vouch for it personally as I've not tried it.

Cathy Smith said:

Hi,

My name is Cathy, I am a Liverpudlian living in California.  I recently joined the sleep forum and am enjoying reading your blogs.  My sister Joanne, who lives on your side of the pond, was recently diagnosed with apnea and referred me to your wonderful site.

I was diagnosed with severe central sleep apnea about 6 years ago.  I have tried to use the BiPAP twice before with no success.  This is my third try and I am determined to make it work.  I seem to get less sleep using the BiPAP than with it due to waking up with mask leaks.  I toss and turn like a fish out of water and the seal leaks when I turn on my side.  I usually cannot go back to sleep after fixing the leak.  I thought my latest mask, a Mirage FX might be the answer to my prayers, but no such luck.  The mask is whisper quiet, incredibly light and extremely comfortable to wear, but it seems to leak just like the nasal pillows.  Does anyone know of a mask designed for side sleeping mouth breathers?

Cheers.

 

Hello fellow sleep apnoea sufferers.  I was diagnosed with SA earlier this year and have been using a CPAP machine ever since.  My husband is supportive, and my family and friends also, although having 'spoken' to Kath already online, I found it so wonderful to have contact with someone who actually understands the problems of CPAP, and cares so much about helping others.  I'm not exactly sure how these forums work, but no doubt I'll pick it up as I go along.  I am a little shy, so won't use my real name, but wish you all a 'good night's sleep.  Paulafry 

Hi Paulafry.

Welcome to the forum and hope that you get help whenever you need it. People share their experiences and sometimes it is good to know that you aren't alone with stuff like leaking masks and "rain out". (It's like learning a completely new language!)

The companies that sell the gear look at the site too so it is hopefully helpful for them to see what the problems are and offer us a better service. We are definitley lucky to have someone like Kath on our side aren't we? Bye for now and hope you had a good night last night.

Rosemary

pauline yeomans said:

Hello fellow sleep apnoea sufferers.  I was diagnosed with SA earlier this year and have been using a CPAP machine ever since.  My husband is supportive, and my family and friends also, although having 'spoken' to Kath already online, I found it so wonderful to have contact with someone who actually understands the problems of CPAP, and cares so much about helping others.  I'm not exactly sure how these forums work, but no doubt I'll pick it up as I go along.  I am a little shy, so won't use my real name, but wish you all a 'good night's sleep.  Paulafry 
Hello Rosemary, thank you for your warm welcome.  I completely agree with you regarding how lucky we all are to have Kath with us in this.  The difference between people we know who are supportive, and those that know from personal experience what it's actually like to use the masks and machines is enormous.  Well, so far, I've managed to correct my email address that I'd mis-typed and alter my profile, now I just need to learn how to post replies...not sure if I've done this correctly, so this is a bit of a trial run.  So, 'bye for now and 'sleep well'.  Paula

All done correctly as you will see. I'm also convinced that I'll get it wrong (and often do!) 

 

I'm taking my old cpap machine away with me this weekend as I have it all packed up. It will be interesting to see if I still remember how to get that right! I've become very used to my new apap machine. It will be good to get a comparison.

 

Best wishes,

Rosemary  

 

 

Hi all!

 

Just saying hello. Diagnosed 6 weeks ago and so far really feeling the benefits of treatment. A few teething troubles but the effort is well worth the end result:-)

 

All the best and look forward to talking to you all

 

Jude

Hi Jude (not quite the same as the song!)

I'm so pleased that you have already started to feel the benefit of the treatment. It isn't always plain sailing but it does make an enormous difference to us doesn't it? As you get to try the comfort products and other bits and pieces over time, you will find that the condition is quite manageable. One really nice thing to try is to put something like a reed diffuser near to the air vent on the machine so you get lovely fragrance through the tubing and mask.

Wishing you well on this strange adventure!

Rosemary  

Jude Olds said:

Hi all!

 

Just saying hello. Diagnosed 6 weeks ago and so far really feeling the benefits of treatment. A few teething troubles but the effort is well worth the end result:-)

 

All the best and look forward to talking to you all

 

Jude

Hi Rosemay and well done for swerving the "hey Jude"!:-)

 

I will try your tip with the reed diffuser, that had never crossed my mind but sounds like a great idea.

 

All the best

 

Jude

Hi, I am Daz. I am 45, and have just been diagnosed with OSA, with 36 dips/hour. Apparently I have probably had it since my teens going by the signs (even the neighbours have complained about my snoring). I have never really been able to sleep, always blaming it on my stressful job (registered care manager). Now that they have put it down to something, I make it my duty to learn everything I can about it.  I have been told I have a 6 week wait now for a CPAP machine... That is driving me insane, like having a winning scratch card, and nobody will cash it. Is it totally impossible to get second hand machines to fill in the gap? 

Hi Daz and welcome!  So you're just at the beginning of your journey......and 6 weeks feels like a long time to wait now you've got your diagnosis - the first part of your journey.  Some clinics are quicker than this these days.  Won't hurt to ring to say you'll accept a cancellation at short notice as you're desperate to enjoy a healthier christmas ;)  Now you're in the system it would be best to keep in the system and be titrated for the correct pressures.  Keep nagging!

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