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: 12994

Reply to This

Replies to This Discussion

Hello,

I was diagnosed with moderate to severe sleep apnea yesterday.

I am awaiting a CPAP machine as there is currently a shortage.

I'm 61 years old and have probably been undiagnosed for years.

Any information etc., would be greatly appreciated .

Hi Kath,

Thanks for the swift response and information, I have purchased the 2 night sleep study.

Many Thanks,

Mark

You're welcome Mark. I think we currently have about a 10 day waiting list, and as soon as you're at the top you'll be sent a link to complete the required COVID and health questions, and look forward to helping you again soon.

Mark said:

Hi Kath,

Thanks for the swift response and information, I have purchased the 2 night sleep study.

Many Thanks,

Mark

Hi Karen

Sorry but pleased as well to hear you've just been diagnosed, because once you're on CPAP you should start to feel so much better and should be protected from the many other conditions untreated sleep apnoea causes or exacerbates https://www.hope2sleep.co.uk/sleep-apnoea-information.html

Hopefully, you won't be waiting too long for the CPAP, but in the meantime try to be working out whether you're a mouth breather or not during sleep as this will help the sleep clinic give you a suitable mask to give you a good start.

If you have a Facebook account we have a very good Private Support Group with UK sleep nurses help with our support too, and you're welcome to join https://www.facebook.com/groups/SleepApnoeaSupportAndAwareness/

Karen Harris said:

Hello,

I was diagnosed with moderate to severe sleep apnea yesterday.

I am awaiting a CPAP machine as there is currently a shortage.

I'm 61 years old and have probably been undiagnosed for years.

Any information etc., would be greatly appreciated .

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.

I know nothing about TMJ, and have no experience with this Sleepweaver mask https://www.cpap.com/productpage/sleepweaver-anew-full-face-cpap-mask but might that work for you?  I carry a Sleepweaver nasal mask when I am travelling as an emergency backup.

Fran Hiam said:

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.

Hi,

I am relatively new to cpap. I was provided with 2 face masks and 2 nasal masks and have been trialling all of them. I think I am both mouth an nose breather but only one nasal mask seems to suit me enough to keep it on most of the night. I too have nasal congestion ( both mouth and nose gets very dry) I tried sesame seed oil for nostrils but with little success. Am currently using a sea water salt solution spray ( and ensuring the humidifier is on ) Make sure you're hydrated.
Do NOT use petroleum jelly in the nostrils as it can get into the lungs and there it stats possibly causing pneumonia..

I have to say I have found it very difficult to 'love' my cpap machine as it advises in the literature. I get a panicky feeling and can't seem to breathe correctly, even the 4:4 breath. Takes me ages to drop off to sleep...then I have it all over again after bathroom visits. I am persevering though!

Good luck x
Fran Hiam said:

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.

Thanks so much for your reply. The sleep weaver mask looks like a possibility and i do like the sound of it. Will do a little more research into it. 

Jonathan said:

I know nothing about TMJ, and have no experience with this Sleepweaver mask https://www.cpap.com/productpage/sleepweaver-anew-full-face-cpap-mask but might that work for you?  I carry a Sleepweaver nasal mask when I am travelling as an emergency backup.

Fran Hiam said:

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.



Linda Lyon said:

Hi,

I am relatively new to cpap. I was provided with 2 face masks and 2 nasal masks and have been trialling all of them. I think I am both mouth an nose breather but only one nasal mask seems to suit me enough to keep it on most of the night. I too have nasal congestion ( both mouth and nose gets very dry) I tried sesame seed oil for nostrils but with little success. Am currently using a sea water salt solution spray ( and ensuring the humidifier is on ) Make sure you're hydrated.
Do NOT use petroleum jelly in the nostrils as it can get into the lungs and there it stats possibly causing pneumonia..

I have to say I have found it very difficult to 'love' my cpap machine as it advises in the literature. I get a panicky feeling and can't seem to breathe correctly, even the 4:4 breath. Takes me ages to drop off to sleep...then I have it all over again after bathroom visits. I am persevering though!

Good luck x
Fran Hiam said:

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.



Fran Hiam said:

Hi Linda 

Thanks for your reply. I tried the saline solution but it only helped for about half an hour. I now use a hayfever spray which lasts for about 6-7 hours.

it is quite hard to get used to cpap but you do start to feel less exhausted after a while.

Fran.

Linda Lyon said:

Hi,

I am relatively new to cpap. I was provided with 2 face masks and 2 nasal masks and have been trialling all of them. I think I am both mouth an nose breather but only one nasal mask seems to suit me enough to keep it on most of the night. I too have nasal congestion ( both mouth and nose gets very dry) I tried sesame seed oil for nostrils but with little success. Am currently using a sea water salt solution spray ( and ensuring the humidifier is on ) Make sure you're hydrated.
Do NOT use petroleum jelly in the nostrils as it can get into the lungs and there it stats possibly causing pneumonia..

I have to say I have found it very difficult to 'love' my cpap machine as it advises in the literature. I get a panicky feeling and can't seem to breathe correctly, even the 4:4 breath. Takes me ages to drop off to sleep...then I have it all over again after bathroom visits. I am persevering though!

Good luck x
Fran Hiam said:

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.



Fran Hiam said:



Fran Hiam said:

Hi Linda 

Thanks for your reply. I tried the saline solution but it only helped for about half an hour. I now use a hayfever spray which lasts for about 6-7 hours.

it is quite hard to get used to cpap but you do start to feel less exhausted after a while.

Fran.

Linda Lyon said:

Hi,

I am relatively new to cpap. I was provided with 2 face masks and 2 nasal masks and have been trialling all of them. I think I am both mouth an nose breather but only one nasal mask seems to suit me enough to keep it on most of the night. I too have nasal congestion ( both mouth and nose gets very dry) I tried sesame seed oil for nostrils but with little success. Am currently using a sea water salt solution spray ( and ensuring the humidifier is on ) Make sure you're hydrated.
Do NOT use petroleum jelly in the nostrils as it can get into the lungs and there it stats possibly causing pneumonia..

I have to say I have found it very difficult to 'love' my cpap machine as it advises in the literature. I get a panicky feeling and can't seem to breathe correctly, even the 4:4 breath. Takes me ages to drop off to sleep...then I have it all over again after bathroom visits. I am persevering though!

Good luck x
Fran Hiam said:

Hi All 

i diagnosed with sleep apnoea around November last year (I know I’d probably had it for around 20 years). I  then waited for my cpap equipment until August this year due to the COVID epidemic. I was so happy with the results at the start I was getting about 8 hours sleep whereas before I would only ever sleep 2 - 4 hours. My problem now is that I also have TMJ disease (which was diagnosed 20 years ago) now I’m having problems with the TMJ due to the mask. I have to wear a full mask as I’m a mouth breather and my nasal passages block up especially when I lie down.

if there is anyone who has had a similar experience and found a way around this I would be very grateful yo hear from you.

Thanks Fran...will try that

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