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Sleep Apnoea Forum Bringing Help + Support to the Patient

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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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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

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Tony left a comment for Zia
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