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

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Hi

It may be worth a chat with your sleep clinic to see if they have a different mask you could try.  And Kath's mask liners may help (I hear, I've never had a problem).  Overtightening your mask can be a cause of leaks too.

Jonathan.

Linda Lyon said:

Hi Kath and members,

It's great to have somewhere to vent

I started on cpap a few months ago. It's taking me a while to get used to it.

Anyone else find it hard to breathe normally when first putting the mask on each night? Using ramp has helped.

My main problems are air blowing into my eyes...resulting in eye bags :o( I'm also conscious of the air blowing onto my Husband...keep expecting him to say he has a stiff neck!

Suction marks on the bridge of my nose.

I have the will to persevere but find I am sleeping more in the daytime than pre cpap?

Hi Linda

 

I got a useful tip from the nurse at the hospital who provide my CPAP. Buy a roll of the stick on towelling tape that tennis players use for their racket handles. About 3/4 inch wide. Cut a piece about 2.5 inches long and stick it across the top of the rubber which goes across the bridge of your nose. Stops the rubbing completely and you can change the tape daily of you want to (I do it every couple of days). The rolls of tape last for months.

 

Hope this helps

 

Regards

 

Diane

Iain,
We laugh at it to, I used to get a jab in the ribs for snoring, then it was for the tornado's.  Having tried/looked at many different masks all except one had the vent "exhaust" blasting straight ahead.  We found one that had the pipe connect at crown of the head, but even that had the vents at the front.  Eventually this was our only solution, no matter how silly it looks,  but then you can't look more silly than going to bed like your a member of 633 Squadron going on a mission :)  

Iain Noble said:

... i am afraid i laughed at the image of kevin sleeping with a tee shirt over his head! as if we didn't have enough stuff

I use a Respironics DreamWear mask which doesn't go near the bridge of my nose.  Different masks suit different folk.

Diane Finlayson said:

Hi Linda

 

I got a useful tip from the nurse at the hospital who provide my CPAP. Buy a roll of the stick on towelling tape that tennis players use for their racket handles. About 3/4 inch wide. Cut a piece about 2.5 inches long and stick it across the top of the rubber which goes across the bridge of your nose. Stops the rubbing completely and you can change the tape daily of you want to (I do it every couple of days). The rolls of tape last for months.

 

Hope this helps

 

Regards

 

Diane

Mine is a Phillips Amara View, that doesn't cross the the bridge of my nose either, Linda it would be worth you asking for alternates at your clinic next time you visit, although at mine that are not too keen on giving you too many to try out.  

Jonathan said:

I use a Respironics DreamWear mask which doesn't go near the bridge of my nose.  Different masks suit different folk.

Thanks folks :o)

Useful tips there.

Have to say my sleep apnoea dept in hospital have sent me 4 masks to try (and a chin strap ....more mirth lol)

Has anyone suffered with a sore tongue? GP gave me moisture gel. I only get the problem with nasal masks..oh and aeropagia with those too.

Yes the 'tornado' I was wondering if that occurs when we stop breathing?

I have literature from the hospital on panic attacks and am trying the 4 in 4 out breathing (seconds) Does help.

We shall soldier on!

The Tornado is a permanent presence,  all the air pumped out from the machine has to go somewhere,  I imagine there are peaks and toughs as we breathe, but it must be negligible as I can't feel the change on my hand.   The other slight advantage is that I'm no longer awoken by thunder storms, I cant hear anything over my personal gale. 

Linda Lyon said:

Thanks folks :o)

Useful tips there.

Have to say my sleep apnoea dept in hospital have sent me 4 masks to try (and a chin strap ....more mirth lol)

Has anyone suffered with a sore tongue? GP gave me moisture gel. I only get the problem with nasal masks..oh and aeropagia with those too.

Yes the 'tornado' I was wondering if that occurs when we stop breathing?

I have literature from the hospital on panic attacks and am trying the 4 in 4 out breathing (seconds) Does help.

We shall soldier on!

After many (many!) years on CPAP, I can now open my mouth and even talk, whilst the CPAP is blowing air up my nose.  I guess it's trained my airways.

I can’t, even after more than 24 years of the therapy 

Jonathan said:

After many (many!) years on CPAP, I can now open my mouth and even talk, whilst the CPAP is blowing air up my nose.  I guess it's trained my airways.

It's certainly a journey of ups and downs.

Early days for me...when I try to talk I sound unearthly!

Hi all my name is Mark and I'm after some advice please. I had a 2 night sleep study done with hope2sleep going back four years ago where my AHI's came back at 18.3 and 18.6. I then spoke to my doctor as recommended and asked for a sleep study to be done and was referred. Months later I took my sleep study from here and showed the consultant but he wasn't in the slightest bit interested in the study and dismissed it totally. I was given a finger oximeter to wear for the night where the results came back as normal and the next thing i know i was signed off. I argued my case with my doctor that surely i should have a proper study done after the results of the sleep study done from here and he agreed. Months down the line again I was given a Somno medics study for 1 night and to my dismay my AHI came back as 3 and normal so was signed off again. I then went and purchased the withings sleep analyzer mat which is clinically validated and for the first 3mths I was showing an average AHI of 23 which backed up the evidence from my first sleep study I had done here. So with the information I now have, my question is how can I get treated privately for this and purchase a machine, can I do it through the charity or will I need a NHS diagnosis? I was hoping to keep this short, sorry for that.

Cheers Mark.

Hi Mark

I've had a look at your previous pre-diagnostic from 4 years ago and due to the fact your ODI (oxygen desaturation index) wasn't particularly high (often people work very hard to maintain their oxygen levels during sleep) then the finger pulse oximeter wouldn't have diagnosed you and why it's not really classed as a sleep 'study.' Also sorry to hear ours was dismissed, as there are many sleep clinics who welcome them and the device we used to use 4 years ago was used in some of the sleep clinics. I can't explain why the Somnomedics sleep study showed such a low AHI though, as you did 2 nights on ours and both were consistent with moderate sleep apnoea. It could be that your sleep apnoea is positional though and that you slept on your back for ours, but perhaps not for the Somnomedics.

You would need a repeat sleep study after 4 years to see if anything has changed  and the sleep studies we do now at the Hope2Sleep Charity are diagnostic ones, manually scored by a sleep consultant https://www.hope2sleep.co.uk/sleep-apnoea-home-screening-service.html 

If this still shows sleep apnoea, the sleep consultant would approve CPAP to purchase yourself if you can't get treated in a sleep clinic, and the diagnostic equipment we use now will show which position you slept in and also has a microphone.

Hope this helps.

Mark O'Sullivan said:

Hi all my name is Mark and I'm after some advice please. I had a 2 night sleep study done with hope2sleep going back four years ago where my AHI's came back at 18.3 and 18.6. I then spoke to my doctor as recommended and asked for a sleep study to be done and was referred. Months later I took my sleep study from here and showed the consultant but he wasn't in the slightest bit interested in the study and dismissed it totally. I was given a finger oximeter to wear for the night where the results came back as normal and the next thing i know i was signed off. I argued my case with my doctor that surely i should have a proper study done after the results of the sleep study done from here and he agreed. Months down the line again I was given a Somno medics study for 1 night and to my dismay my AHI came back as 3 and normal so was signed off again. I then went and purchased the withings sleep analyzer mat which is clinically validated and for the first 3mths I was showing an average AHI of 23 which backed up the evidence from my first sleep study I had done here. So with the information I now have, my question is how can I get treated privately for this and purchase a machine, can I do it through the charity or will I need a NHS diagnosis? I was hoping to keep this short, sorry for that.

Cheers Mark.

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Latest Activity

Ben updated their profile
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Profile IconBen, Jason Nel and paul cownley joined Hope2SleepGuide
yesterday
John posted a discussion

Do tongue exercises work ?

Hi,I saw a study on the internet in which OSA was alleviated with tongue exercises, and some UK medics recommend exercises - thinking of Mike Dilkes, but I spoke to a local consultant and he said there was no evidence that exercises work. Is there…See More
Oct 6
John replied to John's discussion Getting a precise diagnosis - scans ?
"Thank you for your thoughtful reply Kath. I still think the incisor filing sounds credible because moving my jaw forward a little, makes everything feel better in my throat and face, so it would be interesting to read about some cases. But as you…"
Oct 5
Kath Hope replied to John's discussion Getting a precise diagnosis - scans ?
"Ha, that's typical John, as your GP would have been able to give you a good examination. Regarding the conflicting advice you've been given regarding jaw surgery, that's very difficult. We've come across several people who have…"
Oct 1
Kath Hope replied to Sally Gray's discussion Cleaning products advice please!
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Oct 1
Sally Gray posted a discussion

Cleaning products advice please!

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John replied to John's discussion Getting a precise diagnosis - scans ?
"Thank you for your reply Kath. Well, I sort of lucked out because my GP was an ENT specialist who started getting into my case but he went elsewhere after Covid came so that was that.Year ago my dentist wanted to fiddle with my teeth to allow my jaw…"
Sep 30
Kath Hope replied to John's discussion Getting a precise diagnosis - scans ?
"Sorry for such a long delay to your question John, as we're inundated at the Hope2Sleep Charity (who run this group) at the moment. The reasons are not always given as a lot of sleep clinics are run by respiratory departments, yet with…"
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David W is now a member of Hope2SleepGuide
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"Hi i haven't heard back from you in a while  - are you still selling your things? i had replied to your email with further questions regarding  postal insurance and packing . Did you receive that? "
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For Sale: Resmed Airsense 10 Autoset

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Sep 24
John posted a discussion

Getting a precise diagnosis - scans ?

Hi all, so, OK I got a diagnosis of OSA and was given a CPAP machine.Finding out exactly what the problem is has not proven so easy. By exact problem I mean what the structural problem in my throat is - small jaw, blocked nose, big tongue, fat neck…See More
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John replied to Dee Dee's discussion Free Resmed CPAP masks, postage costs only to pay in the group Buy-Sell-Swap
"Aha, hi Dee Dee I'd be interested in that Mirage FX if you still have it... ?"
Sep 23
John is now a member of Hope2SleepGuide
Sep 23
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"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…"
Sep 21
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"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."
Sep 21

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