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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Thanks Kath. I am going to start adapting to the mask by wearing it in the day at first. Once I get one or two nights on it I reckon I will be OK.

other forums have said there is no point in tweaking my pressure because of the high leak rate and I need to change my mask (which I do, as the Comfort Gel is of course discontinued). 

Kath Hope said:

Hi Crabbleite

I can't speak for the Resmed Mirage FX, but we've sold the Wisp for years at the charity and our site has all 5 star reviews.  The DreamWisp is the newest version with the difference being the hose comes out of the top of the mask and to be honest I prefer masks with the hose at the top like the DreamWear range (I use the DreamWear full face as I'm a mouth breather).

Well done on tapering off the Clonazepam if it wasn't helping you.

Regarding your higher AHI, there can be lots of reasons for this, but it's also worth considering if you definitely ONLY breathe through your nose during sleep as that could cause a higher AHI.  Also though the fact you say you may need ASV could also be part of the reason.

Crabbleite said:

Hi

I have been using xPAP fo around 15 years and have never really for it to work for me. I am joining this forum with eh aim of getting my AHI below 5.

I have been using a Respirinicas Comfort Gel nasal mask for a long time now and it is well overdue to switch to another mask.

So my first task is to do that and the two main candidates are either the wisp or the ResMed Mirage FX.

Other than that I have been told elsewhere that I probably need an ASV machine but at the moment I'm using BiPAP.

Co-morbidity makes my case extra complex and hard to treat. I have also been diagnosed with Periodic Limb Movement Disorder, and in the closing year (hopefully) of a five-year long taper from Clonazepam, a med that was prescribed to treat my PLMD, with disastrous results.

As I say, as far as CPAP goes if I can get my AHI below 5 (and preferably as close to 0 as possible) then that will be as much as CPAP can do for me.

 

Sorry posted in wrong place

Hi Everyone,

I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy this morning.
There were a few minor issues with it. I have the resmed auto machine from the sleep clinic and it is automatic but the air flow is set between 4 and 15. When I put the mask on initially and did the mask test I had a good fit.
When I switched on the machine and started for my first night it made me feel a bit panicked as if there was not enough air for me to breath. I persevered and noticed that within the first 45 minutes the level was up to 9.6 which seemed more comfortable and then I fell asleep. I was wondering is this feeling quite normal or is it just because the cpap is new for me?

The other issue is that this morning when I took the mask off there seems to be several red patches/spots on my nose where the mask touched, does this mean I fitted it wrong?

Any suggestions on this would be great

Thank you 

Sara

Either they have not set your minimum pressure and the machine is slowly finding the level you require, or they have not set up a minimum pressure.

I don't know how or if they set your machine up, but my mate got one and under Covid rules they were not allowed to set it up, it had to be left as it came out the factory.  He was told it would take a while to build up pressure, but it would get there.

However, he like you panicked.  I had to tell him how to set it up after that he said it was far better than the old machine he had.

Either that or the RAMP is turned on, this delays the machine reaching its minimum pressure.

This can be turned off in the settings, that was the machine will only take 30 seconds to reach it minimum pressure, provided it is set.



Booksy said:

Hi Everyone,

I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy this morning.
There were a few minor issues with it. I have the resmed auto machine from the sleep clinic and it is automatic but the air flow is set between 4 and 15. When I put the mask on initially and did the mask test I had a good fit.
When I switched on the machine and started for my first night it made me feel a bit panicked as if there was not enough air for me to breath. I persevered and noticed that within the first 45 minutes the level was up to 9.6 which seemed more comfortable and then I fell asleep. I was wondering is this feeling quite normal or is it just because the cpap is new for me?

The other issue is that this morning when I took the mask off there seems to be several red patches/spots on my nose where the mask touched, does this mean I fitted it wrong?

Any suggestions on this would be great

Thank you 

Sara

If you have an automatic machine it is called an APAP not a CPAP, it is all new!

Please quote the make and model of you machine, this helps us when we reply.

Hi Booksy

This is a great 1st night's result regarding already feeling the benefits of CPAP.   It's absolutely normal to get a few teething problems at first but if you feel the air pressure is still too low contact your sleep clinic who will be already monitoring how you get on and if they feel the settings need changing they can usually do this remotely or will instruct you over the telephone.  

It's unlikely you fitted the mask wrong, but your skin isn't used to wearing the mask yet.  If the skin problems persist or get worse there are things like mask liners or cream that's safe to use.  In fact if you have a look at our charity's website you'll see there's a whole page covering the little hiccups we can come across - most of which there's a solution for https://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-o...

Hope Night 2 goes well :)
Booksy said:

Hi Everyone,

I’m 50 and was diagnosed last month with moderate sleep apnea with a score of 28. Last night was my first night with my cpap machine and mask. I slept a whole 8 hours without waking! I also feel quite a bit brighter and less foggy this morning.
There were a few minor issues with it. I have the resmed auto machine from the sleep clinic and it is automatic but the air flow is set between 4 and 15. When I put the mask on initially and did the mask test I had a good fit.
When I switched on the machine and started for my first night it made me feel a bit panicked as if there was not enough air for me to breath. I persevered and noticed that within the first 45 minutes the level was up to 9.6 which seemed more comfortable and then I fell asleep. I was wondering is this feeling quite normal or is it just because the cpap is new for me?

The other issue is that this morning when I took the mask off there seems to be several red patches/spots on my nose where the mask touched, does this mean I fitted it wrong?

Any suggestions on this would be great

Thank you 

Sara

Hi everyone, I'm new here. My name is Emma. All throughout lockdown I've been suffering with symptoms of sleep apnoea. Feeling tired all the time, nodding off to sleep during the day, loud snoring (as my hubby tells me) and even waking up gasping for breath some nights. But with lockdown in the way it was hard to be seen and tested for sleep apnoea. I had to wait almost a whole year before I was referred to the hospital for the tests I needed. And then 14th july this year I was given the diagnosis of severe sleep apnoea and told I would be given a CPAP machine. Which I am still waiting for.

I have found it hard to stay awake and focus at work and still do. I nod off to sleep at family and friends homes when I visit them. I nod off to sleep at home and feel like I am missing out on life because I'm spending a lot of it nodding off to sleep. I worry I will lose my job over it as I keep nodding off to sleep at work including half way through serving customers (I work at a supermarket). Work have been understanding while I've been waiting all this time to have the tests done that I needed but of course it's always a worry when it affects you at work.

I've been having trouble getting my CPAP machine too because the doctor that diagnosed me was supposed to put my referral through for me to get my CPAP machine but apparently he hasn't put the referral through I've found out since. I've spoken to the doctors secretary on the phone and she says she has emailed him to remind him to put my referral through because he was supposed to have done it before now but still hasn't. When he diagnosed me he also told me I'd have to wait up to 3 months to get my CPAP machine. But as I'm still waiting to hear back from his secretary again to let me know that the doctor has put my referral through I have a dreaded feeling I'm going to have to wait even longer now.

I've joined this forum in Hope's I might get to hear from people who have been struggling like me with the tiredness and nodding off to sleep. And wondered if anyone else has struggled to get a diagnosis through lockdown like me and is now struggling to get a CPAP machine after their doctor told them he'd put you through for a referral for one. Or just to talk to anyone who suffers with sleep apnoea and still struggles with the symptoms like me.

Hate keep falling asleep. It has even affected my mood and mental health as I very often feel like crying over it. It's just that it's been so long of fighting to be seen and tested so I could get the diagnosis and now I'm still fighting to get my CPAP machine. It just makes me feel so frustrated and exhausted keep having to chase everything up and push to get the help that I need.

I have been trying to lose weight to help me too but that's not always easy as the stress of everything makes me want to comfort eat and eat junk. Plus I'm always tired and grumpy. I feel like if I was in a happier mood and didn't feel so tired all the time I'd find it easier. Which is another reason I really want to get my CPAP machine. If it keeps my airways open while I sleep then that means I would get better quality sleep and feel more awake during the day.

Anyway sorry if I've wrote an essay. I just felt like I needed to get all my feelings and frustrations out. I hope everyone on this forum is doing well and coping better than me.

Thank you for reading if you have read it all. I really appreciate it. xxx

Hi Emma,

Wow you're having a tough time.  All I can say is keep pestering the hospital and ask them to put you to the top of the list due to their mistake.  I find being "persistent but distressed" works better than being "angry and demanding".

I am sure many of us recognise your symptoms.  I fell asleep at the barber's and even in the dentist's chair.  Hang on in there.  I got my CPAP machine over 10 years ago, and haven't looked back.  Since then it's been all around the world with me!

Jonathan.

Emma Gennard said:

Hi everyone, I'm new here. My name is Emma. All throughout lockdown I've been suffering with symptoms of sleep apnoea. ...

I agree with Jonathan to keep pestering in desperation rather than being angry at the mistake, although does need pointing out when you call them. I know how you feel as years ago when I got diagnosed with severe sleep apnoea I had to wait months for my machine, but it was when the NICE guidelines had only just approved CPAP via the NHS (before then patients had to buy their own). There is a CPAP shortage at the moment in many hospitals due to the Philips field safety notice (recall in the USA) of all their CPAP machines, so the sooner you ring the better.

I found it was harder to waiting whilst knowing I was stopping breathing 32 times per hour than before I knew, as we somehow just continue to muddle through with our symptoms. The last hurdle always seems the worst, but will be worth the wait as getting treated on CPAP has been life-changing for me. Hang in there Emma....

Jonathan said:

Hi Emma,

Wow you're having a tough time.  All I can say is keep pestering the hospital and ask them to put you to the top of the list due to their mistake.  I find being "persistent but distressed" works better than being "angry and demanding".

I am sure many of us recognise your symptoms.  I fell asleep at the barber's and even in the dentist's chair.  Hang on in there.  I got my CPAP machine over 10 years ago, and haven't looked back.  Since then it's been all around the world with me!

Jonathan.

Emma Gennard said:

Hi everyone, I'm new here. My name is Emma. All throughout lockdown I've been suffering with symptoms of sleep apnoea. ...

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

That feeling of struggling to breathe at first is something I think we all go though now and again.  My wife says I occasionally send a gale of cold air her way, waking her up. I now sleep with a Tee-Shirt over my head :)

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?

hello linda

i think the feeling of not being able to breathe is tied in with the initial feelings of claustrophobia when first wearing a mask. i am not sure which model you are using? perhaps you need to experiment with the straps to make sure you have a tight enough seal to stop the air blowing into your eyes but loose enough not to mark your nose? there are loads of youtube videos showing you how to fit your mask.

 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

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