CPAP machine / mask - looking for tips / experiences

[Fanfab1]

hello

Have posted in sleep matters but hoping to get to a wider audience here as can be a bit quieter on there. No problem if moderators remove as not heart related. But sleep apnea if left untreated apparently can negatively impact cardiac health. My heart condition is already untreatable and prognosis not known so I don’t want to make things worse! Bit of a tenuous link 😊

I have mild sleep apnea and picked up my CPAP machine Wednesday this week.

So last night was night two, I don’t mind at all the air pressure and having something on my face / head plus the squishing up of my nose. It’s not comfortable but it’s tolerable. But it’s only night two.

The mask is ok fits snug no leaks when I put on, I then start machine and takes 20 mins to get up to speed.

I tend to fall asleep very quickly but few hours later start repeatedly waking and dozing from about 3am onwards. I’m dead to the world for those first few hours and don’t change position.

But once I started moving about I get leaks of air at the sides of the mask plus a sound that resembles a whoopy cushion or balloon deflating 🤭 repeated adjustment of straps helped for a little while but when moved - mask hissed and farted.

I’ve got an appointment for next Tuesday to take the stuff back and see if they can offer me alternative mask. I’m going to keep using though for now. I’m on a one week trial.

In meantime What has been others experience and what advice / tips can you offer? This would be most appreciated.

I’ve googled a nasal only mask and that appeals to me. The make of the machine / mask provided is resmed.

Absolutely committed to get on with the CPAP so keen that the leakage issue is resolved. Maybe I just need to not move position in the night!

👍

[Blearyeyed]

Welcome to the Darth Vader Night Time Club😆😆😆At least that what we call my hubby.

He had a few hiccups at first ( in getting the mask firm, not inside the mask.

He got a different full mask then used a knot as far as I remember to keep the strap from loosening.

Duh, should have gone upstairs to look at it!!!

The one drawback with the nose only tube is that it can dry out your nostrils and make you more vulnerable to nose bleeds so if you take blood thinners or anticoagulants it may not be the best option.

Another thing that can happen is that you face may get dry or you could get marks were the mask pushes in most.

Your throat and lungs can also get dry too.

So make sure you have as much water as you are allowed each day and a reasonable drink within the hour before bed if you can.

If you can't drink too late for whatever reason at least swill water in your mouth and gargle.

Another thing my hubby's done since was to use a moisturizer each morning on his face , just a basic unisex fragrance free one. He uses Epaderm 2 in 1 because we have it for all this sort of stuff. He also uses a bit of vaseline on his nose and area were the mask rubs to stop it getting chaffed over time,

He got used to it very easily and takes it everywhere. I haven't got used to sleeping next to Darth Vader , or a slowly deflating bike tyre but these things are sent to try us.

He has been healthier , less fatigued and less breathless during the day and doing exercise since he got it and he's had it for years.

Oh , yes , for a while he slept in a more upright position comfy on graduating pillows until he got used to sleeping on his back. It seemed to help.

Good luck , Bee

[Fanfab1 in reply to Blearyeyed]

Thank you for all the tips especially moisturising and staying hydrated. Didn’t know that re nasal type / I’m on clopidogrel. I’m hoping I’ll get some positives too regards reducing tiredness / fatigue. I have an adjustable bed so can play around with best position / incline. I need to give it more time I think. But feeling positive about using it! 👍

[Sue6666 in reply to Blearyeyed]

I agree with all the above and would also say it takes a while to get used to the mask being quite snug on the face and size of the mask might need adjusting but you will be better off on the CPAP and so will your partner if you have one. I had years if trying to sleep with a husband who woukd not seek help before it got to the stage he was so tired during the day he was falling asleep at all odd times. Stick with it 😊

[Fanfab1 in reply to Sue6666]

thank you for the encouragement and advice 👍

[Callie456]

Hi, my mum had cardiac problems (was on all the usual heart meds, including blood thinners) and sleep apnoea. She didn't take too long to get used to it, then she absolutely loved it and couldn't sleep without it! She felt much better and stopped feeling so sleepy all day.

She used a nasal spray before bed and in the morning and her machine also had a humidifier, which stops the air from being too dry, otherwise you can get a dry throat/nose. You can also get heated tubing to stop the air being too cold in winter.

There's lots of choices with machines, but the new ones should have all those options and it's worth spending the money to get a high quality one with all the options.

Mum had a resmed machine and liked the nasal pillow mask (Fisher & Paykel Eson 2). Plus she had a Seatec chin strap. The headgear straps had lots of velcro to make adjustments in lots of different spots and she wore hers quite tight.

Regarding the mask, different types and sizes suit different face shapes, so it might be a bit of trial and error to find your favourite one.

All the best, it may take time to get used to and to get all the settings/mask type and adjustments right for you, but you'll get there!

[Fanfab1 in reply to Callie456]

Thank you for all those tips and I hope I have a positive experience like your mum. The angina is the angina and it’s not going away but to feel less tired would be a blessing. Lots of tips and options there I will look at, I have the standard issue mask and resmed machine from hospital/ NHS but hoping to see if any alternative mask available otherwise will buy myself.

👍

[Callie456 in reply to Fanfab1]

Mum was a mouth breather too, that's why she used the chin strap, which kept her mouth closed. That way she was able to use just the nasal mask. She found it more comfortable than a full face mask, which leaked, I think because her face was quite small.

[Fanfab1 in reply to Callie456]

Thanks for explaining the chin strap! Armed with more info and tips and what alternatives I’ll be able to have a more informed discussion at my appointment! 👍

[50568789]

Have you tried posting on the Restless Legs forum? Lot of experience on there.

[Fanfab1 in reply to 50568789]

No I was cleared of that but I will ask anyway. Thanks

[chesson]

If you can, check out the Resmed N30i nasal mask. It allows you to sleep on your side without leaks. I used it for a few years and found it very comfortable and leak-free. I came off the cpap eventually since only get sleep apnea if sleep on my back, so I now only sleep on my side!

[Fanfab1 in reply to chesson]

Thanks for the suggestion, going to exhaust what the NHS a has to offer (suspecting it’s just the standard face mask) at appointment next week then will look into options like this. Feels like an expensive minefield so appreciate suggestions👍

[scentedgardener]

There is a very good Facebook group, Hope2Sleep Support Group, the members are very helpful and supportive, and you can ask questions from the parent organisation. As far as I can remember they have a shop and can also do sleep studies, but really know their stuff, and care passionately.I'm really, really claustrophobic, and struggled with just the sleep study kit, which led to an incorrect result.

[Fanfab1 in reply to scentedgardener]

I did slightly panic when they tried the mask in me but they did it with the machine turned on! Didn’t help my heart that. But I have been putting the mask on getting settled then turn on and it’s not so bad - lesson learned early!

I think I had a peak a while back but will certainly take a closer look at that site now I have my machine.

Thank you for the suggestions.

👍

[scentedgardener in reply to Fanfab1]

They really are helpful and they truly care.Things like a hose support so your mask doesn't dislodge when you move, advice on sleeping positions, etc.

I didn't actually need it, a medication was causing most of my symptoms. I did try to tell them but they didn't listen. I only got about 3 and a bit hours sleep when I did the study, the chest strap and wires were enough to set off my claustrophobia.

I hope you get the advice you need from Hope2Sleep, they are a very good source.

[Fanfab1]

utterly appreciative of all these responses and the tips and advise. Thanks to all. Lots for me to research / look into. Maybe for once I might stay awake long enough this afternoon to do that😂

[Qualipop]

My son was given about 5 or 6 different masks. IT seems there are plenty to try . In teh end losing weight around his neck was the only thing that helped. He just couldn't cope with any of the masks. My husband simply pulled the masks off in his sleep. Again like my son, he dieted and lost all the excess weight round his neck and no longer needs treatment. Both were offered surgery on the soft palate and both refused it. My son had moderate apnoea but my husband's was severe. He had several overnight stays at a sleep clinic in Manchester.

[Fanfab1 in reply to Qualipop]

That’s good to know and hoping my hospital offers alternatives. I could do with losing the weight too, working on food intake. 👍

[Qualipop in reply to Fanfab1]

Weight, especially round the neck does make a huge difference to sleep apnoea . My husband naturally has a very thick neck. Since losing weight his snoring has almost stopped and both he and son have been diagnosed as cured.

[1a2b3]

hi there, I have this same machine . I did try nose only but found sometimes I would mouth breath causing issues. Switched to nasal/mouth and this is much better. I did not love it to begin with and stopped using briefly but for the past 2 years I have used religiously. Usually the tech where purchased can adjust the air flow or at least show you how . I’m a side sleepers so sometimes it shifts after turning . I can readjust by simply lifting away from my face and readjusting . The air pressure does increase quite a lot through the night . If I find it too much at times, I simply turn off and back on to start with a lower flow so I can fall back to sleep .some people use a chin strap when using nose only . As you fall asleep your muscles relax and , as I understood it, nose only is best if you’re not a mouth breather . You are correct that apnea can affect your heart . After having my stent put in I take my CPAP very seriously . Hope this helps . Good luck . Soon you will find it difficult to fall asleep without it

[Fanfab1 in reply to 1a2b3]

Yes very helpful, they did ask if I was a nose or mouth breather at night - sounds mad but I didn’t know! But got a very dry mouth first night I’m guessing I may have been breathing through mouth? Leaks do seem to happen when move / turn over. I need to give it more time though. I changed pillow type last night which seemed to help. I’ll give it a go pulling mask away and placing back when leaks! The whoopie cushion / deflating balloon sound is funny though 👍

[T666]

they can supply a machine with built in hydration Water tank needs filling once a week. Also I found that the fit and comfort was greatly helped by mask liners. NHS won’t provide these I buy Remzzs at intus healthcare .com. All helps to seal and stop the discomfort. The machine itself has been a real life changer and improver. Used for 9 years

[Fanfab1 in reply to T666]

Thanks for tips, will ask about hydration tank as dry mouth is a thing I’m getting, as the nights have passed starting to realise I’m a mouth breather at night so going to persevere with full mask I’ve been given for now. Will look at mask liners. It’s encouraging to hear it can improve things. 👍