Sleep Apnea and af: I have paroximal a... - Atrial Fibrillati...

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Sleep Apnea and af

Falmouth4122 profile image
35 Replies

I have paroximal a f controlled by flexinaide 100 am and pm and Adizem 240 and I've just been prescribed a sleep apnea air box and mask AirFit F20.. once I fiddled with mask to achieve best fit it seems to be effective in helping me get continuous sleep (7 hours).

The downside for me is that to get a good seal around nose and mouth the mask and straps need to be fairly tight and in the morning I wake up with puffy eyes - on my eye lids and below

I've sent off to the makers for a sponge seal mask which I hope will improve things...however they are expensive..3 for £84 and recommendation is to change after one month's use.

Is anyone going through a similar experience?

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Falmouth4122 profile image
Falmouth4122
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35 Replies
Ippo profile image
Ippo

I use a ResMed nose pillows that only goes in nose. Much more comfortable. Need to be able to sleep with mouth closed.

Falmouth4122 profile image
Falmouth4122 in reply toIppo

Ah! that's my problem..mouth open.

I was seen at nhs sleep clinic and got just a nose mask first but this kept coming off. Then I got the full mask.

Ippo profile image
Ippo in reply toFalmouth4122

I would maybe try a different one again. Nice not to cover eyes and mouth. Mine has fabric that has stretched, but has clips to tighten back up.

Falmouth4122 profile image
Falmouth4122 in reply toIppo

My mask just covers nose and mouth not eyes...that would be too much!

Falmouth4122 profile image
Falmouth4122 in reply toIppo

Thanks for this info best wishes

Smokie2D profile image
Smokie2D

I was given a Resmed 10 and mask on 24/12/2019. Before using my incidents were 63.1 per hour, after even 1 night down to under 3. That is the good bit and its good to be fully awake.

However the bad bit is the fight with the mask! I have a sore spot on the bridge of my nose, face feels moulded in weird shapes and its a hassle. I wear glasses all the time so my nose never gets a break...However the pain is worth it, but.....

My mask is a full face and the plastic bit on the forehead had to be padded with cotton wool until it stopped boring into my head. I pad my nose bridge with cotton wool if its too bad. Whatever works!

Wife complains of my bag pipe playing if I air leaks. But the mask changes with your face and my pressure varies between 4 and 20!!! So leaks seem to happen at 15 plus.....Darth Vader never had these problems! ( My wife also complains of a draught if I look at her with full pressure air pushing from my nose!).

I hope that it gets easier soon, both for you and me!

Falmouth4122 profile image
Falmouth4122 in reply toSmokie2D

Laughed at the image of your leak causing a draft!!

It's the sound of the leak that wakes me up sometimes.It's worth putting up with mask issued just to wake up without a headache or thudding heart.

Smokie2D profile image
Smokie2D in reply toFalmouth4122

Oh its not the leak air vents out of the mask at the nose, so a stream of air under the higher pressures can sure get attention! Yep its a pain but the gain is worth it!

The beloved does prefer the machine to my snores and gasping shudders even with the leaks! Me? I don't recall either just constant tiredness and being a zombie!

(My pressure goes from 4 to 20 and its the higher end that cause the problem of the nasal jet stream)

By the way a cold and the mask aint fun! But the filtered air seemed to make my cold milder than the rest of my mob!

CDreamer profile image
CDreamer

Could be one of a number of things - like the balance of the tightness of straps is out. I use the nasal mask - I’ve tried every mask they make & find that’s the best for me but I use a chin strap as well so that keeps mouth shut.

I just couldn’t get a good seal with the full face mask. Even with the nasal mask I sometimes find it’s really difficult to get the balance between the the top & bottom straps correct, if I get an air leak I wake & then I overtighten the straps.

The other thing I found is if the pressure is to high then the mask lifts off my face during the night so getting the physiologists to reduce the pressure as I found too high a pressure lifted the mask off my face during the night - air leak, overtighten spiral. Reducing the range really helped. I started needing pressure at 15 5 years ago & now stay at maximum of 10.

I also had my machine changed last autumn to the Airsense which acts more like a BIPAP - problem solved - for me. Hope some of that helps.

Ring the physiologists who fitted it & talk it through with them. The clinic here are so helpful & they go out of their way to make it work for you so should help you find a solution.

Falmouth4122 profile image
Falmouth4122 in reply toCDreamer

What is a BIPAP?

I will contact them if things don't settle down.

I think my pressure starts at 4 and slowly moves to 8. It's set on auto.

Putting it on I try to get the mask comfy and clip the magnets..then decide I need a wee so off with the lot then get back in bed and start again..then decide to blow my nose so start again ...put it back on and decide that the corners of my mouth are too moist so start again ...omg

CDreamer profile image
CDreamer in reply toFalmouth4122

BIPAP is very similar to CPAP but has more functions so it can be set to pause the pressure when you breath out which I find a lot more comfortable.

I was waking up at night with a sense of being blown up and having to open my mouth to release the pressure and what I noticed is the lifted the mask off my face. The ResMed AirSense machines have automatic sensors which more or less act as BIPAPs rather than having continuous pressure - which worked well for me originally for about 5 years. I started at a range of 5-15 but when the pressure became too much had the range reduced to 5-10 which suits well.

The trouble is that I have an AirMini and that isn’t so easy to regulate so when travelling, which I have been recently, I struggle a bit when the pressure goes over 12 but it does also have the breath out pause so it’s adequate.

TIp - if you need to get up you don’t need to take your mask off - just disconnect the hose as you would do for daily cleaning. It comes off really easily and the machine should stop when you disconnect if you alter the settings to automatic start/stop when you attach the hose. If you don’t know how to do that ring and ask the Physiologists to do it.

Hope that helps.

MarySea profile image
MarySea

I also have P-Afib and have been on CPAP therapy since April last year. I found the mask the NHS issued me (non proprietary) broke the skin on the bridge of my nose and blew air constantly into my eyes. I managed with it until the summer when I bought a Phillips Dreamwear full face mask (which goes under the nose). That worked well, but although I tried all the sizes I had problems with getting a good seal. So I shelled out more money for a ResMed F30 which is also an under the nose full face mask but I find the fit better, less problems with seal and it is as quiet as a mouse and no air gushing out either. Although it presses on my teeth, which is irritating, I find it somewhat better than the Dreamwear – although I have to admit the Phillips mask is softer and generally more comfortable.

I do breathe through my nose mostly, but if I end up on my back my mouth falls open, so I am persevering with the full face for now.

I don't feel so tired during the day, am more awake and don't fall asleep in the evening. But the cleaning routine and general lack of comfort is difficult to get used to! I have accepted this is the way it is, for now!

I think the memory foam cushions can be eked out to last longer than a month if you wipe them with a CPAP mask – or so I am informed! But you are right the whole business is expensive. It appears some NHS clinics are more generous than others though.

Falmouth4122 profile image
Falmouth4122 in reply toMarySea

Mary, thanks so much for all your details. Isn't funny how a bit of research and some practical experience can make one so much more aware. I had no idea of all this and now I'm becoming quite well informed.

I really dread bedtime because of all the palaver and try to delay the going to sleep bit until 2am. Last night I managed 7 hours sleep which is amazing.

CDreamer profile image
CDreamer in reply toMarySea

I get ResMed on the NHS. It’s amazing how different regions have different buying policies. I’m allowed 1 mask/year now but I find I need to replace about every 4-6 months as the material does deteriorate and then I notice I get broken seal. With the discounts from ResMed cost is about £30.

MarySea profile image
MarySea in reply toCDreamer

I've noticed this too, I wondered whether the cushions need replacing more often than once a year. It may be why the Dreamwear mask kept failing to seal properly. They are very soft and perhaps it just got too soft! They are so expensive. I am working at the moment, but that could change anytime and then I would need a more generous NHS clinic, but I haven't heard a peep from mine since I got the machine April last year, and had a follow up call 2-weeks after to day it looked like I was doing fine. Since then nada! I very much doubt unless I chase them, I'll get called in for a review this April.

CDreamer profile image
CDreamer in reply toMarySea

It’s so variable - I got 1 x 2 hour Masterclass with 3 other people, 1:1 review at 4 weeks, 6 month review & referral to pulmonology: 12 month review thereafter. Any time I want spare parts they post 1st class to me & I can arrange a 1:1 review within 2 weeks non-urgent. It’s the very best NHS service I have ever encountered & I can’t speak highly enough of the team in Exeter RD&E - and I heard rumors it may not last for much longer with cuts in the line.

Why when it is inexpensive (comparatively) prophylactic treatment & probably saves many emergency admissions?

🤨

MarySea profile image
MarySea in reply toCDreamer

To be fair, they were really helpful at the 'training' session and explained everything well. But I was told they would call me back in for a proper review after 6 weeks which never happened. My AHi on testing was 92 so I was hardly a mild case. Some of the women who were in the training with me only had scores of around 15 or 20, so I'm surprised really. But I am a pretty capable person and I suppose if I really needed help I could get it at the drop-ins which are two half days a week. I will wait and see if they call me in for a yearly check up! But bearing in mind after I had my Linq Reveal implanted in April 2018 cardiology at the same hospital seemed to forget about me despite me having frequent quite lengthy Afib episodes over a year and only did anything to diagnose me when I called them to say the machine had stopped recording! Again, I am not the complaining type and I know how busy they are, so am just happy I have a local cardiology clinic, which may be taken away soon due to funding cuts! My partner kept saying during the period before April last year, you know you really should call up cardiology and see what's going on, but I just kept leaving it, thinking they would be monitoring me!

RiderontheStorm profile image
RiderontheStorm

I get stuffed up and it is hard to breath so I had to change to a face mask and the first style did not work so well for me but now that I have changed to the F-20 without foam I am getting 100% with only 1-2 percent leak and often score 100% in all.

Falmouth4122 profile image
Falmouth4122 in reply toRiderontheStorm

What is the 100% and how do you get that info?

Smokie2D profile image
Smokie2D in reply toFalmouth4122

In my case NHS Tayside provided me with the ResMed AirSense 10 AutoSet and the ResMed Quattro Air full face mask. This uploads the overnight readings to a server in France and then the hospital gets them from there.

So the company have an app that allows you to see some of this report and gives you a score. For example if you wear it for seven hours you get 70 points. You get no more points for over 7 but get points deducted for less. (e.g last night wore it for 6.31 hours so got 65 points). Mask seal is marked out of 20, Events out of 5, How many times you take mask off out of 5. Thats the 100. ( last night I was 88, previous night 95).

The app tracks your history and also gives cleaning advice etc!

Hope this helps. Long winded but hopefully useful.

Falmouth4122 profile image
Falmouth4122 in reply toSmokie2D

Really useful, thanks....but only available to users of that model? or users in a Health Authority that are prepared to pay for this service?

Smokie2D profile image
Smokie2D in reply toFalmouth4122

Its free for me to use and its a resmed company app available on the most recent models this link should tell you resmed.com/en-us/sleep-apne...

I had to agree at the hospital for my data to be used and transferred online.

They use it as a way of checking treatment working!

Falmouth4122 profile image
Falmouth4122 in reply toSmokie2D

I'd love to be able to use the app but I was given the F20 ResMed machine which isn't listed

CDreamer profile image
CDreamer in reply toFalmouth4122

Even if they give you a listed machine the NHS will register it online and won’t allow a newbie to to go into the settings as they need to monitor you. They will be getting all the information though so you can always ring and ask.

CDreamer profile image
CDreamer in reply toSmokie2D

Ditto - only problem is that ResMed don’t allow you to have 2 machines on the App so I use the App for the AirMini and use an online registration with different email for the NHS machine - I also have the AirSense 10.

Falmouth4122 profile image
Falmouth4122 in reply toCDreamer

Thanks for being so helpful because I was totally unaware of all this.

I have spent sometime getting my head round it and have registered with My Air and am all set up. I love a project so here we go....

Falmouth4122 profile image
Falmouth4122 in reply toSmokie2D

Thanks for your support I have now registered with My Air so can start monitoring. I was totally unaware I could do that. It makes more sense now.

Smokie2D profile image
Smokie2D in reply toFalmouth4122

Good for you. I have never bothered to try to alter settings and probably wont be able to. The use of this machine is the only reason I get to keep my driving licence. Ninewells, hospital, encouraged me to use the app and are very happy that I do so. IF I tried to tweak it I am sure they would get snappy!

I have the F20 mask and have no such problems, maybe you need a different size mask?

I remember the first mask that I was given was awful (Fisher & Paykel Vitera Full Face),

I tried for a couple of weeks before contacting the sleep clinic. They got me to go in again and fitted me with an F20 in the correct size which I have now used for 4 years (not the same mask!)

Falmouth4122 profile image
Falmouth4122

That's helpful, thanks

RiderontheStorm profile image
RiderontheStorm

Download the APP "My Air" and wifi connect to your Machine.

CDreamer profile image
CDreamer in reply toRiderontheStorm

You can’t if the NHS register the machine as they are the owners of the machine so therefore all info goes to them for monitoring purposes.

RiderontheStorm profile image
RiderontheStorm in reply toCDreamer

Dunno how it works there I am in The USA

Falmouth4122 profile image
Falmouth4122

I don't think my machine has the capacity to do that

Falmouth4122 profile image
Falmouth4122

At last and thanks to all those who shared their experiences I have managed to get data of my sleep patterns etc. By registering with Myair. Used their customer support to sort out a Wi-Fi issue.

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