My best gift! The NHS gave me a Darth Vader mask!

[Smokie2D]

After years of complaining of being tired all the time the doc sent me to the pulmonary sleep clinic. After a sleep test at home they studied my results and called me in to the clinic on the 24th Dec. I was diagnosed with obstructive sleep apnoea syndrome, ( prob not spelt that right) with a score of 63.1 incidents an hour!

Sent home with the full face mask and kit to force air down my throat at night, ( yes Darth Vaders mask) I used it that night and whoopee result a score of under 1 per hour. No longer tired all day, no more naps! After years of blaming illness or pills the change is wonderful!

So if your partner says you stop breathing at night while asleep, you snore a lot, you are tired all the time check it out! No more naps in afternoon yay! A decent sleep helps in so many ways!

[Bagrat]

Great stuff. OH has the same and his has only reduced by half to 32 but as he doesn't have symptoms they seem happy with that.

[Smokie2D in reply to Bagrat]

So far I have been under 3 per hour, touch wood that it continues its well worth the bother!

[jeanjeannie50]

So pleased to hear you're feeling so much better. I wonder if we all need to have a sleep apnoea test? Is it uncomfortable to wear the mask?

[Smokie2D in reply to jeanjeannie50]

It takes a little bit to get used to it. I think that its trying to reshape my face at times, but it is worth what little bother it causes!

Its a balance between keeping a good seal and comfort but its worth it. If in doubt check it out!

[JaneFinn in reply to jeanjeannie50]

Hi jean, I found my first mask wasn’t fitted well enough, and kept leaking air and waking me up (in fact the shock of it started my first recorded AF event)- but that should never happen and was just down to bad communication between me and the respiratory nurse.

There are various different masks that attach different ways, some that cover mouth and nose, some just the nose, and there’s bound to be one that suits. I settled on a nose one, that for me is so comfortable now that it actually soothes me to sleep x

[Smokie2D in reply to JaneFinn]

My specialist nurse at the sleep clinic, says lack of sleep puts strain on the heart among other bad effects. I can say that I was told my joint pain etc may lessen and can say, touching wood, it has. In fact the pain has lessened to such a degree that I am going to ask to be weened off a lot of my long term pain killers. So in my case it is well worth the effort. IF you think you have a sleeping problem get it checked!

[CDreamer in reply to jeanjeannie50]

Jean - if you decide to go - RD&E clinics is just the best!

[jeanjeannie50 in reply to CDreamer]

Thank you. x

[JaneFinn]

That’s great news, Smokie! And I’m very impressed you’ve got it working for you and sleeping well immediately.

My own experience wasn’t so straightforward - I took weeks to get used to mine - it felt like sheer torture. I felt like I was drowning in air ... and then if I drifted off to sleep, I would be woken in a shock when the mask dislodged. I used to lie awake wearing it for the statutory 4 hours a night so that I could legally drive, and then turn it off and go to sleep without it! Turns out it wasn’t fitted properly. Once that was sorted... bliss!!

So if anyone else is struggling like I did- don’t put up with tortuous nights, or give up - make sure it’s fitted right and stick with it. It’s well worth it

I’m so glad you’re feeling so much better, Smokie! New lease of life, I bet x

[Smokie2D in reply to JaneFinn]

It has its ups and downs, sometimes I feel as if my best beloved pings the mask off my face, (she assures me she doesn't). It sure beats being tired all day!

[CDreamer in reply to JaneFinn]

I think that is the big problem in the beginning - lack of support and allowing you to try different masks before deciding which suits you. At our clinic it is the physiologists who look after the CPAP clinic and they gave us a 2 hours master class in groups where they allowed us to try various masks and gave advice and then 1:1 follow up 6 weeks later and at the end of the phone with any problems. Had I been left to my own devices I’m not sure I would have persevered. I have to say it was just the best NHS service I ever experienced and thankfully - still there and still as efficient.

[Smokie2D in reply to CDreamer]

My machine has an online app and if you open an account allows you to see lots of tips etc. Its very useful for info and to keep track of things!

[CDreamer]

What a relief! I don’t think most realise the enormous benefit CPAP can bring. it took my ex 3 car accidents as he fell asleep at the wheel, thankfully without injury to others and my sons taking his car keys away from him and informing the police so that he lost his license before he would do anything about his. His hand was forced - his reaction now - it not only changed my life it probably saved it!

You did really well to get such a result after one night as it took me 6 weeks and trying 3 different masks to achieve the same but now I wouldn’t be without it. I’m now on my year 5 and just got one of the newer auto sense machines which are much more comfortable for me as after several years of the pre-set machines I found I began not to tolerate the pressure.

[Smokie2D in reply to CDreamer]

I was lucky I was given the quatro full face mask and an auto sense machine, supposedly set up just for me. Perhaps that was the difference!

[Sutty50]

I've got an appointment at the sleep apnoea clinic in Feb....

[Smokie2D in reply to Sutty50]

It is worth it, good sleep is the building block of good health, (yep I have just been to a clinic). It has changed my world for the better, heres hoping it does the same for you!

[Sutty50 in reply to Smokie2D]

Thanks Smokie, it's got to be worth checking out!

[Dangerousdriver]

I’m glad you’ve beginning feel better. I’ve got my sleep clinic appointment in a week or so. I’ve got to wear a monitor for 2 days then I see the consultant when I take it back. I’m fed up of being tired and dropping during the day. Blood tests and every other test come back negative so this is the last thing on the list!

[Smokie2D]

They always told me it was either pills or symptoms. One doctor looked further, perhaps my fault I should not have just accepted it so easily!

[Smokie2D]

My machine has an online app that allows me to see details of my sleep patterns. I read it every morning! Brownie points! It also has advice on using machine, fitting mask etc. Its useful and a good record. I don't have to wait on being told what my results are!

[Hidden]

My EP referred me to the sleep clinic on my first admission for AF.

Previous to this I had spoken to my GP about it for several years, always dismissed by him.

My sleep study showed very few episodes during the night (less than 15 iirc) but when I did stop breathing my O2 sats dropped very quickly to below 85% so I was given a cpap machine as i had AF.

It took a good few weeks to get used to it, I absolutely hated it at first but now it is second nature.

Being on the NHS I just got a basic Resmed S9 machine but have added the humidity tank and heated hose at my own cost, these two have made it so much more comfortable to use.

It's fun to track your sleep, I take the SD card out and look at the data on my PC using a bit of software

[Smokie2D in reply to Hidden]

I am NHS as well. My machine is ResMed AirSense 10 AutoSet and I log in to my account online and dont have to touch the card. I suppose this is the basic model at present, I may hint at the extras for my birthday! I look longly at the nosepad currently!

[Hidden in reply to Smokie2D]

The S10 is the newer version , I didn't realise that you could export the data by WiFi, although my guess is that it won't be all the data that is collected.

I would definitely look at the humidifier if you find that you are waking with a dry mouth, I was so bad that it took ages to get any moisture in my mouth when I woke up, and during the winter the heated hose is fantastic

[Smokie2D in reply to Hidden]

Will look in to it, but at present it isn't too bad. (May be honey moon period!)

[Smokie2D in reply to Smokie2D]

As for data its : usage hours, mask seal, events, mask on/off and the score company gives you! Your right probably not all the info it feeds back to clinic but enough for me!

[Hidden in reply to Smokie2D]

And something I discovered recently is that if you fly with it you can take it as additional hand luggage free of charge if you have a letter from your sleep clinic confirming your need for it

[Smokie2D in reply to Hidden]

Good to know!

[Janelr]

Hi are the machines noisy as in do they keep the rest of family awake ? I’m being referred guess the noise won’t be worse than me snoring!

[Hidden in reply to Janelr]

they are pretty quiet, like Smokie2D says the sound is from any air leaking from the mask, this is usually because you have stopped breathing and the pressure has increased though.

It is way quieter than snoring, my wife is happy that she is getting more sleep no that she isn't listening to me snoring all night

[Smokie2D]

The machines are quiet, the only sound is if air is escaping the mask. Also when under pressure my wife notices a draft if my nose is pointing at her. ( air vents at nose on my mask!).

[maria68]

I have the same mask. Do you find it uncomfortable? I had a score very similar to yours. How long did it take to get your excellent result? Did you have to see the technician again?

[Smokie2D in reply to maria68]

It will sound smug but the first night seemed to click. The mask is a pain in the nose really but its worth putting up with. I dropped from 63.1 per hour on the test to less than 3 on first night. I was lucky, but I tested the seal a lot and kept it on as long as I possibly could. It was that or no driving if I couldn't control it! As for comfort some nights its ok the next yuk. Some advise humidity etc but being a Scot and thrawn I will beat it! My face may change shape though!

I saw the specialist nurse on the 24/12 and had a phone call on the 15/1. I do not need to see them again and can call them for supplies for new masks etc when I need to. They are very pleased with results and see no need to see me in clinic. I have an open appointment to contact them at need though.