New CPAP user a few questions

[luvvie]

Hello,

I was diagnosed with severe sleep apnea a couple of weeks ago. I picked up my CPAP machine on Friday (Resmed S8 Elite). As I found the full face mask too claustraphobic, I came away with a Mirage Liberty mask which I can cope with as it feels less intrusive.

Friday Night - 1st night with CPAP

I put the machine on a 5min ramp with a pressure setting of 8. In the middle of the night I woke up feeling like I was suffocating. The nurse at the hospital said that this might happen if the pressure was too low. I had a pretty restless night as I just couldn't seem to get comfy. I woke up feeling a little bit better than normal but I still felt tired a little later in the day.


Saturday Night (last night) - 2nd night with CPAP

I changed the pressure on the machine to 10. I still used the 5 min ramp to get me used to the increase in pressure. The machine seemed to be a lot noisier...(does it get louder the higher the air pressure?). I had some problems with getting my mask to seal. As soon as the pressure reached its optimum level one of my nostril kept springing a leak, this happened about 4 times.. (I was really starting to despair!!). Eventually I got it to fit correctly and managed to get off to sleep. (This wasn't till after 2am) I managed to sleep through till 8am - I then took off the mask and slept through till 10.30.

So that's what's happened so far.... but I have a couple of questions that I hoped that you might be able to help me with.

I am still tired today, do you think it might be that the pressure is still wrong and could do with being put up a little higher? How did you find out the right air pressure for yourselves?

I woke up last night with a dry mouth, I was gasping for a drink but as it had taken me ages to get the mask to fit, there was no way that I was taking it off to have a drink. Would a humidifier help with this problem?

Is there a device to keep the hose out of the way while you sleep?

Sorry for so many questions but I am desperate for this to work and want to get comfortable with the machine as soon as I can.

Thanks in advance for any help.

Louise

[Tigers Fan]

About typical beginning

Hi luvvie

Welcome! and thanks for a detailed post!

There are a lucky few of us who had an easy time of getting started, for the rest it seems to take about ten to fourteen days to get used to the new gear, settle your straps, etc. There are some poor folk go through a lot of discomfort before it comes right. The good news is that, if you persevere, it nearly always does come right in the end. There are umpteen threads begun by folk experiencing similar start out problems to yourself - it's worth reading the threads, they contain a mine of information.

The pressure you are talking about is the ramp start pressure, I think, and not the set CPAP pressure. Your machine will "self-titrate" so the sleep clinic will know what to set it at at your next appointment. The ramp pressure is for your comfort and the secret with all things CPAP is to move in esy steps. As you felt you were suffocating at 8, you may have moved the wrong way - too much pressure gives me that feeling. Try a few pressures - just hold the mask to your face at each setting till you find one that feels comfortable. The five minute ramp is way too short! The idea is to fall asleep during ramp time - so 15 , 20, 25 30 minutes might suit you better.

A humidifier will definately help with dry mouth but may not cure it. I've just discovered chin straps to prevent mouth breathing and swear by them. With a Liberty, I'd think of a chin strap as essential kit. A humidifier will bring you to the rain-out problem - the certain cure for which is a heated hose at £70-ish from Australia.

For hose management, see my "Hose? What hose?" or buy a Hose Lift from Intus (under Tubes and Wraps) or loop your hose over your bedhead or attach a hair scrunchy to something above and behind you (the wall? a shelf?) and thread your hose through that.

I understand 'desparate' fine well - but it doesn't help, patience and perseverance bring results! Also, reading threads already on the forum will help you a lot - technical questions and moral support both.

Good luck!

Tigers Fan

[musotech]

Hi there Luvvie,

Tigers Fan is right, take it easy and this forum is a gold mine of experience so take advantage. I've been on CPAP for nearly 3 months now and despite a reasonably good start a couple of set backs, like flu and a chest infection, made life a little less rosey for a while, but it soon passes. I still have problems with straps and leaks, but on the whole they are a minor issue. The best thing is I have my life back - wide awake and more energy than for a good few years!
Best of luck for your new life!

[leswaller]

Hi Luvvie

I have been on an S8 escape for almost 12 months now, once you have it sorted it is a dream
If you want any specific help send me a PM and I will tell you how to get into the clinical menu so we can see what the settings are. As CPAP machines go the S8 is a really good one. It will never be as good as an APAP, but you are unlikely to get one of these via the NHS.
The main things as everyone says is DONT GIVE UP! the end results are definitely worth the effort

[James @ Intus]

Hi Louise, welcome to the forums!

Sleeping with it, second night, from 2 till 8 ish is actually very very good so you can be proud of yourself!

The previous posts have said it all really. You just have to keep tweaking everything until you strike that near-perfect balance between uninterrupted sleep, comfort, quality of sleep and a low apnoea hypopnoea index.

Getting yourself to sleep the entire night with the lowest possible pressure is one thing but making sure you get enough pressure to take care of the breathing events is more important.

The real perk tends to come around the 7 - 10 days mark when energy levels rise significantly.

Keep us posted!

[luvvie]

Hello,

Thanks for all of your replies. I've been back to the hospital today and picked up a humidifier, which should hopefully deal with the dry mouth. I have put the pressure up to 13 (I am adjusting the pressure via the clinical menu on my machine) but I have found that if I try to turn it up any higher my nose springs a leak. I have also been given a full face mask which will hopefully enable me to turn up the pressure on the machine as I am still not feeling any benefit from the CPAP.

Fingers crossed!!

Louise

[luvvie]

Still struggling with the CPAP. Turned the pressure up to 15 now.. got the full face mask. No leaks, yet (fingers crossed).

One problem I have is that when I wake up my face is really puffy especially round the eye area which is taking about 1.5 hrs to go down. I really look dreadful when I wake up. I never had the face puffiness with the liberty mask. Anybody else suffered with this and have any suggestions?

Still going with the CPAP but still not feeling any benefit, I'm sure it will come.. Just gotta keep going. And to add insult to injury.. my husband has developed a snore! lol.. not that I can complain I must have kept him awake for years! Now I know what it is like to have the shoe on the other foot!

[Tigers Fan]

I wonder if .....

Hi luvvie

No real idea what causes your puffiness but I wonder if it's due to over-tightened straps - too much pressure on your skin.

Tigers Fan

[leswaller]

Hi Luvvie
I agree with Tigers Fan that it is probably due to the mask having to be very tight to stop leaks at 15. This is really quite high and I am wondering if this may be the problem. I notice that you are winding up the pressure yourself. Have you had any proper testing to see if you need such a high pressure, i.e. are you having apnea events at this pressure. If you are trying to see if you are less tired as a means of testing, then you will need to do at least a week at each pressure every time you change it to see if it has any effect

[jillybean]

Hi Louise

I had that puffy face thing too for a couple of days at first, dont know what caused it but it went away! Maybe straps too tight, my sleep tech straps the mask down like a car on a ferry!! LOL

[leswaller]

Tell him you are unique design of car not a container lorry, you only need them just tight enough to stop leaks

[jillybean]

Dont worry LW after talking to you Guys I fiddled with it and sorted it myself!!!
The weird thing is you get a good fit for a couple of nights then have to do it again but Im getting there slowly but surely!

[threewheelweave]

Lower the pressure & Tips on the Liberty Mask

Hi Luvvie,

You are making excellent progress - don't give up you will succeed!

Your pressure seems very high need to check it out - have you had a trial?

I use the liberty mask and have found it excellent - I have a humidifier and if you get dry you can turn off and unclip the hose and take some fluids in via a drinking straw through the hose opening - it works! This means the mask stays on and does not break the seal you have formed. I do not use a chin strap and my mouth can open without leaks on the jawline.

On the nose issue an excellent piece of advice was a very light smear of vasaline on the outer nasal cushion helps the seal at higher pressures.

Hope this helps - let us know how you get on - keep posting!

Cheers

TWW
UK

[tonybrentwood]

I'm just starting my third week of CPAP now, finally feeling the benefits, I can't sleep in the afternoon even when I try really hard!
As to the mask fitting without leaks I've slackened off the straps on my nasal mask to the point where it feels really loose, but when the pressure gets into it it moulds to my face perfectly, no leaks, no strap marks. I've not used my CPAP long enough to make recommendations, but it might be worth slackening the straps beyond what you would normally do just as an experiment.
I use a hose lift from Intus, it's collapsable for travelling, just slips under the mattress and the elasticated ring at the top stops the hose from tangling with me or the bedding. It actually looks pretty cool too in it's electric blue livery, not a bit 'medical' looking.
I'm really pleased for you Luvvie with the way your equipment has been provided by the NHS, it's good to hear that some Health Trusts take CPAP provision seriously enough to fund it properly.
Regards,
Tony.