Coming to terms... Or not!

[smudger]

Well, after a week of 'lurking' and finding the discussion on the forum very enlightening, I feel confident enough to post my first message.

This is brought about for a variety of reasons, even though I've read all the 'stick with it' threads and the 'it takes time' messages, I find myself thoroughly dowhearted by my situation.

I got my cpap machine (Remstar Auto M series & Fisher & Paykel Flexifit mask) a week ago, I had high hope all my troubles would be over, I was looking forward to a good nights sleep and hoped (I was told) I'd feel a new man and life would be great. Instead, I find myself almost depressed - I seem to be sleeping worse than I did before (up to 60 episodes an hour), I still continuously wake up through the night and with the noise of my own breathing I cannot get back to sleep. I always seem to get leaks under my eyes and come the morning I am still totally knackered - just like I have been for as many years as I can remember.

I initially had the claustrophobic feelings but to to be honest, they went after a couple of nights, so I thought I was on to a winner but the last few nights have shown no improvement and I'm just beginning to hate the whole idea of it.

After reading snoozys story, I feel quite embarrassed to be moaning like this. Compared to her, I'm so lucky to have a pct who have funded this equipment with little or no waiting or fuss - sorry snoozy!

That said, I need to know what to do next, I have my follow up appointment in a weeks time and I'd like some advise what I ought to be asking for.

[puffin]

Hi Smudger,
Welcome, thanks for coming out of hiding.

As you have already said you are only a week into your kit. If you are still getting events then the most likely source is the mask. You have already stated that you are getting leaks round the nose, so the air pressure that you need for the treatment to work is escaping. You may or may not know that for CPAP to work that the airway needs pumping up to keep it open.

The mask you have, a Fisher & Paykel Flexifit mask, I tried once. I could not get it to fit my mush. I tried 5 masks before I found one that suited me. My clinic is very good at swooping masks! It could be that it does not suit you either, ask about trying something else.

In the mean time you could try readjusting the straps. Strangely tightening the lower straps can seal the mask around the nose. Rather than repeating my-self take a look at this thread, all good tips. http://forums.cpap.co.uk/showthread.php?t=135

You will have to let us know how you get on.

[leswaller]

Hi Smudger
I think the secret is a mask that you can get on with. My PCT is also very good and allowed me to try all the 3 or 4 mask types that they used, however I couldn't get on with any of them. After surfing the net and looking at what was available in the commercial world I bought a ZZZ-mask which is a full face mask without a head brace and almost totally flexible. It made all the difference to me as I turn over a lot whilst asleep and the other rigid masks used to dig in or move to the extent that I woke up. Have a look at this link http://www.eu-pap.co.uk/masks-c-1.html

[ChrisP]

Smudger,

Firstly well done for taking the tep and joining in the forum.

There is really nothing more I can add that hasn't already been said but just remember you don't suffer alone.

It took all of us different amounts of time to come to terms with being a hose nose and once it starts to work you will realise just how C**p you felt before.

ChrisP

[James @ Intus]

Hi Smudger,

Do you have the full face or nasal only mask?

60 events an hour is quite high. Can you find out from the Remstar's reporting menu which pressure it tends to sit at?

I just wonder, with such a high AHI, what pressure yours is at and whether perhaps something like a BiPAP was considered.

[smudger]

It's full face. I don;t know how to get info out of the remstar yet.

The 60 episodes was a sleep survey prior to getting the machine. I was saying, I seem to be sleeping worse now than then...

Hope you are all correct and time will sort it out!

[sleepyblade]

Smudger - Do you have an Encore Pro data card in your machine? If so, the best thing to do if you want to track your progress and see exactly what's happening while you're asleep is to connect your data card to a PC and use Encore Pro software to look at the data.

You will be able to monitor leaks and Apnoea/Hypopnea events. It helps to remove the mystery behind what's happening at night. It is very useful.

This is a great link Encore Pro info

The rebels at Cpap Talk are very pro active in monitoring their own progress.

[James @ Intus]

I don;t know how to get info out of the remstar yet.

Turn it on so it goes into Standby screen. Press right arrow button to go Therapy Usage > > Session greater than 4 hours > 90% Therapy Pressure

The 90% pressure is the pressure at which you spent 90% of the time at or below. This gives you an idea of the pressure the Auto machine finds is near optimal for you.

[sleepyblade]

One other thing. As ChrisP said, everyone is different in terms of how quickly they will feel better. For some it can happend very quickly, for others it can take weeks or months. It's a hell of a lot to go through starting on cpap, it's not at all natural being hooked up to a mask and having air blasted in your face is not nice initially.

I've been on it for three months and so far not had much benefit but that's because I've had so many problems with equipment and I'm actually getting less sleep than I was before cpap. I've found cpap to be horrendous but I'm slowly getting there. I think!

I guess what I'm trying to say is it's very early days. Read as much as you can on here. There are also other great forums with so much information and helpful posters. Cpap Talk and the Apnea Support Forum for starters.

[smudger]

How easy is it to get the software and card reader?

[sleepyblade]

Smudger - check your private messages.

[sleepyblade]

Anyone with a data capable Respironics machine will need the Infineer Mako DT3500 card reader and Encore Pro software.

[sleepyblade]

I couldn't get on with the Zzz, it couldn't cope with my draw drop. Still, better than the Comfortfull (I hate that thing) and half the price.

Hi Smudger
I think the secret is a mask that you can get on with. My PCT is also very good and allowed me to try all the 3 or 4 mask types that they used, however I couldn't get on with any of them. After surfing the net and looking at what was available in the commercial world I bought a ZZZ-mask which is a full face mask without a head brace and almost totally flexible. It made all the difference to me as I turn over a lot whilst asleep and the other rigid masks used to dig in or move to the extent that I woke up. Have a look at this link http://www.eu-pap.co.uk/masks-c-1.html

[leswaller]

Hi Sleepyblade
I got over that problem very easily (I had the same problem) I made up and elasticated strap that threaded over the two bottom straps on the ZZZ headgear. This strap goes under my chin and keeps my mouth shut - but my wife says I should keep it on permanently :

[sleepyblade]

Interesting. I did try that but never actually attempted to sleep with it as on the same day my Hybrid arrived and I've not gone back to the Zzz. I'll try that again and maybe give the Zzz another go. The only other issue I had with the mask was air leaking into my eyes when sleeping on my side. I have a PAPillow which should help in that regard.

It's always good to have two masks you can live with. Mind you, one would be a start for me The Hybrid has easily been the best for me so far and I'm still getting it dialled in. The amount of tinkering you can do to customise the fit is impressive.