Newbie full of Nervs

[Philipb]

Hi all,
I'm Philip and cannot sleep tonight. Its been a long journey to discover what is wrong with me and to finally get to where I am right now. The Night before I get my CPAP machine for the first time.

In a little over 8 Hours I have the long awaited appointment in at the Glasgow Royal Infirmary when the fit me with the machine. And not a minute too late with problems at work caused by lack of sleep.

Take care and I'll Update you soon (Hopefully I'll wake up intime for work on Tuesday

Yours
Philip

[jackyk]

hiya and welcome to the forum
hope you get sorted with a machine and will get some long awaited sleep

[Sparticus]

Hi Philip

Hi Philip
Dont expect too much from your machine on the first night as its usually a learning curve for the first few weeks but you should feel the benefits quite quickly. You must live over on the westside if your going to Glasgow as Im more in the middle and go to Edinburgh, anyways good luck mate

[Berneta]

Nervs

Hi Phillip, we all go through the nerves from Hell at first. Just read up on the threads for first time users-- and try it out BEFORE you actually try to sleep in it. Walkind around wearing it presents a "sight"--but it helps us get used to the feel of wearing the mask, and makes it easier to adjust. If you can--- hook your mask to the machine in the evening and breathe through it while watching tv or reading. The more you wear it while awake--the quicker you will adjust while asleep. Best to you, x Berneta

[Sleep2Snore]

Let us know how you get on

[Philipb]

Two Nights Done

Hi all
First night was Hell, As you will alll know for the first two weeks this is not a threraputic Machine but a testing machine that Ramps up and down the pressure over the time.

First Night was not able to keep it on for even the required 4 Hours. Well It was 4 Hours but the system only recorded 3.7 due to the times I ripped the mask off gasping for air, or so it seemed. (The Presure was at the highest at those times). Yes a very steep learning curve.

Last night was totally different. I'd dozed off on the sofa before going to bed and then when on the machine knew wat to expect. 4 and a Half hours later I'd actually got some sleep in the middle and coped though fully awake when the presure was at its highest.

Even addapting to the drying effects of the system.

Thanks for you messages of support. Have to rush work calls.

Yours
Philip

[symmit]

Philip - see if you can get a few days off work, it'll help if you're a bit more relaxed and not thinking about work for a while.

[Philipb]

Machine Gone Haywire

Hi all, the machine has decieded I'm a baloon and needs to pump me up in High Pressure. It now ramps up to 19.8 at which presure I am wided awake and struggling to exhale

Spoke to the Hospital Techs today about this very uncomfortable experience. Their Suggestions are:

1. (1) Perhaps that's the Theraputic Level I require (Causing Distress) REJECTED
2. (2) Stop Using the machine and bring it in and we will investigate (7 Days Time) ACCEPTED

Has anybody had a similar expreience or knows what may have done to make the machine act like this?
Yours Philip

[Fredxx]

There are plenty of stories on the forum about cases of APAP machines behaving like this - the cause could be many things and seems rarely because that is the therapeutic pressure you need.

because of the sophisticated algorithms the machines use, it is difficult to say what is causing the problem. At a guess it might be some mix of leaks in the mask allowing you to have an event, causing the machine to ramp the pressure to counter the event, causing more leaks or changes to your breathing pattern caused by panic from the machine ramping up the pressure. Complicated stuff this APAP therapy!

For people who get an APAP long term, instead of getting a CPAP, the solution is for the max pressure to be set at some level sensible for the individual, rather than at the default 20 allowed by the machine

If you want to try again in the 7 days before you go back to the clinic, try wearing the mask when you are awake, with the machine delivering the full pressure, and get used to breathing against it. If it is panic caused by the pressure ramping this will get your body used to it and reduce the panic.

It is all worth it in the end!

[Tigers Fan]

Hi Philipb

Seems you have been handed a 'wide open' APAP - this is typical NHS behaviour and is about them being able to know your 90% pressure and thus at what pressure to set your CPAP. The problem wth that approach is exactly your experience - you have an event, the APAP cranks itself up to counter the event and it stays up there till it is convinced you are alive and well - and you are screaming in frustration and/or panic, certainly not asleep!

What to do? Assuming you have an APAP for a week and that it is then swapped for a CPAP, there is not much to do except persevere. The more sleep time you get with the machine set as it is, the more info the clinic will have. Does the machine have a ramp button? If so, learn how to use it in your sleep - full pressure wakes you up, sleepily reach out and press the ramp button - instant calm again!

If however,you are given an APAP permanently, you can learn how to access the clinicians' menu and adjust the machine to suit your needs - many of us do this.

TF

[Philipb]

Thanks Tigers Fan,
Yes there dose not seem to be a way to access the menu and only a Mask Fit option that reduces the preasure for about a minute untill its back full on.

The machine is a ResMed S9 Series which records data on a SD Card. I am a programer and have looked at the data on the card. Its a very simple Tab Separated data Streem and in theory should be easy to reduce the max pressure but have been asked not to do that by the technicians.

I think I know where the problem might be. I'm a diabetic and having problems with my sugar level at the moment. Resulting in regular trips to the bathroom. I've just been taking eh mask off but have since discovered that turning the machine off during the night and then restarting is counted as one session in the night not two. Or a least one night when I switched off in error (Having been told they neeed at least a 4 Hour session) the machine only reported one five hour session rather than an Two, Two and a half hour sessions.

Yours
Philip

[jackyk]

Hi Philipb

Seems you have been handed a 'wide open' APAP - this is typical NHS behaviour and is about them being able to know your 90% pressure and thus at what pressure to set your CPAP. The problem wth that approach is exactly your experience - you have an event, the APAP cranks itself up to counter the event and it stays up there till it is convinced you are alive and well - and you are screaming in frustration and/or panic, certainly not asleep!

What to do? Assuming you have an APAP for a week and that it is then swapped for a CPAP, there is not much to do except persevere. The more sleep time you get with the machine set as it is, the more info the clinic will have. Does the machine have a ramp button? If so, learn how to use it in your sleep - full pressure wakes you up, sleepily reach out and press the ramp button - instant calm again

If however,you are given an APAP permanently, you can learn how to access the clinicians' menu and adjust the machine to suit your needs - many of us do this.

TF

do you think its advisable to encourage newbies to access the "clinicians" menu. its called that for a reason, because you need to know what youre doing when you access it. sorry but thats what they are paid for, to sort it out. wouldnt like to think someone did damage thro doing this or became ill.
this forum is to give advice to people not to try and teach them to become experienced at something when they clearly arent. sorry rant over but getting sick of reading posts about how to become god and sort youre own pressures out etc, thats what hospitals/sleep centres are for

[Richard]

I think many of us need saving from ourselves to some extent, Jackie, but slavishly following the opinions of the medical profession is destined to end in frustration at the very least.

We know our own bodies better than anybody else, as any medic. will concede, and if by the application of a little trial and error we can modify the therapies to what suits us best, and we feel comfortable with that, then there is no harm.

Common sense plays an important part, of course, but it’s not as though anyone here is advocating searching for a gas-leak with a lighted match.


Richard

[Tigers Fan]

Hi Philipb

So - would switching the machine off for a second or two and switching it back on again put it back to the start of the ramp?

TF

ps the machines are designed to operate between pressures of 4 and 20 cm H2O. Adjusting your pressure yourself anywhere between 4 and 20 cm is within the safety parameters designed into the machine. Your hospital has sent you home with a machine set at Pmin 4 and Pmax 20 so regulating your pressure yourself to reduce the Pmax is hardly going to cause you harm. The anti-DIYers would have you believe DIYing is dangerous but without displaying the slightest knowledge as to how or why. It is, of course, your choice whether or not to go DIY when you have your permanent machine. Most of us felt we had little to no choice because of less than adequate clinics - hopefully yours is a rare-ish exception and will prove more helpful and co-operative than they seem to have to date. It boils down to the same old same old - some of us can think for ourselves and others seem less able or just plain won't.

[jackyk]

i can and do think for myself, i am after all a grown-up with more than the odd brain cell to my name. i "wont" mess with my settings as they were set to whatever for a reason. why change something if it works, or is it chasing the elusive 0 ahi. i am down to 1.75 per hour on my last reveiw , which is fine by me, i can live with that thankyou very much.