After first nights on CPAP I'm lost

[Gabby]

I've finally started my CPAP treatment. I went and collected a rental machine that I have to use for three months a they ave me a ReMed S8 Spirit. They fixed it to 6.
I left and was told to press the start button.
I have a Nano Swift FX mask. First night I slept seven hours, waking a number of times for drinks and twice for toilet. I was mostly on my back once on my side. I felt quite comfortable with the mask and the general feeling of the air, in fact I could not really feel the air blowing in to my nostrils. The only reson I knew it was, was because I could feel it coming out the vent, otherwise I would be doubtful.
The next morning I tried to look at the machine to se if there was anyway to discover if I had had any leaks but could not find out how to.
All day I was exhausted and spent most of the day in bed, with the mask on.
Later in the day I rang the place where I got the machine from and asked about leaks and AHI's etc and she said I won't be able to find that out, unless I have a dry mouth and I said well I did have a dry mouth for the best part. I told her I was distressed that I would not know how I would have leeks and I mentioned that I have a humidifier here for an S9. (She had previously told me in the shop I didn't need a humidifier and I being overwhelmed by her and having a migraine at the time of my visit to pick up the machine did not mention I already have one, I was kicking myself later) anyway she is sending me an S9 machine in the post on Monday, do not know if it is an Elite but she said it had a smiley face on it so I could tell about the leaks. Maybe it is the Escape
After a day of sleeping I slept, or tried to sleep all night with machine, not knowing about leaks again, had a headache in middle of night and when I woke to go to toilet at 2am and went to disconnect hose I broke my hose, the one from mask to my machine hose. Just as well I have a spare.
I had a shocking night, have just woken and am getting this off my chest.
I am so sorry. I don't know how I am going to feel today, if I am going to be tired or not. At the moment I feel like crying. I am not going to give up because as I said when I get the mask on I feel quite comfortable. I just don't know how to know if I have leaks or not and that is making me paranoid and also I don't know if it is working and cutting out my AHI'S.
The woman said I wasn't allowed to read the SD card.
Sorry this is so long but I have no one else to talk to about this.

[Peter_C]

First, you've gotta remember, you didn't get bad overnight, nor will you get better overnight.

It's OK to vent, and we are here for you

Be sure to write down both questions and comments that you wish to talk about with your DME.

(In my book), naps are fine, take one if you feel the need, just use your machine whenever you lay down.

Give it time. Some folks (like me) that are really bad, saw a difference day one, but many other people don't see any difference for a week to a few months.

[retired_guy]

While it's way too soon to know if this is helpful at this point there are a few things you can consider:

1. If your leakage was really bad, you probably would know it. Did you find yourself blown against the south wall when you awoke this morning? No? Then probably the leakage is not truly awful.

2. The only thing of importance is what it is or is not doing for your apnea events. To know that you kinda sorta need to know what they have been, and what they are becoming now. You may not know what they have been but you should be just fine hooking your sd card up to your computer and viewing your data through the Sleepyhead software. "You're not allowed?" Nutz to that. It's your data. It's your nose the contraption is blowing air into, so don't let your technician blow air up anything else.

Download, install and learn to use the Sleepyhead software. When you take the SD card out of your machine, set the little lock on the side so your computer can't have it's way with the data other than to read it. Read it into the software and you'll learn all about leaks and aha's! and everything.

Remember: The mask and you are one!

[TassieJeff]

I've finally started my CPAP treatment. I went and collected a rental machine that I have to use for three months a they ave me a ReMed S8 Spirit. They fixed it to 6.
I left and was told to press the start button.

The woman said I wasn't allowed to read the SD card.
Sorry this is so long but I have no one else to talk to about this.

Hi Gabby
Don't dispair, I've only just started with APAP therapy and doing it alone without any sleep specialist support because the system cut me loose when they found out I purchased my equipment online from the USA (for less than half the discounted prices in Australia). If the attitude from your specialist is to go home and "press the button" then that's crap. I'm glad that I have got all the help I need here on this forum and not from money hungry organizations.

I'm having a ball and it's all good. I check my detailed stats each morning on my computer. All the information is there...AHI<5...very little leaks etc. very reassuring to know my pressures have not gone beyond 9 each night. I've taken printouts to my GP and he is happy with the results.

Do look at the info on your SD card but be careful not corrupt any data. That's one of the reasons your specialist is concerned about. That and the fact, once you become competent in reading the data, you will find it a straight forward procedure and wonder what the fuss is all about.

By the way, you will be aware of any significant leaks because you will hear or feel them (hissing or blowing onto your eyes etc) if not then it's no problem. Your new machine is likely to be the S9. With that it tells you with the smiley face icon it's all good. You will be able to check prior to going to sleep if the fit is good as well.

Hang in there.

[SnuffySleeper]

First couple nights were the worst. I felt so bad, like I been hit by a train. It's even worse because you get all hyped up in your head that this is going to be great and make you feel better! So the first couple of nights was really depressing waking up with a headache and feeling hung over it just makes you want to quit.

But it does get better, 3rd night was great for me. Then you have good and bad nights, but nothing like those first couple nights. Almost a month in to it now and I feel like I am just getting started and still have a lot to learn in what helps with a good night sleep and what hurts it. Overall I am slowly feeling better, have much more energy and doing normal stuff in life just isn't as hard anymore.

The first few days though doctors should really warn people, I got no warning and it was a shock feeling so bad, but you gotta climb the peaks to coast down the hills.

[DeepBreathing]

Hi Gabby, welcome (officially) to the hosehead club!

The worst is now behind you. Unfortunately I think there is a lot of expectation that CPAP will give instant results and you'll wake up the first morning feeling like you can climb a mountain. The sad truth is that a lot of us feel like we've been hit by a mountain. CPAP therapy requires your body and brain to adapt to a new way of breathing. For the lucky people that happens overnight - for the rest of us it can take some time. Don't be disheartened, it WILL come good. It's just not instant.

The S8 Spirit was a good machine but it's now a bit out of date. It's good that they'll update you to an S9 so you can use your humidifier. If you don't have a humidifier on the S8, that's probably contributing to your dry mouth. When the new machine comes, make sure it's not an Escape. Being a government-funded machine they'll probably try to get away with the cheapest possible, but patients do have rights and one of your rights is an INFORMED consent to your treatment. If you can't get the data, then you (and importantly your doctor) are not fully informed. As an aside, I really don't know why they keep making these bricks - the cost difference to the manufacturer surely can't be more than a few dollars. (Though I notice you said it's a rental machine. If you're paying for it then you should be able to specify what you want. If that's the case I'd push for an S9 Autoset).

On the subject of data, I believe (people will correct me if I'm wrong) the S8 didn't use a standard SD card, but a ResMed special. You can't use an ordinary card reader for it , you have to have the special ResMed card reader. The S9 uses an ordinary SD card like you'll find in a digital camera. And to the person who told you that you're not allowed to look at your own data, well that's just bulldust! Ask them to specify which clause in what act or regulation says so. Some of these people are full of it and need to be brought down to size (which is easier said than done when you're unwell and under considerable duress). I had one tell me it's illegal to import my own CPAP machines or supplies. I asked him to show me the regulation and he had to back down.

You've just taken the first step. And like many first time things it didn't live up to expectations, but that's no reason to stop. Keep at it, be strong. It will come good, and we're all here to help you along the way.

[TassieJeff]

e duress). I had one tell me it's illegal to import my own CPAP machines or supplies. I asked him to show me the regulation and he had to back down.

It's not illegal to import a CPAP machine into Australia. Mine was delivered by FedEx after they rang me to say Customs & Border Security have cleared it and just want me to pay a $55.00 admin fee.

It seems the Australian Sleep Industry is on the back foot because the modern APAP machines just about makes their profession (dare I call it that?) redundant. They need to review their policies and work with the public to achieve the best health outcomes. I was happy to have a sleep specialist as my consultant, but was told no one will do that because I privately imported the machine.

[eviltim]

Gabby,

I'm really sorry to hear about your experience with the supplier.

If you had a perfect nights sleep on your first night, you'd be the exception to the rule. You may or may not have had leaks but I would not take your first few nights being bad as an indication of severe leaks.

When you get the S9, hopefully it will be data capable. My nurse said the same thing about looking at the data on the SD card (you might destroy the data!). Unless you explicitly delete it, you are not going to hurt anything. So, look at the data if you can.

Here's hoping it improves for you shortly.

[TassieJeff]

When you get the S9, hopefully it will be data capable. My nurse said the same thing about looking at the data on the SD card (you might destroy the data!). Unless you explicitly delete it, you are not going to hurt anything. So, look at the data if you can.

Here's hoping it improves for you shortly.

I understand the S9AutoSet keeps it's data in the machine for 365 days. The SD card is only a portable RW memory card. You should be able to download the data again when it is inserted back into the machine.

[comatose]

I understand the S9AutoSet keeps it's data in the machine for 365 days. The SD card is only a portable RW memory card. You should be able to download the data again when it is inserted back into the machine.

Not quite Tassie,

ResScan Downloaded Data Via SD Card

365 summary sessions
30 detailed sessions
7 high-rate detailed session

http://www.resmed.com/au/assets/document...ow_eng.pdf

You need to update your resscan and or sleepyhead with your SD card within 7 days or else you will lose some or all high-rate detailed session's, dependent on how long you leave it between downloads.
I hope that makes sense