[CPAP] New CPAP User - Rough start

[Kephus]

Hi Everyone,

I am a new CPAP user and have been trying to get used to my machine for about three weeks.  So far I have not been successful, and have yet to be able to get any sleep with it.

My approach has been to put the mask on at the beginning of the night and then try to sleep.  After not being able to sleep for a few hours I have been removing the mask just so that I can get SOME sleep.  Unfortunately, the feeling of then suddenly not breathing against the pressure almost makes it feel odd to breathe normally.  Combined with the frustration and anxiety of using CPAP, it then usually takes me another couple of hours to actually fall asleep.  By then I have lost the majority of my night, which has resulted in significant fatigue and headaches during the day. 

I have attempted to contact my health care provider, but this has resulted in a run-around.  The doctor recommended talking to the equipment provider -- the equipment provider recommended talking to the doctor.  I have attempted to switch to a different mask, but this hasn't changed the results.

I have read suggestions to wear the mask during the day.  Unfortunately this doesn't work well for me as I work 12 hour days behind the computer.  Not only won't I be able to view my computer monitor (I cannot wear glasses with the mask), but I am constantly having to take video conference calls.

I'm also dealing with an odd anxiety in regards to the machine itself.  It is an auto variable pressure unit, and the pressure is set 5 - 20.  Working in the IT industry and being a former robotics engineer, I am all too familiar with technology devices failing -- sometimes with dire consequences.  I therefore can't quite shake the odd thought of falling asleep and having the machine doing something strange like jumping to maximum pressure.  Naturally, this isn't helping my ability to actually fall asleep with it.  :-) 

At this point I am trying to find a workable strategy to get used to CPAP therapy.  And ideas or suggestions are welcome.

[Melman]

Welcome to the forum. Even if the machine were to jump to maximum pressure it might wake you up but the max. pressure is not enough to hurt you. It's not even enough to blow up a balloon. I assume you had a sleep study. Is so and you have a copy please post it with your personal information redacted. If you don't have a copy I suggest you get one as well as a copy of your prescription. Both will be helpful in the future. Also, I suggest you download free OSCAR software from the link at the top of the page so you can post data from your machine. We will be much more able to assist you with data. Without data we would be mostly guessing.

It's unfortunate that your not getting much help from your doc but that's pretty common. Most of us have found this forum more helpful than the sleep professionals we see.

[srlevine1]

Might I suggest you use the Dreamwear mask that eliminates problems with glasses and seeing the screen. Since the hose uses an overhead attachment, you can position the device behind you or on the desk. You may also wish to set your EPR to 3 to reduce exhale pressure if you are using a ResMed machine.

It is crucial for you to download OSCAR and post some data to get more specific answers for the forum. Look at the bottom of the @Melman post for details.

[StevesSp]

When you say that you try to sleep wearing the mask but cannot, what exactly is happening? Obviously, you are experiencing some anxiety (unfounded, as has already been said) but what else?

I would say though that a minimum pressure of 5cm is probably too low and likely to cause discomfort. You won't suffocate, but you will have to work hard to draw sufficient breath. OTOH, a max of 20cm is about as high as your machine can deliver, suggesting no setup has been performed. Those pressures do not seem like clinical settings to me but factory settings perhaps. Apart from the lower limit being oddly low, that huge range would make sleep almost impossible for me, even if your sleep doc thinks they are required. If you actually managed to fall asleep and then suffered an apnea, that difference in pressure alone would be enough to alert your body to something crazy happening.

Also, you might think your mask is cinched up correctly and free of leaks when you turn the machine on, but 5cm isn't enough to test that it will seal at 12cm or more, so you may well suffer massive leaks should the machine ramp up. Wakey wakey!

Others on here who are more expert than I will advise on adjustments, but as a example, my pressures are currently 12-15.

Did the sleep 'expert' tell you what your titrated pressures were, i.e. what pressure is needed to keep your airway open?

[Sleeprider]

You may not be aware your machine provides exhale pressure relief (EPR). This can make a big difference in comfort by lowering the exhale by 1, 2, or 3 cm pressure. We can help you access the settings, or just download the setup manual at the top of this page and learn to DIY.

[SarcasticDave94]

Unfortunate this is typical on docs not supporting you. They love to order sleep studies and titrations and to script CPAP at defaults, doesn't recognize us or our health needs on an individual basis. Then when they treat all of us with the same solution as in the default setting CPAP, they would rather blame us for the failed therapy and great results that should have been obtained because they are a medical professional and we are merely the one that uses the mask and PAP and are the one suffering from apnea and sleep deprivation.

My default answer to their default answer is Quack. They prove themselves daily that they know very little about successfully supporting all the PAP users that pay for their boat payments. This week I dealt with a new pulmonary doctor on the phone consult, the first one mind you, that has some but not all of my historical test results from a former pulmonary office. He boldly proclaims I have no COPD or sleep apnea. I have been misdiagnosed according to him, and my reading my own sleep study results cannot be accurate because I'm not a doctor that apparently has magic glasses to read data like Central Apnea events 124, Obstructive events 24, or reading pulse oximeter data that sees my oxy level at 88%, but reading the data caused the oxy to drop not that I have a medical issue. REALLY! This is called being a QUACK! I'm saying all that to point you back to your own duck that is quacking.

Few of us here on the Apnea Board are medically trained that I am aware of. But practical knowledge to run a PAP be it CPAP/APAP BPAP ST ST-A ASV WE at apnea board have practical know how and run circles around those supposed experts. Here a quack there a quack old McDonald has a farm EIEIO.

So if you want to run your CPAP and get not just a functional therapy via the mask and PAP, but actually a very well optimized therapy for apnea, look no further. I myself am not the best but I can and will assist. I have my part to play in assisting, but others like Sleeprider will provide excellent chart reading and pressure suggestions. I am a bit more than mere comic relief. I bring in dealing with dopey ducks as I've dealt with many. Anyway, get the sleep study and/or titration detailed reports. HIPAA states you are allowed these, and quack cannot deny providing them to you. You need OSCAR and a proper SD to capture the data and post here. Do these and then post them. If you do not act, we can't make you, but we will not assume blame if you don't listen. Just laying out what must happen to succeed is all this is, not an accusation. Ask, listen, do. Make sure to do all this and your therapy gets better in minutes for free. You don't need to wait for an appointment. It all is free, but if you're of a mind to, I'm sure the powers that run the forum would appreciate a small donation if you so choose. Regardless of that choice we will assist, you will do and you will win. Simple. Good day.

[martyedb]

Welcome to Apnea Board!      You are new to CPAP and to Apnea Board.      You are doing some research and asking questions.      These people can help you a lot!

My two cents worth?    If your machine is set for RAMP,  someone will probably tell you to turn it off.     When I started with my machine, it was set on ramp.    (It is supposed to  help us get to sleep.)     So I went to sleep,   then the pressures increased to the  set therapeutic levels,    so then  I had LEAKS   and woke up.      ...  I asked  my home supply staff to turn it off,  and they did.     Eventually, I learned how to change some of these settings myself  (thanks to Apnea Board!)    

There is much to learn,    and you have started.

[jammer521]

TRy falling asleep first without the mask, then setting an alarm to wake you up after and hour and put he msk on, it maybe esier to fall back asleep with it on since your already in sleep mode, like waking up to use the washroom and falling right back to sleep

[stanleydean]

Hi Kephus, it's good that you have hooked up with this forum early in your CPAP journey, if you stick with it and if you soak up the suggestions and information available here I believe you will find that your results will improve. 

If you did have a sleep study and do not have a copy of it make it a priority to obtain a copy and also a copy of the Rx that your doctor wrote for the machine. File these and any other documents permanently, you will need them.

If you have a compliance requirement pay attention to that until you are more comfortable with using the machine.

Download Oscar and get comfortable with using the program and post some results.

If you haven't already done so, download the clinician's instructions for your machine and get familiar with it.

Spend time becoming familiar with all the nooks and crannies of this forum.

Your settings need to be reviewed and there are several on the forum that are knowledgeable in this so pay attention to comments and recommendations about settings.

I wish you the best, hang in there, Stan