New to CPAP and Struggling

Hi everyone

I'm a 24 year old female who isn't overweight and doesn't snore but I've had issues with chronic fatigue since high school. After finally finding a doctor who'd take my fatigue issues seriously I was sent to a specialist, did a sleep study and then 2 weeks ago was diagnosed with sleep apnea. I had an API of 13 and an oxygen level of 92% so my doc said I have mild-moderate sleep apnea. So I'm not that bad but still have plenty of time to get worse.

I've read a lot about the risks of untreated apnea so I understand how important it is to be treated. At first I was pretty upset about receiving a lift sentence but now I just really want to start feeling better and not tired all the time.

I started a one month trial of CPAP almost 2 weeks ago. I have a check-up with my sleep technician on Thursday.

So far I'm finding using CPAP really difficult. I go to bed when I'm really tired and almost as soon as I start using CPAP I'm wide awake. I think it's the hard breathing out that wakes me up. I can only sleep with the CPAP after lying in bed awake for around an hour, and then I wake up soon after. I'm just continuously drifting in and out of sleep. Sometimes I wake up with my mouth open so I'm going to ask for a chin-strap. Other than that I'm not sure if anything else can be done to help me sleep.

So far I've had one night where I wore CPAP for 3 hours and one night where I wore it all night. Other than that it's been 1-2 hours every night. I just feel frustrated that after 2 weeks it's no easier to use CPAP.

I'm not sure if there's much advice that can be given other than to just keep trying. Maybe I'll feel less frustrated if I just hear from people who felt like this but can now successfully use it. What techniques do people use to help them when they can't sleep? Should I just read my book with the CPAP on until I'm really tired instead of drifting in and out of sleep for hours? Do other people have issues with not feeling tired?

I really appreciate any advice or support that can be offered.

Tamara

Hi Tamara, welcome to the forum. What make and model machine do you have? If it's ResMed machine the name may be right on top, by the Start/Stop button. If it's a Philips Respironics machine you need to take out the water tank and look on the bottom of the blower unit (not the humidifier) for a number beginning with REF or DS. Even better if you also know your pressure(s) settings.

Your machine likely has exhale pressure relief on it -- do you know if you're using that feature? And Ramp is another comfort feature that starts the machine out at a lower pressure for a specified period of time and gradually builds up to your prescribed pressure(s). If you're not sure about whether these options are on your machine, we'll be able to help you once we know which machine you have.

With the mouth opening, chin straps sometimes help and sometimes not. Alternatives are a full face mask or using a bit of tape. Some people have been able to "train" themselves to keep their mouth closed.

Two weeks is still pretty early in the adjustment process, both in terms of getting used to the whole drill and in terms of feeling better. So hang in there. Reading till sleepy is certainly worth a try. Working with the comfort features on your machine can help a lot too.

Thanks for your response kaiasgram. I have a phillips machine, I'll check the exact model when I get home. It's a rental and I think the plan is that if the treatment helps I will buy my own. If there are particular settings you suggest I change then I will definitely ask my sleep technician on Thursday to change them. I don't think there's exhale pressure relief but I will definitely check.

At the moment my pressure is being automatically optimized by the machine and will be set on Thursday. Last I checked the machine was around 10.1. I've been using the ramp feature and I feel that does help.

Tamazapan wrote:Thanks for your response kaiasgram. I have a phillips machine, I'll check the exact model when I get home. It's a rental and I think the plan is that if the treatment helps I will buy my own. If there are particular settings you suggest I change then I will definitely ask my sleep technician on Thursday to change them. I don't think there's exhale pressure relief but I will definitely check.

At the moment my pressure is being automatically optimized by the machine and will be set on Thursday. Last I checked the machine was around 10.1. I've been using the ramp feature and I feel that does help.

The machine is probably set wide open to see where it wants to go. Unfortunately, this means that if the pressure is low and it needs to go up quite a bit, it will take time to get there, and you will have more events while that happens. When they review the data, they will mostly likley narrow that range or go to a single pressure. And that will help eliminate the events better as well as reduce the wild changes in pressure. So, you will probably find it easier to use after that range has been narrowed a bit.

And if you are taking meds that might make a difference... are you (going by your signature )?

Tamazapan wrote:Hi everyone

I think it's the hard breathing out that wakes me up. I can only sleep with the CPAP after lying in bed awake for around an hour, and then I wake up soon after. I'm just continuously drifting in and out of sleep. Sometimes I wake up with my mouth open so I'm going to ask for a chin-strap. Other than that I'm not sure if anything else can be done to help me sleep.

I almost gave up on CPAP after a week or so, also because of the breathing out thing. I searched the internet until I found out about the exhale pressure relief feature, and once I turned that on, it was a different world. Now I feel like I'm breathing completely naturally, even with a pressure of 10.5. Sometimes I even wonder if the machine is on!

As Kaiasgram said, explore the comfort features of your machine. Some of the settings are hidden in the clinician menu, so find out about that for your machine. I'm sure there are settings that will work for you. Stick with it and good luck!

Tamazapan wrote:Thanks for your response kaiasgram. I have a phillips machine, I'll check the exact model when I get home. It's a rental and I think the plan is that if the treatment helps I will buy my own. If there are particular settings you suggest I change then I will definitely ask my sleep technician on Thursday to change them. I don't think there's exhale pressure relief but I will definitely check.

At the moment my pressure is being automatically optimized by the machine and will be set on Thursday. Last I checked the machine was around 10.1. I've been using the ramp feature and I feel that does help.

I'm guessing that your rental machine does have some exhale relief feature since it's likely a newer machine. There's a link in my signature box to some video tutorials where you can familiarize yourself a little more with the comfort features of the Philips machine -- though the specific models vary this tutorial will probably get you "in" to the various menus where you can find the comfort features. Even if you're reluctant to change the comfort settings yourself, it will help you get an idea what's available so you can ask the tech (or us) about it. The Philips (Respironics System One) machine tutorial is the last one on the page. Don't be afraid to look.

I had a tough time when I started CPAP seven months ago; couldn't get to sleep, etc. Part of my problem was a very leaky (noisy) mask. It does take time to acclimate to this therapy. Your brain doesn't yet know that the alien on your face (mask) is OK.. even though you know it is OK, so you need to give it a chance to learn. Reading in bed is a good start, but if you can spend an hour or two each evening before bed, in your favorite chair in the living room, with the machine doing its thing while watching TV or reading, that will help to train your brain. Every week, try going to bed without the "relaxation" time and see if you get to sleep faster.

Thanks everyone again for your input! The A-Flex settings of my phillips device was disabled so I had to get the sleep technician's to enable it. I slept with A-Flex set to 2 last night and I found it a lot easier to breathe. I kept opening my mouth though so I asked for a chin strap today. I'm hoping for my first good night sleep tonight!

I've also gone down to the XS nose pillow mask as I think the pillows were being squished in my tiny nose.

My air pressure is still set to auto as there wasn't enough data for the technician to set it. If I get a few good nights sleep then they'll change it over. They also think I'm having issues sleeping because I'm having apnea while I'm getting to sleep and then I'm waking up from the machine bumping up the air pressure. I increased the starting air pressure to 8 instead of the original 6 so hopefully that helps. Thanks for the links provided- I used them to change those settings myself