Depressed about CPAP Therapy

[dbebz]

Hello everyone. I’ve never been on this forum before but I just started CPAP and it’s been quite the negative, distressing experience. I’ll describe below.

I’ve noticed that over the years, I’ve been told by different people that I snore, grunt and “choke” in my sleep. When I’ve tried to remain on my side, I’ve been told that my breathing sounds way better. I finally decided to get this checked out as I believed I have sleep apnea.

I don’t drink often, but when I have drank one night quite a bit and slept on my back, I wake up feeling terribly tired and I’ve been told I was “choking.” I booked the appointments and was arranged for an at home sleep study.

My doctor said “if alcohol and sleeping on your back provokes it, drink alcohol and sleep on your back for your sleep study. I did that and I was told I have extremely severe sleep apnea (52 episodes per hour). I also did an audio recording of my sleep that night and I had loud, choking sounds. I probably felt 4 times as tired as I usually do when I did this. Usually I feel just a bit tired.

Now I’ve been told by several other doctors that it was odd that my doctor would recommend drinking alcohol and sleeping on my back for the sleep study if I don’t usually do that regularly. I asked my doctor and he said “well we want to be able to catch the apnea. You have it regardless if you drink or not, alcohol doesn’t cause it but makes existing apnea worse. And we want to treat it, it’s not worth dying over. You could have apnea just every few days or something and what if the test didn’t show anything? Then you wouldn’t be treated.

Anyways, I was told my results were terrible and they soon set me up with the ResMed AirSense 10 autoset. I am a mouth breather but they wanted to try me on nasal pillows so I went with it. I tried really hard to practice nose breathing and have been getting the hang of it.

First night on CPAP, I was awake for 3 hours because the pressure ramped up eventually until it maxed out at 16. I just took the mask off because I couldn’t sleep, but woke up 4 hours later and managed to place it on and sleep for another 2 hours.

The machine registered my AHI is 13 despite the fact I was fully awake and consciously breathing through my nose. It’s a weird uncomfortable sensation so I kept breathing fast and not naturally as I was trying to get used to treatment. The clinic spoke to me via phone the next day and said “your apnea is bad, your machine had to ramp up very high at times” despite the fact I was fully awake when this was happening.

Now it’s night 2 and I tried to not be negative and give it a try. I was sleepy and excited to get some sleep to see how the device works. I put it on and it started at a pressure of 5. I take a while to fall asleep and I’m nervous about the treatment so that probably contributes to that. Next thing you know the ramp feature started slowly ramping up to 10. Then 11. 12. Next thing you know it’s pushing a pressure of 16 and I was in extreme discomfort and that’s it. I’m wide awake now. At no point did I doze off and have an event prompting this pressure increase. I was watching tv in bed. Perhaps my awkward breathing (somewhat deep and rapid) because I’m a mouth breather and the sensation of pressure is weird. I got used to the 5 setting and even 10, but 16 is insane.

Now I’m sitting here in bed writing this, extremely depressed and feeling hopeless. Now I’m wondering if my apnea could have been treated without CPAP (because of how the test was administered) but I was willing to try CPAP anyways but this is just terrible.

I really appreciate the support. Thanks

[babydinosnoreless]

The machine registered my AHI is 13 despite the fact I was fully awake and consciously breathing through my nose. It’s a weird uncomfortable sensation so I kept breathing fast and not naturally as I was trying to get used to treatment. The clinic spoke to me via phone the next day and said “your apnea is bad, your machine had to ramp up very high at times” despite the fact I was fully awake when this was happening.

Now it’s night 2 and I tried to not be negative and give it a try. I was sleepy and excited to get some sleep to see how the device works. I put it on and it started at a pressure of 5. I take a while to fall asleep and I’m nervous about the treatment so that probably contributes to that. Next thing you know the ramp feature started slowly ramping up to 10. Then 11. 12. Next thing you know it’s pushing a pressure of 16 and I was in extreme discomfort and that’s it. I’m wide awake now. At no point did I doze off and have an event prompting this pressure increase. I was watching tv in bed. Perhaps my awkward breathing (somewhat deep and rapid) because I’m a mouth breather and the sensation of pressure is weird. I got used to the 5 setting and even 10, but 16 is insane.

Hi welcome to the zoo. I'm sure the experts will be along in the morning to give you plenty of good advice.

In the meantime know the machine can't tell if you are asleep or awake. We call those false readings sleep/wake junk. You are restless and probably holding your breath a little as you toss and turn. Its kind of a vicious cycle.

Rather than getting used to the machine when you are already exhausted try wearing it during the day while relaxed, watching tv or reading a book. It is a good way to get used to wearing it without ramping up the anxiety.

Its normal to take a while to adjust. Hang in there it will get better! Almost everyone goes through an adjustment period.

[Julie]

Hi - the test was set up that way to get a 'worst case scenario' and it's done all the time (though not usually with alcohol unless the patient talked about it like you did ) because the doctors need to know the outside limits of your apnea to treat it properly.

Can you tell us what the minimum and max pressure settings are on your machine (not the numbers e.g. 16 that it went up to on that night), but the dialed in settings (possibly e.g. 4 and 20).

Turn off the ramp feature for now - I think it's confusing things and is not necessary yet, if it ever might be. It is a different setting entirely from the min. and max. I asked for above as it is timed to reach the minimum setting (only) over whatever number of minutes you choose to enter for ramping up to the min.

[Revived1]

Don't worry about the AHI that the machine registers when you are awake. It is not a real AHI, and has nothing to do with what will happen when you use the machine when you're asleep.
If you know what numbers your machine is set to, could you let us know in this thread. It sounds as though the max. may be set to 16. The numbers will keep going up while the machine thinks you are having events, even if you're awake. If you want to get it back to the minimum pressure, turn the machine off and then back on. It will go back to the minimum. While you're awake with the mask on, try to breathe evenly if possible to stop the pressure going up. If you cough/clear your throat, etc., the machine will think it's an event and keep going up. I do this a bit myself before going to sleep sometimes.
As for the whole thing being depressing and feeling totally weird and foreign, that is totally normal. I only started on CPAP a few months ago, and I fully believed I would never get used to it or feel that it was 'normal'. Now, it is just something I take for granted...just part of the furniture in my bedroom, and I am totally used to it. Believe me...You WILL get used to it before you know it!
Best of luck.

[Julie]

Sorry, I disagree about trying to breathe evenly - the machine should do that for you and you need to let it do that. Also, taking anything much from using the machine while awake is pointless as it responds properly only to asleep breathing patterns, very diff. from awake ones.

[dbebz]

Thanks everyone for the support. Last night, I sat in bed for maybe another hour before I felt like I was about to doze off. I decided to strap the machine on again and managed to pass out quite easily this time. Almost 4 hours later I woke up, and the pressure was reading only 7 which reassured me since it wasn’t pumping 16 anymore. I actually feel quite rested with that little use of the machine so maybe it’s starting to do its job. I hope so.

I unfortunately was not told anything about the machine and had to research it myself. From my understanding, it looks like the ‘ramp’ setting is set to start at 5 for like 30-40 minutes then gradually increase. 16 appears to be the maximum possible pressure of the device. I wonder if there’s a way to use the ramp feature but ask my therapist if they can lock the max pressure to something lower like 10 or something. I tried to put it back on this morning at 6am since I only used it in total for maybe 5 hours last night (1 of which while fully awake at the start), but being very awake has made me fear it’s just gonna do the whole 16 pressure thing again.

[Pugsy]

You can limit the max yourself but if you do that you risk untreated apneas happening.
Or you can ask your equipment supplier to change the settings but it is something you can do yourself. It's just a matter of a little combination of button pushing to get into the menu are where settings can be changed.
You don't say which machine you are using...so figure it out and go here and request the clinical/provider manual for your machine and in that manual the instructions for how to get to the clinical setup menu area can be found.
https://www.apneaboard.com/adjust-cpap- ... tup-manual

[Julie]

The ramp is good for people who have a high starting min. pressure and find it difficult to breathe immediately at that pressure when starting up... but your pressure's low, so taking 30 mins to go to it from 4 or even 6 is a waste of time and therapy.

[Pugsy]

Here's the deal with these machines...they don't have a clue if you are awake or asleep. They only measure air flow and respond to the air flow it senses and awake breathing is very irregular when compared to asleep breathing and it can and will increase the pressure while awake to what it thinks is irregular breathing it thinks is airway obstructed related.

The idea to breathe evenly and smoothly while awake is so the machine doesn't think you are having some sort of airway obstruction it wants to try to fix with more pressure while awake. If you aren't asleep it's not sleep apnea but the machine doesn't know you aren't asleep. It's just trying to do its job which is try to hold the airway open. While awake and tossing and turning and stressing out over "fighting the machine to breathe" or whatever your breath is going to be irregular and the machine thinks "OMG airway obstruction I gotta fix it with more pressure" and a viscous little circle is created.

My suggestion...turn ramp off.
Set your minimum to 7 cm
Turn EPR on full time...and set it to 3
Max to whatever you want to try and eases your mind and later evaluate the reports to see if you spend much time at the max.
See how it feels in terms of comfort and relaxation and see if you can quit worrying about how it feels. I am betting it will feel pretty darn good and you should be fairly comfortable.

[dbebz]

I just got the results on my phone for the remainder of my night. My AHI was only 2.5 for those 4 hours or whatever it was that I was asleep on the machine so I am happy about that.

Thanks a lot everyone. I was in a really bad mood last night with all the issues but when I woke up with it on this morning I felt good and under control. I guess it’s ups and downs.

Also for those asking I have a ResMed AirSense 10 auto CPAP with nasal pillows.

[Pugsy]

When you have time please add your equipment to your profile so we can all see quickly and easily what you are using.
It helps us help you faster and more accurately.
Sounds like you probably have the ResMed AirSense 10 AutoSet....should be clearly stated on the face of your machine.
So edit your equipment profile and look down in the "R" section for that model machine. It's not up in the "A" section with all the other AirSense models.

Go to the user control panel up by your account name...then the profile tab...then edit equipment

[zonker]

Also for those asking I have a ResMed AirSense 10 auto CPAP with nasal pillows.

than you for adding your machine. as you can see, it now appears at the bottom of each post.

now, if you would be so kind, could you add your mask as well?

go here to look at what masks are available-

https://www.cpap.com/category/cpap-masks

thanks!

[zonker]

Hi welcome to the zoo.

[Miss Emerita]

Dbebz, isn't it nice that you'll never again have to use the machine for the FIRST time? Congrats on sleeping with it and getting your AHI down.

Once you take charge of your own settings, as Pugsy has suggested, I think you'll do better and better. The next step after that, if you want to really fine-tune things, would be to get the free Oscar software here:

https://www.sleepfiles.com/OSCAR/

and load the data on your SD card into the program. (If there isn't an SD card in the slot on the left side of your machine, you can buy one.) You'll get an amazing amount of information that way, and with the help of people here, you can dial your settings in to be as effective and comfortable as possible.

[dbebz]

Thanks again everyone.

After having a restful 4 hours of sleep, I woke up at 6am with the 2.5 AHI. As I’m supposed to challenge myself, I put the CPAP back on and tried to sleep despite not being that tired so I can maximize usage and get used to it.

I tossed and turned and was awake for about an hour, then fell asleep for another hour. When I woke up, the AHI for the night became 6. I guess it had to do with my breathing while awake, but I’ll still take that as a win as my AHI more than halved from the day prior.