I failed at CPAP and want to retry it

[sammy.atiko]

2 years ago, I was diagnosed with OSA (16.7 AHI, 32.7 RDI). I did an in-lab titration study and was prescribed CPAP 7 cmH20. I got an AirSense 10 Auto and adjusted relatively quickly to wearing it for the entire night. That said, I felt significantly worse on it and tried to work closely with my doctor to resolve the issues, but he said the data showed no leaks, a very low AHI (<1), and that I was wearing it every night for at least 8 hours. He said I just needed to keep wearing it because it was working. But I was feeling so much worse that I was becoming really depressed so I decided to stop using it.

Obviously, the issues that led me to explore CPAP are still issues (debilitating fatigue, etc) so I want to give it another shot and would love all of your guidance.

If it's helpful, if I remember correctly, the settings were previously set at (though I think I may have gone up to 12/9):
Max Pressure: 10
Min Pressure: 7
Starting Pressure: 4
Ramp: On
EPR: 2, on ramp only
Humidity: Auto

My big questions:

1) Any idea what went wrong the first time around? Why would someone feel even worse on it? Was it expiratory pressure intolerance? Was it not properly addressing flow limitations / normalizing airflow? Something else that wasn't allowing my brain to sleep? It kind of felt like I was partially awake all night. I would have assumed they would have addressed these in the titration study, but maybe not?

2) What next steps would you take if you were me? Is it optimal to have another in-lab titration study? If so, how does one identify the best lab to do this since having the right lab technician seems critical. If it's not needed, can I identify the right pressures by just using the data on my PAP?

3) If we remove money from the equation, what is the optimal PAP appliance to start with? It seems there is some debate here about whether APAP, BIPAP, or ASV is optimal to start with.

Thanks in advance - this is an amazing resource!

[LSAT]

The machine you are showing in your profile is not the AirSense 10 Auto that you are referring to in your post...it is the AirStart. The Airsense 10 Auto is a top of the line machine that would be appropriate for 70-80% of users. The ASV machine is for people diagnosed with Central Apnea. If you are looking for opinions, download the Oscar software and post some charts showing your nightly data. https://www.sleepfiles.com/OSCAR/

[khauser]

You'll find the airsense 10 conveniently under R for Resmed, because what's life without a little challenge?

[sammy.atiko]

Ah, yes, I have the AirSense 10 Auto. Just updated it. Thanks!

[zonker]

2 years ago, I was diagnosed with OSA (16.7 AHI, 32.7 RDI). I did an in-lab titration study and was prescribed CPAP 7 cmH20. I got an AirSense 10 Auto and adjusted relatively quickly to wearing it for the entire night. That said, I felt significantly worse on it and tried to work closely with my doctor to resolve the issues, but he said the data showed no leaks, a very low AHI (<1), and that I was wearing it every night for at least 8 hours. He said I just needed to keep wearing it because it was working. But I was feeling so much worse that I was becoming really depressed so I decided to stop using it.

Obviously, the issues that led me to explore CPAP are still issues (debilitating fatigue, etc) so I want to give it another shot and would love all of your guidance.

If it's helpful, if I remember correctly, the settings were previously set at (though I think I may have gone up to 12/9):
Max Pressure: 10
Min Pressure: 7
Starting Pressure: 4
Ramp: On
EPR: 2, on ramp only
Humidity: Auto

My big questions:

1) Any idea what went wrong the first time around? Why would someone feel even worse on it? Was it expiratory pressure intolerance? Was it not properly addressing flow limitations / normalizing airflow? Something else that wasn't allowing my brain to sleep? It kind of felt like I was partially awake all night. I would have assumed they would have addressed these in the titration study, but maybe not?

2) What next steps would you take if you were me? Is it optimal to have another in-lab titration study? If so, how does one identify the best lab to do this since having the right lab technician seems critical. If it's not needed, can I identify the right pressures by just using the data on my PAP?

3) If we remove money from the equation, what is the optimal PAP appliance to start with? It seems there is some debate here about whether APAP, BIPAP, or ASV is optimal to start with.

Thanks in advance - this is an amazing resource!

welcome to the zoo!there's a lot there to comment upon. but, please do as lsat recommends and download the free tracking software, oscar. note: this won't run on a phone or tablet. MUST have a laptop or better AND have an sd card slot.

you have bumped your head against what so many of us have before. the doctor did not give you good treatment. a lot of them simply do not. not saying every doctor treating sleep apnea is useless. just saying most are.

you don't need to go back for a titration if you don't want to. once you get the oscar software and post some charts, the experts here can help you dial it in and optimize your treatments.

please see the link in my sig below, the one for newbies. this will help you get started with oscar . it will show you how to post charts here. and i mean RIGHT HERE in the very thread you've started.

with the advice from the folk here, we will correct your "mistakes" from the first time around and get you going.

the machine you have is perfectly suited for your needs. really no need to look elsewhere.

you can do this.

we can help.

good luck!!

[Pugsy]

We really have no way to know what went wrong in the past. Not enough information and really hard to pin point problems without more specific complaints.
Can you lay a finger on what made you think things were "worse"? Did you experience a lot of wake ups or have mask fit or comfort issues or leaks or what? Were you just not comfortable with the mask and machine and not able to sleep with it?

Now if the old data is still on the SD card we could maybe look at it using the software to see if we could spot anything unusual or might have been a problem.

Oh...one other question....do you take any medications of any kind? If so, what?

My suggestion...can't do much about the past so start fresh and we try to address any issues that come up now but if you still have the old data from a couple of years ago...we can look at it and see if anything stands out.

[sammy.atiko]

you don't need to go back for a titration if you don't want to. once you get the oscar software and post some charts, the experts here can help you dial it in and optimize your treatments.

please see the link in my sig below, the one for newbies. this will help you get started with oscar . it will show you how to post charts here. and i mean RIGHT HERE in the very thread you've started.

with the advice from the folk here, we will correct your "mistakes" from the first time around and get you going.

the machine you have is perfectly suited for your needs. really no need to look elsewhere.

you can do this.

we can help.

Thanks for the warm welcome!

How many nights of data should I collect before posting?

We really have no way to know what went wrong in the past. Not enough information and really hard to pin point problems without more specific complaints.
Can you lay a finger on what made you think things were "worse"? Did you experience a lot of wake ups or have mask fit or comfort issues or leaks or what? Were you just not comfortable with the mask and machine and not able to sleep with it?

The specific complaint was I was way more tired during the day after stating PAP therapy. Felt in even more of a haze and just wanted to sleep all day. So pretty much the symptoms I have now but worse. Not sure if that's detailed enough.

According to the data, I wasn't having any leaks and I wouldn't say I was comfortable (hard to say what normal should feel like when you start having a mask blowing air into your nose all night), but I was wearing it for over 8 hours every night for over 2 months so I figured it must not have been that bad. My doctor said it could take awhile to get used to and that if I was wearing it the whole night and not having leaks, I should just keep doing it.

Oh...one other question....do you take any medications of any kind? If so, what?

No medications of any kind.

My suggestion...can't do much about the past so start fresh and we try to address any issues that come up now but if you still have the old data from a couple of years ago...we can look at it and see if anything stands out.

Agree with starting fresh. I should have the old data since it's the same SD card, but I might as well just start again and share how I'm doing now as maybe things changed in terms of my pressure requirements over the past few years.

Should I just use the settings my doctor previously set for me? Or are their default settings you typically recommend starting with when doing self-titration?

Thanks!

[Pugsy]

Go ahead and use those old settings for one night. That way we can get an idea what was going on back before.
If we go changing things then we don't know what might have caused a change.
This would give us an idea of what you were experiencing 2 years go.

So for 1 night...use the old settings just like you used them in the past.
Then post the detailed report and we won't need all those graphs...look here for the format
viewtopic/t158560/How-to-post-images-for-review.html

Will probably change things after the one night but I would like to see what it was like back then and these settings were used back then so should have similar results.

Do let us know if you have a lot of trouble actually sleeping though. It can impact the data evaluation if you didn't sleep soundly for the most part.

[zonker]

Thanks for the warm welcome!

How many nights of data should I collect before posting?

you're welcome for the welcome!


you are in pugsy's capable hands and i will fade into the background to shoot spitballs every now and then.

[sammy.atiko]

An update: I tried wearing it for each of the past 2 nights, but wasn't really able to fall asleep with it on. I'd fall in and out of consciousness but only made it 30-60 minutes before deciding to take it off so I could get some sleep.

Since I didn't really sleep, I assume it's not useful to post my data but let me know if that's not the case.

My current strategy is to just keep putting it on every night and trying to sleep as much as possible with it on. It is ever recommended to try using OTC sleeping aids to adjust to sleeping with it? Any other tips to be able to actually sleep?

I don't really find having the mask on that uncomfortable (though it does feel weird when you was to move or turn); it's more the air which makes me start to think more consciously about my breathing and creates some anxiety (sometimes I start thinking about it and then I feel like I'm not getting a full breath in).

One question: I'm using the Bleep Mask. It's normal to hear / feel some air coming out from the vent right? I was worried it was leaking. My machine said I had no leaks though - is that reliable?

Thanks!

[Miss Emerita]

Let me add my welcome, Sammy. Yes, there should be air coming out of the vents. That's what enables you to blow off CO2. The amount of "intentional leakage" is calculated so that you will still be getting the proper therapeutic pressure.

I'd recommend that for a couple of days, you stop trying to use the machine at night and instead use it in the day or evening. Set it up somewhere outside your bedroom where you can read, watch TV, use your devices, or do something else diverting. This will help speed up the process of adaptation, without creating a lot of negative associations between night-time use and wakefulness.

If you really didn't sleep, then your Oscar charts wouldn't contain information that could help people help you dial in your settings. As soon as you sleep for even an hour or so with the machine on, please post a chart.

Finally, I would suggest a few changes to your settings, aimed at making the experience more comfortable for you. Turn off the ramp, keep your minimum at 7, and increase the EPR to 3. With luck, this will give you a somewhat more natural feel to your breathing. If it just makes you more uncomfortable, change the settings back.

[Pugsy]

Yes, it's normal to feel and hear the Bleep mask venting air. I use the Bleep mask myself. You hear it mainly when it is bouncing off something. Now there is a way to diffuse that venting. More on that in a bit.

Yes, it's okay to take an OTC sleep aid as long as you don't have any medical conditions that medications like Benadryl are a problem with with. Most of the time the sleepy part of those OTC sleep aids is diphenhydramine which is Benadryl or Doxylamine or similar products.
Usually some sort of antihistamine because most antihistamines make us drowsy. That's the sleep aid part of whatever brand it is.
https://www.mayoclinic.org/healthy-life ... t-20047860

Me...I would just get plain old Benadryl and take a couple of 25 mg tablets. Something like the Aleve PM stuff...I would have a problem with the pain reducing part the ibuprofen stuff because it upsets my stomach too much. Plus plain diphendramine is cheaper.

The vent noise thing...there is a way to diffuse it and make it less annoying. If you find that the sound is a factor in keeping you awake you can try positioning the hose so it doesn't bounce off anything and that might be enough to make it okay but if not...you can take a filter from the cpap machine and fix it so it's up next to the vent holes and it diffuses the vented air so it's not so annoying.
There is also a new diffuser available or will be available shortly for the Bleep. I will check to see if it is available yet as a stand alone product. It is available with a new more flexible and longer hose from here.
https://makesleepeasy.com/collections/p ... -dreamport

I can't find just the diffuser all by itself at the moment but give me a bit of time. Try the filter idea first...we gotta get you sleeping first.

Here's a picture of a filter that I put up against the vent holes. It's a sad picture I know...but you get the idea. Cut a little X in the filter and slide it up over the area where the hose attaches and let it sit next to the vent holes.

bleepdiffuser.JPG

[sammy.atiko]

I'd recommend that for a couple of days, you stop trying to use the machine at night and instead use it in the day or evening. Set it up somewhere outside your bedroom where you can read, watch TV, use your devices, or do something else diverting. This will help speed up the process of adaptation, without creating a lot of negative associations between night-time use and wakefulness.

Great idea. I'm using it now. It's definitely a little weird to use while awake because I notice overthinking how I'm breathing and trying to breathe out a lot for fear I'm not breathing enough.

Me...I would just get plain old Benadryl and take a couple of 25 mg tablets. Something like the Aleve PM stuff...I would have a problem with the pain reducing part the ibuprofen stuff because it upsets my stomach too much. Plus plain diphendramine is cheaper.

Thanks. I'll try this.

Here's a picture of a filter that I put up against the vent holes. It's a sad picture I know...but you get the idea. Cut a little X in the filter and slide it up over the area where the hose attaches and let it sit next to the vent holes.

Such an awesome idea. Will try this tonight.

One additional question: I've been mouth-taping for the last 2 years (because it stopped me from waking up with a dry throat) so I know I'm able to breathe through my nose. That said, when I breathe in it makes some noise / i feel a slight resistance and I've had an ENT tell me that my nasal airway is very narrow and I have a slight deviated septum. Could this be causing some of my challenges? Or if I'm able to breathe well enough through my nose to tape my mouth at night (or even run with my mouth closed), than it's likely not the key issue?

[Pugsy]

If you can comfortably breathe through your nose during the day with your mouth shut then I can't imagine that at night it will be any different unless you are experiencing nasal congestion only at night for some reason or other.

[Miss Emerita]

"It's definitely a little weird to use while awake because I notice overthinking how I'm breathing and trying to breathe out a lot for fear I'm not breathing enough." Treat yourself to your favorite book, TV show, or game so you can truly distract yourself. -- But even if you don't, I suspect the overthinking and overcompensating will subside as the whole thing becomes more familiar.

Keep us posted!