Anthony.Casella - Therapy Thread

[Anthony.Casella]

Hey everyone. I was directed here from Tiktok by MindbodyMike. He suggested I come here to share and maybe get some helpful ideas. 

About eight years ago I was diagnosed with sleep apnea. I don’t remember what my a H I was, but I know that it was so high I literally couldn’t exhale. Now the doctors told me that it just needed to get used to the machine, which I knew that ahead of time. But I literally could not exhale there was so much pressure coming in. 

So every single night for three months I try to fall asleep with that mask on, multiple masks actually. I managed to fall asleep just once, but I woke up at 6 AM, and just cannot go back to sleep. So for 90 days I literally only fell asleep with it once. And I tried for up to three hours a night to fall asleep. And I just couldn’t. So eventually the machine was recalled from my possession, even after explaining all this to the doctor's and insurance. 

Fast forward to the last 4 years of my life, I will wake up with excessive drowsiness everyday, mornings are a nightmare. Pre-Covid I would play ice hockey around 8am on Thursdays, getting up at 7 AM for that was grueling. And since then I’m even struggling now to get up before 10am, and even then I’m still drowsy. 

I’m reaching out because even at 39 years old, I just finally started college(caretaker for 15 years) I have class starting at 1:30 in the afternoon. And some people find that easy to deal with, but getting up early in the morning is a process these days. The excessive daytime drowsiness kicks in, I find myself whether this be related to apnea or not sometimes yawning upwards of 20 or 30 times an hour, that could potentially be my ADHD. But this is why I am discussing this because I’d like to know if anyone else has this excessive yawning issue, and what do some of you do to combat your excessive daytime drowsiness?
 
So in closing to this book I just wrote, I do have another sleep study test coming up on the 17th. And it worries me because I know that I’ll be prescribed another machine, but I don’t know how to fall asleep. I’m worried the pressure will be to high again, and I’m also worried that I just won’t be able to find a comfortable mask, whether it be face, nose, or a different kind. 

Thanks everyone if there’s any misspelling I apologize, I was using Siri for dictation. 

Tony!

[Sleeprider]

Tony, the main side-effect of sleep disordered breathing (SDB) is fatigue and drowsiness resulting from the continuous sleep disruption throughout the night. The source of SDB can be flow limitation leading to respiratory effort related arousal (RERA), hypopnea or obstructive apnea. Some people also experience a cessation of breathing effort, or central sleep apnea. The study should help to identify the nature of your sleep disordered breathing, and many studies result in a determination of obstructive sleep apnea and a prescription for CPAP. Given your past intolerance to CPAP, you should discuss your concerns with the doctor. Things that can help are, use of the Resmed Airsense 10 or 11 machine that has a very good exhale pressure relief feature to provide lower pressure on exhale, and maybe consider a nasal pillows mask like the Resmed Airfit P10 which is smaller, lighter and easy to fit, provided you can avoid loss of air pressure through the mouth.

You are older now and it would serve you well not to be too anxious over your past experience. There is a lot that this forum can do to help you to understand and mitigate any issues that arise as you adapt to the new therapy. We can also see issues that frequently arise, like when someone has been issued the wrong therapy for their condition. In your case, the problem of being unable to breathe against pressure can mean you have a high leak rate, or are experiencing central apnea. It happens fairly often. Rather than worrying about the past problems, look at this as an opportunity to better understand what is happening and doing something positive to succeed. You apparently need to do something to resolve your daytime drowsiness, so let's take it one step at a time and with a better understanding and some coaching, you will probably have an easier time.

[Anthony.Casella]

Thank you for your response, I appreciate that. I do have the sleep study coming up again on the 27th and as much as I would hope to get a specific machine I would be at the mercy of my insurance. Hopefully it is a better machine, I know the technology has Improved. 

I have heard of people getting some relief from their daytime drowsiness, but I have never really found a way to cope with it. 

Thank you again 
Tony.

[Sleeprider]

Sometimes if you express a preference, the machine choice can be accommodated. There are a lot of Chinese machines entering our market due the shortage caused by the Philips recall, and if you can find a machine that provides full therapy data, then this can provide very positive feedback and make therapy success more likely. As I said, request the Resmed Airsense 10 or 11 Autoset and see where that goes.

[Anthony.Casella]

Although I knew I had sleep apnea, I didn’t realize it was this bad, during my sleep study they went from diagnosing me, to two hours later to treating me. My AHI is 140 times per hour, that was terrifying, my pulmonologist said he’s never seen a case so bad in his 15 year career. So CPAP was immediately started, I was put on the Resmed airsense 10, on a therapeutic BiPAP level of 18/13. 
My machine ramps up from a comfortable level starting at 4.5, I have the ramp set 45 minutes. After three days of use, the doctor said that my AHI is gone down to 1. From 140 to 1, I guess he was actually shocked by that. But I still feel as if the pressure is too high, I have trouble sleeping because of the mask is constantly leaking no matter how tight it is. They’re supposed to be comfortable, but they’re not supposed to be so tight that they hurt.
I feel as if I’m still not getting any rest because I’m constantly waking up with small pressure leaks here and there that are apparently acceptable, but they still wake me up multiple times during the night. On top of that, I wake up with the worst stomach pain because of the excessive amount of gas. Then it takes me a good 45 minutes in the morning to get rid of said gas before I can go out or go anywhere because it’s quite embarrassing. 
I know my machine has a clinical menu that I can get into to change settings, but I cannot change those settings because the machine operates with a cellular module inside that gives telemetry to the doctors and my insurance company. If I change those settings, I will lose the machine. I have asked the doctor to lower the pressure, and they are currently looking into this. 
So my question in the meantime is, how do you all prevent the excessive gas? And how do you sleep comfortably with a mask that’s constantly leaking while laying on your side? 
The mask I am using is a full face mask that goes over my nose and above my chin. I was given a second mask that cradles my nose like a pillow. But there’s no way that can be used with such high pressures. 

Thanks, 
Tony.

[KeepSmiling]

Hi Tony,

[Resmed airsense 10 , on a therapeutic BiPAP level of 18/13] Resmed bi-level is the AirCurve line, Airsense is the cpap line.

Who would take it away? [ If I change those settings, I will lose the machine. I have asked the doctor to lower the pressure, and they are currently looking into this.]

Aerophagia, the air swallowing, I do not have any hints. After many years on machines, changing machines and pressures I got some.

Link has some suggestions: http://www.apneaboard.com/wiki/index.php/Aerophagia

I cant sleep with a leaky mask unless very tired, what mask do you have. I wipe the mask and face. (I have put cream on it.) Individual face shape/size depends a lot on mask fit and comfort.

[Melman]

Sorry to learn you’re having problems with mask fit and aerophagia. It is good that your AHI has been brought down. Many have problems finding the right mask and the proper size. It should not be necessary to tighten the mask to the point that it’s painful to eliminate leaks. Actually a looser fit allowing the cushion to inflate and conform to your face is better. See the link to the mask primer below for helpful information.
We can best help you if we can see data from your machine. I suggest you download the free OSCAR software from the link at the top of the screen and post daily charts here. See the links below for how to organize and post data. You will need an SD card no larger than 32GB for your machine and a USB card reader foryour PC if it doesn’t have a slot. There are people here with significant experience and expertise who will be happy to advise you.

[Sleeprider]

Tony, apnea severity has no direct correlation to your pressure needs. I'd like to help you find more comfortable and effective pressures, but I really need a look at exactly how your machine is currently setup and how you are responding to it. The best approach is going to be if you post a Daily Details chart from OSCAR. Links in my signature go to tutorials to help you learn how to format and post charts. So download the free OSCAR program, and we can really get started.

Part of the reason we need the charts is that you indicate in your post that you were put on the BiPAP level of 18/13, but you also show you are using an Airsense 10 CPAP. That is contradictory and leaves me with no real idea of your settings. Get the software. Post a chart.