13 months on CPAP, I am exhausted!

[DMN10]

Hello Everyone,

A friend of mine suggested that I post on your forum. I have been on CPAP therapy for 13 months now. In the beginning of the therapy, I did feel like I was making progress. I started to feel better, and aside from not being able to find the right mask, I thought I was on the right track. I found out early that my Sleep Doctor was basically worthless. She gave me the generic 5/20 settings, and I hoped for the best. My friend suggested I raise my minimum to 7 and lower my max to 15, and I ran with that for a while. His settings did help me.
 
My sleep test was a failure; I never fell asleep that night. They told me they were prescribing a machine because of my age, high blood pressure and symptoms. As well as the results of the at home ring test they gave me the week before. I will be 70 at the end of the year.

I would say about 4 months ago, everything started to go downhill, and the last few months have been bad. I lay in bed about 6 hours a night, of which I sleep maybe 2 hours at a time a couple times. I do spend a lot of time staring at the walls. I started using Oscar a few months ago and even though my numbers are generally around 1.0 to under 3.0 – I feel exhausted all day every day. It’s crazy to wake up and start yawning and continue doing that throughout the day. I dose off many times during the day, I just can’t stay asleep much the way my nights go.

My doctor thinks I am doing wonderfully, as my numbers are low. She wants me to take pills to help me fall asleep, but I don’t like the way they make me feel. My flow limitations chart looks rough most nights, I’m typically between 0.05 and 0.10. But from a few charts I have seen from other people, I am surprised how many people have 0.

I have been all over the map adjusting my machine. In the year with this ResMed Air Sense 10 Auto Set I have gone from the original auto set to CPAP mode, and as of lately, I feel like I have lost the handle. I did experiments with EPR for a bit last year and found that when I would reduce it or even turn it off, my flow limitations would get even worse. So, I have been on EPR 3 for a bit now. Trying to find a mask was a completely different nightmare. I am currently going back and forth with the Dream wear Nasal Pillow and the Bleep Eclipse. I have tried at least 10 other masks and dislike them all.

Any help or advice would be appreciated.

Here are a few recent nights with Oscar. I learned about positional apnea several months back and since than I sleep with a soft cervical collar every night. I tape my mouth most nights. (99% of the time)

   

   

   

[jdougc]

Welcome to the forum,

Are you on any medications that affect your breathing or sleep?
Do you have any health issues that  affect your breathing or sleep?

Can you post a copy of your sleep report with your personal info redacted?

Your Flow Limitations are too high.

Flow Limitation Is Associated with Excessive Daytime Sleepiness in Individuals without Moderate or Severe Obstructive Sleep Apnea.

https://pubmed.ncbi.nlm.nih.gov/38530665/

You might want to look into a bilevel to treat you flow limitations with pressure support much higher and better than EPR

[DMN10]

Hi jdougc,

Thank you for the feedback. I don't have a copy of that report. I had a hard time getting it a year ago, and it basically said nothing as I was never able to fall asleep during that test. The ring sleep test from the week before showed I had an AHI of 14. I have high blood pressure controlled with Valsartan and Amlodipine. I have Hoshimoto's and take Levothyroxine every day for that.

My friend mentioned I might be a candidate for a bilevel. My doctor told me that my numbers are so great that I don't need a different machine.  I told her I feel terrible, and I am always exhausted. She just tries to get me on sleeping pills.  If a bilevel is in my future, I will probably have to pay out of pocket. I don't think my doctor is going to help me with that.

That article seems to hit it right on the head. Every day for me is filled with daytime sleepiness.

[jdougc]

Your feeling terrible, and always exhausted is something to talk to your primary care physician or dentist, they can prescribe a different machine for you.

Look for a slightly used Bilevel ResMed AirCurve 10. 
I bought one just last winter on HateBook Marketplace.
I am still testing and usually getting great results with my flow limitations getting treated.
Other factors are fragmenting my sleep, not related to anything cpap machines can deal with.

The Hoshimoto's can contribute to you drowsiness.
Levothyroxine can contribute to your tiredness and feeling nervous or irritable, sleep problems (insomnia).
Have you talked to you doctor about this?

A low dose of melatonin could help you sleep, OTC no script needed.

I hope you get some good rest.

[DMN10]

Thanks for your advice jdougc, I appreciate your help. I will keep an eye out for a used ASV, hoping to get lucky with one. I do have some melatonin on hand, I will give it another shot. Earlier in the year, I didn't feel any effect. 

I had another rough night last night. I think I need to come off CPAP mode and go back to the Autoset. I'm not sure which settings to try as everything has been off lately, maybe a 9 min 11 max. I'm amazed at how off my therapy has become.

I spoke to my primary doctor at the end of 2024 during my wellness exam. I hoped she would prescribe a machine for me. She wouldn't and asked me to see one of her referral doctors. I did some research on them, and the feedback was so negative I didn't pursue it. I see my dentist every 6 months for a cleaning, next visit I will bounce it off of him and see what happens. 

My charts used to look decent in the past, but as of late they all look very discouraging. Here is last night's Oscar. I am in a bad rut lately with taking a nap every day, as I am so tired. I lay down for an hour this morning, and that flow limitations graph looks ridiculous.

   

[jdougc]

I don't think you need the expensive ASV machine, you want the AirCurve 10 Bilevel, the ASV is to treat Central Apneas.
Since your problem is the flow limitations that are not being treated with EPR's limited range of 3cm, you mgiht do well with the higher pressure support of the AirCurve 10. I am.

[DMN10]

Ok, I will keep an eye out for one of those. Speaking of Centrals, I have always gotten a lot of those on Oscar, but I really don't think they are the real thing. I never wake up gasping for air like I had forgotten to breathe. Do I understand that correctly? Centrals the way Resmed is flagging them are 10 seconds or greater when I stop breathing? No obstruction, just not breathing? I have never remembered an incident like that before. My friend suggested they were false flags.

[ejbpesca]

Your OSCAR reports look good to me.  I rarely get such good AHI scores.

You can zoom in on a CA event to see if breathing stopped.  Yes, they are flagged if the machine does not sense OA, but breathing stopped.  

CAs can be fickle and I have read a few can be normal.

[super7pilot]

As Doug said. You need to talk to your regular doc. They can prescribe a machine. It doesn't have to come from a "sleep Dr." And as said. The ASV is only useful if you were diagnosed by a brainwave monitor as having a certain amount of Central Apnea's.

CA's are always a tricky issue. 

Central Apnea can be serious. However, they can only be verified as a real Central Apnea via brain wave electrodes in a sleep lab. But Central Apnea's are only an issue if you have a certain amount of them. In my study I had 2 Central Apnea's, 3 Obstructive Apnea's and 101 Hypopnea's.  So the result was that my Centrals were of little medical significance.

Clear Airway (CA) events are just a name used by Resmed when the machine detects no breathing and sends a series of air pulses to the mask. If it sees that the air doesn't have a reflective wave (an obstructive apnea will create a reflective wave) it knows the airway is clear. So it flags it as a Clear Airway event and folks IMMEDIATELY assume it's a Central Apnea because of the CA initials ResMed decided to use.

The issue is that our little bedside air compressors have no idea if the Clear Airway was a true Central Apnea or a simple low Co2 event from breathing deeply or hyperventilating.

Here is where OSCAR can be very useful, but only to a point. OSCAR is not a medical diagnostic tool. However, If one zooms in on the "flow Rate" waveform at the flagged CA and sees that they were breathing normally and then took a big ole deep breath then stopped breathing, then resumed normal breathing. That was very likely a low Co2 event.

Conversely, If you were breathing normally and stopped breathing "without" taking a deep breath and then took a bigger breath when you resumed breathing. That is more likely a real Central Apnea. But one must understand that a true Central Apnea can only be identified via brainwave monitoring. 

CA's also show up quite often when our brain switches from awake breathing to sleep breathing. We call this sleep wake junk and is simply a sloppy hand off of breathing functions.   

CA's are a scary but fascinating subject.

[DMN10]

Thank you [b]ejbpesca and super7pilot for the great feedback. I didn't know that you could see if you stopped breathing on Oscar. I have been curious since I learned I was having central apneas, I don't feel like I stop breathing. Thank you for giving me a better understanding of what I am actually doing. [/b]

[b]My sleep sessions have been so short lately, a friend suggested I try CBD since melatonin wasn't working for me. The last 3 days I have taken a micro dose (1/4 of the suggested dropper dose) and I think it may be working.[/b]

[b]Here are the last 3 days of Oscar, thanks again for the help everyone![/b]

June 19
   

June 20
   

June 21