outside influences on our therapy

[super7pilot]

In the time I have been in therapy and on this forum. I have seen a common thread. And that is so many folks look at PAP therapy as the one magic bullet that will make them whole again. And when one doesn't get the results they were expecting. The pap machine is returned to the dme or gets tossed to the back of the closet.
 
In reality, we should be also looking to a holistic approach to our therapy. And by holistic, I do not mean naturopathy type stuff. Just a whole body approach to sleep and what can effect it.

In my case. My VA doc said that most people who are on three BP meds to control their BP, are very likely to have sleep apnea. Yep! I had apnea. I was put on pap in October 2024 and from the start my AHI was extremely low. And yet I felt like garbage. While it did improve a bit after my body got used to the pressurized breathing and fine tuning my settings. I was still feeling un-rested and my BP was unchanged. 

So for months I was wondering why is it that if my AHI was low, why am I feeling just as unrested as prior to starting pap. It wasn't until I realized via the OSCAR charts and folks on the forum that I was having sleep disruptions independent from any apnea events. And that's when it hit me that it wasn't an issue with my pap therapy. It was a problem for outside my sleep apnea therapy. 

In my case my sleep disruptions were mostly from my dry eye condition. And once I started to get that under control about 1.5 months ago, I suddenly started sleeping through the night and I felt so much better. And with the more restful sleep. My BP came down from 140's/90's to 120's/70's and that's after dropping one of the three BP meds I was on. 

Bottomline? look beyond the machine and it's settings. By all means. One should adjust the settings for the best AHI results and to feel better. But there can be and often are things outside ones therapy that effect said therapy. It could be anxiety/attitude, meds and most often physical conditions that interrupt sleep that are not apnea related.

[Nightynite]

I think the most common problem is a majority of people are put on 4-20 pressure, they feel air starved and take the mask off in order to sleep. They call there DR. for help and it takes another 2 weeks to see the Dr. then the patient gets frustrated and ends up determining they sleep better without the cpap.
Many people are scared to death to adjust there on machines simply because the industry teaches us that it is dangerous to do so. You can’t get an appointment and you can’t adjust your pressure = failure.

[2farfromshore]

I think the most common problem is a majority of people are put on 4-20 pressure, they feel air starved and take the mask off in order to sleep. They call there DR. for help and it takes another 2 weeks to see the Dr. then the patient gets frustrated and ends up determining they sleep better without the cpap.
Many people are scared to death to adjust there on machines simply because the industry teaches us that it is dangerous to do so.   You can’t get an appointment and you can’t adjust your pressure = failure.

I began therapy 3 months ago, and what you say is absolutely true. Case in point: I'm still waiting for a sleep study. The way it works here is you get referred to an ENT and/or a sleep specialist. The sleep specialist here is part of a hospital system with a sleep lab that's actually run by a 3rd party in the hospital. Then you get an at-home test which buys you entry to another appointment with the sleep specialist 3 months later. All of my appointments for this were 3 months apart. 

After 3 months of pap compliance, which is apparently incredibly important for insurance purposes, and no great improvement, you get approved to interface with the sleep center where, if you can get a callback, wait 3 to 6 months for the in-lab study. 

Meanwhile, the specialist downloads your data once a month and might fiddle with your pressure remotely with 4g telemetry. And then there's the pap machine provider -- Lincare, in my case. They remove the SD cards before they give you the machine and they don't put it in the bag. Then you think, why does ResMed claim that only their $18 2gig SD card will work when an SD card is pretty much an SD card. As always, follow the money.

[super7pilot]

Nightynite, That is only the beginning. Even once a person gets beyond the 4-20. They still think that pap treatment is 100% the solution to their sleep issues. And that is not the case. Sure, some strap up are are golden. But take a look on this forum for very long and one will see loads of people who are adjusting their settings and get that low AHI. but just don't get the "restful" results they thought they would.

I was one of them. Sub 1 AHI, air pressure wasn't up and down. Yet I felt like poo.

[Sleeprider]

Bravo Super7pilot! I have made countless posts here after endless optimizing of member's therapy, that "once the therapy is optimized, the problem likely arises outside of therapy or settings". So many external factors can result in poor sleep quality, and yet the first thing most CPAP users will point to for unsatisfactory sleep and fatigue is their PAP. I'm very glad to see this thread and congrats on the well-deserved Advisory Member promotion.

[jdougc]

Super7pilot,
You are so right!
I received so much help here to get a better machine and to optimize my settings, but still battle sleeping well.
I need a few more months of exercises and stretches and maybe a few shots to get there.
But I would have been in much worse place sleep wise without this forum, so thanks again.

[2farfromshore]

Sleep can be a tangled mess for some of us -- existential stress, grief, meds (prescribed or illicit), depression/anxiety, exercise addiction, generally unhealthy living, the list is long. In terms of Apnea, however, if you're diagnosed with a severe level I would hazard a guess that those folks fortunate enough to obtain a solution are going to feel a whole lot better. About a month after starting CPAP I noticed I felt better. Less headaches, significantly less arrhythmia, more energy, etc. Now that I'm going into month 4, I've acclimated to that level of improvement and realize I've got a ways to go with this in order to feel good most of the time. I now realize this is a process that may well be a work in progress until till my last breath.