15 years unrefreshed sleep/also, BiPAP rental?

[DigDugSlug]

I was diagnosed with OSA about 15 or 16 years ago. Despite using the CPAP every night, I never wake up feeling refreshed. I’ve seen 4 or 5 different sleep doctors and they always say “I don’t know what else to tell you.”

This has pretty much ruined my life. I've suffered immensely and it's affected every aspect of my life and essentially prevented me from reaching my professional, personal and romantic goals.
It’s affected my memory, my cognitive abilities, my mood, you know all the rest. I’ve stopped working because I started to make too many mistakes.

As a last ditch effort, since none of the doctors I’ve seen in CA and OR over the past 15 years have been able to help, I made an appointment at Stanford with Dr. Robinson (paying out of pocket.) I had one office visit with her 2 weeks ago and she wrote a prescription for an auto bilevel device. She seemed to think that would help. None of my other docs in the past suggested this.

I’m on medicaid in Oregon and was told today that they’ve rejected the Rx because there is no evidence that the CPAP isn’t effective. Incidentally, if you were go solely by the data from my machine, it looks like it’s helping. But it isn’t. I routinely get 98 to 100 point MyAir score with 0.2 to 1.3 events per hour. But I still feel wrecked every day when I wake up. Sleep drunk, groggy, disoriented, etc.

So now I have 2 questions:

Since purchasing a new AirCurve 10 VAuto BiLevel Machine costs almost $1800, do you know if I can rent a machine? I’d hate to pay $1800 only to find out that it doesn’t help my fatigue.

If I do rent one or end up buying the machine, can I set it up myself with the information Dr. Robinson wrote on my Rx? She gave me a copy and it says:
Auto Bilevel with IPAP max 20, EPAP min 12, PS of 4cm water pressure.

Finally, if anyone has any ideas or recognizes something that could help me, I’d be very appreciative.

p.s. I just read on another thread that Effexor could contribute to lack of REM sleep. I have depression of course and have been on a variety of SSRIs over the years. But no one mentioned that this could be the problem before.

[zoocrewphoto]

Have you tried using sleepyhead and looking at the full data, not just the basic data from Myair?

What are your pressure settings?

Do you feel like you wake up a lot?

Are you bothered by pressure changes? Leaks? something else?

With more info, we may be able to help you improve your therapy and get some success. Many doctors only look at compliance and don't really look at the full data and see what can be done to make improvements.

[nicholasjh1]

I can say even though my settings were 7-16 cm pressure and my Ahi low (below 1) changing pressure to 11-16 made a huge difference in my quality of sleep... I think that even though my machine was eliminating my over 10 second OSA's there were enough under 10, and the very act of ramping to eliminate the apnea's hurt my sleep cycle. and now detected Ahi's are actually at 0. In addition I can say that finding the right mask, for whatever reason made a huge difference. Many of my failed masked periodically leaked into my eyes, causing arousal I'm sure.

[WearyOne]

I was diagnosed with OSA about 15 or 16 years ago. Despite using the CPAP every night, I never wake up feeling refreshed. I’ve seen 4 or 5 different sleep doctors and they always say “I don’t know what else to tell you.”

This has pretty much ruined my life. I've suffered immensely and it's affected every aspect of my life and essentially prevented me from reaching my professional, personal and romantic goals.
It’s affected my memory, my cognitive abilities, my mood, you know all the rest. I’ve stopped working because I started to make too many mistakes.

As a last ditch effort, since none of the doctors I’ve seen in CA and OR over the past 15 years have been able to help, I made an appointment at Stanford with Dr. Robinson (paying out of pocket.) I had one office visit with her 2 weeks ago and she wrote a prescription for an auto bilevel device. She seemed to think that would help. None of my other docs in the past suggested this.

I’m on medicaid in Oregon and was told today that they’ve rejected the Rx because there is no evidence that the CPAP isn’t effective. Incidentally, if you were go solely by the data from my machine, it looks like it’s helping. But it isn’t. I routinely get 98 to 100 point MyAir score with 0.2 to 1.3 events per hour. But I still feel wrecked every day when I wake up. Sleep drunk, groggy, disoriented, etc.

So now I have 2 questions:

Since purchasing a new AirCurve 10 VAuto BiLevel Machine costs almost $1800, do you know if I can rent a machine? I’d hate to pay $1800 only to find out that it doesn’t help my fatigue.

If I do rent one or end up buying the machine, can I set it up myself with the information Dr. Robinson wrote on my Rx? She gave me a copy and it says:
Auto Bilevel with IPAP max 20, EPAP min 12, PS of 4cm water pressure.

Finally, if anyone has any ideas or recognizes something that could help me, I’d be very appreciative.

p.s. I just read on another thread that Effexor could contribute to lack of REM sleep. I have depression of course and have been on a variety of SSRIs over the years. But no one mentioned that this could be the problem before.

I know how you feel, believe me. And it sure isn't any fun.

Did the doctor give you a reason why she thought a bilevel machine might help? Ever since they put me on one in the hospital a couple of years ago I've wondered about them. Recovery from surgery wasn't going well as they couldn't keep me awake, and when I wasn't awake I wasn't breathing. CPAP wasn't helping. Once they decided to try a bipap/bilevel, things started improving. I stayed overnight and stayed on that machine while I was there.

I understand the depression issue. I'm not on anything right now, and fortunately haven't been for a long time, and never tried Effexor, but I've been on a couple of different SSRIs over the years.

I don't really have any suggestions, as I'm going through the search myself. Just wanted to jump in and say I sure understand what you're going through.

[DigDugSlug]

I tried using Sleepyhead a number of years ago but couldn't figure out how to get my data imported, but you guys inspired me. I went out and bought a card reader and imported my data.

I'm still figuring out how to best read the stats, but last night it says:

AHI: 1.75
Large leak: 0.19%
Obstructive: 1.25
Hypopnea: 0.50
RERA: 0.45

Pressure: min 6; med 12.62; 95% 14.50 max 15

I don't really know what any of this means. I'm trying to read the guide on the wiki, but it's pretty hard for me to concentrate and absorb it all.

Please let me know if there is other data I should provide.

I don't know why the doctor suggested a BiPAP, but she just said that she thinks it will help.

I had a physical about 3 years ago with full labs, thyroid levels were normal and the I think the only thing noticeable was low testosterone. I was on Androgel for a while but didn't notice any changes so they doc told me I could discontinue usage.

Here's a screengrab of the statistics. Couldn't figure out how to post it as an image, sorry.
https://www.dropbox.com/s/t9bqjvju7jgj1 ... 2.png?dl=0

[kteague]

Personally. I'd wait just a bit before getting a bipap until your machine data can be looked at in detail. It may be that a tweak of your current settings could help. Do you have any issues with restless legs or limb movements? Is your need for the meds to the point you must have them for your own safety or well being? Just wishing you could find a baseline and go from there in ruling things out. Even if you can't go off the meds, is there any room for lowering the dose? BTW, please carefully follow protocol if you decide to pursue any changes with these meds. Since you've been on them a while, I'm sure you know that weaning is not something to be done casually or haphazardly. You've mentioned pressure ranges. Have you tried a fixed pressure yet to see if the changes themselves might be disrupting your sleep stages even if the apneas are addressed? Good luck going forward.

[Doublev]

AHI: 1.75
Large leak: 0.19%
Obstructive: 1.25
Hypopnea: 0.50
RERA: 0.45

Pressure: min 6; med 12.62; 95% 14.50 max 15

You are spending a lot of time at 12+, up to 14.50. Full SH data (showing the graphs) can help us, but I see no reason for that min of 6...
So I would suggest raising your minimum to 8-10 (you can do it in small increments) and then raise the maximum to 16, 17,18 and see what happens.

Your AHI numbers are pretty good.. but you do have OSA so CPAP is needed for you. You might have something else going on.. make these changes and look at your SH every day. Let's get you dialed in over the next two weeks and see if it helps.

[DigDugSlug]

Does this help?

[DigDugSlug]

Here's last night's data. I changed the pressure from 11.2 to 17.4
Do you think that was OK?

Does the data tell you anything? It still looks like greek to me unfortunately.

[DigDugSlug]

Apologies!
I didn't realize that it wasn't publicly visible.

I've re-uploaded the images and hopefully, they are all public now.

[Pugsy]

You are taking Effexor...??? what dosage and how often? How long have you been taking it?
Taking any other medications of any kind? If so, what?
What is your primary complaint? Fatigue...lack of energy....sleepiness...need to nap????

If you want to play with your machine a little to get an idea what a bilevel machine would feel like you can turn EPR on and set it to 3 and see how you do. A real bilevel will let you do more than 3 cm difference but the most common bilevel setting is 4 cm Pressure support...so the 3 you can get with EPR is real close.

Your report isn't very exciting. Nothing just screaming out "fix me and you will feel better".

[DigDugSlug]

I'm on 300mg Venlafaxine ER. I take it in the morning, along with 10mg Lisinopril, 200mg Allopurinol and 40mcg methyl-folate. I have a terrible sense of time, especially since I've been under the effects of this sleep disorder, but I've been taking Venlafzxine for at least 4 or 5 years, maybe longer. Before that at various times, I've been on Celexa, Cymbalta, Cytomel, Abilify, Vyvanse and Adderall. I've frequently had to switch doctors because I've had to change health plans almost every year in order to get the least expensive plan that also offers the best coverage for me. So, there hasn't been much continuity of care. Medicaid won't cover stimulants for sleep disorders, so I haven't taken anything for the past 8 months. Even when I was on adderall, I could fall asleep on it. It felt like it helped a bit, but not that much frankly. I think my sleep doc from 10 years ago gave me Nuvigil, but that didn't seem to do anything for me either.

My primary complaint is waking up feeling like I haven't had restorative sleep, every morning for over 15 years. Over the past year or two I've noticed that it's become harder and harder for me to concentrate, read effectively and I forget things and make mistakes a lot. I was "working" for myself doing freelance work and contract design jobs, but I haven't taken any clients in about a year since I started to make mistakes and have a hard time coming up with design solutions for projects. It's also pretty hard to make decisions of almost any kind now.

I'm basically in a fog most of the time always feel like I need to sleep. Depending on the day, since I'm always home, I'll nap. If there is an event or activity that I find engaging, I can usually function normally and barely even notice my fatigue (which is weird!) But most of the time my eyes feel heavy and I feel like I have very bad jet lag.

For many years, my therapists have suggested that my depression could be a contributing factor, which I don't doubt, but somehow it just feels like something else to me. I saw a sleep doc/psychiatrist that I think suggested that I probably have a circadian rhythm/shift disorder too since I usually feel more alert in the evening, but I don't know anymore or can't remember for sure. This has been going on for so long and it's just become my normal life. I've forgotten what it used to feel like to not feel this way. But basically, every sleep doc that I've seen looks at my sleep data and says that I should be doing fine and they have nothing else to tell me. I have no social life or much of anything that's rewarding and whenever I try to address this, I don't really have the energy.

[Pugsy]

I think maybe you should dig deep into the various potential side effects for the medications you are taking.
Specifically the Effexor but read up on all of the meds you take.
Also google and read up on SNRI and SSRI medications and their effect on sleep in general.
Well known to suppress REM. You likely aren't getting the right combination and percent of time in the various sleep stages that are needed for the restorative powers of sleep to work their magic.

It's a double edged sword though. You have a problem or you wouldn't be on the meds but the meds can cause even more problems. Damned if you do and damned if you don't.

There's nothing on the reports that I can see that point to anything you could do differently in terms of your cpap therapy that might help.
You could try turning on EPR and just see if bilevel helps or not. Costs nothing to try it. Some people do rest better on bilevel and we don't know why.

[DigDugSlug]

Thanks so much for your replies!!!

I do have dreams, so I know that I reach REM, but I'll look more into the side effects.

[Pugsy]

We can dream in any sleep stage....not just REM.
And I am not saying you never get REM just that maybe you aren't getting enough.