End Of Rope...New Sleep Study??

Hard to believe, but I've been using a full face mask since oct. 2011, and my quality of sleep is still mostly horrible. It seems that every time I'm ready to seek additional professional help, I'll sleep reasonably well for a couple of nights and talk myself into thinking everything will normalize and I'll start sleeping OK again. This obviously hasn't happened. It's literally been over 2 decades since I've slept more than a few decent nights in any given week. By 'decent' I mean just not miserable, but by know means refreshed or rejuvenated,... it's just become my norm.

A little more about me:

I'm now 58, but am in great physical shape otherwise. I've worked out and been spot on with my nutrition since my early 20's. I'm currently a black belt in Shotokan karate, and work out at the dojo usually 3 times per week. I also weight train a couple of times per week. I'm skinny but muscular. I only state all of this so as to paint my picture more clearly. It's very, very frustrating, and sometimes depressing dealing with this roller coaster of feeling 100% miserable one day and then reasonably OK another.

I've only had one sleep study done, which showed only hypopneas. I sometimes wonder if I really even need the mask, but have fallen asleep without it and inevitability wake myself up 'snorting', not gasping for air, but just making a snoring noise, and since I'm a very light sleeper, I wake up. With my cpap, I sometimes only wake up once during the night, but still feel horrible, as if never reaching deep sleep. I've analyzed the data via the sd card and software, and the AHI is always low.

Years ago I went back a few times to my sleep doctor, and all he ever wants to do is try another prescription medication, which I'm very much against. I do still have a prescription for temazepam, but I only take it when I'm truly at the end of my rope and need some decent sleep. So this translates into taking it maybe once every couple of weeks, if that. I do sleep much better with it, which leads me to believe maybe my gaba receptors are screwed up somehow? I've tried every herbal combo you can imagine, with no real improvement.

So now I ask you guys, should I get another sleep study? I will cost me thousands even with insurance. I'm truly afraid it will be a waste of money. I mean what else would a another sleep study possibly reveal?

Thanks for reading,... I just had to unload on like minded people.

Marc

Exactly which model ResMed S9 machine are you using?
Model name should be shown clearly on the face of the machine up by the on/off button and LCD screen.

How about we see if your machine has a way to show us if the therapy is even optimal or not?
Do you know about the available software?
https://sleep.tnet.com/equipment

Problem being some models don't gather any useful data and that's why I asked about the model. Won't do much good to use software on a machine that doesn't gather useful data.

If you sleep on your back, do whatever you can to not do so... stuff a backpk etc. til you are sure you don't flip overnight. It can make quite a difference as apneas (and hyppps) are provoked by back sleeping.

Pugsy wrote:Exactly which model ResMed S9 machine are you using?
Model name should be shown clearly on the face of the machine up by the on/off button and LCD screen.

How about we see if your machine has a way to show us if the therapy is even optimal or not?
Do you know about the available software?


Problem being some models don't gather any useful data and that's why I asked about the model. Won't do much good to use software on a machine that doesn't gather useful data.

It is a S9 Elite

The Elite is a full data machine.
SleepyHead will work just fine with it.
Make sure the SD card is in the S9 Elite while using it.
Get some recent data and post it here and let's see what's going on.
Maybe something will just stand out screaming "fix me".

How to post
https://sleep.tnet.com/reference/tips/imgur

How to organize and there's no need to do all the graphs...the basics are just fine
https://sleep.tnet.com/resources/sleepyhead/shorganize

Examples of the basics
viewtopic/t103468/Need-help-with-screen-shots.html

While getting the software up and running some questions to give us a better idea of your history.

When you say you haven't slept well for decades...can you be more precise as to what is happening?
Insomnia?
Wake often during the night?
Can't sleep more than a few hours?
Do you take any medications at all...if so, what?
How many hours of sleep are you averaging?
Any other health issues that could be impacting sleep...pain...arthritis....diabetes...etc???

You mention having a sleep study "years ago". I'd ask your doctor about the prospect of an at home study and if that makes sense.

Sounds as though you're not happy with your sleep doctor. I'm always reminded that someone has to be the lowest graduate in medical school. Maybe a second opinion?

Pugsy wrote:The Elite is a full data machine.
SleepyHead will work just fine with it.
Make sure the SD card is in the S9 Elite while using it.
Get some recent data and post it here and let's see what's going on.
Maybe something will just stand out screaming "fix me".

How to post
https://sleep.tnet.com/reference/tips/imgur

How to organize and there's no need to do all the graphs...the basics are just fine
https://sleep.tnet.com/resources/sleepyhead/shorganize

Examples of the basics
viewtopic/t103468/Need-help-with-screen-shots.html

Thanks, I will try and sort through those links first chance I get and post some of my data.

itsjustme8 wrote:You mention having a sleep study "years ago". I'd ask your doctor about the prospect of an at home study and if that makes sense.

Sounds as though you're not happy with your sleep doctor. I'm always reminded that someone has to be the lowest graduate in medical school. Maybe a second opinion?

If I ever do another sleep study it will be with a different doc. However, when calling another one and quizzing the nurse, she also said that the doctor simply uses cpap and sleep meds,... so probably just more of the same.

Pugsy wrote:While getting the software up and running some questions to give us a better idea of your history.

When you say you haven't slept well for decades...can you be more precise as to what is happening?
Insomnia?
Wake often during the night?
Can't sleep more than a few hours?
Do you take any medications at all...if so, what?
How many hours of sleep are you averaging?
Any other health issues that could be impacting sleep...pain...arthritis....diabetes...etc???

Maintenance insomnia I would say. I can usually fall asleep, but will be awake again typically an hour and a half to two hours later, then repeat throughout the night. Sometimes it takes me forever to fall back to sleep, sometimes not. My wife has to get up at 6, so after that I'm done. Some nights though I will sleep for maybe 4 or even 5 hours straight, then back to sleep for another couple of hours before morning. I still feel horrible.

As mentioned I've tried all the usual suspects regarding sleep meds...to no avail. The only ones that work are the benzos. I've already been down that road of them stopping being effective, then had to cycle off,... that was reaaally horrible! I was using clanazepam then, and that was probably 15 years ago. Now, I only very rarely use temazepam, mainly when I'm extremely exhausted and need a decent night sleep. Once every couple of weeks, maybe once a week if I have something important to do the next day.

Hard to say exactly how many hours of sleep. At times I'll glance at my watch to get an idea... so on a good night maybe 5 to 6 broken hours, but feels like 2 or 3! I'm usually in the bed by 10 - 10:30. Dark room. No devices near bed. Sometimes I feel relaxed and ready for sleep, sometimes not so much. Doesn't really make a difference on the quality of sleep though. I swear I can find no rhyme or reason to the occasional decent nights sleep.

No other health issues, as stated I'm in very good shape, and work out at the dojo with 20 something year olds and hold my own just fine. I will admit though that sometimes I do get sore and maybe the occasional minor injury or muscle tweak (due to my karate workouts), and my lack of sleep certainly doesn't allow my body to recuperate. I have definitely notice that when I take naproxen for pain, or injury inflammation, I tend to sleep better. Yet there has been many nights when naproxen didn't help at all,... so who knows?

Marc

Fragmented sleep for any reason will put how we feel during the day right down the toilet.

Let's start with looking at the data available from the machine and see if anything stands out.
Gotta start somewhere.

Sleep maintenance insomnia is a real bitch. I have first hand experience with it myself and even though I know the cause...it's still a war I never really win. Sometimes I take a battle and sometimes the insomnia takes the battle.

Here's the cold hard truth though...the best cpap therapy in the world can't fix insomnia issues if the insomnia issues are caused by something other than sleep apnea and there is a mile long list of stuff that can mess with our sleep that is totally unrelated to sleep apnea.

But let's look to see if we get lucky and something stands out on the reports that could stand some work and might help the poor sleep quality.

Pugsy wrote:Fragmented sleep for any reason will put how we feel during the day right down the toilet.

Let's start with looking at the data available from the machine and see if anything stands out.
Gotta start somewhere.

Sleep maintenance insomnia is a real bitch. I have first hand experience with it myself and even though I know the cause...it's still a war I never really win. Sometimes I take a battle and sometimes the insomnia takes the battle.

Here's the cold hard truth though...the best cpap therapy in the world can't fix insomnia issues if the insomnia issues are caused by something other than sleep apnea and there is a mile long list of stuff that can mess with our sleep that is totally unrelated to sleep apnea.

But let's look to see if we get lucky and something stands out on the reports that could stand some work and might help the poor sleep quality.

OK I've downloaded Sleepyhead and will be saving screenshots and posting today. Since I can't fit all available graphs on one screen, are there any particular graphs needed for a screen shot, or do you need all of them, albeit on different screen shots.

Please don't try to include all the available graphs...we don't need them and it just makes for more work on both sides.

See this thread for examples
viewtopic/t103468/Need-help-with-screen-shots.html

You can get everything on one screen shot that is needed...just the basics...if we want or need an additional graph we will ask.

How to organize..3 pages, be sure to read all 3
https://sleep.tnet.com/resources/sleepyhead/shorganize

DON'T use SH to toggle to FULL SCREEN IMAGE....don't...there's a bug there that makes it hard to get out of. Use your browser to enlarge if you need to.

What I like to see

on the left side of the image ....hide the calendar and pie chart (turn off pie chart in Preferences/Appearance/remove check mark for show pie chart)
then everything that is needed on the left side will show up easily. The AHI stuff and the statistics.

On the right side
Since you are using a ResMed machine and will have a Flow limitation graph we will include it...so 5 graphs
Events
Flow rate
Pressure (either the mask pressure or the regular pressure but no need to do both)
Leak
Flow limitation

Graphs can be resized and moved or hidden so that only these 5 show up in one easy to see image.

Everything can be grabbed in one screen shot. If someone wants something else...they will ask.

So you end up with something like this

Your AHI is nice and low.
Leak rates are well within acceptable levels so we can trust the data.

I don't know that the reason for your sleep maintenance insomnia is going to be found in the software reports.
I wish it was that easy.

There is a mile long list of suspects when people are having sleep maintenance insomnia and sleep apnea is but one item on that mile long list.

I don't know that having another sleep study will yield any clues into what is causing the sleep maintenance insomnia. They can tell when we are asleep but not always why we wake up...sometimes they can if the arousal is related to a respiratory disturbance of some kind...but most of the time they can't point to definite culprits when it comes to sleep maintenance insomnia.

Your flow limitation graph numbers aren't unusually high...the graph isn't shown yet but I doubt it will be all that exciting or active. Flow limitations aren't part of the AHI but can impact sleep quality which is why we watch them.
Let's see the flow limitation graphs just to make sure it isn't all that exciting.

Here is a screenshot from this past Saturday. I felt absolutely horrible on Sunday.



And from last night. I did take naproxen, 2x220 mg and 1x 500 mg Tylenol, more of an experiment since I really didn't have any perceivable pain. Since I wasn't working today, I was able to fall back asleep around 5am, and consequently feel decent today. I do recall waking up more than the number of cpap shut offs show,... although I fell back asleep each time.