Additional sleep studies after being on CPAP for a while

Reading another thread has has prompted this thread (didn't want to hijack the other one). Didn't know if anyone had experience with this.

If you want another sleep study because you're sleeping poorly, but you're not doing it in relation to OSA to get another machine or something, do you have to sleep w/o the machine? I mean there are plenty of other sleep disorders beside OSA. I could understand if you wanted another type of machine, but just to check that your pressure is taking care of RERAs (had a bunch of those in my initial study), for example, or PLMD, problems with sleep structure, etc.?

Oh, and do they let you use your own machine and mask if you do another study after being on CPAP?

I've been on CPAP for six years and am still waking up multiple times a night and feel worse in the morning than when I went to bed. I don't gasp for air or wake up with a pounding heart, no headaches, and AHI is ALWAYS under 1. I was just able to get decent insurance (starting 2/1), after not having any for several years and have a sleep doc appt.the end of February

Thoughts?

Back in November, I was sent in for a second diagnostic study. I used my machine at my normal pressure with their mask as they can't fit the thermistor in with a Swift FX. Instead of a nasal cannula, they added a thin, second hose to take its place.

If it has been more than 5 years since your sleep study, you really need to have a complete repeat sleep study. Many things can change in 5 years. You might need different pressure. They probably looked for PLMD and other problems when you had your first study. A new study is recommended every 5 years. In fact, some insurance (including Medicare) will not pay for any OSA equipment without a new study.

I think you need to schedule a complete repeat sleep study.

Hey, I don't know the answers to these questions, but I just want to chime in that some of us are in a similar boat. I think diagnosing fatigue that isn't caused by a high AHI is really hard, but there are a number of us here suffering from feeling like crap with a low AHI, and I'd love to hear whatever your doctor says - what the theories are, what the tests are, and the results.

You seem to have some good ideas - whatever the problem is, clearly is something your machine isn't measuring under AHI. So it could be RERAs, PLMD, sleep fragmentation caused by something else (many possibilities...), they'll prob also do blood tests (thyroid, vit D, iron/ferritin), etc.

As one who has had a multitude of studies, that question has come up with me before. Some docs insist on a new baseline study if it has been a long time or the study was done at a different facility. Even my sleep doc I like wanted to start over because when she looked at the other old reports, she found some things questionable. However, in two subsequent studies she tested me on their machine but set at me prescribed pressure that data had already proved was consistently effective. That was because they were not really looking for a problem with my OSA treatment and she wanted to see me in the same scenario that I was having problems with. All of this was due to my issues with limb movements. Other situations may be different.

I had been on CPAP for years when it got bad for me again and decided to see a sleep specialist. I am on Medicare, and he told me that unfortunately that since it had been over 5 years since my last study, he was going to have to order a "split night study" where I would actually be required to "re-prove" to Medicare that I had OSA, and sleep WITHOUT a mask or CPAP for half the night. I knew it was going to be hell. I was barely able to do it and the sleep tech took pity on me as soon as she was able to put me on a machine, she did.

My doc said the way to keep this from happening is go in every 2 or 3 years and he will order a study for re-titration. That way my "coverage" never lapses with Medicare. Not sure if it's the same with other insurances.

The way I'm going to handle things from here on out is, when things go bad for me sleep wise---fatigue, headaches, daytime sleepiness, insomnia that doesn't go away, fogginess, etc., is I am going to go see the sleep doc, get it documented, bring in my data and work on it. I think in the past I had looked at it like "ok, I have OSA, here's the machine and it's supposed to solve the problem and it's a one time fix and I'm good." Nope. It's an ongoing issue that must be monitored, tracked, tweaked, and sometimes there are strange complications or issues that come up that you wouldn't think of or that you are oblivious to. That's where learning and knowledge and data tracking come in. I am committed to tracking and understanding my data. I am motivated by not ever wanting the sleep-loss-monster to get the best of me again. In other words, I've learned the hard way. I've hit bottom. Heh, sorry for the rant, I've been through hell, too.

Thanks everyone for your responses.

They didn't look at anything the first time other than OSA (including RERA)...no PLMD, etc. Mine was a two-night study, not split. And thing is, I never felt good after starting CPAP. I tell it like this...before CPAP, in the morning I felt like a dump truck had run over me, backed up, and ran over me again during the night. Post-CPAP, I don't feel that bad, but I do still feel bad! Sleep study would be at the same facility, and they changed directors right after I had my studies, so I did see the other one (who my Feb. apt. is with) once after my studies. When you don't have insurance and with the cost of sleep studies, going before now was impossible. I'd have to use my mask or it would be a waste of time...FF masks leak into my eyes and I can't handle nasal-only...never could get used to the freaky feeling they gave me, plus couldn't keep my mouth shut...LOL!

I keep track check of Vit D levels and am taking OTC D3. I already had my thyroid ablated with RAI 7 years ago, am on Synthroid, and get my numbers checked yearly (last time was three months ago). But there is plenty of other stuff to check on blood work, that's for sure. And I've got other stuff going on now too...muscles aching all over, brain fog, and extreme exhaustion, so could very well be other stuff in addition to or fully causing my sleep issue.

Anyway, I'll let you know what the docs say. I hate sleep studies, as I'm sure a lot of folks do. With software to read my machine data so I know how I'm doing with AHI and snoring (and can change the pressure if I see a need), I would never get another sleep study if I was feeling good just because it's been a long time since the last one.

WearyOne wrote:Reading another thread has has prompted this thread (didn't want to hijack the other one). Didn't know if anyone had experience with this.

If you want another sleep study because you're sleeping poorly, but you're not doing it in relation to OSA to get another machine or something, do you have to sleep w/o the machine? I mean there are plenty of other sleep disorders beside OSA. I could understand if you wanted another type of machine, but just to check that your pressure is taking care of RERAs (had a bunch of those in my initial study), for example, or PLMD, problems with sleep structure, etc.?

Oh, and do they let you use your own machine and mask if you do another study after being on CPAP?

I've been on CPAP for six years and am still waking up multiple times a night and feel worse in the morning than when I went to bed. I don't gasp for air or wake up with a pounding heart, no headaches, and AHI is ALWAYS under 1. I was just able to get decent insurance (starting 2/1), after not having any for several years and have a sleep doc appt the end of February

Thoughts?

Which machine do you use and what are the settings? (from your profile, it appears to be an M Series "something")
Do you have any ideas about what may be causing the awakenings?


Den

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I've been on CPAP for about 18 months and am still very fatiqued despite great numbers and getting around 8-9 hours sleep a night. As a result, i'm about to go for my fifth sleep study to try to get to the bottom of what's going on. I'm pretty sure i have some form of plmd as i twitch most of the night. My last sleep study a few months ago finally showed some leg movements but there weren't a lot. My sleep doc put me on Sinemet but it made the twitching worse so i came off it. He describes me as somewhat of a 'puzzle'. I should add that CPAP does help in that i am more awake first thing in the morning but i still can't concentrate and just zone out through the day. I just end up staring into space. If my doc can't find any logical cause for my sleepiness, he's suggesting putting me on a wakefulness drug. I'm also wondering how big a part my diet may be playing in all this. Anyway, sounds like we are all suffering similar symptoms.

For anyone who has reason for PLMD to be a concern rather than a problem with the OSA, getting another study without CPAP will NOT show what's happening with the legs during effective CPAP treatment. Titration is not a good time to see that either because so much of the time can be spent working up to a therapeutic pressure and so little sleep time left for limb movements to be assessed. The only way to really capture in the lab what your legs are doing while at home on your prescribed pressure is to duplicate that scenario in the sleep lab. When one has both OSA and PLMD, whichever one is not effectively treated can mask the other. If I allowed myself to dwell on this it would make me nuts. I shudder to think of how many people do not get accurately diagnosed due to this masking effect. I suffered years longer than I should have because I hadn't yet found a doctor willing think beyond the basic diagnostic then titration study. I think it was Albert Einstein who said insanity is doing the same thing over and over again and expecting different results.

Disclaimer: This does not apply to looking for OSA issues, because the variables in one's sleep and changes over time can make each and every sleep test different, thus repetition may be warranted. My comments are strictly related to people with OSA and PLMD.

Den, just realized that even though I have my machine marked in the user control panel, for some reason it's not showing up, so I just added in "additional comments." It's M Series Pro C-Flex CPAP. I have it set at 8.5, but for the past few nights I bumped it up to 9 to see if it would make any difference. I was titrated to 9, but was having breathing problems at first during the day at 9 so sleep doc said to put it back to 8.5. And 8.5 was bringing AHI under 1, so I kept it there until a few days ago. So far no difference except I seem to have awakened less the last few nights, but still only sleep an hour or two at a time. And with that pressure of 9, two nights ago AHI was 0; last night it was .1, and you can't get much better than that.

About a week ago I've kind of "trained" myself that when I wake up I lay very still and assess a list of things that could have awakened me, such as too hot/cold, pain, a noise, mask leaking, bad dream, gasp for air, snoring, need to go to the bathroom, etc., but MOST of the time I can't come up with anything. Then if I'm awake enough, I look at the time so I can compare to the data the next morning, then usually go back to sleep. (I also wear earplugs and started wearing an eye mask since the daylight starts peaking around the drawn shades and curtains about 6 a.m. Cool room, no lights.)

Kathy, I do have RLS and don't know if RLS is connected in any way to PLMD (although the RLS hasn't been bothering me much lately). In my sleep study I had a lot of non-breathing-related arousals, but that was never explored. And in my ignorance back then, I didn't ask for it to be pursued, thinking that using CPAP would make everything all better.

Oh, and I just remembered something the sleep tech said at my titration; don't know if it means anything or not. He said every time they tried to raise my pressure I'd start to wake up, so they brought it back down, they slowly would try again until they finally got to where there were no breathing issues. I'm assuming since he mentioned it to me it must not be a normal response?

WearyOne wrote:Den, just realized that even though I have my machine marked in the user control panel, for some reason it's not showing up, so I just added in "additional comments." It's M Series Pro C-Flex CPAP. I have it set at 8.5, but for the past few nights I bumped it up to 9 to see if it would make any difference. I was titrated to 9, but was having breathing problems at first during the day at 9 so sleep doc said to put it back to 8.5. And 8.5 was bringing AHI under 1, so I kept it there until a few days ago. So far no difference except I seem to have awakened less the last few nights, but still only sleep an hour or two at a time. And with that pressure of 9, two nights ago AHI was 0; last night it was .1, and you can't get much better than that.

About a week ago I've kind of "trained" myself that when I wake up I lay very still and assess a list of things that could have awakened me, such as too hot/cold, pain, a noise, mask leaking, bad dream, gasp for air, snoring, need to go to the bathroom, etc., but MOST of the time I can't come up with anything. Then if I'm awake enough, I look at the time so I can compare to the data the next morning, then usually go back to sleep. (I also wear earplugs and started wearing an eye mask since the daylight starts peaking around the drawn shades and curtains about 6 a m Cool room, no lights.)

Kathy, I do have RLS and don't know if RLS is connected in any way to PLMD (although the RLS hasn't been bothering me much lately). In my sleep study I had a lot of non-breathing-related arousals, but that was never explored. And in my ignorance back then, I didn't ask for it to be pursued, thinking that using CPAP would make everything all better.

Oh, and I just remembered something the sleep tech said at my titration; don't know if it means anything or not. He said every time they tried to raise my pressure I'd start to wake up, so they brought it back down, they slowly would try again until they finally got to where there were no breathing issues. I'm assuming since he mentioned it to me it must not be a normal response?

Thanks for the info. I was thinking from past readings that you were on a single pressure, but wanted to verify it.
You're right......you can't do much better than those results.....in the AHI category.
When you look at your reports (I presume you're using Encore Pro), can you see any events (like leaks, snoring or "whatever") that may coincide with your awakenings?
The one to two-hour time frame COULD coincide with REM cycles.....or portions of the sleep cycles in general. (We typically cycle through our sleep cycles at 90 - 120 minute intervals.)

If you're taking any medications, there's always the potential for them to affect the sleep, too. I'm not asking for your medical history, but you might keep that in mind when you're trying to unravel this mystery.

On a personal note, I usually wake up briefly during the night if I roll over (I'm a side-sleeper) and have to reposition my hose......but usually go back to sleep pretty quickly. However, I have slept through some pretty lengthy large leaks.

Hang in there.

Den

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Get a PRS1 Auto or S9 AutoSet machine and check your data. They do much better data collection than your M series. If you buy it online, it isn't that expensive compared to another sleep test, depending on insurance.

I'd say to do that even if you want to get a new sleep test anyway.

Getting a new sleep test is mainly about cost and inconvenience. INSIST!!!! that your doctor give you a sleeping pill to take in case you can't sleep in the lab, with wires everywhere, in the wrong bed, with no CPAP, etc.

By the way, there's another risk for a sleep test. Some people have gotten sleep tests, had a lousy night with little sleep, no deep sleep, no REM sleep, a lucky/unlucky night, and haven't shown severe enough apnea that they lost insurance coverage for CPAP.

WearyOne wrote:They didn't look at anything the first time other than OSA (including RERA)...no PLMD, etc.

How do you know they didn't? Did they put sensing electrodes on your legs? If so, they did record leg movements. And with a two-night study, they had more time to record all aspects of disordered sleep. The real question is if the doctor interpreting the study bothered to LOOK at all the recorded parameters. It's kind of like information overload for them (too much data). So if the doctor found OSA helped with CPAP, they probably didn't go any further to look for other co-existing problems.