Need Help Acclimating (UARS)

Hi Everyone, I am new to the cpap forums and have been struggling to get help with my insomnia and UARS. I've been to many doctors and finally as of last year I was diagnosed with mild OSA, but I don't like that term, my sleep disordered breathing is closer to UARS. I wake up 23 times an hour to RERAS, but my AHI is extremely low. I've suffered with onset and maintenance insomnia since I was 11 and along the way I developed severe memory problems.

I feel like I hit a dead end and so I feel it is time I signed up to the forums and seek help outside of my medical network.

I've been trying to acclimate to my apap for over a year now. There isn't enough compliance data so the doctor and therapist cant say much about it. I was given all the common sense advice on how to improve sleep, such as sleep restriction but that actually makes things worse. I wake up to cardiac like events and lost cognition several times. My doctors dont believe me or atleast feel impotent but I dont think saying that is very helpful.

To move on... I need help with acclimation. I think I went over all comfort settings. i use a humidifier, wear ear plugs, sleep in a dark cool room. Have a hose cozy and cpap liner. I just dont know what to do. I am hypersensitive to noise. My sleep study also indicated that air conditioning noise severely broke my sleep architecture, sleep onset was extremely delayed and sleep efficiency was low.. i dont remember the number... something like I was only asleep for 3 hours, most of which was stage 1 sleep, zero delta.

I tried testing out the machine during early evenings so that I can catch up on sleep at night. I don't think I am sleeping on the cpap and the therapy was meant to improve sleep maintenance and as such the cpap is only helpful if I can fall asleep. I understand that is bad sleep hygiene but I severely fatigued. I've been to the emergency many times from sleep deprivation. Stanford's sleep therapist also noticed my data seem to imply "I have worse sleep than a 80 year old". Not very encouraging.

My doctors at Kaiser though seem to have a different impression and believe it is impossible to be so sleep deprived and think I have sleep state misperception even though data shows zero delta and low efficiency.

Maybe I am dozing. I don't know but I think that would be reassuring and would motivate me to stick with the cpap. At this point I almost feel I feel better without the machine. My AHI is normal under 5... I believe it was a 2.2. It is my RERAS that was scored in the 23 index.

I downloaded sleepyhead and need help interpreting some of the data. My cpap therapist mentioned that you can estimate if the user is asleep by analyzing breathing pattern. Can someone tell me if the flow rate can give insights whether I was asleep or not?

I apologize if my English is sloppy.. lack of sleep has caused me I feel to type and speak gibberish

The breathing pattern after the VS2 flag looks like regular rhythmic sleeping to my untrained eye.
The irregular mess preceding the VS2 flag...have no idea what it might mean but I would suspect sleep/wake/junk of some sort.

Thanks Pugsy for your response. I'm not familiar with Sleepyhead. Is there a screenshot of something on my data that would be more helpful?

I also forgot to add that my sleep studies show no apneas... the only apneas I had were 1 central apnea on my back

My 2 main problems is getting to sleep on the apap because of the sensitivity to noise and I guess finding a way to maybe hopefully reassure me that I am sleeping on the machine and not realize it. I was told that hypopneas can occur before sleep so they are not reliable indicators of sleep.

I dont have much data to really say anything. I'm just so physically worn and been to all the best sleep doctors in the bay area.

What are ALL of your settings?


Den

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Philips Respironics System One (60 Series)
RemStar Auto with A-FlexModel 560P - P1399607753A2
PAP Mode: APAP (Variable)
Min 5.5 Max 12 (cmH2O)
humidifier: 4
Full face mask. I've used the amara full view and the f10 the most.
99% mask fit, usually no major leaks

It's been fairly consistent from my sleep studies and also data on my apap that I have almost always

1 central apnea
a few hypopnea events and RERAS. I generally have good oxygen saturation. Never dipped below 91%

Might be helpful to see the entire detailed report and not a snippet so we can see what the pressure is doing over the night and leak also.
I like to see the AHI breakdown on the left and these graphs on the right side
Events
Flow rate
Pressure
Leak

Examples in this thread
viewtopic/t103468/Need-help-with-screen-shots.html

I have my doubts as to whether the graphs are going to show much though. Your AHI is already going to be low because you have UARS and not typical OSA.
UARS patients usually tend to be hypersensitive to any stimulus so that part doesn't surprise me.
It's possible that the changing pressures (if they are changing) could be causing some sort of low level arousal and it might be worth trying a fixed pressure or a very, very tight range in apap mode so that we don't lose the FL flagging (it gets turned off on the PR S1 in cpap mode) which might be useful in your situation.

Your main problem though is sleeping with the cpap machine period. Perhaps a more stable pressure would work to your advantage and lessen the chance of pressure changes disturbing your sleep.

From what I have read it seems like UARS people tend to need a little more pressure in general than what might be shown as "effective" on the software reports because we can't rely on the software reports to tell the whole story for UARS patients.

We do have some UARS forum members here who might be able to chime in...if they knew about it so you might edit your first post because you can then edit the Subject title and add "UARS" in there somewhere.

UARS is a tough cookie to crack even when a person is using the machine all night every night.
Right now I would think that the primary goal would be to get you to at least be able to use the machine all night...without it you stand about zero chance of improving.
Figuring out why sleep quality is worse with cpap than without...another issue to deal with that isn't easy.

lindalam89 wrote:Philips Respironics System One (60 Series)
RemStar Auto with A-FlexModel 560P - P1399607753A2
PAP Mode: APAP (Variable)
Min 5.5 Max 12 (cmH2O)
humidifier: 4
Full face mask. I've used the amara full view and the f10 the most.
99% mask fit, usually no major leaks

It's been fairly consistent from my sleep studies and also data on my apap that I have almost always

1 central apnea
a few hypopnea events and RERAS. I generally have good oxygen saturation. Never dipped below 91%

OK. Thanks.

In view of your previous statement.......

I've been trying to acclimate to my apap for over a year now.

.......your pressure range jumps out at me as possibly a factor of sleep disturbance and you not getting deep, restful sleep.

I would suggest trying a straight pressure and see if that helps.


Den

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If you elect to try fixed pressure on your PR S1 machine I would suggest that you stay in APAP mode but set the minimum pressure to equal the maximum pressure because this way we don't lose the FL flagging ...just in case it might be important to know if they are happening or not.
Minimum equaling maximum will make the machine function like a fixed pressure machine but we don't lose the FL flagging like we would if you changed over to CPAP mode.
Doesn't matter with ResMed machines but does matter with Respironics machines.

I hope this image helps.. I am so mentally tired I am not confident a snapped the right screen shot of what you wanted.

I hope some insomniac and UARS patients can help me out here. I constantly complain about being fatigued. I'm bound by bed and my hours at work has been dramatically cut. I know that unless I change something now, I will forever feel like this and start to get worse. I am already getting worse. I dont like going to the hospital many times, it has come to the point my sleep doctor ignores nearly all my messages.

The complaint is not helpful I know. But I just want honest help. And honest suggestions from people who know how it feels to literally not sleep everyday except a measly broken 2-3 hours of sleep. I've tried sleep restriction and I tried getting 9-10 hours of rest. I come from a family of very deep sleepers. It is not helpful that every member can sleep 24 hours if they wanted. I tried every drug and my doctor is hesitant is prescribe anything other than amitriptyline.

I don't know where to begin. I hate the cpap so much. I wish I never asked the doctor to do another study. I was original not diagnosed with OSA until I pointed out that Stanford suggested I do a more sensitive sleep study to rule out UARS.
I thought it would be a easy solution to get a apap. But the apap has made my sleep worse, but I am convinced that I need some kind of treatment otherwise I will get worse. I dont think the apap is the problem.. I think it is my hypersensitivity to noise.

My doctors all agree I sleep like someone with PTSD. Kaiser sleep doctor has this idea that I am sleeping more than I think and that I just might have sleep study insomnia. I disagree and the Stanford sleep therapist thankfully sympathizes and says my data looks more like someone who probably is waking every second., which is not restful.

As for the controlled pap pressure. The Kaiser respiratory therapist was kind enough to catch that suggestion early on. Set my controlled pressure I believe to 6.9 and my AHI skyrocketted, went back to apap mode with a min 5.5 and max 12 and my AHI dropped under 5 but I still feel like i'm not sleeping. I hear the hum and my breathing which keeps me up and its not very helpful because I know I am awake.

edit: From the previous posts it sounds like you agree on a higher fixed pressure if not a higher minimum pressure? I can go back to 6.9. My therapist said even on apap mode I never went above 6.9. I lowered the min pressure because I thought it would lower the wooshing sound of my breathing. It seems like the sound of my breathing and the machine reving up sound keeps me up.

Respironics machines have that "swooshing" sound on inhale and the ResMed machines tend to have it on exhale. I do think that it is less noticeable on the ResMed machines though...but Kaiser only dispenses Respironics. I don't know that a different brand would help you though. I mention it because I know what you are hearing. Part of it may be what we call "conductive noise" and you might be able to lessen it with some sort of hose management system if you aren't using one. Get that hose up off the bed so it can't hold onto the machine breathing noise so much.

Try a little experiment....put the mask on and turn the machine on and stick your fingers in your ears...do you still hear the breathing noise at about the same noise level? If you do then the noise is more conductive and hard to reduce in volume.

Your pressure graph pretty much shows what I expected which is not much movement. Those little spiky things that look like a saw tooth pattern are just the normal pressure probes....it wouldn't be impossible for those to be impacting your sleep quality....so yes...give a fixed pressure a go by doing the minimum to equal maximum...and I would just put it at 7.0 if it were me. Your machine only does 0.5 cm increments.

When you had the higher AHI on fixed pressure...was it mainly CAs by chance? If so, I suspect it was more like awake breathing getting flagged by mistake. Remember the machine doesn't know if you are awake or asleep as it only measures air flow and it's easily tricked by awake/semi awake breathing irregularities.

Looking at that report, you're having pressure pulses (about 1.5 cm. each)........all night long.
I would think they would be sleep-disturbing.
Switching to straight pressure should alleviate them and eliminating some possibilities of what is causing you to feel unrested.


Den

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Hi Pugsy, you are right. Sorry my memory is like swiss cheese. Looks like my machine only goes in .5 increments. My set pressure was 6.5. I will try a 7 minimum pressure setting.

I rely on ear plugs so I admit the sound of my breathing is worse with the ear plugs on. When I take ear plugs off, the machine makes a a very low swooshing sound on inhale. I cant forgo the earplugs. The ear plugs block the noise from the machine but amplifies internal breathing.

I have my cpap on the lower drawer of my night stand. I also find hiding the tube under my blankets muffles the noise very little. Unfortunately I need absolute silence to sleep. I've been awaken by noises through my ear plugs which sound like they could be 10 decibels or lower noise. It's ridiculous

I checked my data on the night with the highest index on fixed pressure 6.5:

I do not see a Clear airway, but I do see hypopneas and pressure pulses and vibration snores. The snores are odd. I've recorded my sleep before and I sleep talk. I once caught myself hallucinating on cpap, and let out a yelp. The machine registered it as a snore.

DEN, you are right, my therapist said I had lots of pressure pulses because there were moments I forgot to breathe. I told him ive been soo exhausted lately that I have no energy to breathe

lindalam89 wrote:Hi Pugsy, you are right. Sorry my memory is like swiss cheese. Looks like my machine only goes in .5 increments. My set pressure was 6.5. I will try a 7 minimum pressure setting.

I rely on ear plugs so I admit the sound of my breathing is worse with the ear plugs on. When I take ear plugs off, the machine makes a a very low swooshing sound on inhale. I cant forgo the earplugs. The ear plugs block the noise from the machine but amplifies internal breathing.

I have my cpap on the lower drawer of my night stand. I also find hiding the tube under my blankets muffles the noise very little. Unfortunately I need absolute silence to sleep. I've been awaken by noises through my ear plugs which sound like they could be 10 decibels or lower noise. It's ridiculous

I checked my data on the night with the highest index on fixed pressure 6.5:

I do not see a Clear airway, but I do see hypopneas and pressure pulses and vibration snores. The snores are odd. I've recorded my sleep before and I sleep talk. I once caught myself hallucinating on cpap, and let out a yelp. The machine registered it as a snore.

DEN, you are right, my therapist said I had lots of pressure pulses because there were moments I forgot to breathe. I told him ive been soo exhausted lately that I have no energy to breathe

As long as you leave it in a range of pressures, you're still going to be dealing with the same problems.
It's not going to get rid of the pressure pulses/probes. (until you switch to single pressure of set the min and max the same)

Just sayin'.......


Den

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Pressure pulses aren't the same thing as the pressure probes.

Pressure pulses are the tiny puffs of air that the machine will deliver when it needs help in determining if the reduction in airflow is related to airway tissues obstructing the flow or if the airway is open (clear).
Pressure pulses can be used in either fixed pressure mode or auto adjusting mode and are unrelated to pressure settings. These are using seen on the flow rate graph. There's no way at all to stop the machine from doing the pressure pulses if it thinks it needs to.

Pressure probes are what is shown on the pressure graph when in apap mode with a range of pressures.
The machine periodically increases the pressure 1.5 cm just to "test things out"...see if it needs to do anything or do nothing but reduce the pressure. Pressure probes are those saw tooth looking spikes on the pressure graph. These can be eliminated by either going to cpap mode or stay in apap mode but just set the minimum to equal the maximum.

So I was extremely tired and tried to take a nap. Granted I havent napped successfully for 16 years. I changed the minimum pressure to 7 and kept apap mode. I felt myself doze but awaken by a hiccup sensation. I dozed again and woke up almost immediately . Not sure why. I decided to upload the data again to sleepy head and got this:



I think I see what you guys mean by pressure pulses. Before the hiccup sensation, I recalled feeling like I didnt need to breathe... so I didnt.. I just let the air pressure do it's job. It's kind of concerning that I noticed I have a lot of moments where I am "too tired to breathe". I sometimes question if I am using the machine that is right for me. I know there are Bipaps... not sure if that would be better suited for me. Actually i'm not quite sure of the differences between machines except that some are used for central apneas, and others for obstructive. I was diagnosed obstructive but it still concerns me that every sleep study I had, the only apnea registered was a central apnea....I relate this as the "too tired" to put in the effort to breathe. Correct me if i'm wrong please. I would appreciate some proper education. I sometimes feel like this forum have more knowledgeable people than the help I am getting at my medical network.

I also noticed I've hit some 8.5 pressure points. Maybe I should set my pressure at 8.5 or even 9 instead of 7?