Need Help Acclimating (UARS)

[Pugsy]

Those times you hit 8.5 cm were just the test pressure probes doing their job. Means nothing in terms of the machine responding to any sort of obstructions.
Test pressure probes are 1.5 cm ....your minimum of 7.0 plus the 1.5 equals the 8.5.
If it hadn't been for the test probes the pressure wouldn't have moved off 7.0.

[lindalam89]

Thanks for educating me pugsy. Since they are pressure probes and not pulses... would you suggest a fixed pressure to limit the hiccup sensations? What pressure setting do you suggest? Since 6.5 seemed to jump my AHI out of normal index.

[Wulfman...]

You're going to keep getting those pressure bumps as long as you're using a range of pressures.

Again, I suggest straight pressure (either CPAP mode or APAP with min and max the same).

Maybe try splitting the difference at 8 cm.


Den

.

[Pugsy]

I don't know what that AHI (that jumped out of the normal index) was at 6.5 when you tried fixed pressure. It could very well have been primarily made up of Clear Airway events that were flagged during an awake time. It might have been flagged events unrelated to the pressure. It might have been a relatively short sleep session with a bunch of awake stuff getting flagged and making the AHI appear worse than it really was.
Based on the reports here...you don't need much pressure to prevent the airway from collapsing to the point of earning a flagged event.

Clear Airway events we ignore unless there's a truckload of them and you are a long, long way from a truckload.

UARS people don't always have the airway collapse to the point of earning a flagged event though.
The airway collapse has to meet certain criteria...certain percent of airflow reduction and last at least 10 seconds to earn a flag. UARS people often will find that they experience an arousal (disturbed sleep) prior to meeting the criteria for normal OSA flagged events.

From what I have read UARS people seem to need more pressure than what might be technically needed if just going by the software reports but the software reports from these machines aren't really all that helpful since by design they flag OSA events that meet the above criteria...we can't tell what happened that didn't meet the criteria.

Add in your admitted problems with using the machine all night because you can't sleep with it and it makes for a more difficult evaluation as to what you might need.
If it were me I would pick a pressure (6 or 7) and set the minimum to equal maximum (to eliminate those pressure probes) and give it a try just to see if I could get some sleep.

I don't know what you mean by hiccups unless you are sensing the pressure pulses because the machine is wondering why there is no air movement but if you are awake you shouldn't be having pressure pulses unless you are inadvertently holding your breath. Pressure pulses (the tiny puffs) you can't do anything about....the machine will do what it thinks it needs to do to help decided what type of event it is sensing that is happening. Pressure pulses can happen even without earning a flag...like it can do a pressure pulse and have the reduction of airflow end at 8 seconds...so it doesn't earn of flag.
Pressure pulses are not continuous and should NOT be sensed while awake when someone is breathing normally because there shouldn't be any airflow reduction while awake unless someone is holding their breath and that's a clear airway reduction..not obstructive.

[lindalam89]

Den: I took your suggestion and set a fixed setting of 8 and it helped a lot!

Pugsy: You are amazing and full of valuable information. Thank you so much for educating me. Correct me if i'm wrong but I gathered from your post that pressure pulses should not happen on a fixed pressure but even if they happen on apap, it shouldn't arouse a person much if they awake? Did I understand that right? As far as I know, I am either very awake on the pap machine or in stage 1 dozing. The hiccup sensations bother me when I am dozing because I feel I'm almost ready to sleep then I feel what feels like a puff of air resisting against my throat. I get these sensation actually when I am up. For an example on rare occasions I might be running and suck in too much air and this creates a hiccup sensation. I always took that as a sign of a narrow airway.

I used the machine for much longer on a fixed setting of 8. What do you guys think? Any thoughts?


The cpap will get some getting used too. I cant believe some people actually think this machine is comfortable. But I understand if people wear it because it is a medical necessity. I was told by my doctor to keep trying the pap machine BUT I can technically not need to use it because my oxygen saturation is always above 91%.

The cpap is meant to improve my symptoms of insomnia and fatigue. I know this is too early but I actually feel the amount of disruptances I get using cpap is equivalent if not greater than when I'm not sleeping without. I'm not trying to create excuses and I know it is too early too tell. From my statistics... what do you guys think? Worth pulling through the machine? Again the doctor only prescribed the machine to me because he said it is suppose to address the awakenings but if i'm having the same number of arousals both on and off the machine, it then becomes a choice.

I don't know enough to make a wise decision. I'm more afraid of the cpap being a necessity in the future but my doctor says not everyone gets worse apnea. And it's particularly hopeful if there isn't any family members with respiratory problems.

[49er]

Den: I took your suggestion and set a fixed setting of 8 and it helped a lot!

Pugsy: You are amazing and full of valuable information. Thank you so much for educating me. Correct me if i'm wrong but I gathered from your post that pressure pulses should not happen on a fixed pressure but even if they happen on apap, it shouldn't arouse a person much if they awake? Did I understand that right? As far as I know, I am either very awake on the pap machine or in stage 1 dozing. The hiccup sensations bother me when I am dozing because I feel I'm almost ready to sleep then I feel what feels like a puff of air resisting against my throat. I get these sensation actually when I am up. For an example on rare occasions I might be running and suck in too much air and this creates a hiccup sensation. I always took that as a sign of a narrow airway.

I used the machine for much longer on a fixed setting of 8. What do you guys think? Any thoughts?


The cpap will get some getting used too. I cant believe some people actually think this machine is comfortable. But I understand if people wear it because it is a medical necessity. I was told by my doctor to keep trying the pap machine BUT I can technically not need to use it because my oxygen saturation is always above 91%.

The cpap is meant to improve my symptoms of insomnia and fatigue. I know this is too early but I actually feel the amount of disruptances I get using cpap is equivalent if not greater than when I'm not sleeping without. I'm not trying to create excuses and I know it is too early too tell. From my statistics... what do you guys think? Worth pulling through the machine? Again the doctor only prescribed the machine to me because he said it is suppose to address the awakenings but if i'm having the same number of arousals both on and off the machine, it then becomes a choice.

I don't know enough to make a wise decision. I'm more afraid of the cpap being a necessity in the future but my doctor says not everyone gets worse apnea. And it's particularly hopeful if there isn't any family members with respiratory problems.

Hi Linda,

As an FYI, even though I have moderate sleep apnea, my O2 desats have never gone below 90% and only briefly. But I would never go without treatment whether it means using the Pap machine or going with another alternative. I haven't researched the ramifications of having UARS without treatment but I suspect it would not be a good thing as subjecting your body to these constant sleep disruptions is not a good thing healthwise.

By the way, I do understand your frustration with the machine worsening sleep as that has happened to me for for several years. I suspect I also have an UARs component as last year, my sleep study came up with an UARs like profile although the current one didn't. But I seem to fit so many of the characteristics so that is why I suspect I do have it in addition to sleep apnea.

If I were in your situation, I would give pap therapy a try for about 6 months and then revaluate your situation. But obviously, you have to do what you feel is best.

49er

[Pugsy]

Pressure pulses are the machines way of identifying the type of apnea event that might be occurring...those are the tiny puffs of air...and I mean tiny...and they can occur in both fixed cpap mode and apap mode.
They are NOT part of the auto algorithm that causes the pressures to maybe roam around.
You should NOT be having/experiencing them while awake unless you are holding your breath. They don't happen unless something is going on with the airflow and there shouldn't be anything going on with the airflow while awake unless a person is inadvertently holding their breath and not realize it (and that happens a lot).

Pressure probes are the 1.5 cm spikes you see when in apap mode. They don't happen in cpap mode and won't happen in apap mode if the minimum is set to equal maximum.

I have no idea what you might be actually sensing when you talk about the hiccup things. Obviously you have to be awake to notice and experience. If they are happening right at the beginning of the night you can zoom in on the flow rate graph to see if pressure pulses are happening at that time....Or look at the events tab for Pressure Pulses and see when/if they were happening right when you first start the night.

I don't know what to tell you about what to do about UARS and the fact that the CPAP therapy itself is a difficult adjustment and is it worth it? That's between you and your doctor.
While we don't expect cpap therapy to be a miracle fix for sleep issues we sure don't expect cpap therapy to make sleep issues worse. Which way is worse? With or without cpap? Some people simply never can get past the point where cpap itself is more of a problem in terms of sleep quality.

People with UARS can get therapy and see an improvement with cpap use but no one ever said it was easy or that every one would be successful at it. It's between you and your doctor as to whether the cure is worse than the disease.

[Wulfman...]

Den: I took your suggestion and set a fixed setting of 8 and it helped a lot!

Pugsy: You are amazing and full of valuable information. Thank you so much for educating me. Correct me if i'm wrong but I gathered from your post that pressure pulses should not happen on a fixed pressure but even if they happen on apap, it shouldn't arouse a person much if they awake? Did I understand that right? As far as I know, I am either very awake on the pap machine or in stage 1 dozing. The hiccup sensations bother me when I am dozing because I feel I'm almost ready to sleep then I feel what feels like a puff of air resisting against my throat. I get these sensation actually when I am up. For an example on rare occasions I might be running and suck in too much air and this creates a hiccup sensation. I always took that as a sign of a narrow airway.

I used the machine for much longer on a fixed setting of 8. What do you guys think? Any thoughts?


The cpap will get some getting used too. I cant believe some people actually think this machine is comfortable. But I understand if people wear it because it is a medical necessity. I was told by my doctor to keep trying the pap machine BUT I can technically not need to use it because my oxygen saturation is always above 91%.

The cpap is meant to improve my symptoms of insomnia and fatigue. I know this is too early but I actually feel the amount of disruptances I get using cpap is equivalent if not greater than when I'm not sleeping without. I'm not trying to create excuses and I know it is too early too tell. From my statistics... what do you guys think? Worth pulling through the machine? Again the doctor only prescribed the machine to me because he said it is suppose to address the awakenings but if i'm having the same number of arousals both on and off the machine, it then becomes a choice.

I don't know enough to make a wise decision. I'm more afraid of the cpap being a necessity in the future but my doctor says not everyone gets worse apnea. And it's particularly hopeful if there isn't any family members with respiratory problems.

Looks like a good start (or re-start) to me.
This whole new way of sleeping is "baby steps" and "one night at a time".
At some point, you'll look back and realize how long ago it was that you started........and that everything has become second nature.

Sure, it takes some getting used to and adaptation, but the vast majority of us on the forum became passionate about it after we've felt the benefits.

Sleep apnea is a progressive condition and can take years to manifest itself in the worst ways and can lead to other diseases like Diabetes, heart diseases/conditions, strokes, etc.

Just hang in there and be proactive with your therapy. Study your reports regularly and you should be fine. If you have questions, be sure to post your reports here (like you have) and we'll try to help.


Den

.

[lindalam89]

Thanks everyone for your honest and supportive input. I suppose it is easy to get discouraged when it sounds like people fall in love with their cpap machine. It makes me think there might be something very wrong with me. Maybe I am overly sensitive than I should be. Sort of glad to hear though that there seems to be some relatable empathy on the rockiness with getting used to something foreign making noise and blowing down your throat.

You have all encouraged me to continue trying out the cpap. Last night was a major milestone but considering how fatigue and achy I am, I almost wanted to give up and convince myself it is better without the machine.

I don't think I can continue the whole night, I feel I might need breaks inbetween to catch up on sleep without being disturbed by cpap. I just feel terrible as I am constantly reminded by my physicians that you cant reap the benefits unless you use it when you sleep. I think I can start off with 4 hours most nights but not sure how I would get adjusted to trying it every night. But if this will in the long run prevent me from getting alzheimer or heart disease or at least cut the risk... it is definitely worth it.

How do you guys cope with the memory loss, cognitive dysfunction and fatigue from lousy cpap sleep? I've already cut down my work hours to a unreasonable schedule. My boss is accommodating but I can sense he is at the end of his rope.

If you don't mind, i'd like to continue to get help here. I've made a huge leap in 2 days, something i'd never imagined I would get close after fighting the machine for over a year.

@Pugsy:

Actually the hiccup sensations I was describing is something I recently felt before I even got the cpap. About two years ago it seemed like I was always fatigued and I noticed occasionally I would be standing or walking and breathe in air kind of funny where there is minor resistance sensation in the upper airway cavity...I also feel it a lot when i'm lying on my back on cpap.

@ Den, Thanks for the encouragement. Yes I think I can only do baby steps for now. I was incredibly stuck with my cpap that at some point the sleep therapist said a sure fire way would be to take the gamble and use it for the whole night even if uncomfortable. She assured me that if I am a properly functioning human being, I will eventually fall asleep. I was so very afraid though to try since I've been to the hospital many times due to severe insomnia/fatigue. I think I might even broke a record, 1.5 weeks without sleep. It was terrible, I was burning up but had no fever.

@49r: (Are you perhaps a native San Franciscan as well? ) If your sleep worsened for many years on cpap, what motivated you to stick with it?

[Pugsy]

You know it might help to know that not everyone had smooth sailing with cpap therapy.
One of our forum members RobySue fought her own battles with poor sleep made worse by the use of cpap (she has OSA). She wrote about it in her blog.
http://adventures-in-hosehead-land.blog ... er_19.html

We read about someone having smooth sailing and we think that we should to but it doesn't always work out that way. I didn't have the miracle overnight either and I just "knew" that I would have it because I "knew" I wouldn't have any issues and boy did life ever teach me a lesson in that I didn't know nearly as much as I thought I did. I understood the need for the machine and actually embraced it and I thought I had all the positive attitudes to guarantee immediate marked success but it wasn't to be the case. I had a couple of rewards initially once I got my pressures tweaked a little better but I didn't have near the success that I thought I would.

I didn't have a choice as to whether I could maybe not have it work out for me. My O2 levels were dropping to the low 70s.

We are here to offer moral support...a pat on the back or a good swift kick in the butt.
Sometimes not in that order.

Since your "hiccup" thing predates cpap therapy then it isn't the machine causing it. I have no idea what it might be though.

You are going to have some extra hard work to do though in terms of being hypersensitive to various stimuli and sorting out and reducing those things that make an already difficult situation even more work.
Your software reports aren't going to be of much help though. You are going to have to rely more on how you feel which makes it hard to have anyway to measure things. Subjective feelings are hard to quantify.
If it's any consolation..lots of people have great software reports, no leaks and nice low AHI scores and they still don't feel the good numbers either. Usually for other reasons unrelated to sleep apnea though.

[ChicagoGranny]

noisy CPAP

Here are some things to consider,

1. Make sure the machine setting for hose type (slimline or standard) matches your hose type.
2. Place the machine below the level of the top of the mattress.
3. Buy or make a hose cover to use nightly. https://www.cpap.com/productpage/snuggl ... cover.html

[Wulfman...]

Thanks everyone for your honest and supportive input. I suppose it is easy to get discouraged when it sounds like people fall in love with their cpap machine. It makes me think there might be something very wrong with me. Maybe I am overly sensitive than I should be. Sort of glad to hear though that there seems to be some relatable empathy on the rockiness with getting used to something foreign making noise and blowing down your throat.

You have all encouraged me to continue trying out the cpap. Last night was a major milestone but considering how fatigue and achy I am, I almost wanted to give up and convince myself it is better without the machine.

I don't think I can continue the whole night, I feel I might need breaks inbetween to catch up on sleep without being disturbed by cpap. I just feel terrible as I am constantly reminded by my physicians that you cant reap the benefits unless you use it when you sleep. I think I can start off with 4 hours most nights but not sure how I would get adjusted to trying it every night. But if this will in the long run prevent me from getting alzheimer or heart disease or at least cut the risk... it is definitely worth it.

How do you guys cope with the memory loss, cognitive dysfunction and fatigue from lousy cpap sleep? I've already cut down my work hours to a unreasonable schedule. My boss is accommodating but I can sense he is at the end of his rope.

If you don't mind, i'd like to continue to get help here. I've made a huge leap in 2 days, something i'd never imagined I would get close after fighting the machine for over a year.

@Pugsy:

Actually the hiccup sensations I was describing is something I recently felt before I even got the cpap. About two years ago it seemed like I was always fatigued and I noticed occasionally I would be standing or walking and breathe in air kind of funny where there is minor resistance sensation in the upper airway cavity...I also feel it a lot when i'm lying on my back on cpap.

@ Den, Thanks for the encouragement. Yes I think I can only do baby steps for now. I was incredibly stuck with my cpap that at some point the sleep therapist said a sure fire way would be to take the gamble and use it for the whole night even if uncomfortable. She assured me that if I am a properly functioning human being, I will eventually fall asleep. I was so very afraid though to try since I've been to the hospital many times due to severe insomnia/fatigue. I think I might even broke a record, 1.5 weeks without sleep. It was terrible, I was burning up but had no fever.

@49r: (Are you perhaps a native San Franciscan as well? ) If your sleep worsened for many years on cpap, what motivated you to stick with it?

Just pull up a chair and make yourself at home.
The vast majority of us are pretty friendly......most of the time......

To be honest, about a week after I started therapy, I decided to take one night off and see if I could tell the difference. Well, it wasn't really noticeable at that point, so I dutifully resumed my therapy........only to come down with one horrible cough about another week or two later. I was coughing so hard, I couldn't keep the mask on my face, so I had to suspend therapy for almost 10 days until my cough had subsided enough to keep it on again. I soon started to revert back to my daytime sleepiness and really feeling the effects of lack of therapy. I made up my mind I wasn't going to let that happen again and haven't.
It was also a time in my career that I was going through some long work hours and short nights.......some barely over 4 hrs.
But, I've faithfully used my machine(s) since then and have gradually increased my usage over the years. I retired in 2009 and have been trying to catch up on years/decades of lost sleep.

GOOD sleep is like an aphrodisiac and the more of it you get the more you want. Be careful about taking too much time off of your therapy. Your sleep therapist had a good point.

Even some of the forum members from way back in time have thought they could stop therapy for one reason or another, but most eventually come back and try to get their therapy restarted. I often wonder WHY or HOW they could do that, but it's not my place to be judgmental.......just try to help them get back in the groove.

Anyway, hang around and learn all you can about this and specifically YOUR therapy.


Den

.

[lindalam89]

Thank you again everyone for the support. Yesterday was terrible. I was so giddy because I thought I finally made progress with sleeping with the cpap. I didn't know how long I was actually sleeping but I was certain I slept maybe a few minutes on it which was considerable since for a year now i've been only dozing and waking a second later. Well I think I jumped too early for joy because when I went to bed I felt the rib pain that I usually get when I have many days of no rest. This caused my heart to pump faster to increase blood flow to the pain areas and I was easily reminded of the position I didnt want to be in again... basically the need to go to the hospital again for fatigue. That said, i knew there was nothing the hospital could do for me so I stayed in bed without the cpap to catch up on rest.

The rest was really no better but according to my actigraphy watch my deeper sleep came back. Those watches arent very reliable anyhow. But the fact that I felt worse on cpap, has made me want to give up yet again. Do I even have the strength to try another night. I dont know.. but I hate having cardiovascular like issues from lack of restful sleep. It's like a catch22... the cpap is suppose to help me sleep but it feels like it makes things worse.

@ Pugsy: Sometimes I feel like since my "apnea" is not severe like others here on the board, I feel I could forgo therapy and wait till it becomes a medical necessity as was in your case... but that would probably be very foolish. Sometimes I think of if I lost some weight, maybe I'll be normal like the rest of my family. But then I'm reminded that most of my events are clear airway obstruction... and honestly I feel my condition actually is causing me to gain weight even on a strict diet.

Thanks for sharing the blog with me. I think I came across it before. A lot of the suggestions I already take, such as using the bed only for sleep and sex...I sleep in a dark cool room for an example, and avoid blue light 4 hours before bed..

@Chicago Granny, I have my machine in the lower drawer below my bed. Bought a hose cover but It strangely amplified noise. My bf actually says the thing is so quiet he cant understand why i cant sleep on it. I told him i cant sleep unless it is virtually quiet...

@ Den,
Funny you mentioned the cold. The first day I got the machine, I caught the worse flu every. I blamed it on the apap, and convinced myself I would be causing respiratory problems if I used the thing... I now wash my machine almost everyday... though the instructions I got says something about different parts only require a wash once a week.

[Wulfman...]

Thank you again everyone for the support. Yesterday was terrible. I was so giddy because I thought I finally made progress with sleeping with the cpap. I didn't know how long I was actually sleeping but I was certain I slept maybe a few minutes on it which was considerable since for a year now i've been only dozing and waking a second later. Well I think I jumped too early for joy because when I went to bed I felt the rib pain that I usually get when I have many days of no rest. This caused my heart to pump faster to increase blood flow to the pain areas and I was easily reminded of the position I didnt want to be in again... basically the need to go to the hospital again for fatigue. That said, i knew there was nothing the hospital could do for me so I stayed in bed without the cpap to catch up on rest.

The rest was really no better but according to my actigraphy watch my deeper sleep came back. Those watches arent very reliable anyhow. But the fact that I felt worse on cpap, has made me want to give up yet again. Do I even have the strength to try another night. I dont know.. but I hate having cardiovascular like issues from lack of restful sleep. It's like a catch22... the cpap is suppose to help me sleep but it feels like it makes things worse.

@ Pugsy: Sometimes I feel like since my "apnea" is not severe like others here on the board, I feel I could forgo therapy and wait till it becomes a medical necessity as was in your case... but that would probably be very foolish. Sometimes I think of if I lost some weight, maybe I'll be normal like the rest of my family. But then I'm reminded that most of my events are clear airway obstruction... and honestly I feel my condition actually is causing me to gain weight even on a strict diet.

Thanks for sharing the blog with me. I think I came across it before. A lot of the suggestions I already take, such as using the bed only for sleep and sex...I sleep in a dark cool room for an example, and avoid blue light 4 hours before bed..

@Chicago Granny, I have my machine in the lower drawer below my bed. Bought a hose cover but It strangely amplified noise. My bf actually says the thing is so quiet he cant understand why i cant sleep on it. I told him i cant sleep unless it is virtually quiet...

@ Den,
Funny you mentioned the cold. The first day I got the machine, I caught the worse flu every. I blamed it on the apap, and convinced myself I would be causing respiratory problems if I used the thing... I now wash my machine almost everyday... though the instructions I got says something about different parts only require a wash once a week.

First of all, It's highly unlikely (or maybe impossible) for you to infect yourself with your own germs.
Also, many of us believe the old saying "That which does not kill us makes us stronger." by Friedrich Nietzsche.

We're exposed to whatever germs are in our dwelling, workplace or stores we shop at for far more hours what we spend breathing filtered air from a CPAP machine. Getting sick from our therapy equipment is counter-intuitive.

Just sayin'......


Den

.

[Julie]

I wonder if you've ever had an endoscopy (or at least a good going over) to see if you have acid reflux. So many of us have GERD and deal with it in different ways from raising the head of the bed on 5" blocks to using PPI's (no longer recommended though) and other things... certainly it can give you the regular hiccups, though what you described seems different. BUT, has anyone looked at your diaphragm for anomalies? That can cause hiccups and also mess with respiration. And whatever you do try to not back-sleep as it only provokes more apneas and maybe a lot of hypopneas.