Need Help Acclimating (UARS)

[Julie]

IF you use Cpap and IF you don't have leaks and IF life were perfect... but it's not, so I do post it to newbies who should at least know about it.

[Wulfman...]

And whatever you do try to not back-sleep as it only provokes more apneas and maybe a lot of hypopneas.

Oh, for goodness sakes. I cringe every time I see you post that and you post it often.

If you are using CPAP and have the CPAP process tweaked properly, sleeping on your back is not a problem.

I hope you will quit trying to scare people who are new or are having problems. You may be causing them unnecessary difficulties.

Not everyone has their CPAP therapy tweaked properly........and often that's why they're HERE.......because it's NOT.


Den

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[Julie]

[lindalam89]

Hi Julie,

I have checked with possible acid reflux. My doctor says I dont have anything to be worried about. I also realized the hiccup sensation is actually more like a snort.

I guess that's not too terribly important right now.

@ the other posts: You know I've come to realize for whatever reason some people acclimate to cpap quickly, others just need more time and many others also never are able to acclimate. Like my psychiatrist said, the human body is a mystery, we may know a lot through research but everyone is unique and reacts differently.. and sometimes in opposite ways.

I like to back sleep. I fall asleep faster, which means a lot for someone who has almost 3 hour long sleep onsets... but I also know it increases AHI. That's why I decided to stick with the cpap, because it would allow me to sleep on my back, whereas if I decided to experiment with positional therapy...I would have to give up supine sleeping.

[Susie Kay]

And whatever you do try to not back-sleep as it only provokes more apneas and maybe a lot of hypopneas.

Oh, for goodness sakes. I cringe every time I see you post that and you post it often.

If you are using CPAP and have the CPAP process tweaked properly, sleeping on your back is not a problem.

I hope you will quit trying to scare people who are new or are having problems. You may be causing them unnecessary difficulties.

Strangler, I agree and have personal experience with this.

After reading this here, I started sleeping my side. It caused shoulder pain and gassing. This went on for some months, and then I had a follow up appointment with the doctor's assistant. I complained to her, and she told me to go back to sleeping on my back because they had the pressure set so I could sleep on my back.

I sleep on my back now, and everything is so much better.

We do need to be careful what we are telling people here. Some of us were naive when we started and take these things seriously.

[49er]

And whatever you do try to not back-sleep as it only provokes more apneas and maybe a lot of hypopneas.

Oh, for goodness sakes. I cringe every time I see you post that and you post it often.

If you are using CPAP and have the CPAP process tweaked properly, sleeping on your back is not a problem.

I hope you will quit trying to scare people who are new or are having problems. You may be causing them unnecessary difficulties.

Strangler, I agree and have personal experience with this.

After reading this here, I started sleeping my side. It caused shoulder pain and gassing. This went on for some months, and then I had a follow up appointment with the doctor's assistant. I complained to her, and she told me to go back to sleeping on my back because they had the pressure set so I could sleep on my back.

I sleep on my back now, and everything is so much better.

We do need to be careful what we are telling people here. Some of us were naive when we started and take these things seriously.

Susie,

I agree with the concern about telling everyone to sleep on their side.

But in fairness, isn't it your responsibility to be very cautious of any medical advice received on the Internet and to do your own research?

Anyway, I am glad you are feeling better.

49er

[Mynah]

But in fairness, isn't it your responsibility to be very cautious of any medical advice received on the Internet and to do your own research?

So this forum give out bad advice and the senior members defend that?

This is one of the reasons I don't use the forum very often.

[Wulfman...]

But in fairness, isn't it your responsibility to be very cautious of any medical advice received on the Internet and to do your own research?

So this forum give out bad advice and the senior members defend that?

This is one of the reasons I don't use the forum very often.

The following disclaimer is posted at the bottom of every page.

"The information provided on this site is not intended nor recommended
as a substitute for professional medical advice."

Is there any part of that you don't understand?

This is a forum of USERS who exchange their ideas and experiences to try to HELP other users who have problems.
The "medical mafia" have fallen short over the years with their anticipated duties and we just try to provide whatever help we can. You want "medical" information? Go to your doctor. Much information IS available in various places on the Internet, but as "49er" was saying, some of it may not be totally factual or appropriate for anyone in particular. I don't believe "49er" was specifically speaking about this forum.

There is no "bad advice" typically given out on the forum. Only our own experiences and suggestions to users of what they may try to resolve their problems.

You don't HAVE to come here at all. And, if you do, take the advice with a grain of salt. Sort through what seems logical to you and disregard what doesn't. It's that simple.


Den

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[49er]

Thanks Den, you nailed it precisely about the points I previously made as I was speaking in general about the Internet and not specifically about this forum.

But in fairness, isn't it your responsibility to be very cautious of any medical advice received on the Internet and to do your own research?

So this forum give out bad advice and the senior members defend that?

This is one of the reasons I don't use the forum very often.

The following disclaimer is posted at the bottom of every page.

"The information provided on this site is not intended nor recommended
as a substitute for professional medical advice."

Is there any part of that you don't understand?

This is a forum of USERS who exchange their ideas and experiences to try to HELP other users who have problems.
The "medical mafia" have fallen short over the years with their anticipated duties and we just try to provide whatever help we can. You want "medical" information? Go to your doctor. Much information IS available in various places on the Internet, but as "49er" was saying, some of it may not be totally factual or appropriate for anyone in particular. I don't believe "49er" was specifically speaking about this forum.

There is no "bad advice" typically given out on the forum. Only our own experiences and suggestions to users of what they may try to resolve their problems.

You don't HAVE to come here at all. And, if you do, take the advice with a grain of salt. Sort through what seems logical to you and disregard what doesn't. It's that simple.


Den

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[KeepSmiling]

Linda,

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%.

I so have to respond to the Oxygen not being lower then 91%. I know mine stayed above 90% with no machine. But I can tell you, it does make a difference on how I feel when I do not use the machine because I fell asleep watching TV then could not move to get to bed.

Linda, what ever you do not give up. It is a trial and error to get the right mask for each individual. I think that is half the battle.

For the noise:

- I noticed you use a full face mask. The amara full view is similar to the Hybrid by Innomed that I use. I find it makes a lot of noise. The small nose prongs does not make the same amount of noise or at least I do not hear it as loud in my head. I did not notice if you tried other type of masks and what the noise level was.

- Do you notice a difference in the noise level or that rolling sound when you have your mouth closed.

- I would suggest soft foam earplugs (the ones with 30 something decibles), but I am not sure if that is safe or not. For me it only hides any small leak noise. The noise inside the Hybrid is still there.

- Is the hose new and tight around the tubing. It makes a big difference. After buying a new hose, I was asked if I actually had the machine on. I noticed a decline in noise, but not that much.


I am assuming the sleep lab evaluation told you have UARS. Did you get an autoCPAP to try out to see what pressure you needed. I know when setting up the machine as a CPAP the setting is the higher number needed to control events.

Have you tried sleeping with your eyes covered with something that lets no light in at all and see if that helps at all in your sleep.

I am wondering if where you got the machine would let you try a Resmed S9 Auto for a week or two and see how you feel on that one as well.




***

It has been a long time since I looked at data: I was surprised not to see CSA (Central Sleep Apnea) as one of the event flags. The way I read Clear Airway, I am assuming it has replaced CSA.

***

I never realized how much I enjoy sleeping on my back until I got my machine.

[KeepSmiling]

Linda,

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



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

.

Way to many events at 8.





The nights with less pressure used, I am wondering if you never got to a deeper sleep. I was looking at the pressure from the different nights. I felt it was all over the place, and I am wondering if extreme fatigue is giving the different pressures. Did you take any meds on any of those days, have any drinks etc.

I do not know if your mask has a minimum pressure level. I would suggest a range from 6 to 10 and see how that goes. I think it will be hard to judge on just one night or two nights since you have gone so long without sleep. I know one doctor who requests 2 week APAP titration (to diagnose the right pressure) for cases that are not straight obstructive apnea.

I am assuming your original scan showed UARS.

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.

I just wanted to repost the UARS issue. As soon as the SO2 oxygen goes to about 92-91/higher or lower the brain wants the person to breath. This is enough to disturb sleep.

I wonder if an Oximeter would help to figure out an effective sleep solution for people with UARS. Or maybe even a different type of machine just thinking out loud.

[Wulfman...]

Linda,

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



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

.

Way to many events at 8.





The nights with less pressure used, I am wondering if you never got to a deeper sleep. I was looking at the pressure from the different nights. I felt it was all over the place, and I am wondering if extreme fatigue is giving the different pressures. Did you take any meds on any of those days, have any drinks etc.

I do not know if your mask has a minimum pressure level. I would suggest a range from 6 to 10 and see how that goes. I think it will be hard to judge on just one night or two nights since you have gone so long without sleep. I know one doctor who requests 2 week APAP titration (to diagnose the right pressure) for cases that are not straight obstructive apnea.

I am assuming your original scan showed UARS.

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.

I just wanted to repost the UARS issue. As soon as the SO2 oxygen goes to about 92-91/higher or lower the brain wants the person to breath. This is enough to disturb sleep.

I wonder if an Oximeter would help to figure out an effective sleep solution for people with UARS. Or maybe even a different type of machine just thinking out loud.

Apparently you weren't paying attention to what Linda's REAL problem has been all along.......pressure probes and changes.
The pressure of 8 was a suggested starting point to get rid of the pressure probes and see how she did with truly straight pressure.


Den

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[KeepSmiling]

With UARS, I would suggest increasing the pressure by one to 9 and seeing if that is enough to keep the SO2 from falling and thus prevent the brain from waking up the body to breath.

[elixeus]

@lindalam89: [not trying to be off-topic, but replying to your OP]

My heart goes out to you. Seems like many doctors see RERAs as not significant to your treatment. Even my pulmonologist wasn't deeply concerned about me spending 20% of my time at less than 90% due to O2 desaturations, or the fact my PSG showed a very high RERA; at home showed RI that was above limit as well. I guess since they are less classifiable, they sometimes don't meet the criteria for treatment which in my mind is insane. It may not be doing the damage that a CA/OSA may cause because your brain catches it before it becomes a problem, but anything that disrupts sleep needs to be treated and can have adverse consequences on your health. I hope you are finding your answer you are looking for from the more experienced people here on the boards.

[KeepSmiling]

Linda,


It has been a long time since I looked at data: I was surprised not to see CSA (Central Sleep Apnea) as one of the event flags. The way I read Clear Airway, I am assuming it has replaced CSA.

I just wanted to correct myself. I should not have made the assumption that Clear Airway has replaced Central events.

***

I did not recognize SleepHead data before.