Newb needs help. Exhaling issues

[Brad S]

I don't know how to read them very well yet either. I am learning but it is hard to figure out.
I am guessing from the zoomed in part that I was really asleep and these are real? Maybe someone can jump in and advise.
I know there are a bunch of events while I am going to sleep and I am pretty sure they don't count. I wish there was a way to edit those out and get a real count.
The pressure does go way up but there is a leak then too- Maybe has something to do with it?
BTW the toothbrush is just a plain soft toothbrush. No whitening or other stuff. Good point though.

[Iamstumped]

I don't know how to read them very well yet either. I am learning but it is hard to figure out.
I am guessing from the zoomed in part that I was really asleep and these are real? Maybe someone can jump in and advise.
I know there are a bunch of events while I am going to sleep and I am pretty sure they don't count. I wish there was a way to edit those out and get a real count.

Check out this video

https://www.youtube.com/watch?v=iX_ivhUyEnk

[Brad S]

Check out this video
https://www.youtube.com/watch?v=iX_ivhUyEnk

Great video! Thank you for sharing.

[Brad S]

Brought over from another thread....

If you’re falling immediately back to sleep Maybe that choking feeling you are getting is because it goes back and ramps up from whatever low level it was set at before? I can’t imagine falling asleep in five minutes that I have it on 4 cm grandson. Period I don’t know if yours is set for longer than that. But maybe that’s why you feel like you can’t breathe when you put the mask on?

My therapy is going backwards and I having a very hard time.
I had a friend take a close at my oscar charts. I am being told that the reason I am having trouble breathing with the mask is that I have UARS. Upper airway resistance syndrome. Basically I am expending considerable effort on every breath to get the air I need to satisfy my respiratory requirement. Feeling I am choking or not being able to get enough air. This makes me unconsciously pull the mask from my face. It's hard to breathe so I take it off. Not the answer to my problem, but when asleep the reaction makes perfect sense.

Is a bipap machine a better choice for UARS?

The information he gave me make perfect sense to me.
Yesterday afternoon I was so tired but I wasn't really sleepy. I tried to take a nap with the machine and hard a hard time. Last night I went to bed and it was a disaster. I had bad face leaks for the first time. I washed my mask yesterday morning and it was fine for the nap earlier. Nothing changed. I have the minimum pressure set to 9 with no ramp and EPR on 3. I tried and it lasted 26 minutes before I had a fit of rage and frustration from not being able to breathe. After I settled down and went back to bed I fell right to sleep without the mask. Woke up at 5:00, went to the bathroom and went back to bed. Put the mask back on and other than being tight from fiddling with it last night there were no face leaks and the breathing was as smooth as could be. No troubles at all. WTF is going on? I got up 33 minutes later to start the work day.

I feel terrible. I am so tired but I am not sleepy. My brain fog is getting worse again. I have no help from my doctor and I have to rely on friends for help.
What is so frustrating is that I know based on my sleep test the trouble my body has without the help and the damage that can happen because of it. My average oxygen levels were 88% or less with a minimum of 60% (Sixty)
I know I need help but I am all alone as far as medical professionals having any interest in me. I will write email to my doctor again later today. I have a phone appointment next Monday. I know I won't get a reply, but at least he will have information before the phone call.
Not much point to writing all of this anymore. It is turning into more of a journal record or a place to vent. I am very tired, angry and frustrated.

[lynninnj]

Brad I am sooooo sorry to hear of your struggles.

I do not understand the subtleties of these issues and can not advise you.

The only thing I can offer is my empathy and encouragement. Don’t give up!
You will find answers.

I understand what you mean about not feeling like you have a professional on your side. But you do have this board and maybe someone has more extensive experience I can help you out here.

Good luck

[Pugsy]

Is a bipap machine a better choice for UARS?

Maybe...maybe not.
Let's talk about bilevel and not "bipap" just for clarity. BiPap is a marketing term for bilevel machines of which there are many different bilevel machines that can do many different things.

A bilevel machine (assuming just the regular bilevel and not one of the bilevels that do specialty functions like treating centrals)
would allow a greater than 3 cm difference between inhale and exhale which MIGHT make exhaling easier for you but bilevel itself isn't necessarily better for UARS.
To really identify UARS a person needs to have an in lab sleep study with a Pes device and to find optimal pressures there needs to be a sleep study using cpap/whatever pap again with Pes device. You can't rely on auto adjusting mode of any machine to find optimal UARS pressures....they were designed to fight OSA and not UARS.

Historically from the people with documented UARS (confirmed with a Pes device sleep study) that have come here and shared their story....a lot more pressure is needed to deal with UARS airway issues than the machine will want to do.
One person comes to my mind where the auto adjusting mode only wanted to go to 8 cm and the sleep study with cpap and Pes device came up with a pressure need of 13 cm to resolve the UARS issues.


'

[Brad S]

Is a bipap machine a better choice for UARS?

Maybe...maybe not.

Thank you for the helpful info. I don't mean that to sound snarky. I sincerely mean I do understand. There are so many factors and until I figure this out and have the proper diagnoses, maybe... maybe not is very helpful information along with all of the other considerations.

[Pugsy]

Is a bipap machine a better choice for UARS?

Maybe...maybe not.

Thank you for the helpful info. I don't mean that to sound snarky. I sincerely mean I do understand. There are so many factors and until I figure this out and have the proper diagnoses, maybe... maybe not is very helpful information along with all of the other considerations.

People with documented UARS do very well with fixed cpap pressures and don't really need the bilevel part UNLESS they maybe need a much higher pressure to deal with the UARS and then they also need the added exhale relief from a comfort aspect of things....but not so much because bilevel itself is necessarily better for UARS.
There are people using pressures in the upper teens that don't need or particularly like exhale pressure reduction. Go figure that one but it's true.

Now there was one doctor who went out on a limb and suggested that people with UARS probably needed a bilevel with ASV capabilities....whole different animal from the regular bilevel machines but mainstream didn't always agree with him and insurance is going to balk at paying the dollars that ASV costs just for UARS (and in your case it's not a for sure certainty anyway). ASV machines will cost 4 or 5 times the price of cpap/apap. A very expensive experiment for sure and no guarantee that it will help anyway.

[clownbell]

Brad - you have mentioned wishing you could eliminate events that occured when you were awake, thereby generating a more accurate AHI. There is a way to do that. Maybe not ideal but "a" way.
1 - On the left side of the screen, click on the "Events." tab.
2 - Review the central, obstructive and hypopnea categories; count the number of false events and total events.
3 - Subtract false events from the total events to deetrmine the number of "real" events.
4 - Divide the number of real events by the number of hours you slept (converting hours-and-minutes into a decimal format (example: 7 hours 23 minutes is 7.38 hours).

This will provide a "real" AHI. It won't change what the machine has recorded and reported, and it won't change your OSCAR numbers or charts. But you will have the satisfaction of knowing the real number. If you so desire, you can record the "real" AHI in OSCAR, using the "Notes" tab to the right of the "Events" tab.

I congratulate you on having the fortitude and perseverance to deal with this. You will be rewarded.

[Brad S]

Total AHI 16.14 Total Time 02:51
Session 1 AHI 13.77 22:59 to 00:02 1 hour 1 minute
Turned on the heated tube to 68° because the incoming air has felt really cold. I hate breathing the hot air, that is why I turned the heated tube off to start with but it has been very cold in the bedroom the past few nights. Humidity still set to 4.
Tried 3" cervical collar again. This time slept sitting up with three pillows to see of that makes a difference. Very restless but slept. Woke up to mask leaking and pressure on machine was 14.0 I couldn’t get leaks to stop without holding the mask on my face with my hand. Heated tube setting seems to be ok.
2" cervical collar coming today.

Session 2 AHI 22.22 00:25 to 1:46 1 hour 21 minutes
Switched to N30 mask and changed the machine mask setting to nasal to see if I could use it. Didn’t seem to have too much trouble but I don’t think I slept at all. Took off the mask out of frustration of not being able to sleep and I think I fell right to sleep.

Session 3 AHI 4.14 4:59 to 5:28 29 minutes
Woke up and tried the N30 again this time I used one pillow and tried sleeping on my side. I think I slept for a few minutes and my wife woke me up telling me my mask was leaking.

I am so tired. I need sleep. Brain fog is returning. I am worried what is happening to my body if I sleep without the machine based on my sleep study oxygen levels. For the first time ever, I am starting to dread going to bed. Unless I have been sick or something, I have NEVER, and I mean never had trouble falling asleep with very few exceptions
BLAH!

[lynninnj]

Brad, did you do better the last few nights?

[Brad S]

Brad, did you do better the last few nights?

Hi Lynn- Thank you for asking.
We rented a AirBnB for the weekend and took the family to celebrate my granddaughters 4th birthday at the North Pole.
Interesting stuff going on here... to me anyway.
Our bedroom had a super fantastic bed. It was so good that when I went to bed Friday I feel soundly asleep before I could even put my mask on. It was the best night sleep I have had in many years.

The first oscar shot is from Saturday night at the AirBnB. Made sure to put my mask on as I got into bed. Slept great! 6:29 is the longest I have been able to sleep with the mask on.
The second is from last night at home. I made it longer, 6:42, but it was a very restless night. I woke up last night feeling like I couldn't breathe and I thought I was getting no air. I put my hand in front of my mask and felt the air venting out the front and managed to work through it and go back to sleep without freaking out. I will turn the heated tube down to the next lowest setting tonight to see if that helps.
I am able to breathe so much better with the F&P Evora mask. I still have trouble with the warm air but I am getting it figured out, at least for right now.
I still don't know how to understand these charts.
I am still using with the 2" cervical collar. It seems to help. Not perfect and still figuring that out and will post more in Oday's thread later.

I have a phone doctors visit this morning, I am curious if he will even have any comments about my struggles or just tell me to hang in there, again.

[lynninnj]

Brad, did you do better the last few nights?

Hi Lynn- Thank you for asking.
We rented a AirBnB for the weekend and took the family to celebrate my granddaughters 4th birthday at the North Pole.
Interesting stuff going on here... to me anyway.
Our bedroom had a super fantastic bed. It was so good that when I went to bed Friday I feel soundly asleep before I could even put my mask on. It was the best night sleep I have had in many years.

The first oscar shot is from Saturday night at the AirBnB. Made sure to put my mask on as I got into bed. Slept great! 6:29 is the longest I have been able to sleep with the mask on.
The second is from last night at home. I made it longer, 6:42, but it was a very restless night. I woke up last night feeling like I couldn't breathe and I thought I was getting no air. I put my hand in front of my mask and felt the air venting out the front and managed to work through it and go back to sleep without freaking out. I will turn the heated tube down to the next lowest setting tonight to see if that helps.
I am able to breathe so much better with the F&P Evora mask. I still have trouble with the warm air but I am getting it figured out, at least for right now.
I still don't know how to understand these charts.
I am still using with the 2" cervical collar. It seems to help. Not perfect and still figuring that out and will post more in Oday's thread later.

I have a phone doctors visit this morning, I am curious if he will even have any comments about my struggles or just tell me to hang in there, again.

I am glad you are seeing at least what it COULD be like for you, so that you don't give up hope.

On my pressure range thread, I have been learning a lot more about how to read the charts. I will be posting my sleep hq for last night which was a decent sleep with 10 arousals. (I like that better than AHI. lol)

That said, give a look because I am seeing something with my chart that I also see in yours and I want to ask Pugsy about it. (And whomever else feels secure in their knowledge of how to answer.)

[ozij]

Somehow, almost everybody sleeps so much better on vacation....

I notice, though, that your "back at home" night had far more leaks than the vacation night. Different pillow? Different placement of the CPAP leading to different hose management? Chicken and egg question, in that you may have leaked as a result of your restlessness, or have become restless because of the leaks?

[Brad S]

Somehow, almost everybody sleeps so much better on vacation....

I notice, though, that your "back at home" night had far more leaks than the vacation night. Different pillow? Different placement of the CPAP leading to different hose management? Chicken and egg question, in that you may have leaked as a result of your restlessness, or have become restless because of the leaks?

Part of the difference is physical but may very well be mental as well. I HATE my bed. Replacement is definitely in the plans. New, quality beds are so expensive and more than I spent on my first several cars (back in the '70's) We are just waiting for the right time. A good nights sleep is priceless I get it for sure, but so is a roof over my head.
The bed on vacation was a perfectly soft cloud. My bed, well, is as hard as a rock and no support on the edges any more. I wake up with sore butt cheeks from trying not to roll off while I am sleeping.
I believe the leaks at home are from changing positions and trying to get comfortable over and over again.