Kinda lost - UARS

musicfreak · Post by **musicfreak** » Mon Jun 01, 2020 4:29 am

@Aprilia

I have UARS too. I'm amazed and envious that you have adjusted to therapy right away with no problems. I'm still struggling many months later and can only manage to keep a mask on for 3 hours or less. Some nights I give up before I fall asleep because it's keeping me awake. In fact I'm up now at 3:30am because I couldn't fall asleep with the mask on. I've tried 3 types. Everything is noisy or claustrophobic.

Just totally envious you adapted so well. Good luck with your treatment.

Aprilia · Post by **Aprilia** » Wed Jun 03, 2020 4:59 pm

Guys I’m noticing that it’s been 3 days that the leakage has significantly increases. It’s worse at around 3am, so much that it wakes me up :/
I don’t know what I’m doing wrong -_- my mask seems correctly in place though.

Dog Slobber · Post by **Dog Slobber** » Wed Jun 03, 2020 5:50 pm

Fit your mask while laying down
Try learning a new sleeping position
Consider a mask liner
If side-sleeping, hang mask over pillow
Sometimes masks are too tight
Is the leaking associated with an increase in pressure?
Mouth opening, try a chinstrap
Wipe wash immediately before going to bed, careful about facial products you use
Consider a different mask

Aprilia · Post by **Aprilia** » Thu Jun 04, 2020 6:50 pm

musicfreak wrote: ↑
Mon Jun 01, 2020 4:29 am
@Aprilia

I have UARS too. I'm amazed and envious that you have adjusted to therapy right away with no problems. I'm still struggling many months later and can only manage to keep a mask on for 3 hours or less. Some nights I give up before I fall asleep because it's keeping me awake. In fact I'm up now at 3:30am because I couldn't fall asleep with the mask on. I've tried 3 types. Everything is noisy or claustrophobic.

Just totally envious you adapted so well. Good luck with your treatment.

I’m sorry it’s difficult for you. Honestly I’m so tired that I fall asleep in less than 5 minutes even with the mask on. I just hope it will make me better on the long run. Which mask did you try ?! Are you breathing through your mouth ?

Aprilia · Post by **Aprilia** » Thu Jun 04, 2020 6:54 pm

@dog slobber

I’m not using wipes I’m cleaning my mask with soap and water, is it okay for me to wear it when it’s still wet?
The leakage is not linked with a pressure increase no.
I tried adjusting it while laying down tonight it was better but still a lot of leakage.
The leak is at my nose, the air blows in my left eye :/ I’ll try adjusting it again everyday to see if it helps.
Thanks for the suggestions.

zonker · Post by **zonker** » Thu Jun 04, 2020 6:58 pm

Aprilia wrote: ↑
Thu Jun 04, 2020 6:54 pm
@dog slobber

I’m not using wipes I’m cleaning my mask with soap and water, is it okay for me to wear it when it’s still wet?
The leakage is not linked with a pressure increase no.
I tried adjusting it while laying down tonight it was better but still a lot of leakage.
The leak is at my nose, the air blows in my left eye :/ I’ll try adjusting it again everyday to see if it helps.
Thanks for the suggestions.

wipes will help prolong the life of your mask if used instead of soap and water.

Dog Slobber · Post by **Dog Slobber** » Thu Jun 04, 2020 7:40 pm

Aprilia wrote: ↑
Thu Jun 04, 2020 6:54 pm
@dog slobber

I’m not using wipes I’m cleaning my mask with soap and water, is it okay for me to wear it when it’s still wet?
The leakage is not linked with a pressure increase no.
I tried adjusting it while laying down tonight it was better but still a lot of leakage.
The leak is at my nose, the air blows in my left eye :/ I’ll try adjusting it again everyday to see if it helps.
Thanks for the suggestions.

I've moved on from a mask to nasal pillows. But when I last wore a mask, I used to wipe my cushion and face with a baby wipe just before going to bed.

Okie bipap · Post by **Okie bipap** » Fri Jun 05, 2020 9:11 am

zonker wrote: ↑
Thu Jun 04, 2020 6:58 pm
wipes will help prolong the life of your mask if used instead of soap and water.

I clean our equipment once a week with soap and water. The mask frames are three years old and the last cushions I changed out were over a year old. The only part of the mask that wasn't over a year old is the head gear which I change about every six months. I change the filters in the machines every month or two, depending on how they look. I really don't know if I would want things to last too much longer.

zonker · Post by **zonker** » Fri Jun 05, 2020 11:00 am

Okie bipap wrote: ↑
Fri Jun 05, 2020 9:11 am
I really don't know if I would want things to last too much longer.

well, we certainly want YOU to last as long as possible, sir!

pardon my forgetting, but you're getting your supplies through medicare, aren't you? i'm not so i'm somewhat obsessed with making my out of pocket expenses few and far between.

Okie bipap · Post by **Okie bipap** » Fri Jun 05, 2020 7:16 pm

Yes, we do get our supplies through Medicare. We also have Tricare for Life which pays for the Medicare deductable amount, so our supplies cost us nothing out of pocket. Even so, I don't see any reason to change mask parts simply because I don't have to pay for them. I was always taught to use things up before replacing or discarding them. We never had a lot when I was growing up, but we never felt like we were poor. Then twenty years in the military as an enlisted man raising three children, we had to make do with what we could afford to buy.

Aprilia · Post by **Aprilia** » Thu Jul 09, 2020 5:59 pm

Hi everyone,

I’ve been using my CPAP diligently for the past months so far I don’t see any difference with or without wearing it.
I still have some trouble with the fitting of my mask from 3am to 6am, it gets looser and I can ear it leaking. I don’t know why.

Also, I’m wondering why some of my apnea are so long, it’s often between 12 and 20 seconds and even went to 36 sec

Also in some instances like the picture below, I don’t see the cpap increasing the flow to push me to breathe ... why?!

Also the circle I traced on the screenshot, is it a breathing when I’m awake ?

Hope everyone is having a great summer so far.

Dog Slobber · Post by **Dog Slobber** » Thu Jul 09, 2020 6:18 pm

Aprilia wrote: ↑
Thu Jul 09, 2020 5:59 pm
Hi everyone,

I’ve been using my CPAP diligently for the past months so far I don’t see any difference with or without wearing it.

The changes for me were subtle, never had a single eureka day where everything changed, Then I realized:

I don't nerd daytime naps anymore
I don't get up to pee any more
My insomnia has gone away
I am waking up before the alarm clock

And you're not causing further harm to your body.

I still have some trouble with the fitting of my mask from 3am to 6am, it gets looser and I can ear it leaking. I don’t know why.

Fit your mask while laying down, and our muscle tone changes depending on sleep position.

Sounds like you might need to tighten it up a bit. Consider a different type or size.

Also, I’m wondering why some of my apnea are so long, it’s often between 12 and 20 seconds and even went to 36 sec
Also in some instances like the picture below, I don’t see the cpap increasing the flow to push me to breathe ... why?!

Also the circle I traced on the screenshot, is it a breathing when I’m awake ?

Hope everyone is having a great summer so far.

You may or may not be awake, but I'm not sure that's a "real" apnea. It could just be you rolling over or changing position.

The rule of thumb I use when looking at my breathing patterns is: If there are irregularities, before the apnea it's likely not real. If there are irregularities after, it likely was real.

Aprilia · Post by **Aprilia** » Thu Jul 09, 2020 6:30 pm

I’ll try adjusting the mask again. I don’t know what happens in the middle of the night to make me loose the fitting.

When you say irregularities, do you have a screenshot so O can look if there are any ?

Dog Slobber · Post by **Dog Slobber** » Thu Jul 09, 2020 6:33 pm

Aprilia wrote: ↑
Thu Jul 09, 2020 6:30 pm
I’ll try adjusting the mask again. I don’t know what happens in the middle of the night to make me loose the fitting.

When you say irregularities, do you have a screenshot so O can look if there are any ?

What you circled, I would consider an irregularity, basically a break in the pattern.

I'll see if I can dig up an example.

Dog Slobber · Post by **Dog Slobber** » Thu Jul 09, 2020 7:17 pm

Here's a couple examples from my own charts.

The top one is likely a "real" apnea.

The bottom one likely a false positive.

: Apnea_v_False.png (136.45 KiB) Viewed 871 times

Kinda lost - UARS

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