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ExhaustedMuggleMom
Unread post  Post subject: Lost my sleep doctor, trying to figure out next steps  |  Posted: Tue Sep 14, 2021 8:53 pm

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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I have been on pap therapy two times in my life now: The first was back in 2009 with a CPAP and I only lasted about 2 months before I gave up.

This time around I've been using my ResMed AirCurve 10 VAuto BiPAP for just over 2 years. While I definitely don't snore myself awake every night anymore, and I am "addicted" to sleeping with my nasal pillow mask on as I feel it helps me sleep better, I am still utterly and completely exhausted every single day of my life. I have Medicaid and it takes forever to get into a doctor, and twice I have asked the sleep center to schedule me a new appointment to go over my reports (once in January of 2021 and once in July), I have not been back to the sleep doctor since starting my therapy in August of 2019. Early September, I received notice that my sleep center has closed down and that there are currently no sleep clinics/sleep doctors in the entire town of Albuquerque, NM. So I started doing research on pressure settings and programming the ResMed myself. I am utterly lost.

I just found out about Oscar and this forum today. I have uploaded my SD card to Oscar and here are the "Statistics". I changed the PS from 10.0 over 6.0 to 10.0 over 6.2 about 2 nights ago to see if that made a difference. I have had 14-20 episodes per hour a night in the last two nights. So maybe that is helping. ???

Background/Personal Info

Age 51
5'8"
240 lbs
I have been a mouth breather my entire life (allergies and asthma).
"slight deviated septum" but every doctor I've ever seen says it's not enough to do surgery
I sleep on my side - I have NEVER been able to sleep on my back.
Currently wearing a Dream Wear Gel Pillow Cushion mask AND a chin strap AND I tape my mouth shut. I tried a full face mask and hated it. I still find myself with an open mouth from time to time. . . BUT when I notice it I am breathing through my nose, so I think at least I have trained myself to breathe through my nose while asleep. Maybe.

I am on Thyroid as I had mine removed in 2009 due to cancer
I am on Citalopram for depression
I am on Amlodipine for high blood pressure
I take one 81 mg aspirin per day too

I haven't had to take any allergy medication since starting to wear a mask when outdoors AT ALL since the Covid-19 pandemic began.

Any help would be appreciated. Thanks

Oh yeah - might help to put down the Rx:
S-10 Auto Bi PAP with an EPAP of 6, a PS 10, max IPAP 20

Apparently I was diagnosed with 47.33 episodes per hour during the sleep study: I was told about 60% of those were central. My lowest oxygen levels were 84% during non-REM sleep and 91% during dreaming.



https://imgur.com/a/tcW3HoO


Attachments:
File comment: My Oscar Data
Oscar data from September 14 of 2021 to post to CPAP forum.PNG
Oscar data from September 14 of 2021 to post to CPAP forum.PNG [ 54.48 KiB | Viewed 784 times ]
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Tue Sep 14, 2021 9:42 pm

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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I don't know if I'm posting enough info:

A couple of graphs from the overview tab of Oscar:

https://imgur.com/a/ct4SfOc


Attachments:
Graphs for cpap forum 2.PNG
Graphs for cpap forum 2.PNG [ 87.28 KiB | Viewed 774 times ]
Graphs for cpap forum 1.PNG
Graphs for cpap forum 1.PNG [ 100.34 KiB | Viewed 774 times ]
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Respirator99
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Wed Sep 15, 2021 1:38 am
User avatar

Joined: Mon Apr 27, 2020 1:06 am
Posts: 339
Location: Australia
PAP Mask: Resmed Airtouch F20
PAP Machine: Resmed AirCurve 10 CS Pacewave ASV
Pressure Setting: Min EPAP: 8.0 Max EPAP: 11.0 PS Min: 3.0 PS Max: 8.0

Online
Hi ExhaustedMuggleMom. Welcome to the forum.

Looking at the charts you have provided, I'm not at all surprised you're not getting restful sleep. You're getting a lot of apneas - but they're almost all centrals. Your settings are all wrong for this scenario. In fact, you probably should be using a different machine entirely. However, given the circumstances you've outlined, let's see if we can get this VAuto to do the job for you. If you're prepared to do a bit of experimenting we might be able to get you some better results, but be aware they will never be perfect with this machine.

Can I ask you to upload some daily pages from Oscar please? See the instructions on how to organise the charts. That will give us some more detail to work with.

Your EPAP is staying quite low, indicating that the obstructive apnea is well treated. Therefore set the max EPAP around 8.5 - no need to go higher than that for now. On the other hand I think the pressure support is far too high. Generally speaking, when people get central apneas caused by pressure (and when using autoset machines), we recommend minimising the difference between epap and ipap by turning off EPR. In the same way, I would like to try (just for one night) eliminating the pressure support by setting the machine to CPAP mode. Now this might give terrible results or it might help matters - I don't really know until we try. If you find that is causing you discomfort or breathing distress, revert to VAuto mode, but set pressure support to 4 (minimum).

Hopefully these changes will give you some improvement, or at the very least give us a better baseline to work from. No guarantees, but I don't think we can make it much worse. :)

_________________
Regards from Australia

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 16, 2021 10:29 am

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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Thanks for the welcome Respirator99.

Seriously, I am open to trying ANYTHING. I had two sleep studies done in a sleep lab at a University Hospital in the summer of 2019, got the ResMed in August, was supposed to go back for a follow-up in January and the week before my appointment, my father died back in Texas and I had to reschedule because I was going to have to be in that state for at least 2 weeks. My rescheduled appointment wasn't until April of 2020, and by then the pandemic had hit so they postponed me until -- well, I've never been able to get a new appointment since then.

So. Long story short, I am getting/have not gotten any medical help since I started my therapy.

This OSCAR and this forum feels like a lifeline and you have no idea how much I am grateful!!!

OK. I will try to upload some daily pages, and I will definitely try the CPAP mode for at least a couple of nights.


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 16, 2021 6:37 pm

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

Offline
I took screenshots of a few nights from the past few months to get a feel for myself as well as to post here. Hope they help? I also found by looking at my notes that in June - from the 15th to the 19th, I tried drinking 2 glasses of wine before bed to see if that helped. I'll have to go check tomorrow or later tonight to see if that week I had better numbers. However, I am not usually a wine drinker and don't know that I want to become dependent on such a thing.


(And, FWIW - I am having to put in a new SD card tonight. I made a change to my Trigger and Cycle (from Medium to High) on Tuesday night after watching a few LankyLefty videos, and apparently when I used OSCAR I forgot to write protect the SD card because my ResMed didn't record Tuesday or Wednesday nights. I was disappointed, because I did have fewer episodes the past two nights with that change and would like to see if they are both still full of central episodes. Oh well, lesson learned. )



OK. Tonight I will try CPAP mode with pressure at 4.0 (minimum). I am eager to see the results. I don't have to work tomorrow so it will be a good night to experiment.


Attachments:
Oscar Sat Aug 14.png
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Oscar Fri Jul 16.png
Oscar Fri Jul 16.png [ 87.56 KiB | Viewed 702 times ]
Oscar Thu Jun 17.png
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Oscar Fri May 14.png
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Oscar Sat Apr 17.png
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Respirator99
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 3:34 am
User avatar

Joined: Mon Apr 27, 2020 1:06 am
Posts: 339
Location: Australia
PAP Mask: Resmed Airtouch F20
PAP Machine: Resmed AirCurve 10 CS Pacewave ASV
Pressure Setting: Min EPAP: 8.0 Max EPAP: 11.0 PS Min: 3.0 PS Max: 8.0

Online
I've just seen your post and it's probably too late to tell you that 4cm pressure is likely too low. :( Anyhow, I'd be interested in how you went.

I looked up Albuquerque just now and see it's at quite a high altitude (by Australian standards, anyway). Altitude is a known contributor to central apnea, so I was wondering if you've experienced any difference at lower altitudes.

In any case you do have quite bad central apnea and it will be difficult to properly treat it with the VAuto. An ASV would fix it for sure, but they are expensive (~$4000) and the insurance companies will make you jump through hoops to get one. In the meantime we can do some experimenting and see if we can improve things for you.

_________________
Regards from Australia

* Download Oscar
* Oscar help
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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 5:41 am
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Joined: Wed Aug 02, 2017 8:01 pm
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PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirCurve 10 VAuto

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PS of 10 all by itself is pretty much guaranteed to cause centrals in just about everyone.

Were there centrals on the diagnostic sleep study of any substantial numbers?

PS of 10....how was this decided upon?

How did the fixed cpap at 4 cm experiment go?
Probably will see more OAs/hyponeas and that's okay as they are easily dealt with.
Mainly want to know about centrals/CAs right now.

_________________
I may have to rise but I refuse to shine.


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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 6:49 am
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So I reviewed your initial post and I see that it is mentioned 60% centrals which is significant.
I also am familiar with the restrictions that you are facing being on Medicaid for medical insurance.

To Respirator99....Medicaid is for the poor and often they get minimal care or poor care as it is considered a state insurance program. Medicaid patients are treated like the ugly step children and reimbursement rates are so low that a lot of doctors simply choose to not see Medicaid patients at all. I am very certain there are any number of sleep doctors or clinics where she lives but they won't accept medicaid patients. She could be seen but only if she pays out of pocket and if she could afford to do that she wouldn't be on Medicaid.
Medicaid will eventually pay for ASV once the need is proven but getting that need proven is darn near impossible if they can't find a doctor to even order ASV and start the process to get medicaid to pay for ASV.
Quite honestly it is a big black eye on the US how the poor are treated in terms of medical care. They frequently fall through the cracks.

I think I now understand the PS of 10 original thought but it was an wrong thought. I am still limited with my typing so won't go into that at this time but I think they were trying to make the VAuto function like ASV for centrals. Trying to take the cheaper way out. Unfortunately not only is it not possible it can actually make central numbers worsen.

Anyway, I have a lead on a ASV machine that wouldn't cost much should we need to move to ASV. I have a couple of ideas to try with the VAuto that might produce a miracle so might as well try them.

_________________
I may have to rise but I refuse to shine.


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 9:29 am

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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Y'all are going to be my godsend!! I am reading and re-reading every word.

So I think I will definitely want to continue to try CPAP only for a few more nights at least to see if last night was a fluke. I did have a bit of trouble falling asleep after I put my mask on as (#1) work last night was stressful and my relief was 30 minutes late and (#2) the pressure setting was so different than what I have used for almost 2 years now. And I did snore myself awake at least twice, which I haven't in a really REALLY long time. This morning as I was waking up but aware every single snore was in the top of my nose and not at all down in my throat. I found that interesting.

OK. So here is the OSCAR data from last night. CPAP with pressure set to 4. I agree that it felt like the pressure was too low. But I got decent results, no? What should I try for tonight?? TIA


Attachments:
Oscar 1st Night Trying CPAP screen scroll down 2.png
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Oscar 1st Night Tryiing CPAP screen scroll down 1.png
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Oscar 1st Night Trying CPAP instead of VAuto Sep 16.png
Oscar 1st Night Trying CPAP instead of VAuto Sep 16.png [ 92.54 KiB | Viewed 659 times ]
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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 9:34 am
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Joined: Wed Aug 02, 2017 8:01 pm
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PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirCurve 10 VAuto

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Try 6 cm fixed cpap mode tonight.
Increase more for comfort and flow limitations than AHI.

My first thought...holy crap...I didn't expect this at all.
I expected a truckload of OAs/hypones as well as a sizable number of centrals.

_________________
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 4:40 pm

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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Ok thanks - 6cm tonight it is.

I was really surprised too, so I am eager to see if it was a fluke of some sort. Maybe I actually didn't sleep at all during the night as I was thinking to much about it all? just kidding


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Respirator99
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 6:54 pm
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Joined: Mon Apr 27, 2020 1:06 am
Posts: 339
Location: Australia
PAP Mask: Resmed Airtouch F20
PAP Machine: Resmed AirCurve 10 CS Pacewave ASV
Pressure Setting: Min EPAP: 8.0 Max EPAP: 11.0 PS Min: 3.0 PS Max: 8.0

Online
Well I certainly wasn't expecting that result! I thought we'd see a significant decrease in centrals but an increase in obstructive apneas - we'd then need to balance out the central v obstructive as much as possible.

I agree with Pugsy - stay on CPAP for a few nights but increase the pressure for comfort and to manage flow limitations and snore. The caveat to this is that treating central apnea with a non-ASV can give very inconsistent results. Some good nights and some shockers. But this is a great start so let's build on the experience to date.

_________________
Regards from Australia

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Fri Sep 17, 2021 7:20 pm

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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Thanks you two.


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 8:39 am

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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I slept through my alarm this morning. I never ever do that! Was late to work but it was worth it. I slept 10 hours with very little interruption. I didn't think that was EVER going to be possible again. This is very very interesting.


Attachments:
Oscar 2nd night using CPAP - 6cm - screen scroll 2.png
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Oscar 2nd night using CPAP - 6cm - screen scroll 1.png
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Oscar - 2nd night using CPAP only - this time at 6cm.png
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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 9:31 am
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Joined: Wed Aug 02, 2017 8:01 pm
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PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirCurve 10 VAuto

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Save yourself some work. We don't need all those graphs. Your bottom imgage with
Events'
Flow rate
pressure
leak rate
Flow limitations
is all we need.

Another night with 6 cm fixed and lets see what happens.

_________________
I may have to rise but I refuse to shine.


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Respirator99
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 9:50 am
User avatar

Joined: Mon Apr 27, 2020 1:06 am
Posts: 339
Location: Australia
PAP Mask: Resmed Airtouch F20
PAP Machine: Resmed AirCurve 10 CS Pacewave ASV
Pressure Setting: Min EPAP: 8.0 Max EPAP: 11.0 PS Min: 3.0 PS Max: 8.0

Online
That's a great outcome (not being late for work). The big question now is "how do you feel?" If you feel rested and refreshed after that marathon sleep, then I'd suggest you leave the settings as they are for a few nights.

But if you want to try for further improvement then increase the pressure to 8 cm. This should reduce the flow limitations and residual snoring. The danger is that increasing pressure could trigger more central apnea. It's going to be a fine balance.

What we're doing is not in the manual, but if it works for you that's the main thing.

_________________
Regards from Australia

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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 10:12 am
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Joined: Wed Aug 02, 2017 8:01 pm
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PAP Mask: Bleep/DreamPort nasal mask
PAP Machine: ResMed AirCurve 10 VAuto

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If we still see some random sort of clustering of centrals late in the night on several reports we probably need to make sure they are real asleep centrals and not arousal/awake centrals.
So watch the videos here to get an idea how to zoom in and look at the flow rate/breaths up close.
http://freecpapadvice.com/sleepyhead-free-software

Just get sort of familiar with the process for now. I don't want for you or me to have to do the extra work unless it is needed and for one night with a handful of centrals I don't think it is needed.

_________________
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 10:41 am

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

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Pugsy wrote:
Save yourself some work. We don't need all those graphs. Your bottom imgage is all we need.



got it - thanks


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 10:50 am

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

Offline
I'll watch those videos and keep doing research. I tried learning all I could back in 2019 but at the time I was sick and exhausted all the time with a very stressful job out in the real world and I just couldn't do it.

Now I work from home and have gotten my thyroid levels under control AND already feel a bit better after the last few nights. I'm determined to learn all I can about apneas and CPAPs/BIPAPs, etc now. I'm fed up with being at the mercy of doctors.

Lived in Texas my whole life up until 2017 and have never been able to afford insurance (I had a work-provided AFLAC plan for about 10 years and that was it. But thankfully it gave me enough to help with my cancer scare) . Moved to Albuquerque and was able to get on Medicaid and it's almost as fruitless, but at least I was able to get a real sleep study done. In 2009 when I had thyroid cancer the only thing I could afford was an at-home study that showed no OSA at all. My family and I were dumbfounded. I have snored like a freight train my entire life. My parents and ex spouse and children have all complained about it for forever. Anyway, my endocrinologist gave me an RX for a CPAP anyway even though the sleep test came back negative and she tried to guess at my settings as her late husband had been an otolaryngologist and she had been interested in how bad sleep could be a huge cause of illness. That go-around with the CPAP was a disaster., but she did her best. I think I used it for like 4 months and then gave up.

Anyway, long story short - I'm here to learn and experiment. Y'all have no idea how excited I am to be here now.

For the moment, I'm going to stay at 6 for about a week to get a good feel of how that helps. And I'll go watch those videos now. Have a good weekend everyone. :D


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 11:10 am

Joined: Tue Sep 14, 2021 7:46 pm
Posts: 36
Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
PAP Machine: ResMed AirCurve 10 VAUTO
Humidifier: I have one but don't know what kind
Pressure Setting: S-10 Auto BiPAP with an EPAP of 6, PS 10, max IPAP 20

Offline
Respirator99 wrote:
What we're doing is not in the manual, but if it works for you that's the main thing.


the only doctor I ever had who I felt listened to me - my endocrinologist back in Texas - she used to say the same thing.


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