Frustration

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
gary1001
Posts: 47
Joined: Thu Nov 29, 2012 7:32 pm

Frustration

Post by gary1001 » Tue Nov 25, 2014 6:33 pm

Hi All,

I’ve been using APAP for about a year and half with some success but still feel really quite frustrated that I'm not sleeping well or restoratively. I've been around these boards for about the same length of time and have picked up quite a lot of good information and through I’d lean on the experience here in terms of next steps.

Basically, I’ve had a rough time with health issues. Fit and healthy a few years ago, contracted a gastro virus in India, lost 25kg, developed pneumonia and heart infection and then end up in a wheelchair due to muscle wasting. I’ve manage to claw back a lot in the last 6 months (regained the weight and are putting on muscle with yoga/ exercise) however non-restorative sleep is still holding me back.

In terms of apnea, I have only performed a home sleep study that showed a moderate rate of 25 events per hour. For right or wrong, I brought a APAP machine secondhand (resmed S9 Auto) and addressed the problem on my own (insurance and delays it he public system were issues).

I started with wide open settings 4-20cm and are now running 7-9cm with 2 ERP. While this helps (I wake gasping without it) there is something missing.

I’ve posted a graphs from the last couple of night however these are the key points that think are contributing:
  • Flow limitation is high despite AHI being low.
    Nasal congestion is bad. I rise the sinus often however seem to have an ongoing infection.
    Flow patterns seems to have a lot of oscillation. Disappearing at one point and increasing another.
    Tidal volume seems low. I’m 6’2 and use to have a large lung capacity however breathing at night is shallow.
    The more uneven the flow patterns are and more changes in tidal volume, the worse I feel the next day.
    Leaking from the mouth was a problem however it is virtually fixed with using more tape to close the mouth at night.
    I recently read the article on UARS and the immune system. Some research seems to point to UARS being a cause factor in chronic infections.
In terms of my situation, I moved country 6 months ago to New Zealand and are basically starting again with medical help. I do have an appointment with a public sleep clinic but due to whatever my referral said (new GP did not understand the referral system) this does not cover a lab sleep study or new equipment. I have contact a local support group and are trying to get publicly a funded study. Note, due to not working, I do not have funds available.

What I’m hoping for in this post is to get advice to change setting on my current resmed S9 Auto based on the data and to generally point out any factors that could improve sleep. A sleep study is obvious however I need to work within public funding and do what I can for now.

Thank you in advance for your help.

Gary

Images folder: https://drive.google.com/folderview?id= ... sp=sharing
Last edited by gary1001 on Wed Nov 26, 2014 1:24 pm, edited 1 time in total.

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Julie
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Joined: Tue Feb 28, 2006 12:58 pm

Re: Frustration

Post by Julie » Tue Nov 25, 2014 7:36 pm

I'll let others more experienced with your machine, etc. respond to other things, but I wonder if your nasal congestion could be due to having the humidifier set high when it may not be needed because of local conditions. Have you tried turning it down (or even off)?

gary1001
Posts: 47
Joined: Thu Nov 29, 2012 7:32 pm

Re: Frustration

Post by gary1001 » Tue Nov 25, 2014 7:47 pm

Yea, I could give that a go. It was trial and error. I found high humidity with aromatherapy was had the best results - but that was a while ago.

Your right tho, nasal congestion defiantly impacts treatment. I'll add that to a list of steps to take.

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70sSanO
Posts: 264
Joined: Thu Apr 07, 2011 1:44 pm
Location: SoCal

Re: Frustration

Post by 70sSanO » Wed Nov 26, 2014 3:08 pm

Have you considered a full face mask?

I know a lot of people will do almost anything not to use one, but I started out using ffm years ago and I have no desire to go to a nasal mask. It sure beats trying to fight nasal congestion.

John
AHI: 2.5
Central: 1.7
Obstructive: 0.3
Hypopnea: 0.5
Pressure: 6.0-8.0cm on back with cervical collar.
Compliance: 15 Years

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Julie
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Joined: Tue Feb 28, 2006 12:58 pm

Re: Frustration

Post by Julie » Wed Nov 26, 2014 4:18 pm

You may still have left over problems from when you were sick - it can take a long time for all of you to be 100% again. Have you thought of raising your low pressure by 1-2 cm to see how that goes? Also, you could have the upper one higher with no real consequences. And if you sleep on your back, do whatever you can not to because it provokes more apneas than any position. You might want to ask your MD for new lab work and/or lung function testing to see about your recovery status.

gary1001
Posts: 47
Joined: Thu Nov 29, 2012 7:32 pm

Re: Frustration

Post by gary1001 » Wed Nov 26, 2014 6:22 pm

70sSanO wrote:Have you considered a full face mask?

I know a lot of people will do almost anything not to use one, but I started out using ffm years ago and I have no desire to go to a nasal mask. It sure beats trying to fight nasal congestion.

John
Good idea, haven't considered that. Your signature mentions a collar, I've been trying a neck pillow with minor success. I think the muscle wasting and neck support are an issue. What collar did you settle on?
Julie wrote:You may still have left over problems from when you were sick - it can take a long time for all of you to be 100% again. Have you thought of raising your low pressure by 1-2 cm to see how that goes? Also, you could have the upper one higher with no real consequences. And if you sleep on your back, do whatever you can not to because it provokes more apneas than any position. You might want to ask your MD for new lab work and/or lung function testing to see about your recovery status.
Good point. Its a catch 22, you need to sleep to fully recover but sleep is effected by the state of the body. I've had quite a few labs recently and nothing other than inflammation is showing up. I didn't ask for lung function test - I might look at this a bit closer. I'll increase my pressure tonight 9-12 and see how that feels. Thanks.

I've posted a new image from last night. I raised the pressure up to 8-10. As you can see, the flow wave seems very much like a shark tooth - all over the place. This pattern when it occurs and for how long generally determines how I feel the next day - just wish I new what causes it.
Last edited by gary1001 on Wed Nov 26, 2014 6:30 pm, edited 1 time in total.

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Julie
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Re: Frustration

Post by Julie » Wed Nov 26, 2014 6:29 pm

You can get a soft cervical collar at most drugstores I think, quite inexpensive, and it helps keep your head off your chest so your airway stays open.

gary1001
Posts: 47
Joined: Thu Nov 29, 2012 7:32 pm

Re: Frustration

Post by gary1001 » Thu Nov 27, 2014 2:41 pm

Posted a pic from last night. Pressures 9-12cm. Unfortunately, same irregular breathing and feel pretty rotten in the morning.

I'll try and track down a collar today.

gary1001
Posts: 47
Joined: Thu Nov 29, 2012 7:32 pm

Re: Frustration

Post by gary1001 » Tue Dec 09, 2014 4:49 pm

Over the last few weeks I’ve been monitoring what helps and what hinders. I believe the S9 Auto is almost 100% effective at treating mild apnoea, however there is some kind of UARS that is really causing the non-restorative sleep.

Image

Image

Image

Comparing the first two pics, you can see at the same pressure I experience periods of irregular flow rate and tidal volumes. In picture one, the rate and volume is normal then in picture two, flow rate limitations occur and the regular pattern is disrupted. In Pic three you can see the patterns alternate.

I believe breathing gets worse when I enter deeper sleep when the muscles relax. This probably why I feel so rough in the morning as I’m being woken out of deep sleep every few minutes.

Other points that matter are:
Using a collar and breath right strips definitely help. I think they keep the airway open better thus less breathing restriction.
The EPR function impacts on the inhalation pressure support needed. The EPR cuts into the pressure needed at the start of breathing.
I can’t tolerate much more than 10cm. Anymore and it fills my stomach with air or I rip of the mask at night.

I’m going to try a Bi-Level machine with greater inhalation pressure as well as a full face mask (leaks from the mouth as still an issue)

I guess I’d been keen to hear any comments or if anyone else has treated UARS using Bi-Level and if so, what machines/ brands worked.

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palerider
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Location: Dallas(ish).

Re: Frustration

Post by palerider » Tue Dec 09, 2014 6:13 pm

gary1001 wrote: The EPR function impacts on the inhalation pressure support needed. The EPR cuts into the pressure needed at the start of breathing.
I’m going to try a Bi-Level machine with greater inhalation pressure as well as a full face mask (leaks from the mouth as still an issue)
bi-level is just a souped up EPR.

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gary1001
Posts: 47
Joined: Thu Nov 29, 2012 7:32 pm

Re: Frustration

Post by gary1001 » Tue Dec 09, 2014 7:34 pm

palerider wrote:bi-level is just a souped up EPR.
It just felt like the EPR didn't really detect when I was breathing in. How does Bi-flex from respironics compare? More sensitive at the switch from out to in?

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palerider
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Location: Dallas(ish).

Re: Frustration

Post by palerider » Tue Dec 09, 2014 8:05 pm

gary1001 wrote:
palerider wrote:bi-level is just a souped up EPR.
It just felt like the EPR didn't really detect when I was breathing in. How does Bi-flex from respironics compare? More sensitive at the switch from out to in?
*flex is a different thing, it's based on flow, more relief the harder you're breathing.

_________________
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.