Newbie With Extenuating Circumstances - Opinions Needed!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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dreamzone
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Newbie With Extenuating Circumstances - Opinions Needed!

Post by dreamzone » Tue Jan 27, 2015 5:19 pm

Introducing myself: Total APAP newbie with extenuating circumstances!

Warning – sorry this is so long.

DH was dx’d with OSA earlier this summer. His APAP has changed our lives! He’s a complete success story. Seeing his improvement, I wanted the same outcome: better sleep, more energy, AND – he had a significant change in his labwork from a chronic kidney disease. Amazing what a little oxygen can do to your internal organs!

I had my first sleep test in June 2014. It was done by Kaiser, at home, in my own bed. I wore a little wristband and a pulse oximeter. Ironically, I forgot to tell them that it was two days after a head injury. I never really slept due to the pain. Results were “inconclusive.” I later repeated the home test with more sophisticated devices, and got the following:

Epworth Sleepiness Scale = 8
EMBLETTA Sleep Study results:
TST: 8 hr 31 min
Lowest O2 Sat = 86%
Number apneas = 9 (6 obstructive; 3 central)
Number hypopneas = 53
Total Snoring Time = 0 minutes
AHI = 7.5

Summary: “Mild Sleep Apnea”


I got a loaner APAP for a week and had difficulty with mask comfort. (Had two Fisher and Paykel Full Face masks, one Medium, one Small. The Medium pressed on my cheekbones so hard they hurt for days. The Small seemed to develop more leaks. Three days later, I got a nasal mask, but the night I tried it my nose was stuffy, so no go.

Finally I got my OWN programmed machine! Woot! I was so happy! I also got a boatload of masks to try from the Kaiser Sleep Lab.

I knew the learning curve could be steep, as I am a light sleeper. I became an expert at loosening the headgear so that it wasn’t too tight to sleep, but didn’t feel like a vise on my head. I have a hose holder so I can turn in bed easily without getting tangled up.

I carefully assembled the unit (with DH’s “expert” help), put on my Small mask, and turned the machine on the first night. I suddenly realized that instead of a steady air pressure, the machine was pulsating erratic blasts of air. (My pressure range was 6 – 20.) I had assumed – and previously experienced – a continuous pressure from the loaner machine. I figured that the air flow would remain steady, until the machine determined I needed more pressure, at which point the pressure would increase, but the flow would remain steady. It did not.

It was pulsing every two seconds. I normally take 6 – 8 breaths per minute. It felt like the machine was trying to MAKE me breathe at a certain rate. Even more frustrating was the sensation of the air flow “chugging” erratically during inhalations AND exhalations.

In between trying to get comfortable with the headgear, I was also kept awake with these constant changes. It was like being on a ventilator, only having the complete ability to breathe on my own. At one point I dozed off, and woke up feeling like a small animal was lying over my mouth breathing erratically.

So at 2:30 a.m. I woke up, turned the machine off, and read til 6 a.m. Then I found the nasal pillow mask, put THAT on the machine, and tried to sleep. The pulsing sensation was there, but lessened in the smaller mask. I woke up to the bedroom door opening… DH was checking to see if I were still alive… it was 2 p.m. !

The sleep lab at Kaiser told me to go to Apria to see one of their Respiratory Therapists, in case the machine was defective. I had taken a cell phone video of me fully awake with the machine on, and the air pressure was like a manic leaf blower. That RT just took another machine off the shelf, set it to my prior titration, and sent me home. Turns out it was worse than the first one.

So back I went, and got a “seasoned” RT who correctly dx’d that my breathing patterns were confusing the machine. I breathe so slowly and so shallowly it thought I wasn’t breathing at all. He re-set the sensitivity AND the pressure, and it worked fine!

Unfortunately, I started using it with my Fisher and Paykel nice little nasal mask, and the following morning I woke up so dizzy I couldn’t stand up.

I am a retired medical counselor with prior vestibular problems in the past, so immediately I set about doing some research. I found a lot of anecdotal info on the internet about CPAP and dizziness (“You got a heart problem, Dude”) or (“That’s a bad machine – throw it away”). Finally I found two clinical studies from the NIH and another hospital about “Alternobaric Vertigo”where a CPAP patient experienced uncontrollable dizziness from using his machine.

What had been happening was that the positive air had been forcing air into his damaged Eustachian tubes, causing an imbalance of pressures in the middle ears. I have Eustachian Tube Dysfunction ….bingo! I went to see my Vestibular Specialist doc, and he agreed. SO – what to do about the APAP?

He had a few suggestions, but mostly he wanted me to meet with the Pulmonologist, which he arranged. I expressed concern that even with the APAP on all night, my morning O2 sats were only 85%.

The Pulmonologist ordered an overnight oxygen saturation test (without the APAP) and discovered that my nighttime O2 sats are only 79%. How much of this is related to my Traumatic Brain Injury from June 2014? Who knows.

So I got one of those giant beige nursing-home-type oxygen concentrators for night-time use. I went through three machines until they delivered one that did not reek of cigarette smoke, or sound like an idling Greyhound bus.

Prior to using the oxygen, I found I was sleeping 12 – 14 hours a day, staying in my PJs, and only venturing out to use my computer. And then it was bedtime again.

But after one night on supplemental O2, I was able to get up, get dressed, and spend the day saving the world, as we had two family crises starting Christmas Day.

Last night I got the courage to finally hook up my concentrator to the APAP. I used a Quattro FX full face mask so that all the air was diffused and less likely to enter my dysfunctional Eustachian tubes. I think I slept all night, and the mask was no fun, but I did wake up at 9 a.m.

I do agree with Sheriff – finding the right mask will be a challenge, but after everything I’ve been through, it seems pretty minimal. I’ll just keep hunting until I find the most comfortable one. (I already have a Banker’s Box full of samples!)

Has anyone else had issues from their breathing rates affecting the performance of the APAP/CPAP/BIPAP machine?

Has anyone else had issues with Central Sleep Apneas?

Or head injuries?

I feel like I’m in uncharted territory here… all opinions are welcome!!!! Thanks!!!

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: REF 560P, but Humidifier does NOT have a heated tube; ALSO: Invacare Perfecto Oxygen Concentrator, for nighttime supplemental O2 @2 liters with APAP

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DeadlySleep
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by DeadlySleep » Tue Jan 27, 2015 7:27 pm

Gee, I don't want to read and understand that whole thing, but you asked for opinions so here goes.
dreamzone wrote: He re-set the sensitivity
This sounds like BS to me. Maybe the machine was set to regular hose and you were using slimline or vice versa. That could cause the pulsing you mention.
dreamzone wrote:supplemental O2
I am skeptical that you need this since you make no mention of lung dysfunction.

Do you have the CPAP software and are you using it to analyze your CPAP process performance? This is something basic and necessary when there is difficulty.
dreamzone wrote:Has anyone else had issues with Central Sleep Apneas?
Why do you ask?

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Julie
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by Julie » Tue Jan 27, 2015 8:35 pm

Hi - first of all, we're not medical people, just patients who've learned as much as we can about OSA and Cpap, with a little personal. gemeral knowledge thrown in, so we can't comment on previous neuro problems you've had, but can try and sort out your Cpap experience. I do think your MD may be confused when it comes to things like 02 de-sats. Most of us had them when tested, but almost none needed to be hooked up to 02 because of them... the normal thing to do would be to optimize your C- or Apap experience, use software like SleepyHead (free to DL from the 1st note on forum page... Pugsy's Tutorial) and then let us see a night or two - use Imgur.com to screenshot graphs and then link that to this thread so we can see what's actually going on overnight in different parameters.

If your prescribed Cpap pressures are too low to be effective, then we'd normally raise them by a couple of #'s for a couple of nights and see if that helped. If you have any reason to suspect central apnea, that should be addressed but... it is normal for lots of us to have a few when going asleep and then more when awakening. It's only something to worry about if you have many more throughout the night and that's fairly uncommon, so I'd put that aside for now until you get Cpap working properly. There are many masks in diff. sizes to try on - while lying down if at all possible because your face changes a lot then - and it's important to find the right one in your size that works... Cpap.com will let you try many for 30 days for a small return fee, and you can look at them in detail on their website.

So now you want to get the software going as it will help immensely in knowing what's what, don't worry at the moment about 02 or centrals, and do try to get a mask sorted out... then come back with results of the software.

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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by Janknitz » Tue Jan 27, 2015 8:55 pm

Kaiser's home testing and home titration are great for run of the mill OSA, but you do NOT have run of the mill OSA. You need a FULL in lab sleep test. Kaiser can and does do them when warranted--if your local Kaiser does not then they need to refer you out. You are going to have to do some pushing to get it, though. As you are a "retired medical counselor" (what is that exactly?) you should be well-positioned to advocate for yourself. Hopefully Kaiasgram will weigh in--she (eventually) got a full sleep lab test from Kaiser. You might try pm'ing her if she doesn't speak up--she may not be following this thread.

If your AHI was as low as it is but O2 levels were OK, I'd say you might be a good candidate for an oral appliance. But the desats say something very different is going on (perhaps a central sleep apnea caused by the brain injury?) and it cannot be diagnosed without a proper, full, in lab sleep test.

Sorry, in lab sleep tests are no fun, but you need one in this case.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
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dreamzone
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by dreamzone » Tue Jan 27, 2015 11:10 pm

by DeadlySleep on Tue Jan 27, 2015 6:27 pm
Gee, I don't want to read and understand that whole thing, but you asked for opinions so here goes.

dreamzone wrote:He re-set the sensitivity

This sounds like BS to me. Maybe the machine was set to regular hose and you were using slimline or vice versa. That could cause the pulsing you mention.

dreamzone wrote:supplemental O2

I am skeptical that you need this since you make no mention of lung dysfunction.

Do you have the CPAP software and are you using it to analyze your CPAP process performance? This is something basic and necessary when there is difficulty.

dreamzone wrote:Has anyone else had issues with Central Sleep Apneas?

Why do you ask?
Hi, Deadly Sleep – When the RT reset the sensitivity, I was using a regular hose. He just said it would help the machine recognize a shallow breath as a real breath instead of "not breathing at all." I am using supplemental oxygen because my O2 sats at night are 79%, after a separate night of oxygen saturation testing. I am not yet using a separate software program as I am still in the “analytical” stages of the Kaiser sleep apnea program, and they have their own SD card inserted in the machine to make sure it’s set correctly for me. Once I’ve sent that off to them, I’ll be sure and get the software that others use. I like to see numbers and charts and results. I only asked about Central Sleep Apneas because I have some. But maybe everyone does? Thanks for your reply!

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: REF 560P, but Humidifier does NOT have a heated tube; ALSO: Invacare Perfecto Oxygen Concentrator, for nighttime supplemental O2 @2 liters with APAP

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dreamzone
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by dreamzone » Tue Jan 27, 2015 11:12 pm

by Julie on Tue Jan 27, 2015 7:35 pm
Hi - first of all, we're not medical people, just patients who've learned as much as we can about OSA and Cpap, with a little personal. gemeral knowledge thrown in, so we can't comment on previous neuro problems you've had, but can try and sort out your Cpap experience. I do think your MD may be confused when it comes to things like 02 de-sats. Most of us had them when tested, but almost none needed to be hooked up to 02 because of them... the normal thing to do would be to optimize your C- or Apap experience, use software like SleepyHead (free to DL from the 1st note on forum page... Pugsy's Tutorial) and then let us see a night or two - use Imgur.com to screenshot graphs and then link that to this thread so we can see what's actually going on overnight in different parameters.

If your prescribed Cpap pressures are too low to be effective, then we'd normally raise them by a couple of #'s for a couple of nights and see if that helped. If you have any reason to suspect central apnea, that should be addressed but... it is normal for lots of us to have a few when going asleep and then more when awakening. It's only something to worry about if you have many more throughout the night and that's fairly uncommon, so I'd put that aside for now until you get Cpap working properly. There are many masks in diff. sizes to try on - while lying down if at all possible because your face changes a lot then - and it's important to find the right one in your size that works... Cpap.com will let you try many for 30 days for a small return fee, and you can look at them in detail on their website.

So now you want to get the software going as it will help immensely in knowing what's what, don't worry at the moment about 02 or centrals, and do try to get a mask sorted out... then come back with results of the software.
Hi, Julie - No, I know you’re not medical professionals, and isn’t it irritating when newbies seem to expect a medical diagnosis from forum members? I hope I didn’t give that impression! My overnight apnea test showed 3 centrals and 6 obstructives (which I know isn’t much.) But since my recent overnight O2 saturation test results were only 79%, they were labeled in the “dangerous hypoxemia” category, and were of concern to my doc. According to my Pulmonologist, anything under 89% qualifies for supplemental O2. Even using my APAP all night (without O2), I could only get my levels up to 85%. I’m o.k. with the mask I have; no leaks at all, ever, and I can pad the headgear with soft cotton pads. I’ll keep shopping, though. I have to wait a bit on the software, as right now Kaiser wants to collect data to make sure both machines are helping me. Thanks!

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: REF 560P, but Humidifier does NOT have a heated tube; ALSO: Invacare Perfecto Oxygen Concentrator, for nighttime supplemental O2 @2 liters with APAP

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dreamzone
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by dreamzone » Tue Jan 27, 2015 11:16 pm

by Janknitz on Tue Jan 27, 2015 7:55 pm

Kaiser's home testing and home titration are great for run of the mill OSA, but you do NOT have run of the mill OSA. You need a FULL in lab sleep test. Kaiser can and does do them when warranted--if your local Kaiser does not then they need to refer you out. You are going to have to do some pushing to get it, though. As you are a "retired medical counselor" (what is that exactly?) you should be well-positioned to advocate for yourself. Hopefully Kaiasgram will weigh in--she (eventually) got a full sleep lab test from Kaiser. You might try pm'ing her if she doesn't speak up--she may not be following this thread.

If your AHI was as low as it is but O2 levels were OK, I'd say you might be a good candidate for an oral appliance. But the desats say something very different is going on (perhaps a central sleep apnea caused by the brain injury?) and it cannot be diagnosed without a proper, full, in lab sleep test.

Sorry, in lab sleep tests are no fun, but you need one in this case.
Janknitz – I think you are absolutely right. Kaiser is completely inundated with OSA patients, and most services are done in group classes. In fact, my Pulmologist has recently suggested that I go to the Bay Area for more specialized testing in a Sleep Lab. I think eventually I will be taking him up on that. I don’t mind the overnight in-lab sleep test…. I’d rather go through some discomfort in order to get an answer on what is going on with me. I’m open to pretty much anything at this point. I just want to feel better, and will do whatever it takes. Oh – “retired medical counselor” – my graduate degree was in Rehabilitation Counseling… it was part medical counseling, part therapeutic counseling, and part vocational counseling for people with disabilities. I read medical and surgical reports, did medical and pharmacological management, and translated difficult medical situations (from “medicalese”) to patients. I am impressed at how many members here take so much responsibility for their sleep health by using the data cards, and hope to do the same when Kaiser cuts me loose. Thank you for your reply!

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: REF 560P, but Humidifier does NOT have a heated tube; ALSO: Invacare Perfecto Oxygen Concentrator, for nighttime supplemental O2 @2 liters with APAP

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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by sleep_quest » Tue Jan 27, 2015 11:55 pm

I am impressed at how many members here take so much responsibility for their sleep health by using the data cards, and hope to do the same when Kaiser cuts me loose.
In case you want to get a jump on the software analysis, Sleepyhead software in no way interferes with the data on your SD card - you are using a Philips Respironics 560P, correct? You can collect the data on your CPAP machine and then upload that data from the SD card into your computer using the Sleepyhead software and Kaiser won't know the difference. Just make sure you put your SD card back in your CPAP machine

It might be interesting to compare the advice you get from folks here versus what you get from the RT at Kaiser... From my personal experience I was told "software? You don't need any software!" when I asked about it. But when I went in for my 3 month follow up all they looked at was hours of use for compliance and didn't even notice that my settings had changed from 6 min 20 max to 8.5 min and 20 max. I'm now up to 9.5 min to zero in on some events that don't need to happen with a little more air. I'm very comfortable with making the changes based on the support I've received here and because 'we' are doing it with data analysis from Sleepyhead.

Wishing You Good Sleep!

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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by Janknitz » Wed Jan 28, 2015 12:22 am

I will say the Kaiser sleep techs (at least in Santa Rosa) are pretty good and they DO check settings and efficacy data. They have a lot of autonomy--I'm pretty sure they arethe one's who determine the settings and the pulmonologist just signs off.

One thing has me scratching my head. We've all seen the provider manual and clinicians menu on the PR APAPs. There's no "sensitivity setting" as far as I know.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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sleep_quest
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by sleep_quest » Wed Jan 28, 2015 12:49 am

To be fair, the tech that helped me seemed to be the 2nd stringer based on my observations from previous appointments. The first string guy was busy with another patient when I went in and since I was confident in my treatment he took my info, asked if I had any questions and sent me along my merry way.

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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by ChicagoGranny » Wed Jan 28, 2015 7:08 am

dreamzone wrote:my recent overnight O2 saturation test results were only 79%, they were labeled in the “dangerous hypoxemia” category, and were of concern to my doc.
What does that damn doctor say is causing this? There is a concern on my part that they are fumbling around with your case.


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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by adin67 » Wed Jan 28, 2015 8:21 am

I'm not a specialist but in my opinion (based on my newbe cpap user experience, almost 2 yrs ) oxygen saturation is low because your min. pressure(6) is to low and that may trigger the centrals too(but a few CA is not a problem). And because you have to high the max. pressure (20) that may trigger the eustachio problems, (I think)...
Sorry if i'm wrong.

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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by OkyDoky » Wed Jan 28, 2015 9:20 am

Janknitz wrote: One thing has me scratching my head. We've all seen the provider manual and clinicians menu on the PR APAPs. There's no "sensitivity setting" as far as I know.
I'm wondering if we have the wrong machine listed, since you just recently started with this machine and the one chosen is an older model. Take the humidifer water out, then turn the machine over and look for the REF# xxx this will help the people who reply out.
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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by palerider » Wed Jan 28, 2015 11:46 am

Janknitz wrote:One thing has me scratching my head. We've all seen the provider manual and clinicians menu on the PR APAPs. There's no "sensitivity setting" as far as I know.
I'm guessing that it's either a case of misunderstanding what the tech said, or, (possibly more likely) the tech just saying something to placate the annoyance, er, patient.

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Re: Newbie With Extenuating Circumstances - Opinions Needed!

Post by dreamzone » Wed Jan 28, 2015 6:22 pm

by sleep_quest on Tue Jan 27, 2015 10:55 pm

In case you want to get a jump on the software analysis, Sleepyhead software in no way interferes with the data on your SD card - you are using a Philips Respironics 560P, correct? You can collect the data on your CPAP machine and then upload that data from the SD card into your computer using the Sleepyhead software and Kaiser won't know the difference. Just make sure you put your SD card back in your CPAP machine

It might be interesting to compare the advice you get from folks here versus what you get from the RT at Kaiser... From my personal experience I was told "software? You don't need any software!" when I asked about it. But when I went in for my 3 month follow up all they looked at was hours of use for compliance and didn't even notice that my settings had changed from 6 min 20 max to 8.5 min and 20 max. I'm now up to 9.5 min to zero in on some events that don't need to happen with a little more air. I'm very comfortable with making the changes based on the support I've received here and because 'we' are doing it with data analysis from Sleepyhead.

Wishing You Good Sleep!
sleep_quest - Brilliant! I had no idea I could do that. Will search out the Sleepyhead software right now. Thanks for the suggestion!

_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Quattro™ FX Full Face CPAP Mask with Headgear
Additional Comments: REF 560P, but Humidifier does NOT have a heated tube; ALSO: Invacare Perfecto Oxygen Concentrator, for nighttime supplemental O2 @2 liters with APAP