CSA - was prescribed a bipap but it doesn't seem right

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Sun Dec 04, 2022 1:43 pm

I've been diagnosed with CSA with minor OSA, I'm relatively fit but always have bad brain fog and no energy. takes about 6-8 hours 'wake up', no amount of cold showers, ice baths, caffeine or Adderall really helps. Maybe Adderall helps ,but no one will prescribe it.. always wake up exhausted.

Just starting bipap but I'm finding it to double or triple the amount of central apneas

AHI is 8.8 during sleep study initially,
I'll note, that I was so restless and didn't fall asleep for like 4 hours, I don't know why they start studies so early. I usually sleep at midnight. I also saw the apneas when I was awake or dozing, they also had equipment issues, which seemed bizarre to document "sometimes it worked sometimes it didn't"

Titration study was 30 AHI with CPAP at only 5
And with BIPAP 13/6 AHI was 3

Using a resmed 10 vauto
Mode vauto
Max ipap 13
Min epap 6
Ps 4.0
Ti max 2.0s
Ti min 0.3s
Trigger med
Cycle med
Full face
Ramp time off

I'll add oscar charts if I can actually get some sleep time with the bipap

sleep study (didnt really sleep until around 1:43am)
Image

titration
Image
Last edited by ImAlwaystired on Thu Dec 15, 2022 7:05 pm, edited 10 times in total.

User avatar
zonker
Posts: 11011
Joined: Fri Jun 19, 2015 4:36 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by zonker » Sun Dec 04, 2022 2:28 pm

ImAlwaystired wrote:
Sun Dec 04, 2022 1:43 pm
I've been diagnosed with CSA with minor OSA, I'm relatively fit but always have bad brain fog and no energy.
Image

sorry you're having trouble with therapy. here's what you can do to help the forum members help you-

viewtopic/t172378/Sticky--Newbies-PLEAS ... STING.html

the take away is that the forum needs to see the charts in order to see exactly what's going on.

alternatively, there is sleephq for posting charts.

good luck!
people say i'm self absorbed.
but that's enough about them.
Oscar-Win
https://www.apneaboard.com/OSCAR/OSCAR-1.5.1-Win64.exe
Oscar-Mac
https://www.apneaboard.com/OSCAR/OSCAR-1.5.1.dmg

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Sun Dec 04, 2022 5:12 pm

zonker wrote:
Sun Dec 04, 2022 2:28 pm
thanks, added my sleep studies to it

User avatar
ozij
Posts: 10120
Joined: Fri Mar 18, 2005 11:52 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Sun Dec 04, 2022 9:23 pm

  • According to the first study, your sleep was badly disordered, but you were having far more spontaneous arousal than arousals related to sleep disordered breathing.
  • Your titration study improved your sleep architecture tremendously
  • Butonce you started sleeping, periodic leg movements appeared - they disrupt sleep
  • From what I see of your titration study - there's no need for an ASV, but you do have disordered sleep that needs to be treated. With the bi-level therapy, on, it's not "sleep disordered breathing" that is causing your problems, it's having a non breathing related sleep disorder.
ImAlwaystired wrote:
Sun Dec 04, 2022 1:43 pm
I can't seem to sleep with the BIPAP, couldn't with the CPAP either, feels like I'm suffocating when I doze off. I notice it seems to ramp up epap to 8 or so, I believe that's related to PS being at 4? Does that mean it's not really matching the titration study? Should I change PS?
Post the OSCAR charts of what the machine is doing when you're trying to sleep, in bed.
If you wake up, turn the machine off, make sure the mask is not leaking, and turn the machine on again. Repeat as many times as necessary.
Don't permit yourself time in bed without the mask and machine.
If you don't want to wear the mask, get out of bed, do something relaxing and pleasant until your mind and body agree to try the bi-level therapy in bed.
Your machine's response is based on its inevitable assumption that the breathing patterns it sees happen when you're asleep.
If you're not asleep, the algorithm can be led badly astray. Which is why, at least for the time being, I'd put the machine in fixed mode.
Who put your machine on Auto mode, and why?

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks.
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery

Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Sun Dec 04, 2022 9:49 pm

Respiratory therapist, where I got the BIPAP from, put it on auto. Doc only prescribed 13/6. What would work better?

I would add, that I had a very inconsistent sleep schedule/poor sleep hygiene, when I had the initial sleep study.

I made sure I woke extra early and slept only 4-5 hours prior to my titration so I'd sleep more.

So..I want to also ask, if my sleep hygiene was any better for the initial sleep study, would it matter?

I tend to have a lot more energy late at night, screwing up my sleep constantly. I worked 2nd shift for a while, knowing this, but it didn't make a difference, had a schedule but still tired.

I'll add Oscar reports soon, thanks for the input

User avatar
GearChange
Posts: 112
Joined: Sat Dec 18, 2021 1:44 am
Location: California, USA

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by GearChange » Sun Dec 04, 2022 10:08 pm

Your sleep study is quite poor in that you only had a sleep efficiency of around 40% (you only slept 218 minutes out of the 500 minutes or so that you were being observed). 218 minutes or roughly 3.5 hours, is not enough to get a good snapshot of your sleep , however observing Central Apnea for a trained professional is relatively easy. CSA is an entirely different sleep disorder than OSA which has clearly defined physiological roots whereas CSA is a relatively new scientific find and the root causes of it are not even understood yet. All scientific studies have shown so far is that in people with CSA disorder, the brain stops sending involuntary breathing pulses to the diaphragm in order for it to move and cause the lungs to expand (inhale), during sleep. This results in patient waking up in order to inhale voluntarily and as events keep repeating through the sleep session, the patient does not end up with sufficient sleep, waking up very tired . In extreme cases when this goes on without therapy, it can lead to serious other issues such as Cardiovascular problems or even disorientation and confusion followed by panic attacks etc.
As to why this happens therefore or why some CSA patients seem to have more frequent episodes than others while most people don't even have this condition, let's say it is all "work in progress" at this point in time.
So far it has been found that a lot of people with a history of "Opiates" use, tend to develop CSA and also some people with OSA who have been receiving CPAP treatment for some time, may also go on to develop CSA (they call this "Treatment-Emergent CSA") while some others have CSA disorder without any obvious cause (they call this condition "Idiopathic"). But then again there are still people who never develop CSA with either long term Opiates use or long term CPAP treatment, needless to say that the science behind CSA is still at its infancy.
That being said, there are really no treatments for CSA other than a very new surgical procedure when a computer is implanted under the skin and it monitors CSA episodes and as soon as one happens, it sends an electrical impulse to the Phrenic nerve in order to stimulate the diaphragm and cause the lungs to expand (inhale). Exhaling does not need a pulse, since the lungs elasticity causes the lungs to shrink back (exhale). Technically even this procedure is still a "therapeutic" measure rather than a "treatment", as it does not solve the root cause of the problem. It just provides a temporary solution. So PAP therapy too is a therapeutic measure rather than a treatment.(you will forever have to use it at sleep).

In your case, a BIPAP machine is not suitable because a BIPAP is simply designed to drop pressure when you exhale and increase pressure each time you inhale, whether or not you need it. CSA needs a different kind of therapy, one that provides pressure ONLY when you need it and the only machine that solves this problem at this time, is an ASV machine which ventilates ONLY when a CSA event is occurring. An ASV machine can learn your breathing pattern on the fly and then generate the same pattern of breathing when CSA events occur or it can be set to provide breaths at predetermined parameters, for when you fail to inhale involuntarily.
Currently only 2 manufacturers produce ASV machines, Philips Respironics and Resmed, each having their own proprietary algorithm. People have their own biases towards each brand and mine is on Philips, but that's another story for another time.
ASVs are moderately more expensive than BiPAPs and this is one reason why insurance companies are hesitant about approving them, unless you work with a doctor who understands ASV (like I said, CSA is still poorly understood by most medical professionals). Anyway, you should focus your efforts on getting ASV therapy. In my case I ended up paying out of pocket because of the same insurance issues and have not felt better ever since. Its an entirely different form of PAP therapy and if you truly have CSA, then you will find ASV therapy providing almost immediate results and a greatly improved sleep.
Good luck and let us know how you will progress.
Even though I have had extensive experience with the use and functionality of several types of different PAP machines,no information in my posts should be put in practice unless cleared by your own medical practitioner first.

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Tue Dec 06, 2022 9:23 am

GearChange wrote:
Sun Dec 04, 2022 10:08 pm
Thanks for your input. I dont think I'll be able to ever afford asv out of pocket, cant even keep a job now.

finally got some sleep in last night, my AHI hit 18.65 according to oscar.

I dont know if it'll be helpful, but I have a muse s headband, so I can get basic EEG+sleep phase and heart rate data.

I know I kept waking up feeling like I needed to breath in more and not getting enough air. I never used opiates, but I was prescribed antidepressants and benzodiazepines for years and years for horrible anxiety. Currently I take nothing except vitamins. and an off and on addiction to caffeine which never seem to help.

I'll attach oscar and muse charts

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Tue Dec 06, 2022 9:56 am

Oscar data from last night, obviously took it off a few times as I was just too out of breath. I grabbed my o2 meter just before the big gap and was at 85%, probably lower

Image
Image

EDIT: I wanted to take this a step further, and during this night I also used the muse (4 channel EEG headband) to record my eeg, it also recorded heart rate but I dont know if it can grab spikes.

As you can see the eeg shows I'm asleep when the centrals happen, specifically ~5:20-5:40am I was in deep sleep, and anything around 6am I was in REM,

Image
Last edited by ImAlwaystired on Tue Dec 06, 2022 10:20 pm, edited 1 time in total.

User avatar
ozij
Posts: 10120
Joined: Fri Mar 18, 2005 11:52 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Tue Dec 06, 2022 10:55 am

ImAlwaystired wrote:
Tue Dec 06, 2022 9:56 am
Oscar data from last night, obviously took it off a few times as I was just too out of breath. I grabbed my o2 meter just before the big gap and was at 85%, probably lower
That's not good at all.
Contact your doctor's office. Tell them about the O2 results.
Ask them to check if the machine is set up the way it's supposed to be.

You did not have tons of central apneas on bi-lelvel therapy in your titration study

You mentioned "horrible anxiety" and I wonder how much of the time on this oscar report you were asleep, and how much of it you were struggling with anxiety.
Or is this part of the insurance scam,.I have to "try it".
It's not part of a scam. You yourself noticed the price difference between the machines. The insurance companies want to make sure the expense is justified. So you have try bi-level before they agree to an ASV.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks.
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery

Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Tue Dec 06, 2022 5:45 pm

ozij wrote:
Tue Dec 06, 2022 10:55 am
my doc ordered an o2 meter test for my machine/room

I'd only say the anxiety happened when I woke up, due to not being able to breath/out of breath. Anxiety was the reason in the past I was on benzos, it's not as much of an issue now days

User avatar
ozij
Posts: 10120
Joined: Fri Mar 18, 2005 11:52 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Tue Dec 06, 2022 9:07 pm

ImAlwaystired wrote:
Tue Dec 06, 2022 5:45 pm
ozij wrote:
Tue Dec 06, 2022 10:55 am
my doc ordered an o2 meter test for my machine/room
Do you mean an O2 meter test of while you're using your machine asleep in your room?
That should be very informative.

You have to have good oxygenation and good breathing.
When that is fixed, the other things affecting the quality of your sleep - if they're still there - will also have to be taken care of.
Those other things, at least according to your titration study are: 1) spontaneous arousals 2) periodic leg movements that surface once you can sleep.

Good luck - and keep us posted.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks.
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery

Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Tue Dec 06, 2022 9:19 pm

ozij wrote:
Tue Dec 06, 2022 9:07 pm
ImAlwaystired wrote:
Tue Dec 06, 2022 5:45 pm
ozij wrote:
Tue Dec 06, 2022 10:55 am
my doc ordered an o2 meter test for my machine/room
Do you mean an O2 meter test of while you're using your machine asleep in your room?
That should be very informative.

You have to have good oxygenation and good breathing.
When that is fixed, the other things affecting the quality of your sleep - if they're still there - will also have to be taken care of.
Those other things, at least according to your titration study are: 1) spontaneous arousals 2) periodic leg movements that surface once you can sleep.

Good luck - and keep us posted.
yeah, I dont know why oxygen would be low in my room though. Doc never even mentioned the leg movement, nor did the studies. What can be done about that? My superpower is waking up with no blankets

User avatar
ozij
Posts: 10120
Joined: Fri Mar 18, 2005 11:52 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ozij » Tue Dec 06, 2022 9:54 pm

ImAlwaystired wrote:
Tue Dec 06, 2022 9:19 pm
Doc never even mentioned the leg movement, nor did the studies.
You sound like you never read your studies an never tried to understand their terms. Look at your titratiion study. See where it says PLM? That's Periodic Leg Movement.
ImAlwaystired wrote:
Tue Dec 06, 2022 9:19 pm
yeah, I dont know why oxygen would be low in my room though
The doctor has no reason to measure the amount of oxygen in your room and will not do so.
He wants to know the amount of oxygen your blood is carrying to the rest of your body.
The oxygen gets into your blood from your lungs and is delivered to your body with your blood.
An oximeter can measure the amount of oxygen in your blood through your skin.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks.
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery

Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Tue Dec 06, 2022 10:23 pm

ozij wrote:
Tue Dec 06, 2022 10:55 am
You did not have tons of central apneas on bi-lelvel therapy in your titration study
I added my muse eeg headband data to that post, which clearly shows I'm either in deep sleep or REM sleep during the apneas
Zooming in on the oscar charts shows they are 15-20 second halts in flow, which actually get kinda erratic just before and certainly dont look consistent, as seen here

Image

ImAlwaystired
Posts: 14
Joined: Sun Dec 04, 2022 1:23 pm

Re: CSA - was prescribed a bipap but it doesn't seem right

Post by ImAlwaystired » Tue Dec 06, 2022 10:25 pm

ozij wrote:
Tue Dec 06, 2022 9:54 pm
You sound like you never read your studies an never tried to understand their terms. Look at your titratiion study. See where it says PLM? That's Periodic Leg Movement
I know it's in the reports, but no one said anything about it after the studies I had, is what I ment.