21y/o Worsened Symptoms with BiPAP after New Diagnoses

[Sarin]

           

Bottom Line Up-Front: 21 Yr Old OSA (1+yr) & Sleep-Related Hypoventilation / Hypercapnia (New Find in July). Absurd AHI numbers (20+) with BiLevel Machine mainly from Unclassified Apneas, request community review of data and my sleep provider comments.

What  I observe in my sleep nights is oscar reads these events mostly as Unclassified Apneas usually lasting 10 up to 25 seconds!!! This is when  I am on the exhale  pressure of 7 and  either my breathing is too shallow to trigger inhalation pressure of 13 due to hypoventalation looking like periodic breathing or they are central apenas? Doc said inlab I was "treated with good ahi" inlab ahi was 1.5 and no supplement Oxygen was needed— note that sleep lab night of sleep was terrible and at home is terrible too quality wise.

--Break--

Hey Apnea board, first time poster / lurker and really desperate for some collaboration on my worsening symptoms & treatment.

Father is long time CPAP user w/Same Fatigue Symptoms I expressed, finally saw a doc regarding my chronic lifelong fatigue and daytime tiredness/drowsiness severely affecting QOL at 19 Y/O always restless sleep.

I was given an At-Home Sleep Test (Phillips Respironics Alice NightOne with RIP Effort Belt & Pressure Flow Sensor, O2 Sensor) January 20, 2022.
Respiratory Events/HR=14.1  &  8.6 Obstructive Events/HR, 0 Central, Lowest Desat 83 (11 seconds) total duration of test <89  0.1min though, 81% sleep snoring, nothing else of note found from THIS test.

Sleep Doc put me on APAP treatment following (got APAP in March 2022) and used broad APAP range from 4-20 to determine CPAP pressure.

Aprox. 3 weeks later determined median pressure was 8 and put me on 8-12 pressure APAP long term. Average AHI on this was 3.0 over 365 day data.

Over the next year until December 2022 I felt no to little improvement in fatigue or daytime sleepiness symptoms, would  say maybe a 3-4% improvement. Old symptoms pre-therapy like dry mouth & morning headaches resolved. Brought Doc concerns and  assured me to give time with the machine 1yr+ to notice symptom improvement in some individuals, to note those with lower AHI numbers like mine as well. Note that OSA was about 99% treated by APAP by now with absolute consistent use.

I go on deployment to Middle East from Jan 2023 until June 2023 contuning nightly cpap therapy and arrive back in states.

Have a follow up appointment with Doc mid June and expressed I am still insanely drowsy and tired every day, he recommended trialing Armodafinil (Nuvigil) for Sleepiness improvement starting at 50mg x2 tablet, eventually raising to 200mg x1 daily I am currently still on. I told him I wanted to get a MSLT and in-lab study done to rule out any other  conditions  like  Narcolepsy,  etc... In Lab & MSLT completed on July 6 2023 — results  from this are pasted at bottom, specific CO2 data can email to you.

After evaluation of Sleep-Related Hypoventilation, Doc put me on BiPAP (Spontaneous only) for treatment at 13/7.
Immediately day 1 of trying device (AHI 7.55) I felt no improvement and maybe even MORE tired! I also had old pre-cpap symptoms come back up: Dry Mouth, Morning Headache, these have  maybe resolved a little over the weeks still feel headache occasionally a little bit. Average AHI is 20.16 for  last 30 days.

I  brought these concerns up to my doc about 5 days being on BiPAP and in person about old symptoms and high AHI and still very sleepy, he stated  it might just take my body time to adapt to it and in lab it was "treated" so I should start feeling better and less sleepy over x amount of time, he also provided me a VCOM adapter to try on my hose which I only used for two days it made my treatment worse and limiting air given my diagnoses doesn't seem good.

This concludes most of my visits and encounter with trying to optimize the machine portion of my sleep issues but I am really just about as tired and fatigued as ever and I think my BiPAP may have even made me more  tired even if it is treating my elevated CO2 levels from CPAP.

My Machine  is  a ResMed AirCurve 10 VAuto, I use a Airfit P10 nasal  pillow with Knightsbridge chin strip and mouth tape in order to use nasal pillow  otherwise my  leaks are bad (mouthbreather) but I get bad leaks with full-face so I prefer nasal pillow with extra equipment steps.


Misc Notes about  My Journey and Attempted  Symptom Improvement: At initial at home test I weighed 247 with little exercise and usual 6hrs sleep. I now weigh 168 and workout something about everyday and sleep 8 hours almost every day pretty strictly with very good sleep hygiene habits. Have had loads of blood tests done on thyroid, vitamin d, iron, and more, all come back in level BESIDES I was found to have low testostorone last October and in June this year around 240 ng/dl avg over tests. I wouldn't  be surprised  if low  test was partly caused by years of sleep issues and disturbance, besides genetic— regardless in the process of starting TRT in a few weeks to see if this helps fatigue at all. Armodafinil even at 200mg is barely effective and doesn't make me feel much more awake or different just brings me to same baseline tired, always wake up feeling drunk and instantly tired. I avoid caffeine 10hrs prior bed, same sleep wake times roughly, blue light block glasses @ night, lost 70+ pounds, do light therapy in morning,

To recap, new BiPAP S coming from starting CPAP with OSA (found and treated since March  2022) & Hypoventilation (found in July 2023) + Low Test  and symptoms are worse than ever, very sleepy and tired all the time, upon reviewing oscar sleep from new machine, sleep  looks pretty disturbed still, community thoughts?


Results showed NO narcolepsy or anything from MSLT so  wont include.
In-Lab (Considered PAP Retitration) showed I have Sleep-Related Hypoventilation / Hypercapnia.
Pasted from Study Data  Below: 
ET CO2 mean, wake: 47.4
ET CO2 mean, sleep: 45.3
Duration with ET CO2 greater than 55: 74 minutes


O2 SAT DATA
BASELINE O2 SAT: (%): baseline O2 Sat (%): 99 %
LOWEST O2 SAT: (%): Lowest O2 Sat (%): 83 %
LONGEST APNEA (sec): Longest Apnea (SEC): 25.9 sec
RESPIRATIONS: Resp: 14


APNEA/HYPOPNEA

CENTRAL:Central: 6
MIXED: Mixed: 0
OBSTRUCTIVE: Obstructive: 2
HYPOPNEA : Hypopnea: 6
TIME BELOW 89% : 0.6 minutes
DOCTOR Interpretation/Recommendations
1. Obstructive sleep apnea and hypoventilation/hypercapnia.
2. Hypoventilation, as measured by ET CO2, was present at wake
and worsened with sleep.
3. Inadequate clinical response to CPAP. Hypoventilation was un
improved with CPAP.
4. Successful BiPAP titration with an ideal treatment of BiPAP
13/7 cm while wearing a size small fullface mask

[Sarin]

Oh funny note, my newly found hypoventilation from the in-lab the doctor says it amazed him I had that, and he has no idea what is causing it. Bad genetics I guess

[Sarin]

One last interesting note: I wear a whoop 4.0 band to track my sleep and what I’ve found is the rare nights I forget to put my bipap on, my Heart Rate Variability (HRV) is way higher than nights I sleep with the BiPAP. For example, August 16th HRV read 132 without machine, with machine usually around 105-115, today 103ms. Curious if anyone has thoughts on this

[Jay51]

Hello and welcome to ApneaBoard.   I mainly want to comment on your hypoventilation (as I have been diagnosed with it also).   

Looking at your OSCAR charts, it appears you don't have any hypoventilation (your median respiratory rate is norming around 15 or so).  Also you have a good tidal volume around 500.  Normal minute ventilation stats IMO.  

But, your ET CO2 levels do show hypoventilation.  It is concerning that your are actually hypoventillating worse during the day that at night (just barely though).  I think it was 47 average during the day and 45 at night.  45 is the very top of normal.  Above 45 indicates hypoventliation (you are exhaling a larger % of CO2 than normal).  

If I understand everything, you are in pretty good shape.  You may have some metabolic syndrome occurring (metabolic acidosis or metabolic alikalosis).   Basically, your electrolytes may be off; and that is causing too much Co2 in your body.  Blood test confirms or denies this.  

You may have an issue with your lungs.  Something may be occuring with the gas exhange in your lungs.   Your Dr. might refer you to a Pulmonologist.  Also, you could have a significant impairment in your nasal cavities that is impairing air flow during inhalation.  

I have had a lot of experience with hypoventiation.  If you have any other questions about it, please feel free to ask.

[staceyburke]

From what I see You are having a lot of positional apnea.  Positional apnea can NOT be controlled by pressure changes.  You have to find out what position you are getting into and cutting off your own airway.  Have you changed your sleep position?  Sleeping on your back?  Using more (or new) pillows?  These things can cause positional apnea by chin dropping to your sternum and cutting your airway.  Think of it of a kinked hose – nothing can get through – you have to unkink the hose…
IF you can’t make a simple change like changing to a flatter pillow helps then you will need a collar.  I have a link to collars in my signature at the bottom of the page.  It shows people who are not wearing a collar and the SAME person wearing a collar.  There is a huge difference between the two.

[Sleeprider]

I agree with Stacey. Most of the apnea classified as UA are actually obstructive and are caused by your head/neck position creating an airway obstruction. You arouse or move and free the airway for several more breaths, and then obstruct again. I also think you need to abandon fixed pressure with EPAP 7, IPAP 13 and move to Vatuo mode with minimum pressure 8.0 maximum pressure 16.0, PS 5.0, trigger sensitivity high. With median tidal volume in the mid 400 to over 500 mL you do not have hypoventilation except for the apnea. I can just about guarantee that with revised settings and the use of a quality soft cervical collar this will mostly resolve. https://www.apneaboard.com/wiki/index.ph...cal_Collar If you have questions on how to access therapy settings, let us know.

[Sarin]

       

I purchased both the Releaf Neck Rest ALT ReLeaf Neck Rest per the recommendations on here being my UA's being most likely Posistioanl Apnea.

Here is my sleep from Last Night using the normal Releaf Neck Rest...

Still a load of events consistently with disrupted breathing patterns with flow rate.

My setup for this night of sleep was: AirFit P10 Nasal Pillow, X shaped mouth Tape, Cervical Collar

I did wake up more than usual last night randomly , probbably following my 15-20s periods of UA's. 
I may also feel like I dreamed more than usual last night, maybe due to just the frequent awakenings and going back asleep within a minute.

Any more thoughts community? Feeling hopeless lol.

Plan for tonight: Normal Releaf Cervical Collar, KnightsBridge Dual Chin Strap, **ResMed F20 full face mask, only trying this guy tonight as I used a full face during my in-lab titration where I was fully "treated" with 1.5 AHI, X shaped mouth tape.

MY FIRST POST explains my entire sleep situation titled: 21y/o Worsened Symptoms with BiPAP after New Diagnoses 2 [b]21y/o Worsened Symptoms with BiPAP after New Diagnoses1y/o Worsened Symptoms with BiPAP after New Diagnoses[/b]

[Sarin]

Thank you Jay for the comments.
 
I should mention that the Hypoventilation / Hypercapnia was found in the sleep lab during the re-titration.
 
They said the amount of volume I was breathing was too little and the quality of breath was shallow thus during my test my CO2 levels were elevating during this first hour period from 46 to about 55+…
 
When abnormal elevation like this was found during the in-lab, they switched the machine to Bi-PAP mode which slowly lowered my CO2 levels back down to around 45-46 (not optimal but better than it climbing and climbing as it was)
 
I have a sleep lab log of all times they messed with CPAP pressures and Modes, and I ended at treatment of “13/7 BiPAP” which treated my hypoventilation— thus not showing in OSCAR.
 
AVG Tidal on Oscar is around 450-465 over a few weeks, just my AHI is wildly bad, despite my use of Cervical Collar last night for the first time in suspicion of Positional Apnea.
 
I am 5’7 163 Pounds weightlifting etc so I am definitely in a much healthier place than I was last year at 247 pounds.
 
I will get in contact with a Pulmonologist to see what might be causing my hypoventilation given it’s sleep related.
 
If you have any other comments or suggestions, shoot me them! Thanks again.

[Sarin]

Thank you Stacey for the reccomndation and knowledge.

I purchased a Releaf Cervical Collar and the Alt Releaf Cervical Collar following your comment.

You can see from my post today detailing last nights sleep using the Cervical Collar + Mouth Tape. My large leak is actually wildly down, it's usually around 20% but last night was below 1% but my Hypopnea is much more than usual and UA's bad as ever, AHI total still 16.

I Usually slept on two pillows angled around 30 degrees against the head board but started using one pillow completely flat since your comment— haven't noticed any improvement from this.

Any thoughts on this? Thanks again.

[Sarin]

Sleeprider, thanks for the comments!


I noted your comments and Staceys regarding positional apnea and purchased and used a Releaf Cervical Collar the first-time last night, in addition to laying on a flat pillow now.

I should’ve explained my hypoventilation explanation and actually was able to get excellent data from Oscar because I followed your recommended settings for a night to experiment.

If you look at my most recent post from today you can see my first last nights sleep using cervical collar + mouth tape with P10 on 13/7 BiPAP and my UA’s did not resolve at all, only my 20% avg large leak went down to below 1% AHI still terrible at 16.

What I found following your settings for a night is my median tidle volume dropped to 330-345 from my usual 450-465 on BiPAP, and this makes sense— explanation for this below.

My Hypoventilation / Hypercapnia was found in the sleep lab during the re-titration.

They said the amount of volume I was breathing was too little and the quality of breath was shallow thus during my test my CO2 levels were elevating during this first hour period from 46 to about 55+…

When abnormal elevation like this was found during the in-lab, they switched the machine to Bi-PAP mode which slowly lowered my CO2 levels back down to around 45-46 (not optimal but better than it climbing and climbing as it was)

I have a sleep lab log of all times they messed with CPAP pressures and Modes, and I ended at treatment of “13/7 BiPAP” which treated my hypoventilation— thus not showing in OSCAR.

AVG Tidal on Oscar is around 450-465 over a few weeks, just my AHI is wildly bad, despite my use of Cervical Collar last night for the first time in suspicion of Positional Apnea.

Any thoughts for me?