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.
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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