High CA Low AHI & tired, ENT Refused treatment, going rogue

[storesmoothie]

Hi everyone, I'd like to introduce myself as a new forum user. I've been lurking for a while and have read a lot, but still have lots to learn.
I'll be writing a longer post with as much detail as I can, but I will try to summarize the key points at the end if it's too much for you to read.
I really hope you can guide me adjusting my therapy, I'll try to be helpful on the forum as I learn more.


Personal Background.

I'm a 30 year old male, my daytime fatigue symptoms started around 15 years ago, I feel they have worsened over time.
I've learnt to accept that I need more sleep to feel somewhat functional, rather than fighting it.
Sleeping more helps but no matter how much it never seems to be enough.

• Age: 30 years old
  
• Height: 170 cm / 5'7
  
• Weight: 84 kg / 185 lbs (should be around 10% lower)
  
• My physical complexion is overweight, I'm mostly sedentary and out of shape.
  

I've gained weight due to drinking a lot of energy drinks to keep up with work, but now I avoid them as much as possible. I also started exercising and eating properly to work into being fit and healthier. There seems to be no direct relationship between fatigue and weight through the years.

Symptoms

• I feel tired during the day, especially when waking up, it's hard to focus and it takes high willpower to accomplish things.
  
• Sleepiness subsides as the day goes through, so I'm much more active at night, it seems grogginess takes several hours to clear after waking up.
  
• I feel much better if I'm able to sleep more hours. Best balance I've found is sleeping around 9-10 hours per day.
  
• I avoid waking up earlier it as I feel crappy for days and need to have some extra recovery sleep later.
  
• I've tried forcing myself to sleeping less or waking up earlier for periods of time, it results in feeling excessively sleepy, even falling asleep during the day while driving or distracted (not sudden as in narcolepsy).
  
• Although I'm tired, I'm able to perform physical activities, but I'd rather take a nap.
  

Medical History

• I have no known chronic or specific illness, besides constant sleepiness / daytime fatigue. Bloodwork always comes up normal for a healthy young person.
  
• A few years ago, Pneumologist found I had GERD which caused nighttime cough, referred to Gastroenterologist who cleared H. Pylori infection and have had no symptoms after.
  
• Some years ago, I had an infection that triggered pneumonia and rash, cleared on it's own. Doctors / Lab could not find the cause. Felt heavily fatigued for months, but it doesn't seem to relate to my sleep problems which started way before.
  
• Have been checked by multiple endocrinologists, have found no specific illness or abnormal levels. Mostly they checked thyroid levels.
  
• One doctor (non psychiatrist) prescribed antidepressants, which were the worst experience I have ever had and felt not only fatigued but miserable. When I wake up refreshed or sleep longer I have energy to do anything, but when waking up fatigued it is really hard to do anything at all.
  
• I had trouble getting referred to a sleep study, found an ENT specializing in Sleep Disorders & Apnea. I got an at home sleep test, which shows light Apnea with an AHI of 5. I trialed CPAP a few nights, with mixed results. Felt my case was too mild to justify CPAP treatment, referred to losing weight and psychiatrist. Found slightly deviated septum, but it doesn't seem to affect my daytime or nighttime breathing.
  
• I've had mixed success with drugs, taking modafinil in low doses and lots of coffee helps me get through specially bad days. I try to cycle to at most 3-4 days per week. I don't take any other drugs but do occasionally have a few glasses of wine.
  
• Have tried low dose melatonin <300mcg, although I fall asleep fast, I sometimes wake up suddenly during the night, or feel specially groggy the next morning.
  
• I'm not mentally stressed or fatigued from physical activity.
  
  

I'm reluctant to visit more doctors as they usually shrug me off, since I'm young, then tell me to just exercise and diet (which don't seem to have any impact on my symptoms). I'm afraid of taking psychiatric drugs, antidepressants or stimulants, which have strong side effects. Or having a psychiatrist experiment trial and error on me, when there's probably a physical cause ( and solution ) to my fatigue. I'd rather experiment with all xPAP devices and settings before moving on to something else. I'm also open to checking other mineral / vitamin / hormone imbalances that may cause fatigue or sleepiness.

Sleep Habits

Have tried many variations to optimize sleep and I'm aware of sleep hygiene habits. I've aimed for a balance between being having enough time for activities during the day and accomplishing things, but more sleep is always welcome.

• Normally sleep between 9-10 hours, rarely up to 12. From 2 AM to around noon.
  • Every once in a blue moon I'm really rested and try to do as much as I can with that energy, even if it means sleeping in really late.
    
  • Normally watch some videos on my phone before sleeping, which I know is bad for my sleep quality, but helps me wind off from my more active night time state. With CPAP It's taking longer, around 1.5h.
    
• I sleep straight and have no insomnia or trouble falling asleep. Rarely I wake up during the night.
  • Sometimes I wake up disoriented, feeling very confused about the odd lights from LEDS or shadows. Not sure if this is caused by external noises, obstructive apneas or something else.
    
  • I've tried recording myself a few times, but have found no significant data.
    
• Mostly days sleep on the side, one pillow since i noticed throat being tight when using 2. I don't move around too much.
  
• Using ear plugs, although I don't recall waking from noises, I feel somewhat more refreshed with them. I believe it's due to outside noises from neighbors waking up around 6-10 am while I'm asleep.
  
• Sleep with AC @ 22C, feels more comfortable but not sure if it influences sleep quality.
  
• Also using blackout blinds, leaving the room nearly pitch dark at night, also have improved sleep quality but It's harder to wake up.
  
• Have tried yellowing computer / phone screens, limiting usage, blue light blocking glasses and waking up to sunlight or sunbathing in the morning with little success. Exercising in the morning has not helped either, but I'm normally too tired to even try, so I normally exercise in the evening 4-6 hours before going to bed. 
  
• Intermittent fasting helps with energy levels, so I don't normally have breakfast or dinner close to bedtime.
  

At Home Sleep Study

I had an at-home sleep study. Had some trouble falling asleep, so I slept much less than usual. Recorded 3 days around 9 hours (around 5-7 real sleep hours). Using Resmed ApneaLink.

• AHI 5.1
  
• RI 8.3
  
• Apnea Index 0.9 / OAI 0.5 + CAI 0.3 ( 5 + 3 events )
  
• Hypopnea 4.3 ( 40 events )
  
• Flow limit % without Snoring 40 ( ~ 3600 / 9000 breaths),
  
• Flow limit % with Snoring 0. ( ~ 80 snore events )
  
• ODI Oxygen Desaturation Index 5. Average 92, Lowest 86 ( ~ 50 events )
  
• Heartrate 55 Avg. Lowest 40, Highest 120.
  
• Breath rate 16 bpm
  
• 0 Probable CS (Cheyenne Stokes)
  

Summary PDF of results available.

Sleepiness Scale

Some results my ENT gave to me, but I feel these questions are really nuanced and it's hard accurately assess fatigue levels.
Or maybe my case is not as bad as others but I do feel unwell enough to seek treatment.

Epworth Scale 7/24
Stop Bang 4/8


APAP / Mask Trial

ENT trialed a 4 day APAP with me, I felt really rested one night, but the rest I felt tired as usual. This gives me hope that xPAP treatment can benefit me.

• Resmed Autoset 10 APAP with pillow P10, nasal N20 and full F20 mask.
  
• Treatment ranged 4-20, APAP went from 4 to 10 during the night, AHI went down to 1.7.
  
• No significant leaks or discomfort on any, but freaked out from random mouth openings on nasal masks.
  
• No full data for this trial period, I just know AHI / pressure were lower on nasal, while having some leaks on full mask.
  
• I felt really rested like no time before the first day with F20 mask and I think higher pressures, not sure if placebo or luck. Did not even drink a single cup of coffee and was really active during the day.
  

Going Rogue, boght my own BPAP


I'm not sure if xPAP treatment will benefit me as an at home test gave me an AHI of 5, my ENT says I'm no match for CPAP treatment. But I'd rather experiment and see if there's a fix for my sleepiness / fatigue rather than throwing my hands up in the air. I found a used Resmed 9 VPAP Auto and a F20 mask. So far I have had no trouble sleeping with them but I have not felt an improvement during daytime. I'm willing to continue for weeks or months, and would like to adjust the treatment as much as possible to make the most of it.

• 1st day - 9.5h - VPAP Auto EPAP 6 - IPAP 14 - PS 6, median 7/13. AHI 22, CA 20.5, OA 1.5. Feel as sleepy as usual.
  
• 2nd day - 9h - VPAP Auto EPAP 5- IPAP 13, PS 6, median 6/12. AHI 5.48, PS 6. CA 3.4, OA 1.5. Feel slightly more tired. ATTACHED Mar30
  
• 3rd day - 9.5h - VPAP Auto EPAP 4 - IPAP 13, PS 7.4, median 4/11.4, AHI 19, CA 17, OA 1.5. Additionally slept 2 hours without mask.
  
• 4th day CPAP - 10.5 h - Pressure 6, EPR 3, actually ranging 6-4 since I believe the device's minimum pressure level is 4. data was not logged to SD card. Slept 3 more hours, felt a bit more rested but have had better days.
  
• 5th day CPAP - 5 h - Pressure 6, EPR 3. AHI 0.35, no actual events after falling asleep. Woke up earlier feeling somewhat refreshed, removed mask but then immediately went back to sleep for around 5 hours. No apneas flagged but flow limit graph higher than previous days. Flow rate looks more even, but have some odd events matching higher volume, snore rate, maybe I'm waking up? Felt more tired than usual during the day, had to take an hour nap at midday. Not sure if this is due to residual sleep from the first 3 treatment days or something else. ATTACHED Apr1
  
• 6th day CPAP - 4.5 h Pressure 6, EPR 3, AHI 0.65. Had a lot of activity on Snore and flow limit, one CA / OA / H. Woke up early and took it off not sure why. Felt really tired. ATTACHED Apr2
  

Key Points and Questions (AKA TLDR)

I feel unrested. Tried a lot of things to no success. I sleep straight for 9-11 hours, no known snoring or waking up at night. Lab Studies, stress levels, exercise all in check. Slightly overweight, but doesn't seem to be the only cause.

Sleep study AHI 5 RI 8, diagnosed mild apnea, including obstructive, central and mostly hypopnea with OSAT going under 90% for 1.5 hours. ENT did an APAP trial for 4 days, no trouble sleeping whole night, preferred F20 face mask, nasal had random mouth openings wake me up at night. ENT refused continuing APAP treatment. Felt really rested once, which gives me hope for APAP treatment. Pressure ranges between 4-10, AHI lowered from 5 to 1.7.

Bought Resmed S9 VPAP Auto, F20 Mask, been experimenting for a week. It seems like higher pressures give me central apneas.

• BPAP mode 6-12 (PS 6) caused a lot of central apneas.
  
• CPAP mode 4-6 (w/EPR), no apneas, AHI < 1, still tired.
  

Questions

• What adjustments / settings do you recommend I try?
  
• Should I try other mask if this one seems comfortable and has no leaks?
  
• Would you recommend I look into other lab studies, drugs or other medical professional?
  
• Should I record myself at night and measure OSAT levels, to see why I'm tired with a Low AHI?
  
• Should I do a proper sleep study? There's no labs where I live and others have told me they are not willing to do a study without prescription, but I can probably sort it out somehow.
  
• I kind of feel I have all type of apneas all over the place, should I try an ASV? I found a Resmed Aircurve 10 ASV for cheap ~ $1000 USD. They are hard to get without prescription here and much more expensive.
  

           

[SarcasticDave94]

Welcome to Apnea Board,

One thing you should try is lowering PS when using it. 7.4 PS is too high for most and it will cause some to a lot of Central Apnea in those who don't need a high PS.

[Sleeprider]

Well, Dave really nailed it. Your pressure support setting is too high in VPAP auto mode and this is washing out your CO2 resulting in hypocapnea and central apnea. Your results in CPAP show you don't have central events, but flow limitations are relatively high which will cause respiratory effort related arousals (RERA). The CPAP data is useful to establish a minimum pressure where obstructive events are controlled. I think there is plenty of information here to suggest some setting revisions:
Mode: VPAP Auto
EPAP min 6.0
EPAP max 8.0
Max Pressure: 12.0
PS: 4.0

If we continue to see too many CA events we will make further reductions of pressure support, or consider a high trigger sensitivity setting.