no apnea, no UARS - still having classic symptoms

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
DankShroud
Posts: 86
Joined: Mon Feb 26, 2018 10:25 am

no apnea, no UARS - still having classic symptoms

Post by DankShroud » Mon Jul 02, 2018 8:55 pm

18 year old male, untreated AHI of 7.5. I've been on CPAP the last seven months to treat my mild sleep apnea. Treatment has had no effect whatsoever. Can't speak, write, paint, drum, or care for myself. Lethargic as shit, anxious as hell. Falling asleep everywhere, unable to think or plan or affect change. I'm a former A+ honors student who used to be a competitive speaker and artist. I failed every one of my classes senior year and only graduated after some administrative finagling. I can't exercise, or otherwise occupy myself. I'm not in college. I don't have a job. I can't think well enough to talk to someone and be understood. I literally can do none of the things I want to do. Anyway, I agonized over sleepyhead for months, poring through hours of data for evidence of UARS. Found nothing. I pestered my sleep clinic until they ordered a second sleep study, which "ruled out UARS" (they didn't monitor esophageal pressure) and showed an AHI of only 1 with CPAP. An MSLT ruled out narcolepsy. My machine and sleepyhead report an AHI of .2-1.0 every night. My nightly leak rate is never over 2 L/min. My pressures are comfortable and effective; I'm convinced my therapy is as perfect as it gets. So what could be happening? I don't have psychiatric problems, I'm just showing signs of extreme chronic sleep deprivation. My eyes are bloodshot and heavy-lidded with huge black rings. I move and speak slowly, I have wild mood swings, I'm clumsy and uncoordinated, I'm disorganized, I'm unkempt and moody. I live to just eat and hide in my bed all day. I can't concentrate enough to read or translate text into narratives or anything coherent. And I used to devour books my whole life. I'm just this rambling, housebound degenerate. Exhaustive blood work has ruled out literally everything. In my heart I'm so sure that sleep disordered breathing is at the root of my problems. Nothing else fits. I feel sleep deprived, like I've been awake for 72 hours. My sleep is unrefreshing, I have vivid dreams every night, and the moment I wake up I'm in unspeakable pain from how tired I am. Sleepiness/tiredness is this oppressive, omnipresent force just crushing the life out of me. My eyes hurt, I stumble around, I don't step outside for days at a time. I've had to let go all my ambitions and obligations. Does this sound like CPAP resistant UARS? What else could this even be?!

_________________
MachineMask
Additional Comments: Pressure of 17-20, soft cervical collar, chin strap
Last edited by DankShroud on Mon Jul 02, 2018 9:12 pm, edited 1 time in total.

D.H.
Posts: 3469
Joined: Sun Sep 04, 2016 7:07 pm

Re: no apnea, no UARS - still having classic symptoms

Post by D.H. » Mon Jul 02, 2018 9:08 pm

Could it be Narcolepsy, Fibromyalgia, or some other sleep disorder? I guess you ruled out diabetes, cardiac insufficiency, kidney disease, or another disease that is not a primary sleep disorder?

_________________
MachineMask
Additional Comments: Auto PAP; 13.5 cmH2O min - 20 cmH2O max

User avatar
TASmart
Posts: 1071
Joined: Wed Jan 04, 2017 7:23 pm
Location: Eugene, OR

Re: no apnea, no UARS - still having classic symptoms

Post by TASmart » Mon Jul 02, 2018 9:23 pm

Sounds a lot like major depressive disorder to me.
All posts reflect my own opinion based on my experience and reading.
Your mileage may vary
Past performance is no guarantee of future results
Consult with your own physician as people very

User avatar
kteague
Posts: 7772
Joined: Tue May 16, 2006 8:30 pm
Location: West and Midwest

Re: no apnea, no UARS - still having classic symptoms

Post by kteague » Tue Jul 03, 2018 12:47 am

I remember asking about your narcolepsy test in a previous thread. My thoughts were around just because they didn't pick it up during this study doesn't mean you do not have it. Hopefully you read those points. Hate to hear you are not achieving any success yet. Do you have a family member who can advocate for you to relieve you of the added stress? You need a doctor who enjoys a challenge, or a teaching hospital where lots of fresh eyes feel challenged to find answers for you. Hope you find some answers soon.

_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions

HoseCrusher
Posts: 2744
Joined: Tue Oct 12, 2010 6:42 pm

Re: no apnea, no UARS - still having classic symptoms

Post by HoseCrusher » Thu Jul 05, 2018 10:22 pm

What else could this even be...?

Sometimes when traditional approaches don't seem to be working it helps to look a little "outside the box..."

Perhaps you have damaged mitochondria...

https://www.youtube.com/watch?v=d97oNRuA4uA

_________________
Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear
Additional Comments: Machine is an AirSense 10 AutoSet For Her with Heated Humidifier.
SpO2 96+% and holding...