Sleep problems for which there is no diagnosis, please help

Posted by vladimir19982 @vladimir19982, Apr 5 8:54am

I beg you, please help me. For the first 22 years of my life, I never had any trouble sleeping—I used to wake up feeling rested, energized, and ready to exercise. I had no idea just how amazing that “normal” feeling really was, until it vanished. Now, even after sleeping 9–10 hours, I still feel exhausted. I’m too tired to do anything, I lack the motivation to be productive, my concentration is awful, and my memory is terrible—all of this at just 26 years old.

Everything started in 2020, after I recovered from my first bout of COVID-19. I began to notice I was waking up feeling unrested, and over time it got worse. Using a humidifier or sleeping with a higher pillow helps me sleep just a little bit better.

I set out to find a solution to this problem, and along the way I discovered the following:

2021: Diagnosed with hypothyroidism (I’m on therapy and my TSH and other hormones are currently within normal ranges)

2023: Diagnosed with gastritis, and ever since then I’ve had issues with acid reflux (it makes my sleep even worse if I don’t watch what I eat at night)

2024: Diagnosed with celiac disease, and I’ve been adhering to a strict cross-contamination-free diet for over half a year

I am male, 26 years old, 186cm(6,1 ft) height, dropped weight from 88kg(194lbs) to 72kg(158lbs) due to acid reflux in last two years but still no change in sleep.

I had two sleep studies that were unsuccessful because I couldn’t fall asleep during them. But in 2024, I finally managed to have a full-night (v-EEG/PSG) video polysomnographic/EEG recording, during which I slept for 4 and a half hours.(When at home I have no problem to fall asleep and ussualy I sleep at least 9 hours)

What they found was that I had 17 awakenings and 27 arousals. The doctor also told me that I don’t have sleep apnea in any significant measure (it occurred only twice throughout the night) and emphasized that among 120 known sleep disorders, he couldn’t classify mine as any of them.

I’m wondering if there’s a chance I might have UARS, even though my doctor said I don’t. In some parts of my sleep, my SpO₂ dropped to 93%.

I am desperately begging for help so that I can feel like a normal person again.

What could be my sleep problem?

Below you’ll find:

The doctor’s report

A Google Drive link containing the full-night (v-EEG/PSG) video polysomnographic/EEG recording :

Scans showing some of the awakenings and arousals during sleep.

A full-night (v-EEG/PSG) video polysomnographic/EEG recording was performed using a longitudinal bipolar EEG montage (18 channels), along with an additional EEG channel for sleep detection (O2–A1, O1–A2, C4–A1, C3–A2).

v-EEG/PSG

The v-EEG/PSG started on April 24, 2024, at 21:15:48 and ended on April 25, 2024, at 07:32:44.

Total Recording Time (TRT) was 10:01:03.

Sleep analysis started at 22:00:17 and ended at 07:21:28 the next morning.

Time in Bed (TIB) was 09:10:30.

Total Sleep Time (TST) was 04:21:30.

The total number of awakenings was 17, with 27 arousals and 79 stage shifts.

Sleep Efficiency Index (SEI) was 47.5%.

Sleep occurred in 3 cycles (abnormal in duration and temporal distribution).

Apnea/Hypopnea Index (AHI) was 3.21/hour, corresponding to the RDI. Apneas/hypopneas in sleep were clinically insignificant.(Doctor told me that during sleep there were only 2 Apnea/Hypopnea during sleep, 3.21 AHI is counted while I was awake too)

Breathing was regular, 12–14 breaths/min, with no interruptions or paradoxical breathing movements.

Awakenings were spontaneous, and sleep onset was prolonged.

While awake, the patient spent 47% of the total registration time; in Stage N1, 6% of TST; Stage N2, 58% of TST; Stage N3, 27% of TST; and REM sleep, 9% of TST.

Baseline oxygen saturation was 97%, with a minimum of 96%.(We can see in the images that the lowest was 93% not 96%, could this be due to circulation in the hand?)

Periodic limb movements in sleep were rare, with a PLMS index of 2/hour.

Morning awakening was normal.

Sleep onset latency (time to fall asleep at night) was 37 minutes and 46 seconds.

REM sleep latency was 151 minutes.

Technical Conclusion:
The overnight v-EEG/PSG shows a slightly prolonged sleep onset latency (possibly influenced by laboratory conditions). REM sleep latency is prolonged, and total time to achieve stable sleep (WASO) is also increased. Consequently, the Sleep Efficiency Index (SEI) is significantly reduced (due to disrupted sleep continuity, frequent awakenings, and arousals). Sleep architecture is disturbed (reduced SEI, altered progression through NREM stages, prolonged wake time, and substantially reduced REM). Sleep continuity is also impaired (shortened sleep stages, frequent awakenings, and arousals).

Overall, the findings indicate:

Reduced efficiency (low SEI),

Disturbed transitions among sleep stages (prolonged wake after sleep onset, reduced REM),

Clinical significance of these disruptions given the increased number of awakenings and stage changes, as well as the prolonged duration of certain phases.

I can send you link for pdf file and polysomnography.

Interested in more discussions like this? Go to the Sleep Health Support Group.

@vladimir19982

Thank you very much for long anser, do you know any sleep disorder specialist that is recognized as the best of the best, so I can go for online consultation and pay for his examination of the materials i have aviable.

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I'm sorry, but I have never had to look into that specialty because I don't have (badly enough) disordered sleep of the kind that a sleep specialist would help to treat. My sleep quality, even though it doesn't run very long each night (between 5.5 and 6.5 hrs typically), is rather good according to my Galaxy watch. I seem to get enough 'deep' sleep, enough REM, I only take between 10-15 minutes to fall asleep typically...and I enter each stage of sleep over the night within the range of time variation that the empirical data says is typical for healthy people. Even better, and no I'm not bragging...just very, very grateful...I still, at almost 73, don't have to rise even once to void. My 85 year-old dad has had to void at least twice each night for over 20 years...surprising.
I found this with the appropriate google search. It may be useful for your purposes:
https://www.highlyhealing.com/the-7-most-trusted-sleep-physicians-in-the-united-states/

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@vladimir19982

Thank you very much for long anser, do you know any sleep disorder specialist that is recognized as the best of the best, so I can go for online consultation and pay for his examination of the materials i have aviable.

Jump to this post

Dr Antoniou at Penn Medicine. She does televisits as do the sleep therapists from Penn. have helped me tremendously

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I AM SO SORRY. NO ANSWERS, BUT WANT TO SHARE THAT I'VE HAD SLEEP ISSUES MOST OF MY LIFE, THEY WERE ADDRESSED WITH MEDICATIONS. THEN AFTER A DEMENTIA DIAGNOSIS, BEGAIN SLEEPING A MAXIMUM OF 4 HOURS, IF THAT, EVEN WITH DOCTOR PRESCRIBED MEDS.

MY APPROACH NOW IS TO 'REST' WHENEVER POSSIBLE--DESPITE NOT BEING ABLE TO FALL ASLEEP -LISTENING TO SOFT MUSIC, READING SOMETHING LIGHT. I COULD BE WRONG BUT LYING STILL SLOWS DOWN HEART RHYTHM, BLOOD PRESURE, BRAIN ACTIVITY. I'M NO DOCTOR, BUT I TRY TO EASE MY ANXIETY OVER NOT SLEEPING, AND JUST TO REST--WISHING YOU ALL THE BEST.

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