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Sleep problems for which there is no diagnosis, please help
#1
Sleep problems for which there is no diagnosis, please help
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 : Will send you in PM


Scans showing some of the awakenings and arousals during sleep: Will send you in PM



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.
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#2
RE: Sleep problems for which there is no diagnosis, please help
Not an expert, but have you done a MLST to rule out narcolepsy?
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#3
RE: Sleep problems for which there is no diagnosis, please help
Do you know what AASM rules they used to score your study? They're a bit confusing, but I'm going to guess they used the 4% desaturation rule, which requires an event to also have a 4% oxygen desaturation in order to be scored, regardless of if there is an arousal. This will significantly underreport more 'mild' sleep breathing disorders, like UARS. A 4% oxygen desaturation is somewhat unlikely in an otherwise relatively healthy young person.

https://aasm.org/aasm-clarifies-hypopnea...-criteria/

27 arousals in 4.5 hours seems a bit high but not too bad. 79 sleep stage transitions on the other hand does seem like a lot...
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#4
RE: Sleep problems for which there is no diagnosis, please help
have you had a successful in lab sleep study ?  if not get your doctor to order a sleeping pill so you can sleep thru it.
First Diagnosed July 1990
Am now Great-Great Uncle Bill
MSgt (E-7) USAF (Medic)
Retired 1968-1990
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#5
RE: Sleep problems for which there is no diagnosis, please help
I am sending empathy your way. As a friend said, "Lack of sleep is a spiritual crisis."

It is hard to stay hopeful with such insomnia, and its effects. 

KEEP TRYING new things, new doctors, new tests!
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