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 :
https://www.icloud.com/iclouddrive/01e ... 2025-03-14



Scans showing some of the awakenings and arousals during sleep:

https://www.dropbox.com/scl/fi/vuabcpqw ... z9ctq&dl=0





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'm very sorry for your condition. I have long COVID, but not nearly to the degree you do. The number of awakenings you have is similar to what happens with sleep apnea so it's not surprising how you feel and your extended sleep schedule, yours is very similar to my untreated sleep apnea. I'm not sure what you should do next, although I think you should consider a sleep ring, monitor or smart watch with sleep monitoring. Sleep studies can be unreliable because they are a one night snapshot, and if you sleep differently because of the environment they can be quite misleading. At the very least a monitor will give you an oxygen desaturation index and a sleep efficiency measure. I use a ring regularly as a cross check to the information my CPAP gives me, as well as to check what happens if I take it off in the night (its not good what happens). If you have regular oxygen drops it does indicate a breathing disorder of some sort. I would think its worth figuring that part out, if its breathing or something else, even if not apnea.

There is some possibility you do have a sleep disorder that could be treated with a machine, but its not likely someone like me could help, I've had a CPAP for almost 20 years, but that's the extent of my knowledge. I have complex sleep apnea, which is somewhat unusual, it turns a lot of sleep apnea advice on its head. I couldn't make sense out of the study data you sent, its just very different than the information I got with my studies or out of my machine.

Do you snore? Or snort when sleeping? If you sleep with a partner they are an important source of information. When I had untreated sleep apnea my wife kicked me out of bed, I slept in the guest room. That's a real tip off.

Vladica - Any reason for using triple (let alone double) spacing in your note?

Hypothyroidism and celiac disease are both major conditions that can mess you up. It might only be coincidental they developed with/after covid but it's probably not coincidental that they developed with each other. There is an association between them and they are both related to autoimmune dysfunction. Or covid triggered them, as an immune system overreaction, who knows?

I would think the weight loss would be more celiac lack of absorption than the GERD.

Your thyroid treatment is "within range" but is it MID range? Or close to the minimum? (T3,free T3, T4, etc, not the TSH which should be low.)

I assume you've had a cardiac workup to make sure there's no myocarditis or anything. If not I definitely would see a cardiologist for a full workup. If you've had un-diagnosed celiac for quite some time, you can have nutitional deficiencies that affect the heart, and covid can also.

If the heart is fine and you've had a full systems check to rule out other occult conditions, if it were me, I would first go with tweaking the thyroid. Both too low and too high circulating hormones can cause sleep disruption, even if you are technically "within range". You might try fine tuning the doseage. Hopefully you have a cooperative doctor. You could even look into dessicated thyroid as opposed to levothyroxine. Some people do a lot better on the bovine or porcine glanular products.

I AM NOT A DOCTOR. I know the thyroid stuff from dealing with my mother's hypothyroidism. And the celiac stuff from having a friend with it and being a bit gluten intolerant myself having a celiac gene, but short of actually being celiac myself.

You did the right thing to rule out sleep apnea first, that's a prime suspect when you go from feeling great to feeling fatigued all day.