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 :
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.
Gosh! My heart goes out to you. To deal with this at such a young age. Good luck in finding an answer. Keep at it. Someone will find something to alleviate your problems.
Check your diet? I have ALS and wish I could get 4 hrs solid sleep!
There is a lot of information there, none of it especially worrisome to me, a non-professional in medicine.
First, we should keep in mind that a polysomnography is a standardized assessment in a standardized setting, but not for the patient him/herself. It's very much strained and artificial, and much worse than having to stay in a motel room. Ideally, the patient will get enough sleep going through all the stages of sleep at least once, ideally three times or even four. You spent a long time in bed trying to sleep or 'zoned out' between actual sleep. In that time, they got just enough of real sleep that they feel they can peg you with the stats you see.
One that jumps out for me, again with no professional training at all, is that you spent very little time in REM sleep. This might be indicative of a sleep disorder, mood disorder, endocrine disorder....and that's only if your sleep that night was fairly representative of a typical night for you. And, I don't claim that your paucity of REM that night IS a disorder or that it is pathological....just that it seems low to me. Typically, a healthy person has between 15-25% REM.
Another that seems excessive is the sleep latency. You took over half an hour to fall asleep (that's A,...) and B, you took longer than the typical/statistically 'normal' time to enter REM (usually near the 90 minute mark for most people). However, even in the report they say that it could just be the artificial setting and you being wound up over the entire experience. You're by no means the only patient to report that it was almost impossible to relax with wires, noises, knowing a CCTV camera was watching you all night to check for turnings, limb movements, vocalizations, etc.
Further, your O2 sat, or oxygen saturation, apparently never got below the mid-90's, which tells me the few apnea/hypopnea events recorded when you were being observed were not sufficiently long to cause your body to deplete your blood oxygen severely. If you need more of a frame of reference, I am treated excellently by my CPAP machine with a month-over-month average, running seven years in total now, AHI of an astoundingly great 0.4 events per hour. The medical and insuring communities feel that anything less than 5.0 events per hour is 'treated'. BTW, AHI stands for 'Apnea/Hypopnea Index). They total all events that your machine says were problematic enough to record, and then they divide that total by the total numbers of hours of sleep. But, with my excellent AHI of a paltry 0.4, I still get desats running down into the mid-80's. This means I go for 20+ seconds at a time before I commence breathing again. Your 93% means your events last only 12-14 seconds long. Not bad.
On last puzzle that a sleep specialist might/should want to take a close look at: the report says that the durations of one or more of the stages of sleep are 'prolonged'. Your hypopneas and 'respiration effort-related arousals' or RERAs. are not noteworthy, nor is your leg/arm movement numerous and possibly interfering with your transition to the various stages of sleep.
Your sat levels of O2 don't seem to warrant a visit to a pulmonologist. You have minimal limb movement. But your stages of sleep and your transition to each of them seems odd to the people looking at your results. If you are not on mood-altering medications, or those that affect endocrine function, if you don't have untreated GERD, aren't rising two/three times each night to void, don't have a barking dog next door, or people on shiftwork entering or leaving the house while you're abed, I have nothing else coming to mind except a sleep disorder specialist.
@vladimir19982
Are you under a lot of stress and anxiety? Do you take any medication? Do you drink coffee or have a lot of caffeine? What is your sleep environment like? Is it dark, quiet, do you use white noise/air filter/soft music? Have you tried meditating? Have you tried taking melatonin or Calm magnesium at night? Have you tried drinking warm milk or take tryptophan supplements?
It may be good to see a neurologist for nervous system evaluation and have full blood panels done to check your iron, oxygen, thyroid, vitamin deficiencies or toxicities, heart, liver and kidney function, etc.
How is your diet? Are you vegetarian or vegan?
@vladimir19982
How is your exercise level? Do you get regular exercise?
Do you drink alcohol, smoke, vape, or do drugs? That can affect health and sleep.
Do you drink water and stay hydrated ?
Do you play video games and are you on screens throughout the day? Do you stop at least an hour before sleep?
Have you ever worked with a psychologist who specializes in sleep issues? Have you tried massage, acupuncture, yoga, etc.?
I love reading your responses. I always learn something new. I am happy to learn that less than 5 events is considered treated. So my numbers look good at least those reported by my CPAP.
Thank you for sharing your knowledge and years of research.
Dana
My diet is fine, also I am supplementing with Zinc, Magnesium K2D3.
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.
I dont have much of a stress, I take levotyroxine only, I dont drink coffe, my sleep environment is dark and quite, I also use white noise air most of the time in last 1 year. I didn't try to much of meditating I think i could. Using melatonin sometimes , doesn't help to much, but I feel some Improvment when taking magnesum, didnt try tryptophan but i tried zolpidem and it didn't help.
Full blood panels are good . I am not vegetarian and vegan.
I exercise atleast once a week,
I dont drink, smoke, vape or do drugs.
I am hydrated.
I dont watch screen atleas 1 hour before bed.
I tried massage but not acupuncture and yoga
Thanks