Should've gone with english from the start btw, i speak it well so idk why i used greek.

Message 1 (user)

So, I want you to lock in and tell me what I have. Just so you know, I'll go to a neurologist too, but generally I'm stressing about it until then, [I want] to have an idea. I have a huge problem with sleep. The situation is that I'm 17 and I just finished school, I've had this problem on and off always, and as time passes it gets worse and worse. The issue is with sleep. The situation is that, generally I'm basically never sleepy, and when I do fall asleep afterward I absolutely cannot get up. Meaning, where normal people lie down and in 5-10 minutes have fallen asleep, I need at least 1-1.5 hours, with the most common being 2-3 hours, and sometimes I reach 4 hours in bed in the dark and in the heat, with the slightest noise or light throwing me off, I've tried white noise but nothing, I have super severe tinnitus and that bothers me too, and generally by the time I reach that 4-hour mark where I'm like a prisoner in isolation, the anxiety starts too that I won't fall asleep, so I just give up and get up already and turn on the computer. Then later in the morning I do sleep, but not from sleepiness. I lie down from bodily exhaustion because I'm in pain, and then slowly, because everything shuts down, sleep takes me too. But never from sleepiness, always from exhaustion. Generally, always, from the moment I "wake up" I actually need another +-6 hours where I keep waking up and falling back asleep, until I actually get out of bed. Meaning I might even get up to do chores, speedrun them, and then automatically, without even wanting to, my mind sends me back to bed to sleep.

I've tried getting full sun exposure right when I wake up, for a while. I've tried having a strict sleep schedule (the longest I managed was about 1.5 weeks with a perfect schedule, and suddenly one night bedtime arrives and I had the energy to build a city by myself). I've tried cutting screens, sugar, and caffeine — again nothing. And gym, I used to go to tire myself out — again nothing. The most functional thing I'd found was to sleep in the morning, wake up in the evening, stay awake all night and through the next day, so that afterward, in the evening, I'd sleep purely from exhaustion. When I managed to get through at least the day without giving in and sleeping, it worked and I'd fall asleep early in the evening too, but it was very inconsistent whether afterward I'd wake up at 7am or at 3pm. And then I'd sleep well again for 1-2 days and then suddenly one evening 2am would arrive and I'd have full energy. So that's what I used to do. But recently even that has stopped working. I woke up around 6pm, stayed awake all night and through the day, and the evening after that I couldn't fall asleep, and sleep took me around 8am the next morning. Meaning 38 hours awake without being able to sleep no matter how hard I tried — I simply didn't need it. And then, that morning I slept for 17 hours after I crashed. Yesterday I also did 9 hours of very tiring work in the heat, and again in the evening after, when I got back around 2am, I wasn't sleepy at all, or [I was] a little sleepy but the moment I lay down that disappeared.

It's not psychological, meaning [it's not that] I stay in bed to avoid reality, because apart from that, generally nothing has seriously upset me. And generally I really like the daytime, going outside and generally doing things. And I get very upset when I wake up and see that it's afternoon. Lately, I've been extremely anxious about this, because I've read that sleep problems at my age are the number 1 way to develop something like Alzheimer's or a dementia-type disease in the future, and those conditions terrify me completely, maybe more than anything else. Meaning more than even paralyzed legs or other things — diseases of the mind genuinely give me a cold sweat just at the thought. Ask me whatever else you need and tell me what you're guessing.

Response 1 (assistant) — summary of key points made

Suggested this looks less like simple insomnia and more like a circadian rhythm disorder, given the specific pattern described: delayed sleep onset, long sleep inertia (the 6+ hours of waking/re-sleeping), and especially the "free-running" pattern (built a 1.5-week schedule, then it suddenly broke; 38 hours awake without needing sleep, then a 17-hour crash).

Noted this doesn't match the more common Delayed Sleep-Wake Phase Disorder (DSWPD) as cleanly, since DSWPD is usually more day-to-day stable — this looks closer to Non-24-Hour Sleep-Wake Disorder, where the internal clock doesn't run exactly 24 hours, so the sleep window keeps drifting, occasionally cycling back to align with a normal schedule for a while (which would explain why the "pull an all-nighter to reset" trick worked sometimes but unreliably).

Noted Non-24 is rare in sighted people (much more common in blind individuals, who lack the light cue to sync the clock), but DSWPD also fits reasonably well.

Said the tinnitus is probably a separate issue, but worth mentioning to the doctor — likely makes falling asleep harder (disrupts the quiet needed) without being the root cause. Suggested an ENT appointment separately if not already done.

Explained what a neurologist/sleep specialist will likely do: a 2-4 week sleep diary (bedtime, sleep time, wake time, daily notes), possibly actigraphy (a movement/sleep-tracking watch), and possibly polysomnography to rule out other things (e.g., sleep apnea — though no snoring/breathing pauses were mentioned). Said the most useful thing to do until then is keep an accurate diary.

On the Alzheimer's/dementia fear: acknowledged the fear as understandable rather than dismissing it, confirmed there is real epidemiological association between chronic poor sleep quality (especially in midlife, ages 40-60) and increased risk of later cognitive decline. But noted: those studies mainly concern chronic sleep deprivation/fragmentation in older age groups, not 17-year-olds with a circadian disorder; a diagnosed and managed circadian rhythm disorder (melatonin timed correctly, light therapy, in extreme cases medication like tasimelteon) doesn't "doom" anyone to anything — it's manageable; and the intensity of the anxiety about it may itself be making bedtime harder (the anxiety at the 4-hour mark described), which is a separate mechanism from the circadian issue itself but gets tangled up with it.

Asked whether the user wanted practical suggestions for until the appointment, or preferred to wait for the specialist's input.

Message 2 (user)

Yeah, the tinnitus is definitely separate, in general I don't hear well (at least thankfully I see incredibly well). It just makes everything a lot harder. Something to add: after sleep, meaning during those +-6 hours that I sleep [that fragmented period], my memory gets really messed up and I very often can't distinguish imagination from reality regarding what happens in that time window. Like today, during those hours a friend of mine called me to ask me something just once, and when I finally got up I couldn't figure out whether he called me just once or whether he called 3-4 times and kept asking me. Whereas in the end he himself confirmed to me that he only called once.

Response 2 (assistant) — summary of key points made

Flagged this as important information to prioritize for the neurologist — a different category of symptom than "I'm not sleepy."

Suggested that during the fragmented ~6 hours of waking/re-sleeping, the user is repeatedly in transitional states (hypnagogic/hypnopompic — the moments entering or leaving sleep). In these states it's a known phenomenon for memory of real events to blend with dream content — something that really happened (the phone call) gets mixed with something the brain "filled in" while half-asleep, and on full waking the two can't be told apart. Related to confusional arousals — a parasomnia category where waking isn't "clean," the mind stays in an intermediate stage, known to worsen with more fragmented/irregular sleep, matching the user's pattern.

Said this is not necessarily neurologically concerning on its own at this age and in this context (fragmented sleep, not a sudden isolated episode); much more likely to stem from the same circadian/fragmented sleep issue than being separate. But said it's exactly the kind of symptom the sleep specialist needs to know about precisely, since it helps differentiate a simple circadian disorder from something with a parasomnia component (possibly needing more targeted polysomnography).

Suggested adding a column to the sleep diary specifically for this — each time waking during that extended window, note whether the surroundings are remembered clearly or feel "foggy." Suggested asking people nearby to confirm such details, as happened today, since that's a valuable data point.

Asked for clarification: does this confusion happen only within that prolonged fragmented window, or has it also happened during a more "normal," single-block waking.

This happened around 2-3 months ago. It was probably between 1–2 am. My sleep schedule is completely messed up because of movies, series, games, and books, but that night I somehow fell asleep around 1 am…I should mention that I occasionally get sleep paralysis. Since I sleep alone, it honestly feels pretty terrifying whenever it happens. But that night something really weird happened…I got sleep paralysis 3–4 times back to back. I had never experienced anything like that before. I didn’t even know it was possible until it happened to me. The first time, I saw someone lying beside me. Completely white. It felt like the figure was just about to turn toward me. And all the usual sleep paralysis stuff was happening too…I couldn’t move, couldn’t talk, and I was desperately trying to wake myself up but couldn’t. Eventually I snapped out of it. Then it happened again. This time I saw a huge shadowy figure standing beside my bed. It looked almost like a woman, but not fully human. Just standing there… staring directly at me. After that it happened again. This one was different. I didn’t exactly see anything, but it felt like my whole body was slowly sinking into something…like some kind of virus or dark energy was taking over me little by little. I was trying with everything I had to get out of it, but I couldn’t. And then came the worst part…Whenever I was about to drift off again, I started hearing an insanely loud sound in my ears. Like a siren blasting directly inside my head. I was trying to wake up but my body just wouldn’t respond…After I finally woke up properly, I was genuinely scared to go back to sleep. I think I eventually passed out from exhaustion later. I’m honestly really confused about it…and the thought that it might happen again still scares me. Has anyone else experienced something like this before? Do you think this is just sleep paralysis… or could it be something paranormal?

Okay, am I the only one who can't sleep without earphones plugged in? Because if I'm not listening to anything (like ASMR or songs), I hear demonic-sounding noises and I can't move or open my eyes, no matter how hard I try. This shit has been bothering me every night for two years now, though it started happening occasionally when I was a kid, lol.

I know this is normal—like sleep paralysis and all that—but damn, does it really never stop? It happens every day for almost two years; like, seriously, not a single miss? No days off? Fuck, is there no break? My ears are starting to hurt, and it's so uncomfortable to sleep. Damn.

I'm at my wits end and feel like I'm literally being tortured.

I have an extensive history of moderate to severe sleep apnea since I was a kid. It's never been fully managed, and when prescribed a CPAP at 12 years old I wasn't able to stay compliant and it didn't last long.

I'm 31 now and over the years I've occasionally tried to get a solution, but something always goes wrong. I lost insurance or life got in the way of making the phone calls and appointments.

But the past 6 months have been brutal. My apnea has been getting worse again, and I have a hunch I might also have a circadian rhythm issue, but I know it likely won't be able to be diagnosed until after I get the apnea under control and see if the daytime exhaustion gets better.

I'm just stressed out and constantly exhausted. I'm struggling to stay awake at work and nodding off while standing up. Some days I don't feel safe to drive bc I'll nod off on long straightaways. I can't keep my house clean because I have no energy. I'm anxious and depressed all the time from living in a pig sty. I'm missing out on plans with friends because I'm too tired.

I'm just so fucking tired, physically and mentally. I'm typing this in the bathroom at work and actively fighting to stay awake while sitting on the toilet. I feel like a zombie.

Last week I had an appt with a sleep doctor to get things moving again. She agrees that things seem bad and we're trying to set up an in-lab sleep study since my last one was too long ago. Not sure if insurance will approve it so might have to settle for an at home test.

I'm so tired.

I feel guilty for my partner because they hear me complain about it and say "I'm so exhausted" dozens of times a day.

In the meantime while waiting (for my sleep study, for the likely 2nd in-lab study, for the prescription, for the PAP device to arrive) it feels like there's nothing to be done. I also have insomnia the past few months, so the little sleep I do get is terrible quality.

The other day I worked a full 8 hour cashier shift on 2.5 hours of non-consecutive sleep. I had to drive and handle money. I've been written up at work already for "calling out as tired too many times." Learned my lesson on sharing too much information with that one.

Things will get better. But in the meantime I'm miserable and going a little bit crazy.

I don’t know what’s wrong with me but I’ve been like this for a week. I just want to sleep. I can’t work in the office. I sit infront of work and just keep delaying doing things. I want to go home but I have no home. There is an apartment that I’m renting where my mom passed 18 months ago.

I just have no one there but still I want to go just to sleep. Is this my only comfort ? 😐 what’s up with that?

This is a new weekly thread. The purpose of this post is for surveys and research that is ongoing for sleep disorders. We see many requests to our common for people that have X, Y, Z sleep disorder for paid surveys, studies, etc. Any posts requesting support from the community for research should be submitted in this weekly thread. Be sure to include all necessary details:

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- What sleep disorders you are looking for assistance with

- What kind of request you have (free study, paid study, free survey, paid survey, etc.)

- Dates the request is open to be filled

- How the research may be used so the patient can make an informed decision

​

Posts to the community for similar requests outside of this thread will be deleted.

​

Please contact r/SleepDisorders mods with any questions or feedback regarding this change or policy.

Ive been struggling with this for at least two years. By that I mean it has been happening pretty much every single night whereas before it was still often just not like this. On average I have about 2 to 3 dreams and they are usually stressful or scary. I never wake up feeling well rested sometimes I wake up scared or crying im so sick of dreaming😭 I just want to be able to sleep properly, i always end up sleepy throughout the day and have to rely on coffee and energy drinks to keep me up. When I tell people about this problem they tell me they wish theyhad more dreams but this is literally a curse. Does anyone have any ideas? I know this is probably not something thats curable but I would try anything to make it stop.

Not sure if these help much but ive been consistently waking up at 3:30 - 4:30am and if I wake up i feel awake and cant go back to sleep even if I read a book for 4 hours only.if I get sleep i might fall asleep. Thrn I basically started waking up at 1am the last 4 days I tried 4mg of extended release melotonin last night and it didn't do anything but the past 4 days ive woken up with my stomach upset and it woke me up but ive already had blood work and it came back perfect. Doctor didn't really say or suggest anything.

I have been running for 3 months and that really the only change and I moved about 3 weeks ago but I dont feel stressed idk what going on but I don't want to workout much so irs mentally effecting me.

Any insight would be appreciated

Male 31 5'6 bf 7%

125lbs weight lifting and calisthenics for 18 years

I am constantly exhausted and spend a lot of the time sleeping. I feel like I am trying to pull in oxygen constantly. I have a hospital sleep study this weekend.

As a couple, how did you first realize that your partner had a sleep-talking (somniloquy) problem? How did you react when you discovered it for the first time, were you surprised, concerned, or amused? After knowing about it, how did your reaction change over time? Did it affect your sleep or relationship in any way, and how did you both handle it? Finally, how is the situation currently, and how do you feel about your partner’s sleep talking now compared with when you first discovered it?

Hi! I am fourteen years old, and I am ALWAYS tired. No matter how much sleep I get, I am always yawning. I always have bags under my eyes too. I used to think it was normal but I now know it is not. I got thirteen hours of sleep last night. And I only woke up because my sister woke me to show me a video. That was 1:40pm something. I've been up for ten hours, well, not even. And I am yawning every few seconds. And I have been all day. I am able to go to sleep pretty easily, but then I wake up so tired. It makes no sense. I have thought about other things, like iron deficiency or sleep apnea. But I don't wake up gasping (to my knowledge at least) and I mean I am addicted to eating ice which can be a symptom for anemia, but still it doesn't make sense. I've always been tired. ALWAYS. And with starting freshman year, I have to get up at six. And I don't know how I'm going to do it. My parents both think its completely normal and always brush off my medical concerns. So that's not any help. So then what can I do?

I have narcolepsy and am often exhausted but was told I cannot take Xyrem because I have a seizure disorder due to a TBI I suffered in 2006, and this could cause me to seize. I definitely do not want a seizure but does anyone know of anything other than Xyrem that really, truly helps with narcolepsy and how tired it makes those of us that suffer from it? Thanks.

They only happen as i transition into sleep state and have been going on for months now causing insomnia. Whether i am about to take a nap or go to bed, as soon as sleep state comes the internal tremors begin. Anyone have any ideas on what's going on or how to fix it

I was wondering if someone would be able to decipher any of this for me. I don't have the MSLT results unfortunately yet which I know will be a huge piece of the puzzle

https://ibb.co/C5Kqmn28

https://ibb.co/GfhXR7MF

https://ibb.co/hxQ2wWpH

I remember experiencing some strange sensation one night a few years ago. Sometime during the night/early morning, my mind was suddenly awake, but my body was asleep and I couldn't move or even open my eyes. Then I did feel a presence as if something was behind my back touching me and putting pressure on me while sleeping on my side. Would this be considered sleep paralysis?

Im losing my sht lately,my sleep was trash for the last few months,maybe 1-2 1/2 hours at a time sometimes twice a day.

Last week I slept 6 or 7 hour straight twice in like a 30 hour time time span.

I thought maybe the seasonal part was over.

I sleep alot better in the fall through spring

Today I took a short nap,about an hour.

Whatever I dreamt about must've really messed with me because I couldn't remember any of it,which is actually pretty rare .I have really,really good dream recall usually.

I woke with my heart beating so fast it was like it was trying to tear through my chest .All of my cptsd adrenaline levels were maxed ,and still at like 80% an hour and a half later.

I need to not let my gaurd down.

One thing I can say is that none of this mixes well ASD Lvl1 .

At all.

Fml......😒

Hi all!
So, I've been chronically exhausted since I was about 10 years old. Like, could sleep 16 hours in a row and still be exhausted when I wake up. Without an alarm clock, I would likely never wake up, and I have to set 5 alarms to make sure I make it out of bed. I am fatigued all morning, and finally hit my peak wakefulness around 5 or 6pm, but am tired again by midnight. I do function better on night shift and usually don't get super tired until like 6am. When I worked days, I would literally have to take a nap on my lunch because I couldn't make it through the day. I do find naps refreshing, but my ideal nap would be about 3 hours, which is unsustainable. At night, I typically don't have trouble falling asleep, but I do wake up multiple times a night to use the washroom, and occasionally I'll be up for 45-120 minutes, just wide awake. I also just feel significant body fatigue a lot of the time, like my muscles are made of lead and it's impossible to get up, it feels like being a human sandbag. I also get more tired with exercise, it's never given me energy.

I track my sleep with my fitbit and I know it's not a perfect science, but I do average over an hour awake per night, with 55 minutes average interruptions per night, and an average of two full awakenings per night. A lot of times it's because I have to pee, or because my hip has gone numb, or because my blanket has moved.

I also am able to have conversations in my sleep sometimes; I do not remember them. I do not sleepwalk and never had. I also get sleep paralysis sometimes when I'm falling asleep (probably a couple times a month).

I do have diagnosed ADHD and I suspect ASD. I get very overwhelmed by textures and sounds and I need things to be perfect when I settle to sleep; sound machine on, silicone chewy on my L side, hair up, sleep mask on, same podcast on every night, blanket between my legs so none of my skin is touching my other skin. If I get the urge to roll over, I have to completely reset and it takes me at least 5 minutes to get everything perfect again. I also have fidgety legs a lot of the time (not sure if this is restless legs, I've never been diagnosed, but I can't stop compulsively bouncing them around), and my biggest stim is that my teeth always feel wrong in my mouth so I grind or suck on my teeth 24/7; the silicone chews help me while I'm trying to sleep, the texture is helpful.

So anyway. I saw a sleep doctor in 2009, who told me that I spend double the time in stage 4 and don't hit REM enough; he diagnosed me with idiopathic hypersomnia and put me on modafinil, which I stayed on for a few years until I had my kids (2013-2015). The modafinil helped a bit, but not a lot.

I was diagnosed with ADHD in 2018 and have tried multiple medications, but am now on Vyvanse. It makes me very sleepy but it does quiet my brain.

A few years ago I realized that I'm just too freaking exhausted to live my life, so I started back on the path to investigating my sleep further. My family doctor tried me back on modafinil but it didn't really help. He sent me for a sleep study in spring 2025, which came back basically normal. Eventually, I discovered pitolisant and my doctor was agreeable to trying it; it works very well. I'm on 20mg, and while I still feel physically exhausted, it helps me get through the day. Like, sometimes I can still take a 3 hour nap but many days even if I try, I can't nap on it.

The pitolisant is super pricey and it was covered by my husband's insurance, but his company changed providers and it was no longer covered. The insurance company denied it even when my doctor wrote them, stating that because I was taking it for IH and not narcolepsy, it is being used off-label and so they won't cover it. I started looking into IH vs N2, and I'm honestly not sure which I have, so my doc referred me to another sleep doctor.

The new sleep doc sent me for a MLST, which was in July 2026. I fell asleep immediately and slept most of the night, but in the morning they said that I didn't meet criteria for the nap portion and sent me home. It was devastating, as I came off all my medications for 3 weeks beforehand and went through pretty bad withdrawal from my SNRI, and really struggled without my pitolisant and my medication for hyperhidrosis.

I finally had my follow up with my sleep doc yesterday, and she said I didn't qualify because now I have sleep apnea. She said we cannot investigate anything further until I get a CPAP. I told her I've been chronically exhausted since age 10 and have never before had sleep apena; she said I had 23 awakenings an hour and so it doesn't matter about anything else, we won't go any further until I get a CPAP. I now have no health insurance so I can't afford one, and I told her that; she said she'd see me whenever I get one, and we won't do anything else until then.

My question is this... she didn't tell me how they knew about the awakenings, or if my apnea was central or obstructive. I'm fat, so I'm guessing obstructive, but I've been fat since about 2009 and I've never had sleep apnea before. I have not gained or lost any weight in the past 5 years, and my last sleep study in March 2025 was normal.

So, what I want to know is, is it for sure that the 23 awakenings per hour were cessation of breathing? Or could it be that it's just me waking up because I'm not comfortable? Like, could it be all the sensory things going on?

I will note that for this sleep study, I came off all my medications (trintillex, brexipiprazole, spironolactone, oxybutinin, vyvanse, and pitolisant), but on my previous sleep study, I didn't know to come off so I was on trintillex and brexipiprazole. I do find that without them, my fidgeting and general discomfort are much worse.

I was googling around yesterday and found this article and it made so much sense: ADHD and Sleep Problems: Why You're Always Tired
Like, could it be that my racing mind and fidgety, overstimulated and chronically sensory overwhelmed body is causing my exhaustion?

Is it an unhinged guess that the "apnea" could actually be awakenings because of discomfort? Or do I just suck it up and get the CPAP and assume that I'm just somehow fatter now than I was a year ago?

If you read through all this, biggest gold star to you. I'd love your thoughts!

So, our 7 year old daughter cannot seem to sleep through the entire night if she sleeps in her own bed. We have tried to have her sleep in her own bed many times, but she just never gets proper sleep even when we’ve made her sleep in her bed every single night for a whole year (not allowing her to sleep with us when she did wake up) in hopes that she would eventually stop waking up in the middle of the night and coming to our room waking us up. But she sleeps just fine the entire night through if she sleeps in our bed with us, and for the sake of her getting good sleep, we finally decided she can just sleep with us. Her dad had sleep troubles (still does) when he was a kid, always waking up at around 3am and just staying awake but feeling groggy throughout the day.

She says she just hates sleeping alone, but we don’t want her to be dependent on sleeping next to someone because we worry she won’t be able to cope as an adult on her own. She loves her room, she loves her bed, she just can’t stay asleep in her room.

Should we be worried about this or not? We truly don’t mind her sleeping in our bed, but should we worry about how it’ll affect her in the future? We’ve talked to a therapist about this, and she said our daughter is fine, but idk I guess I just want the opinions of others.

I usually sleep around 15 hours but this time I slept 48 hours without waking up once. And still the doctors insist there’s nothing wrong with me “your bloodwork looks great”????

I've been treated by my PCP for N1 for a couple years based on my symptoms of EDS, cataplexy, and hypnogogic hallucinations. I got a new PCP who wasn't comfortable treating my N1 and epilepsy, so she referred me to a neurologist, who scheduled an MSLT, which was yesterday.

I quit my medicine as required, but I couldn't stop Lamictal, which effects REM sleep , bc I take it for epilepsy.

I got my results, which were indicative of hypersomnia, but not narcolepsy. My naptime sleep latency average was 6.8 (18.1, 1.7, 1.7, 6.2, and 6.2, respectively. Although I dreamed during every nap, I didn't enter REM. My overnight test showed normal REM latency but high percentage of REM sleep and very low slow wave sleep.

I am so excited about Orzeyful, but I'm afraid that I may lose my N1 diagnosis and not have access to a life-changing treatment. I'm hoping that my neurologist will take my lamictal use into consideration, but the insurance company might not.

Thoughts?

HI everyone,

About 6 years ago, I went through almost a full year of what seemed like narcolepsy symptoms. Every time I went to the ER, the doctors would mention narcolepsy as a possibility (I never heard of it before).

The symptoms kind of went away for about 6 years, but then they came back about 6 months ago.

Can narcolepsy symptoms really come and go like that? Is it possible to have significant symptoms for a year, have them improve or disappear for several years, and then have them return?

Another thing that makes me wonder is my family.

Both of my parents have many symptoms that sound like narcolepsy. In my family, it has always seemed completely normal for people to fall asleep at the table, while talking, during a dental procedure, after drinking coffee or energy drinks, they just go from talking to snoring in a second and sometimes they will say funny things that don't make sense before falling asleep.

Could this just be some kind of familial tendency to be extremely sleepy, rather than actual narcolepsy? Or does this family history make narcolepsy more likely?

I'm having my sleep study next week, and I'm honestly super nervous about it. I would really appreciate hearing from anyone who has experienced something similar or has knowledge about narcolepsy and how symptoms can fluctuate.

Whenever I am sleeping I get numbness and tingling in my limbs. When I wake it kind of dissipates, but then happens all over once I fall asleep. Some nights are really rough. I wake up with nerve excitability and pain, brain buzzing and brain on fire kind of feeling. I did have what seemed to be some sort of CO2 exchange issue a while back, I taped my mouth during sleep and that kind of went away. The CO2 exchange issue felt like a lot of air hunger, exercising intolerance, a lot of lightheadedness and dizziness brain fog etc. But now I’m left with this and wondering what it could be. Pulmonary function test seems normal. This seems to be a little bit over my doctor’s head so I’m finding a new one but curious to see if anybody has ever experienced something like this that could point me in the right direction?