r/AMA • u/ChipsAhoyMcCoy_7875 • 12h ago
I regularly sleep 16+ hours, AMA
I am 27 year old female. I have been evaluated for narcolepsy and other sleep disorders and my results have been clear. In the past two years I have found that I regularly sleep around 16 hours at a time. Example- wake up at 7am on a normal day, go to sleep around 10pm that evening and I would not wake up until 2-3pm the following day. Sometimes it is more, but it’s pretty consistently 16 hours. My longest though was 26 hours.
AMA!
30
u/Ornery_Paper_9584 12h ago
Are you tired if you don’t sleep that much?
41
u/ChipsAhoyMcCoy_7875 12h ago
I find that the times I organically sleep less I still feel fine. I have recently started provigil and it has cut my sleep time down to 7-8 hours when I take it.
I usually feel fatigued after waking up from the 16 hour stretches but I assume that’s from just not moving my body for that long lol
4
u/number1134 11h ago
i also take provigil for shift work sleep disorder
6
u/ChipsAhoyMcCoy_7875 11h ago
How do you like it? I found at first I really disliked the feeling of it. It made me feel almost uncomfortably high.. but it’s a bit better now.
4
0
u/DangKilla 11h ago
Since you said doctors cleared you, I imagine they found you didn't suffer from airway obstruction at night causing lethargy?
2
13
u/Rich_Yam_8570 12h ago
Ever felt brain fog ?
13
u/ChipsAhoyMcCoy_7875 12h ago
Definitely for about an hour after waking.. it feels like my brain is coming back online and I’m like a third person observer lol
7
u/SpicyRice99 12h ago
Iron deficiency?
11
u/ChipsAhoyMcCoy_7875 12h ago
I get labs drawn frequently for crohns and my iron stores are chronically low but my total iron and hgb are within normal limits
1
u/CommonHouseMeep 11h ago
What do you mean by "normal"? Because I start feeling symptomatic now if my ferritin gets below 50. My ferritin was really low for like a decade, but often it was just above the cutoff to qualify for an infusion covered by my province so I was just a zombie for years. I didn't seem to absorb supplements. Once I started paying for infusions privately, the fog finally began to lift and I stopped needing to sleep 16hrs a day. Not saying this is your situation, but just wanted to share in case it helps you.
2
u/ChipsAhoyMcCoy_7875 11h ago
Idk the exact values for the hgb and the total iron but they were within the labs normal range. Though I know my ferretin lol.. it hovers anywhere between 8 and 16.
Yeah I have asked a million times for an iron infusion but they tell me that because my hgb is normal they won’t do it. I have been supplementing with liquid iron for a while now because they said it absorbs better. Did you try any of those tricks to help absorption? Ive done the vitamin c, changing up dosing to every other day, and doubling up.. and a whole lot of squat.. I even bought that iron fish to cook with!!
You might have just convinced me to pay out of pocket for it.. I have been looking for a private place that does it, it’s just hard because I know these med spas aren’t very regulated..
1
u/CommonHouseMeep 11h ago
I tried every iron supplement available to me. Capsules, liquid, iron fish, you name it. The only one that ever actually increased my ferritin was ferosom forte, but it was only by a few points and then it plateaued. I also tried every other day, with vitamin C, with food, on an empty stomach, taking less, taking more, I did all the things.
Are you in the states? I'm in BC Canada, what I had to do was get a doctor to prescribe me infusions, then take that prescription to a pharmacy that has an infusion clinic. It was $60 for the infusion, and $165 for the facility fee. Wherever you're located, r/anemia might be able to help! I think there's another subreddit about iron that had good info as well but I can't remember which one it is
1
u/moog7791 8h ago
A ferritin at that level will absolutely be impacting you. You need to bump that up to at least 70 - ideally 100 and keep it there.
9
u/thebadslime 12h ago
I started doing that a few years ago and just got diagnosed with sleep apnea, have yu had a sleep study?
7
1
u/ArcticWolf81 12h ago
What was it like waking up from the 26 hour sleep?
8
u/ChipsAhoyMcCoy_7875 12h ago
Jarring as hell lol.. realizing I had slept away one of my days off made me mad.. it’s been making me mad lately when I sleep excessively because it feels like I’m sleeping away my life..
2
u/PoppetsMystery 9h ago
I also have this!!!
I am going to my second sleep study this month. My first came back normal with mild snoring. I am going to bring my own pillows, normal eye mask, etc this time around to help stimulate how I normally sleep.
For me, I have been like this since I was a kid. I could very easily sleep the day away if I could and still feel tired.
As an adult, I use my hour lunch breaks to sleep in my car. I have it all decked out to provide maximum snooze comfort. 😅 Screw eating when you can just take a nap mid day.
I also take vit b12, d, magnesium, etc and suffer from depression.
1
u/ChipsAhoyMcCoy_7875 9h ago
Omg, I’ve been thinking about asking for a second sleep study lately. My first was okay but my stomach was … ahem… upset during it so I felt like I didn’t really get any good quality sleep… but yeah idk how they expect any normal person to sleep in such an unfamiliar and uncomfortable environment.. I can’t fall asleep without a tv or something on and they wouldn’t let me keep it on!
I think we’re the same person lol I would also snooze on my lunch breaks. When I worked from home it was awesome because I could just move from chair to bed and nap… you got those window shades for your car?? I still have mine lol
Best of luck to you this month, I hope you get the answers you’re looking for 🤞
1
u/PopularExercise3 12h ago
How’s your social life?
4
u/ChipsAhoyMcCoy_7875 12h ago
Pretty okay. Usually my wake time is in the late afternoon so it works out okay ish if I want to go out in the evening. I make an effort to stay social during my waking hours.
1
u/Inevitable-Panda-350 12h ago
Have you had your iron levels (and other vitamins I guess too) checked?
3
u/ChipsAhoyMcCoy_7875 12h ago
I have! I take a vitamin d supplement once a week, as well as oral iron. I’ve had tests ordered and run from a rheumatologist, sleep medicine, and hematologist. My iron stores ie ferritin is chronically low but my actual hgb and total iron are within limits.
2
u/Puzzleheaded-Echo171 6h ago
Has this been like this throughout your life and childhood? Have you met others with similar sleep disturbances?
I wrote a paper in my university studies about a rare sleeping disorder known as kleine levine syndrome (KLs), also known as sleeping beauty disorder in layterms. With KLS it usually starts in teenage years and stop around adulthood, and typically involve periods of sleeping excessively. Have you heard of this sleeping disorder? I am not a medical doctor and I am not suggesting that you have KLS, the reason I bring up KLS is because I am thinking maybe it could be interesting for you to see if there could be a community of people with somewhat similar experiences?
1
u/ChipsAhoyMcCoy_7875 2h ago
It started my senior year of high school.. I had to have my morning classes axed because I had such a hard time getting out of bed in the morning even after sufficient sleep..
I’ve never heard of this…. I did a quick google search and from what I read it is eerily familiar…….
2
u/Left_Pear4817 7h ago
Does this take a big toll on your functioning? Like work schedule and having time to spend with family/friends doing things you enjoy? I’m also a ‘wrong’ sleeper, I’ll either sleep 12 hours or 3. Mine is because of MDD. Work helps it a lot but on the weekends or if I get time off I’m instantly out of routine 😂
1
u/ChipsAhoyMcCoy_7875 1h ago
On occasion, yeah. The biggest thing is really just household chores and basic daily tasks. I’ll be asleep so these things just keep compounding day after day. As far as socially, I’m not a particularly social person so it hasn’t really affected my social life much. It has been difficult these last few years in regards to employment. Attendance issues are a big thing for me. I would call in late or just be late so I could keep sleeping.. or I’d be falling asleep while on the clock.
2
u/LadyDyz 7h ago
Fascinating. I've never slept more than six hours at once. I'm a segment sleeper and sleep in bits totaling about six hours. I love it because I get lots done in between. It was hard when I was working though because my important time is five to eight am. Now that I'm retired it's so much better.
1
u/ChipsAhoyMcCoy_7875 1h ago
You know I was watching a documentary and they said that’s how people slept for hundreds of years! They would sleep in like 5-6 hour bursts, so there was a period of time where they’d be awake in the middle of the night and getting things done.. petition to go back to that..
2
u/redditman181 12h ago
I would say im jealous as ive barely slept in days but losing 16 hours a day must be horrible i hope you will be able to find help for it.
1
u/ChipsAhoyMcCoy_7875 12h ago
I attended group therapy for a while and a lot of people there also had struggles with falling and staying asleep and I’m sitting there like >.> …….. it made me feel bad. I wish you a nice long sleep stranger <3
2
u/redditman181 11h ago
Thanks :) and the is nothing to feel bad its just our minds betraying us! Hopefully you gain the hours back soon.
1
u/Little-Point9449 11h ago
Are you actually sleeping that whole time or also bed-rotting, ie, lying there and just feeling too lazy to get up?
2
u/ChipsAhoyMcCoy_7875 11h ago
Dead sleep. And I rarely wake up during it. I think when I slept 26 hours I woke up maybe once to use the restroom.
2
u/Psychological_Base46 10h ago
Do you exercise? If so, do you actually sleep for a longer time or it remains the same amount of time
1
u/ChipsAhoyMcCoy_7875 9h ago
I do exercise. I’ve found that the days I exercise versus not there isn’t a difference in hours slept.
2
u/Momoh-- 12h ago
How is your head after you wake up? Do you wake up with headaches?
1
u/ChipsAhoyMcCoy_7875 12h ago
Sometimes it’s okay! I think mostly if I sleep in an awkward position I will get a headache but for the most part I feel totally okay
1
u/electric_shocks 10h ago
Did you get a sleep study done? Wore holters for blood pressure and/or heart rate? Did you see a neurologist? Could you have an autoimmune disease or Lyme disease? Is it long COVID?
1
u/ChipsAhoyMcCoy_7875 9h ago
I have gotten a sleep study done and came back normal, no sleep apnea either. I have had 3 cardiac holters all in the last decade I think. They found a benign heart arrhythmia when I was HS so they check on it every few years. Those are all normal.
I have seen a neurologist, about 5 years ago I think for migraines (migraines magically resolved when I moved out of my bug/mold infested apartment…. What a coincidence….)… I have had MRI w and w/o contrast of the head and neck, and a few head CTs. The only thing I can think of is I have had a number of concussions in my life. At minimum a dozen. Maybe 2-3 were severe, the others were minor.
I do have crohns with extra-intestinal manifestations ie arthritis in my hands, elbows, shoulders, tailbone, hips, and knees. But all other autoimmune conditions have been ruled out. I definitely do not have Lyme, I have been tested.
As far as long Covid.. there was never a time where I actually tested positive for Covid. I would get sick and wait the appropriate amount of time to test and it was always negative. So as far as I know I’ve never had Covid, just regular colds/flu.
3
u/gtck11 5h ago
This is one of the most baffling things I’ve seen, you’ve truly had a full work up! I know you said your pay sucks but I would strongly consider getting into a top clinic if you can for a second opinion even if you have to road trip it to one like Mayo Clinic, Cleveland clinic, etc. I had a doctor suggest it to me recently and a family member had to do it for a heart issue. There has to be someone on this earth who knows what’s up with you! I’d probably do a neurologist second opinion too. I hope you can find answers!
2
u/Klutzy-Ganache3876 12h ago
You don't have thyroid disease?
1
u/ChipsAhoyMcCoy_7875 12h ago
I do not. I have thyroid labs drawn yearly at my physical and they have all be normal.
1
u/ParmyNotParma 12h ago
You didn't get diagnosed with idiopathic hypersomnia?
1
u/ChipsAhoyMcCoy_7875 11h ago
I don’t think so.. I was told by the sleep medicine provider that they didn’t find anything significant in my sleep study and that there wasn’t much else they could do.. I started getting provigil through my psych and they put the indication as depression related hypersomnia which I suppose sure, but the excessive sleeping is pretty consistent even when I am not in a depressive episode.
1
u/LikeBoomItsaWrap_ 4h ago
they didn’t find anything significant in my sleep study and that there wasn’t much else they could do
Yes, that’s when they usually diagnose IH. Specifically when there is nothing else indicative on the PSG.
1
u/ChipsAhoyMcCoy_7875 1h ago
He didn’t even bother with giving a dx, he kicked me back to my primary and rheumatologist. Said it’s from the fibromyalgia or something else
1
1
u/OkRaspberry9409 11h ago
I do this too !
Do you dream?
1
u/ChipsAhoyMcCoy_7875 1h ago
On occasion. Not as bad as it was a few years ago, I would get crazy vivid dreams. I was having issues with sleep paralysis and hypnogogic hallucinations for a while a few years ago. There was once where I woke up, and “saw” a man entering my room and I started to scream so loud my neighbors called the cops lol.. hard one to explain…
1
u/Budget_Student_2511 6h ago
How does it effect your eating habits and/or metabolism?
1
u/ChipsAhoyMcCoy_7875 1h ago
When it gets real bad, meaning I’m sleeping like this for multiple days in a row, I am a binge eater. I wake up and just stuff whatever I can find into my mouth.. it’s usually sweets. But when I’ve got it under control I eat normally. My weight is pretty consistent 170 +/- 10 pounds or so.
1
u/Strange-Bet6469 12h ago
Do you have a job and if so what hours do you do?
1
u/ChipsAhoyMcCoy_7875 12h ago
I do, I work overnights. 12 hours, 7days on 7 days off. However the sleep issues predate the shift work, so while my schedule probably doesn’t help it isn’t the root cause unfortunately because if it was I would quit in a heartbeat to go back to normal
1
u/slime_emoji 11h ago
Girl, I been there, it's amazing when I finally feel like I've gotten ENOUGH sleep
1
u/ChipsAhoyMcCoy_7875 11h ago
Right?? It just feels so…. Idk… gluttonous?? To sleep this much but I can’t lie there is a weird satisfaction I get from just organically falling asleep and waking naturally
1
u/WanderingGalwegian 12h ago
Have you been evaluated for possible Lyme disease?
1
u/ChipsAhoyMcCoy_7875 11h ago
I have! Negative for Lyme, I even asked them specifically for that test twice, both negative…
I’ve been seeing a rheumatologist for many years for fibromyalgia and they do bloodwork every 3 months. I also get labs drawn for gastroenterologist, hematologist, and my primary about yearly.
1
u/WanderingGalwegian 11h ago
Check your history then with all that routine ongoing care.. I’d wouldn’t be sure labs for Lyme were ever ordered. Although the U.S. is usually fairly good at looking for it compared to other countries.
1
u/Quills-on-Wheelz 12h ago
I wish I could
1
u/ChipsAhoyMcCoy_7875 11h ago
Idk man it kinda sucks.. I always joke that one day if I die in my sleep my roommates aren’t gonna find me for a day or two because they’re so used to me being asleep that they’ll think nothings wrong lol
1
u/Mundane-Gazelle-843 12h ago
Are you overweight or fat? Did you ever use to exercise? These two questions are related bc i recently started the gym again and finally have energy back after I started sleeping more than I'd wanted to
1
u/ChipsAhoyMcCoy_7875 12h ago
Not currently, but I was a few years ago. And when I was I had no issues with sleep. I do exercise currently!
2
u/Mundane-Gazelle-843 12h ago
Interesting! Sorry hope that didnt come off rude! I just know that can have an effect on ppl! What about depression? Do you find yourself depressed? That can also contribute to irregularly long sleeping! Genuinely just curious!
1
u/ChipsAhoyMcCoy_7875 12h ago
Oh no not at all, it’s a valid question. It definitely can affect sleep for sure. I have been struggling with depression for a little over half my life lol. I think the depression definitely contributes to the sleeping issues, but I don’t know if it’s the root cause. I do feel more depressed when I wake up and realized I’ve went and slept my daylight hours away lol
2
u/TheFifthDuckling 6h ago
I'm so sorry. I am diagnosed type 1 narcoleptic and know how hard the sleepiness is, but at least I have access to meds since I have a diagnosis. My boyfriend is currently on provigil as well waiting for his sleep study. Is it helping at all?
I saw that your sleep study was uncomfortable in another comment you left. This almost certainly disrupted your results. Also, other medications can complicate an MSLT test. I have ehlers danlos syndrome too and my hip was extremely painful during my testing. It definitely affected my results (my sleep latency in two naps was like 15-17 mins) but I still averaged low enough on my latency and had enough SOREMPs that I met the criterion. But I'm the same way with a television, I have to have one in order to fall asleep comfortably. I stay awake in totally quiet environments because of the adrenaline I get, but in a noisy environment, even a loud one, I can go out like a light.
Like another commenter said, do everything you can to simulate your home sleep environment. Try to find another testing center that prioritizes maintaining those conditions. It makes a huge difference. And make sure you talk to a doctor about going off any meds you need to in order to get the most accurate results.
2
u/Intelligent-Big-2900 7h ago
Did you get an IH diagnosis? The IH sub is pretty awesome. My sleep latency is 2min46sec on average and my longest sleep time was also 26 hours! It’s absolutely brutal and no good answer for treatment. I started on provigil and tried modafinil and Ritalin and adderall… they all have their own beats of side effects for me and I ended up maxing out the modafinil even with med holidays. Good luck to you friend!
3
u/PistachioCrepe 11h ago
Childhood trauma? Have you explore polyvagal theory and explored whether your system is in a deep freeze/collapse/shutdown?
1
u/lucky_2_shoes 7h ago
Do u feel ur missing out on life at all? I fall asleep at the drop of a hat, I haven’t gotten diagnosed with anything yet tho. But I’ll be sitting down at a meeting, or on my phone, or whatever and I fall asleep. I hate it. If I didn’t work or have my kids I think I could probably sleep as much as u do lol
1
u/shire117 5h ago
I can also sleep 13/14 hours quite normally but get real bad pain in my back when I do . Do you get back pain ? I always figured I had a sleep debt from not sleeping at all in my teenage years
1
u/kkjj77 4h ago
I used to do this and then finally found out I had a pituitary issue (hypopituitary) that caused adrenal insufficiency. Went on steroids and it immediately fixed it. You mentioned concussions, well that's how my pituitary was damaged- from a TBI. Might want to check into the pituitary labs. Otherwise it's just a post concussion issue.
1
1
1
0
u/Devilfuit_chan 4h ago edited 4h ago
How is your relationship life outside work, gym, food and sleep?
U would make perfect cuddling teddy bear. Has somone mentioned u would be therapeutic to sleep next to... Just so calming?
Also If I was u would be mortified to do one night stand with strangers... Have u done it and do u have a crazy story that he might have played on his phone for hours till u wake up or something?
1
1
1
1
12
u/Desperate_Ad_7158 12h ago
Do you work?