Hi mam, I am in India , I am struggling with this( ih) sleep inertia for past 15 years, I am now 38 yrs old,male , iam having two children and wife, I am more struggling to wake up from bed, and more than 10 hour sleep then also not refreshed,and fatigue ,brain Fogg, pls save my life ,pls,😭😭😭😭😭😭😭😭😭😭😭😭😭😭,I am struggling to lead my life.pls, scientists my humble request,pls consider this worse disease and discover the recovery treatment as soon as possible,for those people are who affected this disorder like me.it is so painful living with (ih).
Excessive sleepiness is a tough one because it's an "invisible illness" in many ways. It can feel so isolating when others don't understand. Please know you're not alone with this.
@@IntraBalance thank you! I've been diagnosed with it now for about 10 years but people don't understand how tired I am eventhough I sleep so much and because they aren't tired or because I didn't work today I can't be tired. It doesn't matter what I've done during the day it could be a long day at work or a day laying in bed and I will still be so tired and sleepy! Then I start to think maybe everyone is this tired but I don't know. I've never know what its like to feel rested and awake and full of energy.
@@mrsssmlllaie4402 I'm so sorry to hear that! Sometimes consultation with an MD who's trained in functional medicine can help figure out other ways to improve energy levels. This is such a challenging condition to live with 🧡
This sounds like it’s more related to adrenal, cortisol, insulin issues. Do you have skinny legs and a spare tire in the midsection? Hopefully this may help with your sleep because this really sucks. I’ve dealt with this for decades and now it’s gotten to where I’m falling asleep and staying asleep but in the morning, I’m not refreshed. I remain sleepy all day long.
@@rosethorns1893 mine is genetic, i have a ultra rare nerve condition that play a part of chronic fatigue, Skiny legs is a part of my condition as the nerves deteriorate i also have severe muscle atrophy
This is LITERALLY the best video ever ever made for my life. Word for word, every single thing you talked about is me. This is DAILY, every single day of my 44 years on this planet. You have no idea how much it’s ruined my life. I love life, and want to live it but can’t because it’s that bad. My mother has it, her mother had it, and she started dementia in her late 40’s early 50’s. Yup, that young. Over 30 years, dozens of doctors, 4 sleep studies, completely wrong diagnosis’, medications that never work, sometimes making symptoms worse, I’ve taken vitamins, at a very healthy weight, exercise, meditate, breathing exercises………..my god, I could write a novel. I will be in a medical book one day. Thank you so much for your information and that I’m not crazy. If I didn’t recognize you as one of my many doctors, I would have thought you were talking about me directly.
Thank you so very much for a response. I would’ve never even seen it, but just had to rewatch the video again for my own sanity and wanted to send it to my Mother and sister for reference and saw your reply. Would you happen to know ANYONE in the Philadelphia area that could possibly help me in any way? Again, thank you for the awesome video, I never cry but am getting choked up writing this because I can’t live this way anymore. Why are 10 y/o’s getting medications for this and not me? Why are college kids openly asking their doctors because “they have exams to do” and getting medications? Why are overweight people who can’t exercise or diet properly getting medications? I’m at a loss….
@@aidan2penny gosh, I'm so glad the video was helpful. I don't know anyone specifically in PA, but you can try this website, they have lots of information plus a list of doctors in different states: www.hypersomniafoundation.org/choosing-a-healthcare-provider/
I seriously had to check twice to see that I hadn't written this comment! I'm 45, waking up has been true hell my whole life. But no one took me serious. 'You are not a morning person, you are young you'll grow out of it, it's sleep inertia everyone has it, you need to drink coffee or more coffee .... Doctors looked at my blood work, and were like you are perfectly healthy, while I was sitting in front of them totally suicidal at times because I could not be 'normal'. I never could think about having kids because of this. I could never think of a career or getting to that academic path that I wanted to pursue. The things I did achieve cost me sooo much energy. I was then diagnosed with fibromyalgia and I was like 'ok that must've been it. 'waking up unrefreshed' is a symptom, but them I met other many fibro sufferers, and our experiences never matched. And all these years that voice within me 'maybe you are plain lazy' ... then the other voices saying 'no no no, you are the hardest working person you know' - which is so true. I was top at everything I ever did (thanks to being a perfectionist), so is that the problem. The mental side of it is sooo tough too. Sorry for venting, this will probably never be read, but it's out there. You are not alone. I am not alone .... 😢
I found out I have this after a sleep study and I started crying after because I’ve always complained about being tired and people would just think I’m lazy but it’s been so difficult and I finally know why
I just realized after 52 years I think I have this! I have looked into everything… started when I was 15. I am so tired all the time. Finally going to look into this..
Similar story. 50. Got diagnosed officially at 47, doc said I've most likely had it since 15. I failed the MSLT, 5 for 5 - even after the idiot technician came in after 3 and said "eeeee you don't have narcolepsy!" I was pissed but still fell asleep 2 more times, getting ultimately labelled with IH. So now I have modafinil (C+) not useless and dexedrine (A-) ... I hope you get an improved outcome. Blessings and Best Wishes and all that good stuff.
@@gblizzard7518 Yeah, modafinil helps some but it doesn't do enough! I've been drinking 2 liters of ice coffee besides the modafinil to help me feel awake.
i have all these symptoms. ive fallen asleep while driving and I've hurt my self at a few times where I just zoned out. been dealing with this for a few years now.
I just got diagnosed this year. I feel like I'm literally fighting myself not to fall asleep. I will drop things because I fall asleep, and the sound of whatever I drop hitting the ground is what wakes me up. I've never felt so tired in my life.
I’m 64 and the thought that this was caused by Covid makes a lot of sense. I recently developed hypersomnia after I caught Covid from my grandchildren. Thank you for the info. Now I just have to figure out what to do about it.
I was just diagnosed last year, and only started get meds in October. I'm not a healthcare professional but I'd recommend seeing a Pulmonologist. They treat people with sleep disorders. My pulmonologist is a PCP and a Pulmonologist. I only see him as a pulmonologist and he has been great for me.
I just got diagnosed earlier this year. I wouldn't wish this on my worst enemy. Truly. I'm in year 3 of fighting for disability due to mental Illness stemming from PTSD. & This is a new diagnosis I've gotten after I first filing for disability so I'm hoping this paired with my sleep apnea plus all the mental stuff helps out my case. Waking up is absolute misery. Period. My doctor seems to think it developed over time from years and years of untreated major depressive disorder. I just want to be normal. Every thing and I mean every single thing is a chore. Wiping my own ass can feel like climbing mount everest to be frank. Thank you for the video. ❤️
I have IH. I’m 25 and have been on modafinil since 16/17 years old. I also take oral birth control simultaneously so I just keep the interaction and potential risks in mind. I’ve been on a low dose for almost 10 years and just recently began to feel like it’s getting a little worse again. Currently scheduling another round of sleep study and latency tests to make sure nothing has changed. Hoping it hasn’t and I just need a dosage increase because I LOVE the modafinil truly.
I think I have IHS. I've been constantly asleep for a week and I cannot wake up. I have to force myself to get up and do things but never feel awake. It came on suddenly with no warning. I'll see my doctor next week, but I've no confidence in my GP's.
I was diagnosed with sleep apnea and got my CPAP and then they had to go to go back and do another test because I still wasn’t rested and then found out I have IF
Yes I have IH and Severe Sleep Apnea. It's really rough! Headaches, Dizziness, Brain Fog,Sleep attacks. The stimulant meds are like a double ended sword. They help keeping me awake but cause heart pain, anxiety, etc
I have had HI without a diagnosis for 3 years and I finally got one a few months ago. I didn’t even know what it was until I was diagnosed and it made so much sense! In one of my naps during the sleep study I fell asleep in 0 minutes and my sleep specialist said that’s the worst she’s ever seen. Out of the 5 naps the longest it took me to fall asleep was 7 minutes.
Thank you so much for this video. I had this from starting 2011 when In high school. My life changed for worse. I started feeling sleepy during day times which was unusual. I slept for hours at night but the tiredness in my head couldn't go away. It continued till my college days. I could hardly concentrate at lectures. Feel sleepy all the the, drowsy, my head gets numb and couldn't pay attention. Even in church and at work places. I couldn't type as my head is heavy and numb and feels sleepy after typing a first sentence. I've done with reading for the past 12 years since this illness contracted me. Went for medical check at hospitals and done CT scan but they couldn't diagnose any sickness. Couldn't even drive as I get sleepy along the road. I've typed all the symptoms on Goggle and it well fits insomnia.. and that's how I saw your video. I am sure my case is insomnia.. I couldn't help. I was fired from my job coz I couldn't perform. How could I read and pay attention and work on computer when sleepy and numbness in my head haunts me. When I sleep it's like am dead. It's really a deep sleep. I couldn't know what's going around. Couldn't wake up and respond to even a loud noise like any normal person would even at midnight. And could not wake up refreshing in the morning. The numbness is there and still feel sleepy... Please how do you figure out my case? I've lost hope and felt that my life has no meaning. Completely useless. All my hopes and plans perished.. I am in USA now. In Tennessee. Moved here last month.. I wanna discuss more with you..
Wow I think my brother has this from five years old till now my mom was constantly trying to wake him up to go to school. She would screaming at him to get out f the tub he would fall asleep in the tub to. He would sleep threw his alarms and my dad yelling at him to wake up. Then I was yelling at him to wake up. My poor brother has been yelled at and we would say he was lazy. I can’t wait to tell my brother and my family. Thank you for your video.
Please discuss sleep inertia. It is detrimental with my IH and causes me to take hours to get out of bed sometimes because I physically cannot open my eyes long enough to wake up.
I was diagnosed with IH 8 years ago and it makes life hard. I sleep 12+ hours a day but still work full time. I’ve been on Dexedrine for the past 5 years (110 mg per day). 5 weeks ago my doctor started me on Wakix, my dose is 40mg plus 60 mg of Dexedrine per day. This hasn’t helped me yet but I want to try it for the full 2 months. I have gone through the sleep clinic 5 times over the past 8 years.
I just found out about IH a couple hours ago, and i feel so hopeful! I have been struggling with excessive sleepiness for the past 18 months, and nothing seems to help. I will easily sleep for 11 hours at night and still need at least one nap during the day. Mist days, i take 2 naps, but there are also days when i will take 3. Im 46, healthy, and have never experienced anything like this before. When i told my family, they said i was just being lazy (even though ive always been a highly motivated and active person my whole life). I told my primary care doctor, he literally shrugged and said i was probably just bored. I had some blood work done, and everything looked normal. Im getting my thyroid checked next week, just to rule that out as well. But just to think there is an actual condition that describes the struggle ive been going through for so long is such a relief!
I was officially diagnosed about 6 years ago. I insisted on a spinal tap for a hypocretin level which was normal. There are times I could sleep 18-20 hours a day for weeks on end. Naps helped on really severe days. Modafanil only helped a little.
I am 30 Yr old women, I sleep 10-12 hrs most nights and always have to have a nap in the day for around 2-3 hrs I'm always tired even if I have had all this sleep If I don't get it I take time off work to sleep. Its really affecting my life, does this sound like it could be hypersomnia?
Hi Katie, these could be symptoms of hypersomnia. Talking to a sleep specialist would be a good idea and they can let you know if a sleep study would be helpful - and what kind of sleep study you might need.
I'm 75. Had this since adolescece. Never responded to slew of antidepressant meds. Finally was prescribed Modafinil. Non amphetamine mild stimulant. For the first time in my life I feel able to lead a normal life: able to work without excessive effort, and actually enjoy the tasks. Modern I'm does not interfere with my sleep. It does not produce euphoria. It simply gives me normal wakefulness and normal energy.
I have hypersomnia EDS and Dysautinomia. I've now started to get insomnia for 3/4 nights followed by a long sleep up to 32hours. Have you found anything that helps you?
i have EDS as well and many things about IHS sound very familiar. i thought it was chronic fatigue due to the chronic pain that comes with EDS but now i'm wondering if it's really IHS, or if i maybe even deal with both. it would be interesting to see if there's a connection between EDS and IHS
I’ve been suffering from this…I sleep 10 to 12 full hours a night and try to catch a nap at work. All day I feel groggy. I believe I’m depressed and I prefer sleeping to being awake because my life is full of monotonous grueling drudgery. The sleep world is full of wonderful colorful dreams. I think I’ll ask the doctor to place me in a coma so I can be happy full time.
Great video. I just wish we could look at night time sleep studies of people with IH, and see if low n3 sleep is a component. I don't see anyone trying to group IH patients into sub categories. Implementation of sodium oxybates are for this purpose.
I have recently been diagnosed with hypersomnolence.. here is my story. A couple years ago I was seeking help for depression like symptoms and put on medication to help combat my sadness and overall tiredness feeling. It was working for the most part however I was never able to kick my tiredness. I then was given a sleep study and found to have "mild sleep apnea", this wasn't much surprise to me as sleeping like "darth vader" was common in my family. I was finally relieved to have a "solution" for my sleep. Everyone I talked to sounded so promising on how much sleeping with a CPAP will change my life. After over a year and a half of using this device I still was having troubles... At this point my wife and I were expecting our first child.. I was worried that I would be holding her and accidentally fall asleep thus dropping her. So I went back to finding a solution. My doctor had moved away and this new NP that took his place suggested I may have hypersomnolence, prescribing Adderall. Adderall has changed my life, I have all the energy that I could dream of roughly an hour or two after taking it, however, feel like I crash pretty hard especially after work and waking up in the mornings is still super difficult. I am 30 years old and within the past 3 months I have been hospitalized 3 times for bad episodes of diverticulitis which your video has opened my eyes to this maybe all being connected... Having surgery in the next couple months to have some of my bad intestines taken out and hopefully being able to reattach without needing a bag. Long story short I wish there was a "fix" for this as medication just seems to be a bandaid during the daytime... It is causing alot of stress on our new family (born Feb 8th) as my wife doesn't allow me to watch our daughter overnight because I'm too hard to wake up, am dead to the world when my head hits the pillow and agreeably so am dangerous with my inability to control sleep... Sorry for all the rambling, I am in line to see a behavioral health counselor and still hoping to find answers/solutions. Unfortunately its 3 months before I can see someone in person. So here I am watching videos trying to fix myself :') Thank you for this wonderful informative content and taking the time to read my mess of a story.
Thank you for the video. The dr wasn't sure what I have because naps help (but only for a short time), I have cataplexy, caffeine helps a tiny bit, and sleep paralysis but I was on medication that made it so my results were not 100% conclusive for narcolepsy. So they told me "you more than likely have narcolepsy because of the cataplexy but we can't say that for sure so we'll diagnose you with IH. If you get off the medication, we can do another sleep test."
That is a common problem these days because a lot of folks are on meds that suppress REM, so it affects the sleep study results. But it does sound like you have a lot of symptoms that fit more with narcolepsy than IH!
I can easily sleep 16 hrs in a day Been doing this my entire life but it's gotten worse with age. Doctors don't seem to take me seriously. I'm tired of sleeping my life away...husband is tired of it too. I just never feel rested
Can you please do a video for KLS or please answer a question I can't seem to figure out. Since I was a teenager I have every couple of months a bout of sleeping that can last up to 5 days of full sleep 22hrs+ only waking to use the toilet. I have been looking in to hypersomnia but have no sleep issues between episodes. All the research I can find on KLS talks about sleep periods lasting weeks. I'm wondering if it is something I should look more in to or does the fact I'm only sleeping for days at a time and not weeks rule this out. Thank you for any guidance or point in a direction you or any of the fantastic people in the comments can give.
Thank you Mada doctor i am Boblee from uganda and I my have that problem because even if I am from the bed it can't stop me to sleep again , now how can you help me I am 25ys Thank you
Someone else's story shared on youtube said she was a good kid, as in her parents had no problems putting her to sleep as a baby. I relate to that I have my own story of sleep disturbances but can say that through lucid dreaming, i escaped paralysis and when i wanted my natural dreams back, i induced lucid nightmares which helped me escape paralysis much faster. In the end, i found i am sensitive to sound which was the cause for many episodes of paralysis. I was able, with facebook pages on lucid dreaming, to kick the paralysis. I sleep very soundly now without being forced into lucid dreams
I had all symptoms for years but I thought it was linked to my thyroid disease. After staying overnight for a study, I had to stay til the afternoon for the naps. I not only quickly went to sleep during nap time but the tech had to keep waking me up in between naps lol. I tried EVERYTHING to stay awake. I was diagnosed with Idiopathic Hypersomnia. I was close to being narcoleptic but I was a few minutes off from the REM sleep part. I’m relieved but still very tired and over it. I’m 36yo btw…
I think I might have this. Im right at the age of onset, and would definitely describe my onset of symptoms to be gradual. I do have depression but I don’t want to sleep because of the depression, I want to sleep because I’m genuinely tired. The only thing I don’t believe I have is sleep drunkenness, but from what I understand not everyone with IHS have it. If I do have it, it’s infrequent, like once a month. Im also on adhd meds which probably also have an effect on my symptoms. Im just so tired, it’s been like this since at least December. I just want to be able to function better, especially in the afternoon when the tiredness really sets in bad.
I talk about diagnosis and treatment in this video starting around 6:11. But the next step is to talk to your primary care physician or get a referral to a sleep physician to see what is going on and what can be done. Wishing you all the best!
IHS sounds exactly what happens to me when I eat gluten. When I was 22 I was constantly sleepy. I could sleep 13 hrs straight, not feel awake, take a 5 hr nap, still not feeling awake. It had worsened gradually. At 22, in college, the only thing I wanted to do was sleep, no matter what else was going on. Brain fog like crazy. Cutting out wheat/ gluten took away all that. Now 15 years later... Many times I have eaten gluten since, unintentionally, found out the hard way how many things it can be in. Every time, it takes me 2/3 days to recover. And now I'm going for a sleep study for the first time in my life. Cause though I feel awake, I sleep through alarms frequently. I feel like I'm being forced to live with permanent jet lag. I can't imagine feeling sleepy all the time and having brain fog and dealing with this. I shared my story hoping someone may benefit from it.
It's so interesting to hear this. I've seen it with some of my patients as well...and personally, I also struggled with sleepiness and fatigue which improves significantly when I cut out gluten! Thank you for sharing your story.
I’ve been diagnosed with IHS very close to narcolepsy. 32 yr old male and I’ve dealt with this since I was young (middle school). I’ve dealt with cataplexy and regularly sleep 8-10 hrs a night and barely feel rested. If I take a nap it’s pretty much a 3 hour endeavor no matter what and sometimes I get the sleep drunkness upon waking. I’ve tried a bunch of non stimulation drugs with no help. Going to try Ritalin next. I use caffeine to help better some days it helps better than others. Hope this helps.
I have been recently diagnosed with IHS. I've been struggling with exhaustion since I can remember. However, recently it's taken a turn and I feel like I'm sleeping my life away. Haven't found anything that helps yet. Caffeine has never effected me, I've tried Adderall and that had no affect, and I'm currently trying modafinil but that doesn't have any real affect either. So frustrating.
@@JocieFire I haven't tried either of those. I tried all of the non stimulant wake promoters and none of them worked. After a lot of consideration I talked with my doctor and she put me on Adderall and it has been a game changer. Its not perfect and didn't give me all of the things that I was looking for but I would say it hit about 80% of what I was hoping to achieve. I don't promote stimulants unless absolutely necessary. That is why I tried everything before. That being said it has definitely improved my quality of life and it has been incredible. I still promote using the least amount of force necessary which is why I am on the lowest dose I can while still achieving the improvement of quality of life. I hope that helps.
@@carim2557 that absolutely sucks. I am so sorry. Adderall was a game changer for me and has been a huge blessing. I hope you find something that will help, it truly is a debilitating feeling. Keep the faith though, do what you can and be the absolute best you can be. Also, be kind to yourself. You are a valuable person and are loved by many!
I have just recently being diagnosed with IHS after my MSLT results. I am on stimulants like Ritalin and Concerta but still do not feel awake all day and the after effects when the drugs wear off. I have been exercising daily and controlling my diet well but I still feel I am losing the battle with IHS as it leads often to brain fog, memory loss and slurring over time! Any advice ? Thanks Dr Sam Lee
Sorry forget to intro myself. I am 57 years old Associate Professor of Leadership and I started having symptoms of EDS and Brain fog after striking Covid in Mar 2023 almost a year ago!
@@samuellee3486 sorry to hear you are struggling with this! And post-covid makes it much more difficult. Working with a functional medicine or integrative doctor to reduce inflammation can help. If you're in CA, we see patients via telemedicine in my practice, or my colleague in the Bay Area also specializes in this - her name is Michelle Jonelis MD www.redwoodpulmonary.net/staff/michelle-jonelis-md.html
I don’t know which one because I hear voices and laughter when the person is not there at all it’s like I’m trapped between actually closing my eyes and not being able to hear you versus my eyes mean like an alert and I am able to hear what my dreams are doing
I do have narcolepsy with cataplexy but daytime naps do not help me at all nor does any amount of sleep at night. I do have sleep paralysis and hypnagogic hallucinations. Is it possible to have narcolepsy as well as this?
Once years ago when they did a sleep study; they told me I never reach REM. I've had many more sleep studies since. Can not ever reaching REM cause IH?
I have this problem too and my doctor doesn't know what to do with me :-) I take naps almost every day but with no real energy benefits. Would you recommand to skip the naps or continue even if they don't help much ?
I have sleep apnea and sleep with a machine. Still feel sleepy all day. I normally try and sleep from 10-12 hours and still I’m dead. I do wake up a lot for no reason at all. I also have ADHD and insomnia. I’ve been like this since I was young and very skinny so weight was not the problem. 😢 I just can’t catch a break 😅
I had a sleep study and the sleep doctor told me to not nap and that was the only thing he did for me. Is there anything else I can do besides trying to avoid taking naps? Which I haven’t been avoiding. I really need help. I have Hypersomnia
To those who have this, have you tried exposing yourself to the morning sun specially the eyes? I wonder if sun exposure helps. I also experience daytime sleepiness.
I have Sleep Apnea and I use a nasal mask because I can't do the full mask. But many times I think I got a good night sleep and by 2 in the afternoon I hit a major wall. Can barely drive home. I know sometimes I open my mouth while sleeping or my mask leaks what can I do to better my results and to get a much better sleep? I sleep around 7 to 8 hours a night. Thanks for the help! :)
I am diagnosed with KLS ... Suffering from IH since last 14 years. In india.. The reoccurring episodes have made my life miserable.. Please help me with any advice
I have trouble staying awake. I work night shift during the day i normally sleep. If i sit still to long i get so sleepy i cant hold my eyes open. Even while driving i have to pull over take about 30 minutes to hour nap then im fine for a little bit. But on my days off i sleep 6 hrs get up for hour or two then i can lay back down sleep 4 or five and keep repeating all night. I went to bed friday night at 7 pm. I finally got up for the day at 1 pm saturday. Then laid back down at 4 for nap till 6 before work.
What makes it even better is when your coworkers start telling people you're on drugs and that's why you struggle to stay awake. Frustrating doesn't even begin to describe it.
I have KLS. Cataplexy when younger. Worst episode was a three month period in 2016. 22 hours of sleep a day. Often with sleep paralysis - the first time was one of the scariest things I've ever had. During an episode, I can take 70mg of Vyvanse then promptly sleep for 15+ hours. During the couple of hours I was awake, I would sometimes sit up, but hallucinate that there was a bed in front of me. Often, the cravings for sweet foods were overwhelming. On several occasions, I would get a tub of Ben and Jerry's ice cream and eat the whole pint in one go. Other than that, I only had the energy to eat cereal. I chose a healthy brand but failed to notice it did not contain vitamin C. I developed scurvy. The longest single sleep was 30 hours. It doesn't feel like fatigue at onset. It feels like an anaesthetist is telling to count back from 10. It is utterly debilitating during episodes.
I’m sorry but I’m watching this with chronic insomnia. In the Insomnia community, this is such an easy fix, exercise, stimulants, etc. lacking sleep is a whole different story and it’s way worse. What I would do to fall asleep in minutes, you have no idea. I have all these symptoms 10 fold all day and I just simply don’t sleep. So please don’t take sleep for granted. just eat good and exercise. Edit: imagine having all those symptoms and not being able to fall asleep at all. it fucking sucks. I’ve had hypersomnia before in my teens and now I have insomnia. I’ll take the latter any day 100%
That truly does sound awful. I definitely appreciate being at able to sleep at night. But losing your job because you can't stay awake at work really sucks too. Also I've yet to have a Dr willing to perscribe stimulants.
I randomly get so sleepy that I can't hold my eyes open. I am 53 and this began after I had radiation and surgery for breast cancer. Shortly after also had a hysterectomy and I have hypothyroid. Then I was diagnosed with vitamin D deficiency. I am scheduled to speak with a sleep lab and don't want drugs or a cpap. So I am trying Dr Stasha Gomanak? 's adjusting b vitamins (pantothenic acid) Is there anything else that can be done?
Sorry to hear you're struggling with this. The sleep lab is a good start, if they find sleep apnea then treating that is a good first step. Dr. Gominak's protocol can help also, and some people find that an anti-inflammatory diet may help with the sleepiness and fatigue
Oksoim 32 and im undiagnosed but thi k I have this I sleep through everything I'm always tired it started in my teen years yes I actually slept through first concert who at the time was backstreet boys I was awake at the start and then I was out and slept through the rest I missed it qith whatever I have I miss alot
The sleep centers seem to be in cahoots with the cpap manufacturers. I was given a cpap for very mild apnea, it didn’t help me at all and the Dr’s only answer was to give me modafinil (which then keeps me up all night.) I’ve been this way since i was 16. I’m not even sure how i finished college (at age 25) or ever held down a job. I wake up fine but I only have an hour or two of feeling awake and then it’s nap time until evening 😭 Also was misdiagnosed with hypothyroidism and gained 80 pounds on thyroid meds. It freaking sucks.
Just got diagnosed today. Doctor thought it might have been Narcolepsy but turns out it’s IH. I’ve had it as far as I can remember and just now in my fourties’ hv bn diagnosed. I knew something was wrong with me so did my mother. I’ve avoided certain careers knowing I had this unknown issue. I’m a runner and would run half awake. As a teen n young adult I experience a lot of that paralysis and out of body experience. I hope I never hv those again. I felt slow n dumb but realized I wasn’t I just take longer and have to work harder to focus. I’m looking forward to tking something to help me. I do have a question. Why is it that actual day light or bright light gets me very sleepy. I can drive better before sunrise but at the brightest times I feel the most sleepy.
@@IntraBalance i now buth with hypersomnia you need more sleep that why i was asking how many ouers your sleep?, because people with hypersomnia need 10 a 12 ours sleep at night
@@laylaa2811 thank you for clarifying. To make sure I understand the question, are you asking how many hours of sleep someone might need if they have hypersomnia?
@@laylaa2811 it varies, and is actually divided into "idiopathic hypersomnia with or without long sleep time", meaning more than 10 hours might not be enough for some people with IH. For others, they may be able to get by with 7-8 hours plus a nap.
I fall asleep 3 times a day for at least 30 minutes but it seems like a few hours like I wake up in the middle of the day thinking it is the middle of the night and go to bed
I can fall asleep within seconds of closing my eyes at any moment. I’m always so tired that living life is so difficult. I sleep around 15 hours a day. I would sleep more if I didn’t force myself to stay awake. I have tried caffeine, stimulants, and even cocaine. Yet, I literally can still fall asleep within minutes. I feel like I am existing, not living. My life revolves around sleeping. I just want to be normal.
Aug. 23- 2023. Hello. I can sleep 12 hrs. Straight.. bathroom every. 3 hrs. Then go to bed for another 12 hrs.🎉 Easly. I have It.... I think... I just looked it up tonight. Hah... My husband😢 died 7 yrs ago. I'm depressed. Cry a lot... I work nights... from 5/ 11.30Am. Sleep @ 2am. Like I said 12 hrs. Then my Day starts al, over again.... thanks.
Hi mam, I am in India , I am struggling with this( ih) sleep inertia for past 15 years, I am now 38 yrs old,male , iam having two children and wife, I am more struggling to wake up from bed, and more than 10 hour sleep then also not refreshed,and fatigue ,brain Fogg, pls save my life ,pls,😭😭😭😭😭😭😭😭😭😭😭😭😭😭,I am struggling to lead my life.pls, scientists my humble request,pls consider this worse disease and discover the recovery treatment as soon as possible,for those people are who affected this disorder like me.it is so painful living with (ih).
So sorry to hear this Prakash! Please see your doctor for guidance on treatment, there are many treatments that can help. Sometimes light therapy and eliminating inflammatory foods can make a big difference with brain fog and sleep inertia. My colleague Deepa Kannan has a practice in India called Phytothrive and she helps people with nutrition and sleep. Wishing you all the best!
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Do you have IH or see patients with IH? Let us know in the comments.
I have IH :(
@@hannahprester6761 thank you for sharing that, it can be really challenging to deal with this.
I do have it as well and find myself to keep growing resistant to stimulants I try to use for treatment and so much brain fog and difficulty driving
Hi mam, I am in India , I am struggling with this( ih) sleep inertia for past 15 years, I am now 38 yrs old,male , iam having two children and wife, I am more struggling to wake up from bed, and more than 10 hour sleep then also not refreshed,and fatigue ,brain Fogg, pls save my life ,pls,😭😭😭😭😭😭😭😭😭😭😭😭😭😭,I am struggling to lead my life.pls, scientists my humble request,pls consider this worse disease and discover the recovery treatment as soon as possible,for those people are who affected this disorder like me.it is so painful living with (ih).
@@prakashp9840 Sorry to hear about your struggles! Are you seeing a doctor for treatment?
I have this. No one ever takes me seriously. I'm exhausted all day everyday no matter how much I sleep.
Excessive sleepiness is a tough one because it's an "invisible illness" in many ways. It can feel so isolating when others don't understand. Please know you're not alone with this.
@@IntraBalance thank you! I've been diagnosed with it now for about 10 years but people don't understand how tired I am eventhough I sleep so much and because they aren't tired or because I didn't work today I can't be tired. It doesn't matter what I've done during the day it could be a long day at work or a day laying in bed and I will still be so tired and sleepy! Then I start to think maybe everyone is this tired but I don't know. I've never know what its like to feel rested and awake and full of energy.
@@mrsssmlllaie4402 I'm so sorry to hear that! Sometimes consultation with an MD who's trained in functional medicine can help figure out other ways to improve energy levels. This is such a challenging condition to live with 🧡
@@IntraBalance I take medicine for it which helps a bit
@@mrsssmlllaie4402 gy
Omg, it takes me hours to feel awake. I usually feel horrible all day, the finally alert at night.
This is me as well
100% me, ive been like it 30+ years.
lately ive been sleeping 17 hrs at a time.
or just sleep drunk of a morning
This sounds like it’s more related to adrenal, cortisol, insulin issues.
Do you have skinny legs and a spare tire in the midsection?
Hopefully this may help with your sleep because this really sucks.
I’ve dealt with this for decades and now it’s gotten to where I’m falling asleep and staying asleep but in the morning, I’m not refreshed. I remain sleepy all day long.
@@rosethorns1893 mine is genetic, i have a ultra rare nerve condition that play a part of chronic fatigue, Skiny legs is a part of my condition as the nerves deteriorate i also have severe muscle atrophy
Me too
I just slept through this.😢
I first got diagnosed when I would start to sleep for at least 13 hours a night and still not feel rested. I was tired of sleeping my life away.
This is LITERALLY the best video ever ever made for my life. Word for word, every single thing you talked about is me. This is DAILY, every single day of my 44 years on this planet. You have no idea how much it’s ruined my life. I love life, and want to live it but can’t because it’s that bad. My mother has it, her mother had it, and she started dementia in her late 40’s early 50’s. Yup, that young. Over 30 years, dozens of doctors, 4 sleep studies, completely wrong diagnosis’, medications that never work, sometimes making symptoms worse, I’ve taken vitamins, at a very healthy weight, exercise, meditate, breathing exercises………..my god, I could write a novel. I will be in a medical book one day. Thank you so much for your information and that I’m not crazy. If I didn’t recognize you as one of my many doctors, I would have thought you were talking about me directly.
Thank you for sharing this. It's such a difficult diagnosis to deal with. 🧡
Thank you so very much for a response. I would’ve never even seen it, but just had to rewatch the video again for my own sanity and wanted to send it to my Mother and sister for reference and saw your reply. Would you happen to know ANYONE in the Philadelphia area that could possibly help me in any way? Again, thank you for the awesome video, I never cry but am getting choked up writing this because I can’t live this way anymore. Why are 10 y/o’s getting medications for this and not me? Why are college kids openly asking their doctors because “they have exams to do” and getting medications? Why are overweight people who can’t exercise or diet properly getting medications? I’m at a loss….
@@aidan2penny gosh, I'm so glad the video was helpful. I don't know anyone specifically in PA, but you can try this website, they have lots of information plus a list of doctors in different states: www.hypersomniafoundation.org/choosing-a-healthcare-provider/
I seriously had to check twice to see that I hadn't written this comment! I'm 45, waking up has been true hell my whole life. But no one took me serious. 'You are not a morning person, you are young you'll grow out of it, it's sleep inertia everyone has it, you need to drink coffee or more coffee .... Doctors looked at my blood work, and were like you are perfectly healthy, while I was sitting in front of them totally suicidal at times because I could not be 'normal'. I never could think about having kids because of this. I could never think of a career or getting to that academic path that I wanted to pursue. The things I did achieve cost me sooo much energy. I was then diagnosed with fibromyalgia and I was like 'ok that must've been it. 'waking up unrefreshed' is a symptom, but them I met other many fibro sufferers, and our experiences never matched. And all these years that voice within me 'maybe you are plain lazy' ... then the other voices saying 'no no no, you are the hardest working person you know' - which is so true. I was top at everything I ever did (thanks to being a perfectionist), so is that the problem. The mental side of it is sooo tough too. Sorry for venting, this will probably never be read, but it's out there. You are not alone. I am not alone .... 😢
I just got diagnosed, been struggling my whole life!!!!!! 27 now just being diagnosed, It feels good to know now whats been going on!
I found out I have this after a sleep study and I started crying after because I’ve always complained about being tired and people would just think I’m lazy but it’s been so difficult and I finally know why
I just realized after 52 years I think I have this! I have looked into everything… started when I was 15. I am so tired all the time. Finally going to look into this..
Similar story. 50. Got diagnosed officially at 47, doc said I've most likely had it since 15. I failed the MSLT, 5 for 5 - even after the idiot technician came in after 3 and said "eeeee you don't have narcolepsy!" I was pissed but still fell asleep 2 more times, getting ultimately labelled with IH. So now I have modafinil (C+) not useless and dexedrine (A-) ... I hope you get an improved outcome. Blessings and Best Wishes and all that good stuff.
@@gblizzard7518 Yeah, modafinil helps some but it doesn't do enough! I've been drinking 2 liters of ice coffee besides the modafinil to help me feel awake.
i have all these symptoms. ive fallen asleep while driving and I've hurt my self at a few times where I just zoned out. been dealing with this for a few years now.
I just got diagnosed this year. I feel like I'm literally fighting myself not to fall asleep. I will drop things because I fall asleep, and the sound of whatever I drop hitting the ground is what wakes me up. I've never felt so tired in my life.
I was diagnosed with this after getting West Nile Encephalitis. My life has completely changed.
I’m 64 and the thought that this was caused by Covid makes a lot of sense. I recently developed hypersomnia after I caught Covid from my grandchildren.
Thank you for the info. Now I just have to figure out what to do about it.
I was just diagnosed last year, and only started get meds in October. I'm not a healthcare professional but I'd recommend seeing a Pulmonologist. They treat people with sleep disorders. My pulmonologist is a PCP and a Pulmonologist. I only see him as a pulmonologist and he has been great for me.
@@kathleenkelly8675 Ty so very much. I’ll definitely look into it.
I have IH, recently diagnosed with a PSG but I think I've had hypersomnia for most if not all of my life.
I just got diagnosed earlier this year. I wouldn't wish this on my worst enemy. Truly. I'm in year 3 of fighting for disability due to mental Illness stemming from PTSD. & This is a new diagnosis I've gotten after I first filing for disability so I'm hoping this paired with my sleep apnea plus all the mental stuff helps out my case. Waking up is absolute misery. Period. My doctor seems to think it developed over time from years and years of untreated major depressive disorder. I just want to be normal. Every thing and I mean every single thing is a chore. Wiping my own ass can feel like climbing mount everest to be frank. Thank you for the video. ❤️
Sending you best wishes, this is a tough condition to deal with 💛
I have IH. I’m 25 and have been on modafinil since 16/17 years old. I also take oral birth control simultaneously so I just keep the interaction and potential risks in mind. I’ve been on a low dose for almost 10 years and just recently began to feel like it’s getting a little worse again. Currently scheduling another round of sleep study and latency tests to make sure nothing has changed. Hoping it hasn’t and I just need a dosage increase because I LOVE the modafinil truly.
So glad you found something that works! Hope all goes well with the next round of testing.
Thank you for mentioning interactions with birth control, most medical professionals don’t look into this which can be devastating.
I think I have IHS. I've been constantly asleep for a week and I cannot wake up.
I have to force myself to get up and do things but never feel awake. It came on suddenly with no warning. I'll see my doctor next week, but I've no confidence in my GP's.
This is literally me. I feel all the symptoms. I sleep with a c pap nowadays but doesn’t help. I can sleep 12 hours and still feel extremely exhausted
That's me, too. Despite having a CPAP, I still spend the majority of my days exhausted.
I didn't find CPAP very helpful for sleep apnea. I use an adjustable bed now so I sleep with my head in a recline up position.
I was diagnosed with sleep apnea and got my CPAP and then they had to go to go back and do another test because I still wasn’t rested and then found out I have IF
Yes I have IH and Severe Sleep Apnea. It's really rough! Headaches, Dizziness, Brain Fog,Sleep attacks. The stimulant meds are like a double ended sword. They help keeping me awake but cause heart pain, anxiety, etc
Thank you for sharing your experience ❤
I have had HI without a diagnosis for 3 years and I finally got one a few months ago. I didn’t even know what it was until I was diagnosed and it made so much sense!
In one of my naps during the sleep study I fell asleep in 0 minutes and my sleep specialist said that’s the worst she’s ever seen. Out of the 5 naps the longest it took me to fall asleep was 7 minutes.
I can beat that my paperwork just came in at a whopping 30 seconds and a record 12 seconds before the nurese even hit the lights to leave
Thank you so much for this video. I had this from starting 2011 when In high school. My life changed for worse. I started feeling sleepy during day times which was unusual. I slept for hours at night but the tiredness in my head couldn't go away. It continued till my college days. I could hardly concentrate at lectures. Feel sleepy all the the, drowsy, my head gets numb and couldn't pay attention. Even in church and at work places. I couldn't type as my head is heavy and numb and feels sleepy after typing a first sentence. I've done with reading for the past 12 years since this illness contracted me. Went for medical check at hospitals and done CT scan but they couldn't diagnose any sickness. Couldn't even drive as I get sleepy along the road. I've typed all the symptoms on Goggle and it well fits insomnia.. and that's how I saw your video. I am sure my case is insomnia.. I couldn't help. I was fired from my job coz I couldn't perform. How could I read and pay attention and work on computer when sleepy and numbness in my head haunts me. When I sleep it's like am dead. It's really a deep sleep. I couldn't know what's going around. Couldn't wake up and respond to even a loud noise like any normal person would even at midnight. And could not wake up refreshing in the morning. The numbness is there and still feel sleepy... Please how do you figure out my case? I've lost hope and felt that my life has no meaning. Completely useless. All my hopes and plans perished.. I am in USA now. In Tennessee. Moved here last month.. I wanna discuss more with you..
Wow I think my brother has this from five years old till now my mom was constantly trying to wake him up to go to school. She would screaming at him to get out f the tub he would fall asleep in the tub to. He would sleep threw his alarms and my dad yelling at him to wake up. Then I was yelling at him to wake up. My poor brother has been yelled at and we would say he was lazy. I can’t wait to tell my brother and my family. Thank you for your video.
Thanks for sharing that! It's an all too common story, unfortunately. I hope he's able to get some support
Please discuss sleep inertia. It is detrimental with my IH and causes me to take hours to get out of bed sometimes because I physically cannot open my eyes long enough to wake up.
I was diagnosed with IH 8 years ago and it makes life hard. I sleep 12+ hours a day but still work full time. I’ve been on Dexedrine for the past 5 years (110 mg per day). 5 weeks ago my doctor started me on Wakix, my dose is 40mg plus 60 mg of Dexedrine per day. This hasn’t helped me yet but I want to try it for the full 2 months. I have gone through the sleep clinic 5 times over the past 8 years.
I have this and it's not fun smh. I sleep mostly 12 to 14 hours. I also have sleep apnea as well. I'm 45.
Thank you for sharing this, it can be so challenging to deal with.
I just found out about IH a couple hours ago, and i feel so hopeful!
I have been struggling with excessive sleepiness for the past 18 months, and nothing seems to help. I will easily sleep for 11 hours at night and still need at least one nap during the day. Mist days, i take 2 naps, but there are also days when i will take 3.
Im 46, healthy, and have never experienced anything like this before. When i told my family, they said i was just being lazy (even though ive always been a highly motivated and active person my whole life).
I told my primary care doctor, he literally shrugged and said i was probably just bored.
I had some blood work done, and everything looked normal. Im getting my thyroid checked next week, just to rule that out as well. But just to think there is an actual condition that describes the struggle ive been going through for so long is such a relief!
I was officially diagnosed about 6 years ago. I insisted on a spinal tap for a hypocretin level which was normal. There are times I could sleep 18-20 hours a day for weeks on end. Naps helped on really severe days. Modafanil only helped a little.
I just got the IH Diagnosis. Trying to learn all I can about it.
I am 30 Yr old women, I sleep 10-12 hrs most nights and always have to have a nap in the day for around 2-3 hrs
I'm always tired even if I have had all this sleep
If I don't get it I take time off work to sleep. Its really affecting my life, does this sound like it could be hypersomnia?
Hi Katie, these could be symptoms of hypersomnia. Talking to a sleep specialist would be a good idea and they can let you know if a sleep study would be helpful - and what kind of sleep study you might need.
I'm 75. Had this since adolescece. Never responded to slew of antidepressant meds. Finally was prescribed Modafinil. Non amphetamine mild stimulant. For the first time in my life I feel able to lead a normal life: able to work without excessive effort, and actually enjoy the tasks. Modern I'm does not interfere with my sleep. It does not produce euphoria. It simply gives me normal wakefulness and normal energy.
Awesome! Great to hear. I'm 50 and doing good enough. Modafinil and dextroamphetamine and no beer.
I have this. I have Ehlers Danlos and apnea
Thanks for sharing that Juliana. Interesting how much overlap there is between these conditions.
I have hypersomnia EDS and Dysautinomia. I've now started to get insomnia for 3/4 nights followed by a long sleep up to 32hours. Have you found anything that helps you?
i have EDS as well and many things about IHS sound very familiar. i thought it was chronic fatigue due to the chronic pain that comes with EDS but now i'm wondering if it's really IHS, or if i maybe even deal with both. it would be interesting to see if there's a connection between EDS and IHS
It’s very interesting that the age of onset is similar to that of some circadian issues….
That is an interesting connection
I’ve been suffering from this…I sleep 10 to 12 full hours a night and try to catch a nap at work. All day I feel groggy. I believe I’m depressed and I prefer sleeping to being awake because my life is full of monotonous grueling drudgery. The sleep world is full of wonderful colorful dreams. I think I’ll ask the doctor to place me in a coma so I can be happy full time.
I have this and take 20mg of ritilan tw8ce a dqy and still struggle with fatigue
Great video. I just wish we could look at night time sleep studies of people with IH, and see if low n3 sleep is a component. I don't see anyone trying to group IH patients into sub categories.
Implementation of sodium oxybates are for this purpose.
I have recently been diagnosed with hypersomnolence.. here is my story. A couple years ago I was seeking help for depression like symptoms and put on medication to help combat my sadness and overall tiredness feeling. It was working for the most part however I was never able to kick my tiredness. I then was given a sleep study and found to have "mild sleep apnea", this wasn't much surprise to me as sleeping like "darth vader" was common in my family. I was finally relieved to have a "solution" for my sleep. Everyone I talked to sounded so promising on how much sleeping with a CPAP will change my life. After over a year and a half of using this device I still was having troubles... At this point my wife and I were expecting our first child.. I was worried that I would be holding her and accidentally fall asleep thus dropping her. So I went back to finding a solution. My doctor had moved away and this new NP that took his place suggested I may have hypersomnolence, prescribing Adderall. Adderall has changed my life, I have all the energy that I could dream of roughly an hour or two after taking it, however, feel like I crash pretty hard especially after work and waking up in the mornings is still super difficult. I am 30 years old and within the past 3 months I have been hospitalized 3 times for bad episodes of diverticulitis which your video has opened my eyes to this maybe all being connected... Having surgery in the next couple months to have some of my bad intestines taken out and hopefully being able to reattach without needing a bag. Long story short I wish there was a "fix" for this as medication just seems to be a bandaid during the daytime... It is causing alot of stress on our new family (born Feb 8th) as my wife doesn't allow me to watch our daughter overnight because I'm too hard to wake up, am dead to the world when my head hits the pillow and agreeably so am dangerous with my inability to control sleep... Sorry for all the rambling, I am in line to see a behavioral health counselor and still hoping to find answers/solutions. Unfortunately its 3 months before I can see someone in person. So here I am watching videos trying to fix myself :') Thank you for this wonderful informative content and taking the time to read my mess of a story.
Thank you for the video. The dr wasn't sure what I have because naps help (but only for a short time), I have cataplexy, caffeine helps a tiny bit, and sleep paralysis but I was on medication that made it so my results were not 100% conclusive for narcolepsy. So they told me "you more than likely have narcolepsy because of the cataplexy but we can't say that for sure so we'll diagnose you with IH. If you get off the medication, we can do another sleep test."
That is a common problem these days because a lot of folks are on meds that suppress REM, so it affects the sleep study results. But it does sound like you have a lot of symptoms that fit more with narcolepsy than IH!
I can easily sleep 16 hrs in a day
Been doing this my entire life but it's gotten worse with age. Doctors don't seem to take me seriously. I'm tired of sleeping my life away...husband is tired of it too. I just never feel rested
Thanks for the info! Question, how common is it to get IS after 55?
God's willing, I can optimise my sleeping pattern again after leaving my current demanding job.
Can you please do a video for KLS or please answer a question I can't seem to figure out. Since I was a teenager I have every couple of months a bout of sleeping that can last up to 5 days of full sleep 22hrs+ only waking to use the toilet. I have been looking in to hypersomnia but have no sleep issues between episodes. All the research I can find on KLS talks about sleep periods lasting weeks. I'm wondering if it is something I should look more in to or does the fact I'm only sleeping for days at a time and not weeks rule this out. Thank you for any guidance or point in a direction you or any of the fantastic people in the comments can give.
Nice coverage of this topic. Thank you. Question? Can people with IH still live a satisfying life, like employment, relationships etc? Tia
I found help by taking methylated complete multivitamins
Thank you Mada doctor i am Boblee from uganda and I my have that problem because even if I am from the bed it can't stop me to sleep again , now how can you help me I am 25ys Thank you
My mslt was normal, and i am sleepy all the time, with loosing muscle, they become weak, and they gave me Fnd diagnose.
I feel sleepy full day 💤
Someone else's story shared on youtube said she was a good kid, as in her parents had no problems putting her to sleep as a baby. I relate to that
I have my own story of sleep disturbances but can say that through lucid dreaming, i escaped paralysis and when i wanted my natural dreams back, i induced lucid nightmares which helped me escape paralysis much faster. In the end, i found i am sensitive to sound which was the cause for many episodes of paralysis. I was able, with facebook pages on lucid dreaming, to kick the paralysis. I sleep very soundly now without being forced into lucid dreams
I had all symptoms for years but I thought it was linked to my thyroid disease. After staying overnight for a study, I had to stay til the afternoon for the naps. I not only quickly went to sleep during nap time but the tech had to keep waking me up in between naps lol. I tried EVERYTHING to stay awake. I was diagnosed with Idiopathic Hypersomnia. I was close to being narcoleptic but I was a few minutes off from the REM sleep part. I’m relieved but still very tired and over it. I’m 36yo btw…
I think I might have this. Im right at the age of onset, and would definitely describe my onset of symptoms to be gradual. I do have depression but I don’t want to sleep because of the depression, I want to sleep because I’m genuinely tired. The only thing I don’t believe I have is sleep drunkenness, but from what I understand not everyone with IHS have it. If I do have it, it’s infrequent, like once a month. Im also on adhd meds which probably also have an effect on my symptoms. Im just so tired, it’s been like this since at least December. I just want to be able to function better, especially in the afternoon when the tiredness really sets in bad.
after watching this vlog i am getting to know dat i have similar condition .can i know what can be done for it
I talk about diagnosis and treatment in this video starting around 6:11. But the next step is to talk to your primary care physician or get a referral to a sleep physician to see what is going on and what can be done. Wishing you all the best!
My 25 yr. old neice has this. She's taking heavy meds to fall asleep at a certain time and wake up and a certain time.
IHS sounds exactly what happens to me when I eat gluten. When I was 22 I was constantly sleepy. I could sleep 13 hrs straight, not feel awake, take a 5 hr nap, still not feeling awake. It had worsened gradually. At 22, in college, the only thing I wanted to do was sleep, no matter what else was going on. Brain fog like crazy. Cutting out wheat/ gluten took away all that. Now 15 years later... Many times I have eaten gluten since, unintentionally, found out the hard way how many things it can be in. Every time, it takes me 2/3 days to recover. And now I'm going for a sleep study for the first time in my life. Cause though I feel awake, I sleep through alarms frequently. I feel like I'm being forced to live with permanent jet lag. I can't imagine feeling sleepy all the time and having brain fog and dealing with this. I shared my story hoping someone may benefit from it.
It's so interesting to hear this. I've seen it with some of my patients as well...and personally, I also struggled with sleepiness and fatigue which improves significantly when I cut out gluten! Thank you for sharing your story.
I’ve been diagnosed with IHS very close to narcolepsy. 32 yr old male and I’ve dealt with this since I was young (middle school). I’ve dealt with cataplexy and regularly sleep 8-10 hrs a night and barely feel rested. If I take a nap it’s pretty much a 3 hour endeavor no matter what and sometimes I get the sleep drunkness upon waking. I’ve tried a bunch of non stimulation drugs with no help. Going to try Ritalin next. I use caffeine to help better some days it helps better than others. Hope this helps.
I have been recently diagnosed with IHS. I've been struggling with exhaustion since I can remember. However, recently it's taken a turn and I feel like I'm sleeping my life away. Haven't found anything that helps yet. Caffeine has never effected me, I've tried Adderall and that had no affect, and I'm currently trying modafinil but that doesn't have any real affect either. So frustrating.
Have either of you guys tried xyrem or xwayv yet? My son likely has IHS, wondering if it is helpful.
@@JocieFire I haven't tried either of those. I tried all of the non stimulant wake promoters and none of them worked. After a lot of consideration I talked with my doctor and she put me on Adderall and it has been a game changer. Its not perfect and didn't give me all of the things that I was looking for but I would say it hit about 80% of what I was hoping to achieve. I don't promote stimulants unless absolutely necessary. That is why I tried everything before. That being said it has definitely improved my quality of life and it has been incredible. I still promote using the least amount of force necessary which is why I am on the lowest dose I can while still achieving the improvement of quality of life. I hope that helps.
@@carim2557 that absolutely sucks. I am so sorry. Adderall was a game changer for me and has been a huge blessing. I hope you find something that will help, it truly is a debilitating feeling. Keep the faith though, do what you can and be the absolute best you can be. Also, be kind to yourself. You are a valuable person and are loved by many!
I have just recently being diagnosed with IHS after my MSLT results. I am on stimulants like Ritalin and Concerta but still do not feel awake all day and the after effects when the drugs wear off. I have been exercising daily and controlling my diet well but I still feel I am losing the battle with IHS as it leads often to brain fog, memory loss and slurring over time! Any advice ? Thanks Dr Sam Lee
Sorry forget to intro myself. I am 57 years old Associate Professor of Leadership and I started having symptoms of EDS and Brain fog after striking Covid in Mar 2023 almost a year ago!
@@samuellee3486 sorry to hear you are struggling with this! And post-covid makes it much more difficult. Working with a functional medicine or integrative doctor to reduce inflammation can help. If you're in CA, we see patients via telemedicine in my practice, or my colleague in the Bay Area also specializes in this - her name is Michelle Jonelis MD www.redwoodpulmonary.net/staff/michelle-jonelis-md.html
I have hypersomnia
I don’t know which one because I hear voices and laughter when the person is not there at all it’s like I’m trapped between actually closing my eyes and not being able to hear you versus my eyes mean like an alert and I am able to hear what my dreams are doing
Omg I do too. I haven't mentioned it for fear of being labelled crazy.
@@lex_hayesone form of narcolepsy includes hallucinations in its symptoms.
What is the solution to it
I do have narcolepsy with cataplexy but daytime naps do not help me at all nor does any amount of sleep at night. I do have sleep paralysis and hypnagogic hallucinations. Is it possible to have narcolepsy as well as this?
Once years ago when they did a sleep study; they told me I never reach REM. I've had many more sleep studies since. Can not ever reaching REM cause IH?
I have this problem too and my doctor doesn't know what to do with me :-) I take naps almost every day but with no real energy benefits. Would you recommand to skip the naps or continue even if they don't help much ?
Aw, sorry to hear that. For people with IH, it's usually not recommended to nap because it can cause "sleep drunkenness" and make the symptoms worse.
I scared some coworker because I had gotten into my vehicle to leave home didn’t even know I fell asleep in sub degree weather wasn’t cold
I really wish there were Help for my Narcolepsy ✌ 🐕🙏🙏🙏🙏
Ask doc about Modafinil. See my comment about it!
Mayo Clinic diagnosed me with this
I have sleep apnea and sleep with a machine. Still feel sleepy all day. I normally try and sleep from 10-12 hours and still I’m dead. I do wake up a lot for no reason at all. I also have ADHD and insomnia.
I’ve been like this since I was young and very skinny so weight was not the problem. 😢
I just can’t catch a break 😅
I had a sleep study and the sleep doctor told me to not nap and that was the only thing he did for me. Is there anything else I can do besides trying to avoid taking naps? Which I haven’t been avoiding. I really need help. I have Hypersomnia
To those who have this, have you tried exposing yourself to the morning sun specially the eyes? I wonder if sun exposure helps. I also experience daytime sleepiness.
I have Sleep Apnea and I use a nasal mask because I can't do the full mask. But many times I think I got a good night sleep and by 2 in the afternoon I hit a major wall. Can barely drive home. I know sometimes I open my mouth while sleeping or my mask leaks what can I do to better my results and to get a much better sleep? I sleep around 7 to 8 hours a night. Thanks for the help! :)
what is the treatment for over 70 men
I have IH. I’m on medication and I’m still tired all the time.
I am diagnosed with KLS ... Suffering from IH since last 14 years. In india.. The reoccurring episodes have made my life miserable.. Please help me with any advice
Is there any other ways to test for I.H without having a sleep test?
I have trouble staying awake. I work night shift during the day i normally sleep. If i sit still to long i get so sleepy i cant hold my eyes open. Even while driving i have to pull over take about 30 minutes to hour nap then im fine for a little bit. But on my days off i sleep 6 hrs get up for hour or two then i can lay back down sleep 4 or five and keep repeating all night.
I went to bed friday night at 7 pm. I finally got up for the day at 1 pm saturday. Then laid back down at 4 for nap till 6 before work.
What makes it even better is when your coworkers start telling people you're on drugs and that's why you struggle to stay awake. Frustrating doesn't even begin to describe it.
Mine seem to have started after a physical exam
I have KLS. Cataplexy when younger. Worst episode was a three month period in 2016. 22 hours of sleep a day. Often with sleep paralysis - the first time was one of the scariest things I've ever had. During an episode, I can take 70mg of Vyvanse then promptly sleep for 15+ hours. During the couple of hours I was awake, I would sometimes sit up, but hallucinate that there was a bed in front of me.
Often, the cravings for sweet foods were overwhelming. On several occasions, I would get a tub of Ben and Jerry's ice cream and eat the whole pint in one go. Other than that, I only had the energy to eat cereal. I chose a healthy brand but failed to notice it did not contain vitamin C. I developed scurvy.
The longest single sleep was 30 hours. It doesn't feel like fatigue at onset. It feels like an anaesthetist is telling to count back from 10. It is utterly debilitating during episodes.
I’m sorry but I’m watching this with chronic insomnia. In the Insomnia community, this is such an easy fix, exercise, stimulants, etc. lacking sleep is a whole different story and it’s way worse. What I would do to fall asleep in minutes, you have no idea. I have all these symptoms 10 fold all day and I just simply don’t sleep. So please don’t take sleep for granted. just eat good and exercise.
Edit: imagine having all those symptoms and not being able to fall asleep at all. it fucking sucks. I’ve had hypersomnia before in my teens and now I have insomnia. I’ll take the latter any day 100%
That truly does sound awful. I definitely appreciate being at able to sleep at night. But losing your job because you can't stay awake at work really sucks too. Also I've yet to have a Dr willing to perscribe stimulants.
I randomly get so sleepy that I can't hold my eyes open. I am 53 and this began after I had radiation and surgery for breast cancer. Shortly after also had a hysterectomy and I have hypothyroid. Then I was diagnosed with vitamin D deficiency. I am scheduled to speak with a sleep lab and don't want drugs or a cpap. So I am trying Dr Stasha Gomanak? 's adjusting b vitamins (pantothenic acid) Is there anything else that can be done?
Sorry to hear you're struggling with this. The sleep lab is a good start, if they find sleep apnea then treating that is a good first step. Dr. Gominak's protocol can help also, and some people find that an anti-inflammatory diet may help with the sleepiness and fatigue
Oksoim 32 and im undiagnosed but thi k I have this I sleep through everything I'm always tired it started in my teen years yes I actually slept through first concert who at the time was backstreet boys I was awake at the start and then I was out and slept through the rest I missed it qith whatever I have I miss alot
I find it so hard to study with this I'm failing because of this i used to be an above average student
The sleep centers seem to be in cahoots with the cpap manufacturers. I was given a cpap for very mild apnea, it didn’t help me at all and the Dr’s only answer was to give me modafinil (which then keeps me up all night.) I’ve been this way since i was 16. I’m not even sure how i finished college (at age 25) or ever held down a job. I wake up fine but I only have an hour or two of feeling awake and then it’s nap time until evening 😭 Also was misdiagnosed with hypothyroidism and gained 80 pounds on thyroid meds. It freaking sucks.
I know now that it’s because I’ve been taking a lot of benzodiazepines
Just got diagnosed today. Doctor thought it might have been Narcolepsy but turns out it’s IH. I’ve had it as far as I can remember and just now in my fourties’ hv bn diagnosed. I knew something was wrong with me so did my mother. I’ve avoided certain careers knowing I had this unknown issue. I’m a runner and would run half awake. As a teen n young adult I experience a lot of that paralysis and out of body experience. I hope I never hv those again. I felt slow n dumb but realized I wasn’t I just take longer and have to work harder to focus. I’m looking forward to tking something to help me. I do have a question. Why is it that actual day light or bright light gets me very sleepy. I can drive better before sunrise but at the brightest times I feel the most sleepy.
From Florida - I have an upcoming appointment for this, can I lose my driver's license if I'm diagnosed with IH??
Sure can! But only temporary
How many ouer sleep at night do you advice?
Most people need 7-9 hours of sleep per night
@@IntraBalance i now buth with hypersomnia you need more sleep that why i was asking how many ouers your sleep?, because people with hypersomnia need 10 a 12 ours sleep at night
@@laylaa2811 thank you for clarifying. To make sure I understand the question, are you asking how many hours of sleep someone might need if they have hypersomnia?
@@IntraBalance yes that is indeed the question, how many sleep do you need with hypersomnia?
@@laylaa2811 it varies, and is actually divided into "idiopathic hypersomnia with or without long sleep time", meaning more than 10 hours might not be enough for some people with IH. For others, they may be able to get by with 7-8 hours plus a nap.
I also have IH... I don't no how to get rid of this please any one suggest me anything about this disease
Hello. I have it too. There is no known cure. If you have it diagnosed by a sleep doctor, meds can help. They have helped me most days.
Can u develop this after 40 along with primary hypogonadism and depression?
Brain injuries make people sleepy
Etc
I fall asleep 3 times a day for at least 30 minutes but it seems like a few hours like I wake up in the middle of the day thinking it is the middle of the night and go to bed
I can fall asleep within seconds of closing my eyes at any moment. I’m always so tired that living life is so difficult. I sleep around 15 hours a day. I would sleep more if I didn’t force myself to stay awake. I have tried caffeine, stimulants, and even cocaine. Yet, I literally can still fall asleep within minutes. I feel like I am existing, not living. My life revolves around sleeping. I just want to be normal.
Parathyroid disease can also cause sleep problems
me too I sleeping every time
Mam, I am having ih. Can u please help me mam
Im really get irritated with my self. Because i sleep 15-18 hr aday its very deep i dont want this. How i overcome pleas tell me .😭😭
Aug. 23- 2023. Hello. I can sleep 12 hrs. Straight.. bathroom every. 3 hrs. Then go to bed for another 12 hrs.🎉 Easly. I have It.... I think... I just looked it up tonight. Hah...
My husband😢 died 7 yrs ago. I'm depressed. Cry a lot... I work nights... from 5/ 11.30Am. Sleep @ 2am. Like I said 12 hrs. Then my Day starts al, over again.... thanks.
I do it’s so bad I can’t stand my self
Stimulants make me more tired and providgil a the highest dose I would go to sleep no problem
Hi mam, I am in India , I am struggling with this( ih) sleep inertia for past 15 years, I am now 38 yrs old,male , iam having two children and wife, I am more struggling to wake up from bed, and more than 10 hour sleep then also not refreshed,and fatigue ,brain Fogg, pls save my life ,pls,😭😭😭😭😭😭😭😭😭😭😭😭😭😭,I am struggling to lead my life.pls, scientists my humble request,pls consider this worse disease and discover the recovery treatment as soon as possible,for those people are who affected this disorder like me.it is so painful living with (ih).
So sorry to hear this Prakash! Please see your doctor for guidance on treatment, there are many treatments that can help. Sometimes light therapy and eliminating inflammatory foods can make a big difference with brain fog and sleep inertia. My colleague Deepa Kannan has a practice in India called Phytothrive and she helps people with nutrition and sleep. Wishing you all the best!
@@IntraBalance pls,let me know his( Deepa kannan) contact details pls,pls ,my humble request.
And of course my country has all of these drugs banned or just doesn't import them at all 🥰 How I love life.
Filling drowisness all day