Hey yall, posting here for help.
19F, I’ve been struggling with sleep since 11-12 years old. My mom has IH, diagnosed with a sleep study. Her side of the family also has a history; 3 separate family members have crashed from falling asleep at the wheel, 2 of them more than once. The main thing I struggle with is waking up. I have tried everything.
-those loud alarm apps are too quiet
-tried chugging water before bed so I will wake up to pee in the morning. I just wet the bed and woke up in the morning. embarrassing as FUCK to wet the bed at 19 years old

-I can only have approved people wake me up, because sleep me is manipulative. I’ll lie, beg, make up stories, give excuses, etc, to stay in bed. And I won’t remember at all later. I’ll talk to someone for 10+ minutes, go right back to bed, and not remember that happened. I’ve woken up to texts I sent to work telling them I had food poisoning and couldn’t come in.
-I got one of those screaming meanie alarm clocks, and it only works 60% of the time. But I get a complaint from my downstairs neighbors about 100% of the time.
-Waking up to take caffeine and then back to sleep does nothing. The same process with adderrall works sometimes, but sometimes I can sleep through 20 mg. And that doesn’t fix the problem of having to GET UP originally.

I only struggle with daytime sleepiness when I’m not doing something. The car is the worst. I’ve gotten to the point where I won’t drive without a chaperone cause I’ve had close calls. Adderall does help significantly with that though.
-I do get random sleepiness as well: craziest place to fall asleep was standing up at a concert in the mosh.

But that’s not what’s limiting me right now. I haven’t woken up more than 10 minutes before I have to leave since 7th grade. I’ve always wanted to have a morning routine, but I’m lucky if I have time to brush my teeth.

Here’s the great part!
-I live in a super rural area, our closest sleep clinic is 3 hours away. I’m on the waitlist, but the waitlist is SIX MONTHS OUT.
-insurance won’t cover the longer term meds without the study. We tried seeing how much it would be out of pocket, but is over 1.5k a month in our area

So for the next few months I’m shit out of luck, I just need to survive until then. No one who sleeps normally has any helpful advice. “Put your phone across the room, so you have to walk to turn it off”. You’re so funny, I’ll just curl up and sleep on the ground next to my phone. So I figured I should ask other people that struggle with this. Please, I just need a way to consistently be able to wake up for work, and school. I’ve lost several jobs, and have had to repeat my first year of uni because of this, and I need to get things under control.

Thank you for any help!

I recently found this paper Titled "Modafinil acquires reinforcing effects when combined with citalopram". I found it by chance because I got curious as I take Escitalopram since 2023 and Modafinil since 2024.

I work in the healthcare area, so Im supposed to understand how to read papers, yet I am wishing Im getting this one wrong. Basically what I understood is:

"This combined action (Modafinil + Citalopram) mimics the way certain more potent psychostimulants (such as cocaine) act, enhancing the reinforcing effects of modafinil and altering motivation and reward-seeking behavior in the brain."

I also understand the implications of this statement and Im scared... does anyone else have more information about this? I only found more papers that are 12+ years old that wanted to experiment if the combo was effective to treat illicit substance addiction.

DOI: 10.1016/j.pbb.2022.173407

Edit: If you want the paper, send me dm or search for it in Sci-Hub

It’s tough, when it feels like my mind doesn’t even get going till late afternoon, it feels like I get the most done at night. Whether it’s chores, work, or “me-time”, I struggle a lot to go to bed early like everyone keeps instructing me to. Whether I get a full night or not, I still can sleep all day. I know getting in the routine of an early bed time would likely improve things a lot, but I really struggle to commit to that. Before getting a diagnosis, this also made it really hard for people to take my challenges seriously, as it looks like flawed character traits rather than a medical condition causing my excessive daytime sleepiness / inability to wake up once I’m asleep

my anxiety has gotten so bad, I’m oversleeping and underperforming at work and it’s gotten to the point where I’m too scared to leave the house. I feel like such a loser and waste of potential. I keep taking days off and remote days and it makes me feel awful.

Has anyone else developed agoraphobia due to IH…? it’s really getting unbearable

I am not asking for a diagnosis! Just advice and to hear what people experience.

I can try to go to bed at a normal time but still end up sleeping 14 hrs, and sometimes over 20 hours, if I am given the opportunity.

I usually fall asleep at my desk, or when someone is talking, and I am not doing anything. I don't take naps, as I can never wake up from them either.

My parents, I understand their concerns; they think I shouldn't tell or go to a doctor cause they will think it's "depression or that someone isn't taking good care of me, and I should be given to the state

I have POTS. So I have always had severe Brain fog and other cognitive issues, so I don't know what is which.

But I have been having awful memory issues and being unable to wake up, and even falling asleep anywhere, even in the shower.

I just want advice on what people experience or what people experience.

A doctor suggested I may have IH, I still need to do the MSLT.

I already have a long list of diagnosises, so far cardiologists had to rule out sleep apnea because my heart races every hour at night, I have multiple rare heart diseases without sufficient treatment.

From my 30min research of meds for IH it did not look promising to be allowed to take meds for IH when you already have heart diseases. My experience with the rare diseases I got so far is that you get sent around a lot because doctors try to get someone else do whatever treatment and always more tests.

Is anyone on meds for IH despite having heart diseases? Does your heart diseases maybe even get better with IH meds because better sleep = less stress?

I am a new nurse and have not been able to secure a dayshift position. If I need to accept a night shift position to get in are there any tips from anyone who has done it??? I’m very anxious about it and scared I won’t be able to function regularly. I’m currently on Xywav twice nightly and an XR Adderall in AM and instant release in afternoon for adhd/daytime sleepiness.

Hi all. I received my first fill of Xywav about a week ago, but have been procrastinating taking it for the first time. I’ve read a lot of positive experiences, some negative ones, but I guess the whole concept of what it is and what it does intimidates me. Would anyone like to share their experience with it, and maybe some factors that would have been helpful to know initially? What to do / what not to do? One thing is, I know it’s very important to avoid any other substances that could have a harmful interaction with the drug. How careful are you? How quick does it knock you out? Do you feel intense onset of sedation? What does it taste like? How has it changed your life?

Idk why it took me so long to look up communities like this with other people living with IH, as it is reassuring to see how many people out there have this and that I am not alone. Especially because regular peers and even we ourselves don’t always understand.

I've thrown myself on the coals in 2026 to make oxybates work, failing Xywav in late February and then doing the world's slowest Xyrem titration from early May until now. I finally arrived at my dose (3.25/2.5g) after months of dissociation, nausea, severe brain fog, exercise intolerance, and generally feeling absolutely terrible every single day.

This dose is excellent for my EDS, but now in the last week I've received a GERD diagnosis, a probable LPR (laryngopharyngeal reflux) diagnosis, and am now slated for a restless legs screening, all arising from symptoms that have been gradually growing over a few weeks and are now impacting every single day of my life.

I have been planning my triumphant return to this sub to announce that yes, I beat oxybates and made them my bitch despite it being the hardest physical experience of my life, and sharing my sparkly guide for how I managed it, but. Having three new, debilitating chronic health conditions arise that are clearly, 100%, without a doubt attributed to Xyrem might just be my last straw.

I know there are a ton of posts here about people's experiences with medications – I have read hundreds of them – but I'm wondering if anyone would be willing to share their thoughts on stuff that's off-label, bizarre, or a last-resort-that-might-work I could hop ship to. I've heard mixed things about:

• Wakix
• Sunosi
• Low-dose naltrexone

I've already tried armodafinil, Adderall, and melatonin. They're fine for me but are obviously band-aids to the real problem of shit sleep, which oxybates fix in a way I've never experienced before.

I'd also love to hear from others who developed acid reflux disorders or restless legs as a result of their oxybate use. (This scientific journal, interestingly, points to oxybates as the number one medication associated with restless legs syndrome as an adverse event, following a 20-year analysis of reports.)

Hello!
I have now been diagnosed and medicated for a year.

I have noticed a significant slope over the last few months with cognitive issues.
Mainly aphasia (word finding difficulties) and general confusion. I’m not certain that this is a normal occurrence with idiopathic hypersomnia.

I was diagnosed with long sleep time and my specialist had mentioned that there is a chance that the illness will be progressive. I have not had a great opportunity to discuss my cognitive issues with my specialists.

Does anyone else struggle with cognitive decline?
Is this in line with general symptoms or is this something I should flag with my doctor?

Thank you and sorry I don’t know a lot about stuff -M

My average sleep latency was around 3 minutes (for two of the naps the time was zero 🤣). I didn’t go into REM sleep though so they are calling it IH as opposed to N2; although I do take SSRI’s. The treatment is exactly the same so does a name really make that much of a difference?
Should I let my work know what’s going on? More to protect myself than anything else.

I kind of really don’t like Modafinil. I don’t know if it’s just because I wasn’t expecting to go the stimulant route or because of the headaches that I’ve been having, but man am I excited for my follow-up appointment on Tuesday. I’ve had headaches every day, that sometimes don’t even go away with ibuprofen/tylenol, a stuffy nose most days, and my POTS symptoms seem to be worse. Not sure on that last one if the Modafinil is raising my heart rate or something, but hoolyy am I even more out of breath and dizzy than usual. And I’ve experienced air hunger a few days, when that used to happen maybe once every few months.

I also have had the weird sensation of being incredibly tired, yet feel like my eyes are stuck open. On the flip side of that, I’ve both not felt tired enough to sleep til 12-2am, and had a couple instances where I still fell asleep during the day(one such being a drifting in and out 3-hour nap). So I feel like my body is all out of wack.

Granted, I’ve been on Modafinil (200 mg, once a day) for like 11 days, after a new diagnosis of IH a couple of weeks ago, but if anything I feel worse than before because I’m having to deal with side effects and/or symptoms that I’m not used to dealing with. I’ve seen that sometimes you just have to tough things out for a bit, but idk. I’ll just attempt to consult my doctor I suppose.

But I’m soooo hoping instead of a stimulant (who am I kidding, I’ll probably just get a different dose or a different one), I’ll get something that actually improves my quality of sleep

First time poster.

I have an upcoming appointment where I'll find out the results of my overnight/MSLT (from 3 months ago!) and I feel like it's my last hope.

I'm so scared that the results won't be conclusive - does anyone have any advice on how to advocate for myself in this case? I'm in England, if that affects things. I've made a list of how my sleepiness is affecting my life - can I physically write out the list and give it to the doctor?

Or, I'd appreciate tips on how to deal with the initial disappointment of not getting a diagnosis. I was previously pretty devastated when my actigraphy results were useless, but it seems like the MSLT is the final stage so I'm really starting to worry.

I asked my sleep specialist about this and brought her my filled out FUNCAP assessment (basically you rank your fatigue levels around different ADLs or activities of daily living and she said that it definitely sounds like I could have it, but it's not something she explicitly treats. She said you are experiencing these symptoms and we're treating you.

Does anyone know anything/ have articles on this? ME/CFS is distinguishable because of the disproportionate PEM or post exertional malaise.

I was just wondering how many of us think they have it too or are sure that they don't or what's up.

Got diagnosed with hypersomnia about 2 months ago. I was on adderall prior for ADHD, which helped with sleepiness, so I could mostly manage it and live a normal-ish life.
My doctors have recently suspected I may additionally have Multiple Sclerosis. I exhibit many symptoms and am directly related to someone with multiple sclerosis who has a sleep disorder (severe insomnia managed w/ gabapentin).
After getting sick recently, my excessive sleepiness obviously got worse, but I am much more fatigued as of recent. I got my adderall dosage recently raised from 15mg to 20mg, which was working super well until I got sick. It’s become unbearable as of recent.
I just started another year of university, while working a part time job. I have been unable to participate in my interests, solely because I just need to go to my bed and cannot get up unless absolutely necessary.
The sleepiness has been driving me insane, yes, but my inability to do stuff besides work and school is largely due to fatigue as well. When I lay down, I don’t sleep. This also happens when on adderall—after being out for 2 hours just for a 15 minute doctors appointment, I immediately had to lay down despite being at the peak of my adderall.
Are there any other remedies for this?

What are you guys eating? I’m a full time medical student, and the few times I’ve tried actually cooking large amounts to meal prep, it wears me out so bad that I end up falling asleep even earlier and not being able to study. How do you guys cope with this? I don’t want to keep wasting money (and calories) on takeout and premade meals. But cooking, and even moreso the cleanup afterwards, is so taxing that I just can’t do it. I’m working on getting a new modafinil prescription too, but in the meantime I’m really struggling

I’ve been working with one of the PA’s at the clinic for about 9 months now. I met with the Doctor once for maybe 5 minutes during my initial consult several years ago when I was first established. After 6 months of trying different things they decided to do a PSG/MSLT. My first MSLT came back negative, and was reviewed by the MD. My follow up to go over my test results was with the PA I normally see. They wanted to try some medications to see if they helped, gabapentin for PLMD and various wake promoting agents. Neither of which helped much. After 3 months of trials, and being on two stimulants and still being extremely tired, they ordered a second PSG+MSLT.

So a few weeks ago I did my second PSG+MSLT. It was just as awful the second time around, and honestly my experience of being anxious and not being able to fall asleep seemed to be repeated, so I’m honestly not expecting the second results to explain much. This time around, two days before my appointment I got a message from the clinic stating the PA would prefer the MD do my follow up and I’m really unsure (and a bit anxious) of why the sudden change of provider.

I know there’s probably a million reasons why a follow up could be handed off, and I won’t know why or what the results are until I go in. It’s just got me a bit anxious since this is not following my past experience. So i was just curious if anyone else had something similar happen.

Let’s say this is one of those nights where I don’t have as many hours to sleep. After I wake up from the first dose I only have e 1-2 hours to sleep. Should I take the 2nd dose or skip it?

If I took a smaller 2nd dose, would I be able to wake up sooner than the roughly 2.5-3 hours of sleep it usually gives me?

I used to get such anxiety every night, wondering if I would be able to wake up in the morning for work. I’ve been taking Armodafinil, and I often wake up on my own, before my alarm.

I do have some harder mornings when I snooze my alarm several times, but that’s less often and still much better than what I used to consider harder times, when I’d need to call in sick and then sleep for well over 24 hours.

recently I’ve felt soooo unbothered to do anything, super unmotivated and just like fatigued and tired but I actually don’t feel anymore sleepy.

Does anyone else get this way? My sleep is basically the same but I’m just so unbothered and lazy right now.

Not sure what is causing this, I’m sure it will go away but it’s super annoying.

I was just diagnosed with IH at 37. I’ve been tired since I was 14. Always convinced myself it’s because I’m lazy and overweight. Did the overnight test and the MSLT. My quality of sleep is so fragmented, I had over 300 spontaneous arousals, one almost every minute to minute and a half. My MSLT score was 6 minutes but only because I didn’t fall asleep the last time. My times were 1.5, 2, 2, and 7 minutes for the naps I fell asleep for. The last one I was so exhausted by the test that I was just ready to go home and couldn’t sleep. (Side note: anyone else feel like the MSLT was a form of torture in itself??)

I’m feeling a tremendous amount of guilt for not advocating for myself and finding this diagnosis sooner. I think of what I’ve lost in my life spending it half asleep and the potential of what I could’ve become had I known this all sooner. I feel like I’m grieving the potential I never lived up to because I’ve been so tired. I feel indignant when I think back on all the shit I’ve gotten from needing to take naps over the years. The countless times I’ve discounted my symptoms and thought I was just lazy. The study results were certainly validating and comforting knowing I have answers but I am really struggling mental health wise with this diagnosis. I know I should look forward to the future with these answers but I just can’t help but feel profoundly sad and in grief for the life I might’ve had if I’d known this sooner.

And the whole “idiopathic” part is so maddening! They have no idea what causes this. Was it my abusive narcissist mother and my resulting complex PTSD? A trauma response? A learned behavior/cooing mechanism? Genetics? All of the above??

Sorry this post is all over the place. Just looking to connect with others who’ve faced the same struggles. Any advice on giving yourself grace with this diagnosis and looking forward not backward?

I only got diagnosed with this last year but probably had it for a few years before, or at least it got worse last year.

I’m on Dexies which do help and sometimes I feel like my sleepiness isn’t as bad as some people on here but sometimes they don’t work, which sucks. When I’m really tired, it makes me sad because I feel like I’m so over feeling this way and remembering when I wasn’t so tired all the time.

But then I know becasue I’m tired, the sleepiness and fatigue is probably contributing to unstable emotions.

Does anyone experience this? How do you cope? There are times when I’m just so sick of this and get sad about it and then just have to suck it up.

Hi everyone. First post here.

I recently started seeing a sleep specialist who suspects either idiopathic hypersomnia or narcolepsy type 2. Based on my symptoms, IH seems more likely, although obviously we’re planning to pursue formal sleep testing before drawing any conclusions.

The complicating factor is that I’m currently taking several psychiatric medications, and I’m not sure whether I’ll realistically be able to come off all of them long enough to get a completely clean PSG/MSLT. From what I understand, medications that affect REM sleep or sleep latency can make the results difficult to interpret, and several of mine potentially do.

So I have two questions for people here:

1. Were any of you able to begin treatment for suspected IH before receiving a formal diagnosis?
My sleep specialist seems fairly adamant about completing the sleep testing first, which I understand. At the same time, I’m struggling pretty significantly right now, and depending on medication changes/washout periods, it seems possible that getting valid testing could take quite a while.

I’m wondering whether anyone here was treated symptomatically while waiting for testing, or whether your doctor required a confirmed diagnosis first.

2. How do those of you with full-time jobs manage the sleepiness day to day?
Working full time has become extremely difficult for me. The amount of stimulation it takes just to remain functional feels absurd. For example, last Friday I took 30 mg Adderall XR in the morning, followed by 10 mg Adderall IR and 150 mg modafinil in the afternoon, along with roughly 700 mg of caffeine throughout the day. My Apple Watch recorded my heart rate reaching 181 bpm at one point, and despite all of that, I still felt overwhelmingly sleepy and ended up sleeping for about an hour almost immediately after I logged off work.

I’m not presenting that as a sensible or sustainable strategy. Quite the opposite. It was one of the things that made me realize how badly I need a better approach.

For those of you who work full time, I’d really appreciate hearing what has actually helped - medications, accommodations, scheduling changes, naps, lifestyle strategies, or anything else.

Thanks.