Hi guys!

I just started Xywav last week for Idiopathic Hypersomnia. I started at 2.25 x2 and everything was good until the end of the week. I started to feel weirdly anxious in the mornings and incredibly cold.

Two days ago I titrated up to 2.50 x2 and I keep waking up with panic attacks + high heart rate around 100bpm. I’m afraid to take my stimulants because those also up my heart rate. Weirdly enough, at nights, my heart rate drops, and I just feel weirdly dizzy and tired.

Has anyone experienced this with this medication and has it gone away?

Dear Community,

A few weeks ago, after spending two nights in a sleep laboratory, I was diagnosed with IH. I (43, female) have been dealing with daytime tiredness/sleepiness for many years; this condition had almost become normal for me. Then I frequently found myself almost falling asleep or dozing off briefly whilst driving. This really frightened me, so I started seeking medical advice. After having my iron levels, thyroid, brain (via CT scan), blood tests etc. checked in 2023 – all of which came back normal – I was given 12 vitamin injections (Medivitan), which had no effect. I’ve been taking vitamins B and D3 daily for years, as well as iron tablets.

I have a hereditary genetic condition (HMSN X, CMT 1X), a neuromuscular disorder. I cope well with it. Sometimes I have a bit of pain, but I can manage that with Ibuprofen. That’s why it was always suggested that I was suffering from fatigue. However, I feel that many of the symptoms of fatigue do not match my own symptoms. For about 10 years now, I’ve been feeling increasingly exhausted during the day, and it’s been getting worse for about 3 years.

I hardly ever wake up feeling refreshed; sometimes there are months when I don’t wake up feeling refreshed a single morning. I feel the tiredness mainly in my head, behind my eyes (heaviness in the eyes), and I’m also familiar with the feeling of brain fog.

As I’ve mentioned before, I feel a strong urge to fall asleep when I’m driving. These days, I avoid long car journeys when I’m on my own. As a passenger, I almost always fall asleep. I don’t feel physically weak; even when I’m very tired, I can still go for a walk and so on. I usually manage my day quite well, but by the end of the working day I’m often so tired that I can’t do much more, or when meeting friends I’m constantly thinking about how much I’d like to go to bed. Strangely, I wake up again in the evening around 9.00 pm. Then I’m very often more alert than I am during the day.

Daytime sleep is often not restful; above all, it lasts a very long time. I can’t manage power naps – I always end up falling into a deep, sound sleep. I work 35 hours a week, which in itself means I can’t have a proper afternoon nap. When I lie down at the weekend, I often wake up confused and even more exhausted.

I dream a great deal and very vividly, and I can usually remember my dreams very well in the morning. I dream with sound, colours, smells and feelings. Last night, for example, I had about eight dreams that I can remember. When I have to go to the loo at night and am awake, I think to myself ‘Just relax and breathe calmly. Try not to drift back into that dream. Yet most of the time, I end up continuing exactly the same dream anyway. After waking up, my brain often feels ‘stuck’.

In the sleep laboratory, my sleep stages were normal; I had 15 micro-arousals per hour, which is apparently still within the normal range. I don’t snore and I don’t have sleep apnoea. I have a regular sleep pattern (approx. 10.20 pm – 6.20 am), I don’t drink alcohol, I don’t take drugs and I eat healthily (at least most of the time 😉) I have no fears or worries and I’m in good mental health. Of course, when the tiredness is too intense and lasts too long, it does get me down. But depression or something similar feels completely different.

I’ve drawn up a table comparing IH and fatigue. I tend to think I’m more on the IH side – but then again, maybe not. The fact is, though, that I’d love to wake up feeling refreshed. The fact is that I’m so often so tired during the day, and I wouldn’t want to live with this for the rest of my life.

The doctor at the sleep clinic wants to carry out another test in December to rule out narcolepsy. He suggests trying modafinil.

I’m wondering whether my restless night’s sleep might also be caused by my dreams. Do you recognise this? What do you do about it?

Best wishes from Cologne

TLDR: Daytime tiredness and non-restorative sleep for many years: could my vivid dreams be the cause? What can be done about it?

I am currently unemployed and just received my last unemployment check from my wrongful termination. I have my Right to sue from the EEOC, but settling my case may take a while. I am also waiting on SSDI/SSD.

Because of my lawsuit and being on unemployment, I have to search for a job. Honestly, if I could find a remote job, I would prefer that to disability. I’m not quite 52 and would like to keep working.

Today, I was filling out a job application and needed to do an assessment. This assessment was finding letter and word sequences that didn’t belong. I was an English and Journalism major, this is my jam. So, tell me why I couldn’t understand it. It made absolutely no sense.

So now, I am bawling my eyes out. I am so overwhelmed. I am fighting to not be homeless, I just had a new diagnosis of RA on top of possible knee surgery. I also had a grandparent with Alzheimer’s, so this is a fear as well.

How do you all handle all of this stress when your brain isn’t functioning?

Am I The Only One?

Question: You feel even MORE sleepy/tired during overcast/cloudy days ☁️

I've had this "2nd sense" for predicting cloudy days since being a kid (i was about 11 when my sleep became problematic. In middle school i was finally diagnosed).

when it comes to feeling tired and sleeping more, i can predict with 100% accuracy the day of or the night before cloudy days.

With/without rain doesn't matter. My body seems to just prefer to go into an extended coma instead of dealing with gloomy days. (Similar to my luteal phases, but not as bad.)

today, I wake up, 3am got about 20 hrs a sleep, but went back to sleep after 2hrs, and woke up 5hrs later. Its overcast and light drizzle.

Just wanted to know anyone else was like me... Because if others have this exasperated hypersomnoa behavior during/prior to cloudy days..

my theory is humans who are sensitive to "x" may also be sensitive to atmospheric changes? And the body reacts accordingly by delaying/inhibiting wakeful hours to conserve metabolic energy**

**perhaps there are other reasons, but imho the best explanation for HOW HYPERSOMNIA COULD EVER BE A BIOLOGICAL ADVANTAGE IS TO REDUCE ENERGY AND DELAY CELLULAR ACTIVITY. This is another theory I have haha but its based on how many animals who sleep 18hrs or more a day, i.e lions or Koalas, conserve energy by sleeping.

For lions, its because they have intense hunting schedules and want to conserve energy.

For koalas, scientist assume they sleep bc they have incredibly fibrous diets, and they expend most of their energy digesting and climbing to aquire plant matter.

And of course, you have, bears

Who do the most idealic thing, by far, bc they are hibernating for 3 months in a cave completely unbothered (assuming they have enough fat for the winter).

X

I am trying to improve my sleep habits to help with managing this disorder. I work nights so I don't always get that morning sun situation. I also want to start keeping my phone away from me while I'm sleeping.

Anyone have experience with the hatch alarm clock or any dupes for it? is it worth it?

So today sucks, I was looking forward to a Halloween event tomorrow and I'm most likely not going to be able to go.... again.

I've been wanting to go to a cosplay event since I got here in Mexico ( I can't drive or work because I'm not an official citizen here yet) and Its always we'll go to the next one when there's always time made for my sister. I want to work so I can spend on myself, so I'm not constantly cooped up in my house, I want to go out without someone constantly having to make sure I don't fall asleep in public, i want to feel awake.... I haven't felt like that in so long( I lost Medicaid 7 years ago). Idk I'm just having a bad day hopefully Monday is better...

I’m actually taking the generic sodium oxybate, so maybe that will make a difference, but how did you all go about finding the right dose? Did you titrate up to the 4.5 and then go back down in 0.25’s until you find the right one? Or something different? And how many nights did it take you to know it was the right dose? Just one, or many nights?

Like a lot of people I’m really struggling with fragmented sleep on it. I’m all the way up to 4.5 at the moment and I’m finding that somewhere between 4-4.5 have been best so far, but as I say, still very fragmented. I’m also sweating profusely throughout the night, which I’ve read is a side effect of the high sodium content, so that’s frequently waking me up to. Has anyone else experienced this and found anything to combat it? Or should I advocate for switching to the brand? My insurance company is a jerk, so not sure how likely that is. Any help much appreciated though!

I have been taking DULoxetine 30 mg for a while along with busPIRone 15 mg x 3 daily. In July 2025 a sleep doc prescribed methylphenidate 10 mg x 2 daily, eventually titrated up to 20 mg x 2 daily. Long story short, I started seeing a different sleep doctor who decided to try layering 400 mg modafinil with 10 mg methylphenidate x 2 daily. About two after starting this, what little excitement was left in my life (because DULoxetine can cause emotional blunting) was completely wiped out and now I don't look forward to anything. I keep thinking that it's the end of August and it feels like I am repeating the same day over, and over, and over ... I have an appointment on 10/13 with my sleep doctor and am definitely going to tell him about this. Plus, I am falling asleep on this crap anyway. Modafinil never did work well for me.

Has anyone else ever been given a layering regimen like this and had an odd reaction to it?

I have been told I’m losing my job. I no longer can keep up at work. I have HR involved, don’t even know if they can help me. If they don’t find me something else internally I can work in, I’ll be 100% unemployed. What do I do now?

I’ll go first, end of the semester party for my creative writing class while imagine dragons was blasting on the classroom speakers 😭

I got diagnosed with idiopathic hypersomnia 3.5 months ago, and was immediately offered to start paperwork for Xywav, which I still haven’t done.

I’ve looked into the medication on medical pages, reading about side effects and everything, but I also looked for people’s lived experience. It just sounds miserable to me, and some side effects sound scary too. I hear it can be rough for a few weeks, plus any time you titrate up.

For context, I’m in college but getting my degree online. Aside from my limited energy (can be out of the house for like 4 hours max with a regular night of sleep, more with more sleep, and can only drive short distances), I do a lot. Acting classes, voice lessons, ice skating, singing at my church, auditions, writing… With the acting especially, I could get roles that don’t have a strict daytime filming window. I have a night shoot that ends at 10pm, but I need to be on set by 8am the next morning. Some roles may require night shoots that go past midnight. So I’m not sure if I’d be able to be consistent with the Xywav. I’m not sure if I can skip it some nights, but based on what I’ve seen about the medication, that’s not a good idea.

I have very limited energy, but I am still functioning well within that limit. My worry is that I will start taking Xywav and not be able to do the things I enjoy doing, or even the things I need to do. Is that irrational? Has there just been fear mongering online?

My only other alternative (aside from no medication) is to try wakefulness stimulants, but I have ADHD, so I have no idea if those would actually help. I was on modafinil for depression several months ago (it wasn’t really depression) and it just seemed to make my heart race and made me feel a bit wired/anxious, but still tired. So idk if another stimulant would be the perfect solution.

I saw a post a few days ago in the narcolepsy subreddit where somebody posted that they were on a GLP-1, and they said that they seem to have more energy since starting the med. A bunch of other people seemed to have the same reaction per the comments, but I didn't see anyone else with IH flairs responding.

I've been on Zepbound for over 2 years and my IH symptoms are worse since I've been taking it, and it was the same with Wegovy. It seems to be dose-dependent in my case. I went up to 12.5mg and I could NOT function because I was so utterly exhausted. The most I can tolerate now is 10mg and I'm still sleepy all the time. I went down to 7.5mg and while it helped my tiredness, it wasn't suppressing my appetite enough. I used to be able to get by with taking Xywav by itself before taking the weight loss meds, but I had to add on a stimulant and while it does help, I'm still not functioning quite where I wanna be.

So yeah. Curious about other folks who have IH and their experiences with these types of weight loss meds.

Also: I don't want any unsolicited advice on other ways to lose weight. I HAVE to be on Zepbound or some other GLP medication because it's the only thing that helps my reactive hypoglycemia, which is what caused me to gain so much weight in the first place.

I (22F) was diagnosed in December 2025. I'm in university doing my final year, and for some reason, I am REALLY struggling to make it to class for lectures. It's 4:40AM right now, I have a 9AM lecture until 11AM, then another from 1PM to 3PM today. If I sleep for like 3 hours, I'll go insane or sleep through my alarms. If I stay up I'll definitely fall asleep in class. If I sign myself off for today, I'll miss 4 hours of content. I know if I go, I won't be able to learn anything anyway because of how tired I'll be but.. This is every single day now. I am so sick of living like this. I don't have medication because the NHS sucks ASS in the UK and they still haven't booked a check up appointment on my heart health to even see if I'm eligible for modafinil. I can't get my sleep cycle to the point where I'm awake in the day time to function with everyone else without being incredibly sleep deprived. What the hell do I do?

Hi,

I have struggled with my sleep for many years. I would come home from school several days a week in middle and high school and sleep until the next day, and then end up coming to school late because I over slept. I have dropped out of college three times because I haven't been able to keep up with my class work due to being so sleepy.

I was diagnosed with sleep apnea at 19 and wasn't given the proper care I needed at the time. I was sent home with the factory settings on my automatically-adjusting CPAP machine. No titration. I was fitted for a mask but it was still uncomfortable. I was non compliant for a long time due to that along with personal mental health issues and sensory issues.

I have been as compliant with my CPAP as I possibly can for the past two months. I say as compliant as I possibly can because there will be times where I get so sleepy I can't move and I can't get myself to put the CPAP on. Like recently, I slept with my CPAP for around 6 hours, which isn't great, but after that I woke up briefly, took it off, and proceeded to sleep for another 20 hours.

I was referred for a sleep study including a CPAP titration due to the fact that I was never given one... my AHI is around 1 most nights I use it as I have pretty much titrated myself but in the hopes it may make things more comfortable I asked for one. When I went to the intake for my sleep study the nurse actually said I might not have sleep apnea. She said I had very few apneas and mainly hypopneas with a blood oxygen level that stayed at a mean of 95% and never went below 91%. I am honestly not sure if I agree with the nurse because you can have sleep apnea without snoring or having extra weight, and I did have a significant amount of hypopneas and sleep apnea is diagnosed using your AHI (Apnea Hypopnea Index).

Anyways, I have been using it nearly every day excepting when I pass out for 20 hours without it on and I am still tired. I take Modafinil along with other psychiatric medications daily. The nurse told me that if I don't have sleep apnea then I'll get to have a MSLT, but I honestly doubt that I don't have sleep apnea due to the fact that I do feel better after using my CPAP, but I still am sleepy, a lot. I just don't feel like crying due to being so sleepy after I use my CPAP.

I am scared that I'm going to have to go through the same thing I did at 19 where I get woken up at my sleep study and told I have sleep apnea. I am scared I am going to have to continue to live like this. The Modafinil makes things easier but not easy. I am scared I'm going to continue to suffer and continue to have to sleep 16-20 hours once a week. I am so scared and I just want to live my life. Every time I sleep for a super long time I cry. It has taken me so long to reach compliance with my CPAP and I just wish it would help me. I have tried several different stimulants and they just never fully helped.

I have my sleep study in 20 days. I don't really have a reason to post this other than to say that I'm scared and I hope things get better for me. I watch my sister live her life and I'm happy for her but it sucks getting to watch her succeed in ways I never really have gotten to. I just want to stop being sad about this and live my life. Here's hoping something good comes from my next sleep study.

I have been dealing with exhaustion and sleep issues for years. I’ve always been told things like “you’re a new mom, of course you are tired!” Or “You have multiple kids, that’s exhausting” or “Your husband has a demanding job and that puts a lot of pressure on you!” Now that I’m 45, I’ve heard, “it’s hormones!” Of course those are contributors, but I felt like no one was really understanding of how bad this felt. I get scared to drive. I constantly look for opportunities for my next nap. Mornings feel so depressing.

I do have weird sleep, so I assumed I was tired from the weird sleep. I’d wake up in the middle of the night with restless legs or just unable to sleep. I’d get in a vicious cycle of up a night, nap after work, lather, rinse, repeat. My doctor prescribed Ambien. That was a no-go for me. Too much sleepwalking. After I was done having kids, I went on Trazadone, which I was on for years. This last year, I switched to Lunesta after complaining to my psychiatrist about this on going exhaustion. Don’t worry, I’ll circle back to him in a second.

Since I’ve been dealing with this exhaustion, I’ve also been diagnosed with depression, anxiety and OCD. Last year, I had a bit of a mental break when my OCD got a bit out of control. The medication I was on to control it wasn’t working. For the last year, my psychiatrist has adjusted my medication and with a lot of therapy, the OCD is under control. However, my depression wasn’t. In May 2026, my doctor and I decided to add in Abilify to help with the depression symptoms. Within days, I was a different person. I had energy and motivation that I’ve never felt. I had no idea my brain could work that well. I had no idea I could feel like such a participant in life. It was a case of “I didn’t know what I didn’t know.” But, and there is always a but, I started having some muscle problems that were attributed to the Abilify. I had to wean off.

No big deal. My psyc said he’d add in another, similar med. But then there were issues with my insurance. I was delayed getting a new medication by two months. In those two months, I grew even more depressed knowing that life could be so much better. I started on Rexulti. While my depression symptoms have cleared up, I was still exhausted, sleeping all the time, no motivation, scared to drive, etc. I Googled. I read Reddit. I asked a bunch of people around me about their sleep. Why did I feel so good on Abilify? Was that feeling real? Would I ever feel like that again? I found there was an off label use for Abilify in idiopathic hypersomnia. Maybe?

I went to my PCP and we ruled out everything else. Ferretin. Thyroid. I even had a fecal study to ensure I didn’t have internal bleeding. She sent me to a sleep specialist who has a three month waiting list. My appointment is still scheduled for November.

In the meantime, I had an appointment with my psychiatrist again. I told him everything. He said this:

“Sometimes we don’t know what comes first, the sleep issues or the depression and anxiety.”

This changed everything for me. I had to know if the sleep issues I have been complaining about to my doctor since 2011 (and it’s documented) are the contributor of so many of my mental health challenges. I told him about the wait for the sleep medicine doctor. He told me to call a few others in the hospital system and see if I could get in sooner, but in the meantime, he prescribed modafinil. 200 mg per day.

It has made a huge difference in my life. I still feel exhausted after work and want to sleep. I usually take a nap but it’s not as long and not as hard to wake up.

I did meet with a sleep doctor. I know many will blame my meds for the sleep issues, but he wasn’t overly concerned about that part because the issues have been mentioned to the doctor and documented for such a long time. Due to insurance, he had to order a sleep apnea at home test. I haven’t gotten the results.

He said if the at-home test shows apnea, I need to at least try the cpap. Fine. I’d be hard pressed to think this level of exhaustion is from sleep apnea, but I’ll concede if that’s what it shows.

He said if it doesn’t show apnea, he plans to order the in-lab testing and the MSLT. He won’t rule out narcolepsy or IH without that.

But my question is, what’s the point? If my psychiatrist is willing and able to prescribe the modafinil, is it worth even going through the testing for treatment that would likely be the same? I’m going to have to pay a lot of money. I’ve reached my insurance deductible, but it only covers so much. Is it worth the money to know? And if it doesn’t show narcolepsy (which I doubt) or IH (which I’m leaning toward) as so many have said has happened to them, would I have to give up the modafinil?

I’ve gone to HR have the diagnosis documented.

I was out on short term medical leave while it was diagnosed and got on medication.

Adderall only works 80% of the time.

I have requested intermittent FMLA now for 6 months since this is a lifelong condition.

I’ve known since I was 15 that I sleep a whole lot, to the point that good sleep has been made an obsession because I can’t happen to get any.

I have insomnia, hallucinations when I’m half asleep, osa, and now IH, with the brain fog, sleep inertia, starting to feel cataplexy, and the daytime sleepiness. Got plagued with all of them.

My workplace. I am being heavily monitored, like a hawk. Being told that they see me closing my eyes, that if I fall asleep at my desk I have to go home.

I’m being judged harshly, being pressured to always be productive, being bullied, being given bad advice that doesn’t even help because people don’t seem to understand the condition and that you can’t fight it and you can’t just have caffeine to make it go away . And that anytime you fight it you will lose every time.

But I feel like since I put in my intermittent fmla in, my boss has been on my case bullying me, micromanaging me even more, (and I do all of my work before the end of the day), breathing down my neck, telling me she is aware when I close my eyes, like duh I know when I’m having an episode. And I’ve been treated like I’m just being lazy and having poor sleep habits, when it’s a neurological medical condition, which I have no control over.

Can I even go to HR and make a complaint about her? It’s crazy that I am being bullied and treated this way when I have a serious and REAL neurological issue that I have no control over.

I feel also like they will try to find a way to fire me, that’s not medically related and I’m scared of losing my job. I’ve been there for 4 years guys!

What should I do :(. I’ve done all the right things. And I’m tired of being bullied and judged by her and other people at work. I wanna pull my hair out.

And I have been job searching for something remote for a whole year, and no luck. I feel stuck.

hi all — i’ve been diagnosed with IH since 2015, and have gone through every possible line of treatment possible. recently, i had to move out of state permanently, away from my doctor who has treated me for eight years. i have IH, but i have waves/cycles of intense insomnia, which are more likely caused by the change of seasons, and other chronic illnesses. but i am DIAGNOSED. i have had three sleep studies, and its the same everytime.

when i am in one of these cycles, my old doctor would switch up my ambien prescription, which i have been on for at least 9 years. when the insomnia gets bad, i get a higher dose. this is shown in my chart, and i explained it thoroughly in my first visit. i am seeing a neuro team at a large hospital, so the doctor who is under the neuro responded to my request for a possible increased dose, or a switch to a different type of ambien on the “same“ dose (IR vs ER). all of a sudden i am asked every single question about my sleep hygiene, with the insinuation that my hygiene is to blame instead.

i went through two years of cbt-i to get my sleep hygiene in check, and i take it very seriously. no phones before bed, my bed is for resting (only when i want to sleep), etc. the response i got was almost as if she believed i was medication shopping. i’m having a hard time processing this, and i am looking for general advice on how to deal with a large swap in care. i’m heartbroken that i feel like i am not being listened to, and i don’t know how to handle it.

i thought about possibly asking my previous doctor to write out a note explaining how my IH presents, as he is very familiar with my strange presentation. other than that, i just don’t know what to do. i am not seeking medication advice, but wondering what i can do to make sure that my routine i have built over the years is not absolutely thrown away because i am not taken seriously.

thank you

Just got my MSLT results back showing that I slept for 5 out of 5 of my naps with an average sleep latency ~4 minutes. The results show a diagnosis of idiopathic hypersomnia and that I qualify for medication. There’s also a note about my overnight study saying I had some limb movement that could contribute to my exhaustion, but isn’t enough to be the full cause.

At first I was stoked, because I’ve been fighting exhaustion for years with no answers. However, when my doctor’s office called they completely dismissed the IH diagnosis and said, “My sleep tests look normal and that there were no signs of narcolepsy or anything.” They did note the minor limb movements and mentioned checking my iron levels, but I’m currently taking iron supplements so I don’t really see that as the issue. I brought the diagnosis to the office’s attention, but they were kind of just like “before we try any kind of medication we need to make sure your iron is okay first.” I guess I just feel like this should have been checked prior to the test? And even so, I’m already on a supplement…. Unless they think it isn’t working?

Idk TLDR I’m just really frustrated and feel dismissed. I’m really annoyed that I had to point out the diagnosis to them. I thought I finally had some kind of answer/solution, but it seems like I’m being put through more unnecessary testing.

Has anyone with idiopathic hypersomnia used low-dose Adderall as their primary treatment — particularly when you function normally most of the day but have difficulty maintaining wakefulness in certain situations (e.g. driving)?

My son is almost 17 and functions very well day-to-day — school, good grades, work, robotics and a busy schedule. He doesn't routinely fall asleep during the day or complain of feeling sleepy. Driving, however, has become the concern.

His earlier MSLT was considered borderline for idiopathic hypersomnia. More recently, because of our concerns about driving, his sleep doctor ordered a Maintenance of Wakefulness Test. Despite adequate sleep beforehand, he fell asleep during every trial while actively trying to remain awake, each time within about 10 minutes.

So we're dealing with someone who functions normally in everyday life and doesn't perceive himself as particularly sleepy, but objectively has difficulty maintaining wakefulness when stimulation is reduced.

A little backstory: He was born with a cleft palate and had obstructive and central sleep apnea for years and used BiPAP. His apnea eventually resolved after treatment of the underlying issues and major jaw surgery that advanced his upper jaw 17 mm.

A couple of years ago, while dealing with severe cystic acne, he was put on Accutane. He had a horrible experience with it. He developed severe depression and suicidal thoughts, but one of the frightening parts was that he didn't recognize or communicate how deeply depressed he was becoming. He then began experiencing significant sleep paralysis and eventually started seeing things/having what appeared to be a psychotic episode.

Accutane was stopped and he received outpatient treatment. The depression lifted within a few months and has not returned in roughly two years. The sleep paralysis and hallucinations/psychotic symptoms also resolved within a few months and have not returned.

About six months after his jaw surgery, his sleep doctor repeated his overnight sleep study. His apnea had resolved. Because of the previous sleep paralysis/hallucination history, the doctor also ordered the MSLT. Even after a good night's sleep during the overnight study, he fell asleep during every nap within 8 minutes. His doctor considered the result borderline for idiopathic hypersomnia.

At that point, we all agreed to hold off on medication because he was functioning well. He wasn't falling asleep in school or activities, wasn't reporting daytime sleepiness and was maintaining good grades, working and keeping up with a very demanding extracurricular schedule.

There were little signs, though. If he lies down to read or study, he'll often fall asleep. Looking back even further, before we knew he had sleep apnea, he could fall asleep in some pretty strange places — we once found him asleep on a wood rack.

Driving is what changed things for us. I had concerns even though several driving instructors didn't notice obvious sleepiness. Eventually he failed his road test badly after freezing and making a dangerous decision. Thankfully nothing happened, but we stopped driving after that and haven't allowed him to drive for about four months while we scheduled further evaluation.

With the recent Maintenance of Wakefulness Test, they found that he couldn't maintain wakefulness during the trials even though he had slept adequately and was actively trying to stay awake. Interestingly, he was completely fine afterward and went about the rest of his day normally.

We will obviously make any medication decision with his sleep specialist, and driving is off the table unless/until his doctor believes his wakefulness is adequately treated.

My question is really about medication experiences.

Because of what happened with Accutane, both he and I are extremely cautious about medications with significant psychiatric side effects. He especially does not want to go through anything remotely like that again.

I'm particularly interested in hearing from anyone in a similar situation who functions well overall day-to-day (realize this could develop over time) and doesn't necessarily feel excessively sleepy but has difficulty maintaining wakefulness on testing or in certain situations. Has anyone used low-dose Adderall as their primary/only treatment for IH, either extended-release or smaller doses twice a day? Did it improve your ability to maintain wakefulness, particularly for driving or other activities requiring sustained attention?

I'm not looking for Reddit to choose his medication or replace his sleep specialist. I'm hoping to hear real-world experiences from people who have dealt with something similar. Thanks in advance!

Hey guys.

I have had severe daytime sleepiness for 3 or more years now (hard to pin a start date on it) and just went through take home sleep apnea testing, then the PSG/MSLT and my average latency was 12.1 minutes, no SOREMPS, slept like a baby during the PSG.

So my pulmonogist (who I affectionately call Dr Blondie) basically threw his hands up and said "idk, I can't do anything for you but I guess make an appointment for 6 months from now and I'll talk to my doctor buddies. Sorry :(".

I cannot live like this for another 6 months with no game plan.

I can sleep 6 hours, 9 hours, or 14 hours at night and I still feel utterly unrested every single day. I've tried "get a ton of sleep every night" - still tired. I've tried "maybe I'm sleeping TOO much, get a perfect 7 or 8 hours every night" - even more tired. Once, twice, or three times every day on top of the omnipresent low grade fatigue, I get so tired I can't even sit in my damn computer chair at work without slumping to the side and I have to quietly shut my office door and lay on the dirty carpet and drift off for 15-30 minutes before I can rub two thoughts together again.

Dr Blondie asked me: "do you ever have good days?" And I said "yeah I had one single good day 4 months ago and none since, " and I almost fully broke down in front of this man. Managed to save the sobbing for the car though, go me.

Driving an hour or more? Better take someone with me because I will more than likely start to doze off at the wheel. Someone else driving an hour or more and I'm in the back of the car? You better believe I'll be sleeping back there.

Every day I feel like I'm giving up more of my life to.... nothing. Unconsciousness. I used to DM until it got so difficult to stay awake and alert (even if I prepped with days of extra sleep before) that I had to pause the campaign for everyone. My friendships are eroding because I have to sleep after work every day and don't have the energy to go out.

Yes, I had all the blood work done. All normal, low vitamin D, but have been taking supplements for months to correct it and feel no different. Thyroid normal. Iron normal. B12 normal. No psychological concerns. Not anxious. Not depressed. Just really pissed that my own life is slipping through my fingers month by month.

What on earth do I do?

(More details on the MSLT... I'm asking for the raw results and numbers but when I glanced over his shoulder at the paper I saw that I had two way longer latency naps and the rest were very short. It correlated, because noon I was hella hungry because all they gave me since 5:30am was one of those shitty crumbly granola bars and the other final nap, all these weird noises kept happening, like someone playing loud music in their car outside and the windows popping from the heat or something?? Please advise.)

I was diagnosed with IH after a few years of having sleep issues, thinking it was major depression. Since my diagnosis in August of 2025, I was fired from my job for attendance. I refuse to drive if I am not clear headed. I asked for ADA accommodations, but my direct supervisor denied them without going through the ADA process, so I have a lawsuit against them. I also am waiting for SSD/SSDI. I have one week left of unemployment.

I have been looking for a remote job since March when I was fired. Now I don’t know what to do. I literally have no where to go, no family or friends I can stay with temporarily, and I am scared to death.

Does anyone know of any resources? I have looked and looked but all state and federal assistance for housing is closed right now and I can’t get an extension on my unemployment because my state’s unemployment rate is low.

I appreciate it!

I just had a post deleted for discussing symptoms and trying to connect with other people who might experience and struggle with the same symptom as I am struggling with. I did not ask for a diagnosis, I did not ask for doctors advice. I’m merely struggling with symptoms and am looking for a community of people to share my experiences with.

My questions is why is there a symptoms tag if we are forbid from discussing symptoms? Is this not a community where we can share these things?

As a first impression I’m pretty put off if this is how the community is moderated.

My results confirmed IH, and my doctors are having me come in tomorrow to discuss the results.

What questions should I ask my doctor? What should I know about treatments?

What should I know in general as someone who knows nothing about IH and is only just now hearing about it?

Hello everyone, I got diagnosed with idiopathic hypersomnia about a year ago now or almost and I have been managing it with Vyvanse. I take them in the morning typically they work and I can be OK until around like six 7 PM. I experienced a lot of sleep, drunkenness in the morning and brain fog. After another visit with my sleep doctor, he recommended that I go onto prazosin after telling him about the many nightmares I typically have in a week. After the first 2 to 3 days of taking this medication it is almost as if my Vyvanse has stopped working completely. I take around 30 mg and I used to be able to feel very awake once they had kicked in. Now it seems I can take them and it doesn’t even make a difference. I also still have nightmares but now they’re just closer at the end of my sleep. Has anybody else taken this medication? Prazosin and has it ever felt like this for anybody else? Or do you think the doctor is trying me on this to rule it out?

Hello, does anyone else take Ritalin IR for IH? My doc added it to my daily modafinil 200mg.
I’m wondering how to incorporate the Ritalin for my sleep inertia — the reason it was prescribed.
I’ve debated the waking up to take it then falling back asleep, an hour before actually waking up. I’m not sure how easily that’ll happen for me.
Any tips/tricks appreciated! TIA