r/idiopathichypersomnia

After sleeping 14 hours and really needing to wake up and do things, I decided I’d take 200mg Modafinil and 400mg of caffeine then allow myself to sleep 1 more hour to let it kick in. I was so full of hope that I’d wake up feeling “normal”. But I slept through my alarm and ended up asleep for another 6 hours. I feel like there’s genuinely nothing that will ever keep me awake and I worry I’ll never experience normal energy levels again. It just sucks so badly.

Anyways, I just felt like ranting to a group that may understand how I feel. Here’s to hoping I find some method to fight this and don’t end up sleeping my life away. 🤞🏼

In the US it seems like only psychiatrists and not sleep doctors… my sleep doctor only deals with my sleep apnea

hello, i am wondering what next steps i should take. i am diagnosed with obstructive sleep apnea and idiopathic hypersomnia/narcolepsy type 2. i have a very long commute and driving feels unsafe at times due to my sleep inertia and eds. i requested a flexible start and end time at work, which i felt was a “reasonable accommodation” because i am a social worker/case manager and we already have staggered start times. i went through the proper channels and involved hr, but unfortunately our hr is a third party. the request came to my boss and she denied it. she told me (verbally) that she can’t let me have a flexible start time because “everyone else would want that too and be late.” i feel that this isn’t a valid reason and that she is not understanding my sleep disorders/disabilities. i know that osa is not technically a disability, nor is idiopathic hypersomnia, but narcolepsy is. i honestly feel very upset about this and i don’t know what to do. i don’t want to be difficult, but just forcing myself to function daily is difficult.

So I finally got my prescription for xywave. Equally terrified and happy about this. I vape weed to sleep and also just for fun during the day if I feel like it. Obviously I won’t mix these two meds. I won’t take it at night. My question is if it’s okay to vape during the day while on this medication. It really helps with my anxiety and I’d be pretty sad if I can’t vape anymore but if I have to stop then I will. I’m planning on taking this medication at 12 am. When should I hold off the weed if I can still take it?

So obviously we all lack energy during the day! Has anyone found any combination of vitamins or magical gummies that help even a little bit!!!!!

First she was weird abt my period of alcohol abuse which was years ago and basically had to get strong armed by a doctor to give it to me. And then for all her concern she gave me contradicting titration schedules, leading me to update her on my sleep and what results I was receiving and having to ask her what to do literally every night. She sent me a titration schedule with the values empty and keeps telling me to refer to it when I ask her for clarification and that she cant do anything until my next appointment because this conversation is too serious for mychart. I'm afraid she's trying to frame me for drug seeking behaviors but I haven't even asked to increase the dose, just telling her where I'm at and asking what to do. She also told me she wouldn't prescribe my meds to me unless my parents supervised after I told them my parents could not be involved bc of their controlling and aggressive nature she told me my parents knew best. What do I do? This medication has really changed my life and honestly I think if they could titrate it slightly more or give me tips on how to sleep longer it would help but she's being really weird about it.

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.

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.

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!

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?