r/idiopathichypersomnia

Today l (27, M) got diagnosed with IH.

I thought I would feel some sort of relief to find a name for my condition, yet I can't help but be sceptical.

I've always been extremely tired and sleepy, and what brought me to a sleep expert is risking my life every time I drive due to uncontrollable sleep attacks.

During my first appointment, the doctor collected my history and did an EEG, where I slept most of the time without even realizing it.

He immediately suspected IH over narcolepsy because I don't have cataplexy nor sleep paralysis. Still, he mentioned multiple times that I also don't have hallucinations while I told him that I do hear voices and have vivid dreams when I doze off.

The following appointment I took an MSLT. That day I was extremely anxious and I felt observed, hence I could not fall asleep, at least not as fast as I normally do. Every time I realized I was dozing off, I'd have an adrenaline rush and wake up.

Despite this, I still managed to nap all 5 times but I guess for very short period.

Today I got the results. I had an MSL of 9'40" and no REM. Despite the pretty "long" MSL, the doctor confirmed I have IH. However, there are a few things that prevent me from trusting the diagnosis.

First of all, I don't fully identify with the IH general experience. I rarely sleep for long periods of time. I wish I did, but I have pretty light sleep and wake up super easily, sometimes multiple times per night. Occasionally I even wake up and fail to fall asleep again, but that's because I've anxiety and probably ADHD and my thoughts can be overwhelming.

Secondly, I did no other test besides the MSLT; no overnight study or stuff like that, and I can't help but think that the anxiety I felt that day might have compromised the results.

I tried to bring my doubts up to the doctor but I perceived he got slightly irritated as if I was questioning his diagnosis, so I didn't push it further.

I know this doctor has way more knowledge and experience than me, so I should trust him, and I do. However I'm also scared that the diagnosis was rushed. Part of me is convinced I have type 2 narcolepsy and I just can't change my mind.

Rationally, I also think I might want a narcolepsy diagnosis because people seem to take that more seriously than hypersomnia and I desperately want my colleagues and family to realize that I'm someone who's trying but struggling, rather than just a lazy sleepyhead that keeps messing up (not that I belittle hypersomnia, that's just what I've always been called by my parents).

So now I don't know what to do. Part of me wants to accept the diagnosis and move on, but part of me wants to keep digging, contact other doctors and do more tests.

For now I think I'll sleep on it (hehe) and decide what to do sometime in the foreseeable future.

In the meantime, I'd really love to know what you think of this situation and appreciate any advice you'd like to share.

I’m currently on vacation in Europe with my family and having an incredible time. Due to the heat, we’ve been taking naps in the afternoon and then going for sightseeing followed by a very late dinner. Y’all know that late dinner (and potentially alcohol) means I’m having to wait at least 2 hours to take my XyWav. Because of that, I hadn’t taken it for a few nights and the poor sleep was definitely catching up with me.

Last night I took my usual 3.75 dose of XyWav for the first time on this vacation. I woke up a few hours in and felt like I urgently needed to go to the bathroom. At home I can usually stumble my way there and lean on furniture to steady myself. If I know I can’t make it, I’ll wake my husband up and have him guide/carry me to the bathroom and back.

Well, in the hotel room I must have gotten confused because I headed in the opposite direction of the bathroom and walked smack into a wall. Like, no hands in front of me to cushion the blow, and immediately blood starts gushing out of my nose. I fall over onto my husband’s side of the bed and start apologizing/cackling/slurring “I didn’t mean to do that” while also stumbling a bit to get towards the bathroom. He somehow guides me to the toilet, a stream of blood showing the path we took. I’m sitting, doing my business, and he’s using every towel in the room to try to contain the massacre.

My kid wakes up, looks at the scene, and says “I’m going back to bed” while pulling on her sleep mask and flipping over.

After an hour we give up for the night and I fall asleep with a towel over my pillow, just in case.

We look around the next morning in the daylight, seeing the blood smears on the walls, the dripping trail hitting furniture and clothes. It was a total mess. And soon after housekeeping knocked on the door. I asked them to come back and they said they could only allow 5 minutes… so I let them in and then skedaddled. I went to the front desk and explained what happened and left them a generous tip.

It was such a surreal experience and I only have vague memories of everything happening, but I definitely feel the broken nose and 2 black eyes in full force today.

I'm going to be traveling next week. Has anyone had problems getting Xywav through security? Thanks!

Hey. 18M.

For starters, I don’t have a diagnosis for IH, nor am I self-diagnosing.

I just happened to find this subreddit when I was searching for others with my symptoms and I assume you guys might be able to help.

My symptoms

- I feel very tired during the day despite sleeping for 11h and taking 70mg of Vyvanse (prescribed). I don’t try to sleep for 11h, I just constantly oversleep.

My sleep never feels that refreshing either.

- My mind feels really obstructed and I have brain fog. I can never figure out if there’s too many thoughts or if there’s just nothing going on in my head.

- I don’t feel interested in doing my hobbies, or working on my projects. I don’t really enjoy or bother listening to music or hanging out with friends anymore either.

- I constantly feel flat and pretty apathetic.

Medication I take

- Vyvanse 70mg
- Vortioxetine 20mg

Does anyone have any clue what might be going on?

This bothers me because I end up doing very little. I am doing nowhere near as much as I wish I was doing because I feel so tired and uninterested in things.

Of course I do the tasks that have to be done in my personal life, but I have almost no pull to do anything beyond that. If I had nothing to do, I’d most likely just lay down or sleep.

Any advice is appreciated!

I'm so frustrated because I recently had a repeat sleep study which showed I still have very mild sleep apnea. Now, my insurance is refusing to cover my modafinil because they are attributing my sleepiness to the apnea. I hate CPAPs, so I really really don't want to have to use one again. I used one about 7 years ago before I was diagnosed with IH, but it didn't improve my sleep and was so uncomfortable (even once I 'got used to it'). I had to do the MSLT and then I was diagnosed with IH and started modafinil. Now all these years later, they are making me to do the same thing again!

My sleep apnea isn't as bad as it was (I had a adenotonsilectomy which cleared my airway) but of course the insurance will use that as an excuse even though me and my doctor know that my EDS goes far beyond anything brought on by mild sleep apnea. At least I can use GoodRx coupons to get it without insurance for not too bad of a price.

Hi everyone. I take Adderall. Due the red tape involved in getting a controlled prescription renewed, I sometimes take it a few hours later than usual (after I pick up the new bottle). You would think the meds would just kick in later in the day, but no. If I take it at like 11 AM instead of 8 AM, I’m almost as sleepy as if I didn’t take it at all. It is so frustrating. 😞 🤬 Does this happen to anyone else? WHY does it happen?

Hello! I’ve been diagnosed with idiopathic hypersomnia for over a year now and I’ve tried multiple medications. Previously, I was on Adderall IR and I swear every time I took it, I would have just the most god awful anxiety. I am diagnosed with depression and anxiety and take medications for those (Effexor, Buspar, Rexulti, and Propranolol). After a recent (last week) appointment with my PCP, he switched me to 150mg of Armodafinil and 20mg of Vyvanse… and I still have anxiety. Do I just need to hold on and let my body get used to it or do I need to bring it up to my doctor?

On the off hand, I am also on some diet medication (Foundayo and Diethylpropion) that I take daily. Could those also be affecting my anxiety?

Thank you and have a great day!!

Been in this sub a long time and wanted to ask something I've been thinking on.

I've spent years trying to make normal productivity systems work with IH, and I think I've finally accepted that the problem isn't me being bad at planning - it's that basically every system out there assumes consistent energy. Time-blocking, habit streaks, daily to-do lists - they're all built for people who can reliably show up the same way every day.

So I'm curious: has anyone actually found a way of planning/organising life that works *with* unpredictable energy rather than against it? Not looking for generic "be kind to yourself" advice - more interested in actual systems or approaches, even rough ones, that have held up over time.

Might turn this into something more concrete eventually, but right now just want to understand what's actually worked (or hasn't) for other people here.

I take 250 mg armodafinil and the taste literally makes it nigh impossible to successfully take ir, because I can't force myself to swallow it due to just the anticipation of the taste once it touches my tongue. And then, even if I brush my tongue, the taste lingers forever. It's actively making my pill dysphagia worse just for how terrible it tastes. But it's literally essential to me with how bad my IH is.

I read that you can buy gel pill capsules to put on the armodafinil to prevent you from tasting ir, and I really want to try that. But I can't figure out what size pill capsules I need because the stupid sizes are stuff like 000 and I don't know what the dimensions of a 000 pill capsule are. So like, anyone, does anyone know what size pill capsule I can put the armodafinil in, or another method of taking it without tasting it?

I’ve had my sleep condition for about 25 years but was just diagnosed with idiopathic hypersomnia this week! I thought for all these years it was narcolepsy, but my MSLT showed otherwise. My question is, do some of you have restorative naps? I’ve been a little confused because I can have a sleep attack, nap for 15 minutes, and feel refreshed after. but everything I’ve read says naps are not restorative with IH. I just wanna hear some personal experiences. Thanks!

Hey y’all… 1.) HOW ARE YOU ALL DOING?!!!? 🙃😊 🥱B.) Where is everyone from??? I was recently diagnosed and I’m super lost and feeling alone, I’m just wondering who is the physical closest person with Idiopathic Hypersomnia near me, I’m in Austin, Tx, USA, but those from Texas know that any major city is “close by.” Lol But also! I’m very interested to see how far across the world this condition reaches.
💜😴

4-ish years ago, I got my sleep study and MSLT done. I was already prescribed Vyvanse for ADHD, but I didn’t want to increase my dose because I have an arrhythmia and tachycardia and my cardiologist was already a bit nervous about being on a stimulant in the first place. My sleep doctor told me he was unsure how to interpret my study, but based off the results, he knew I definitely had excessive daytime sleepiness. He said that since insurance was weird about retesting and since treatments for different sleep disorders were similar, he recommended increasing my Vyvanse dose. I told him my concerns about my heart, so he recommended Sunosi and sent me on my way.

In his defense, I just stopped following up with him because the Sunosi didn’t help and I tried to “tough it out” since I assumed from our conversation this was the best they could do.

Fast forward to now, the sleepiness got worse, increasing Vyvanse didn’t help, and my bloodwork for any other issues came back normal, so my PCP recommended I go back to my sleep doctor because she reviewed my MSLT and said that the suspected diagnosis on there was Narcolepsy or IH.

I went back to my him and sure as sh*t, he said yes, he thought I had IH or Narcolepsy but was unsure which (I have since confirmed this by requesting my medical records and reviewing the interpretation of the MSLT). I asked why he didn’t follow up for additional testing and just “diagnosed” the symptom of excessive daytime sleepiness, and he said that since I did shift work, he didn’t want a diagnosis to possibly impact my career. I asked him what he was leaning towards and he said IH since my 3+ hour naps aren’t refreshing. He said that additional drugs have been approved to treat IH since I last saw him, and that may help, so he prescribed me Modafinil. He said with my job and vivid dreaming/acting out dreams, he didn’t want to prescribe things like Xywav or Xyrem.

I will admit the Modafinil has helped, but my pharmacist told me it was unusual to be prescribed both vyvanse and modafinil and had gone back and forth with my doctor before filling it to make sure he was aware I was already on a stimulant (I take 40 mg of Vyvanse in the morning and 100 mg of Modafinil in the afternoon). I think there’s room for improvement (maybe increasing the Modafinil dose and decreasing the vyvanse, since Modafinil makes me feel rested and vyvanse makes me feel tired and wired), but at my checkup, the doctor said to just give it another 3 months and then we’ll see what to do next.

At this point, my therapist and family think this is odd and that I should get a second opinion. My boyfriend said he thinks I would have needed an IH/narcolepsy diagnosis in the first place for insurance to even approve covering Sunosi, so he finds it concerning my doctor never officially told me WHAT I had and just wrote the script and sent me on my way. However, having read some of the experiences of everyone else on here/narcolepsy page, I’m wondering if this is just “normal” for sleep doctors and I should just stick with him? What are your thoughts?

hey, 26 male, i’m just wondering if any guys who’s are taking xyrem or have in the past noticed if there penis grew in size (inches and girth)? i can’t find anything with taking xyrem specifically and having this happen but i can find other posts of this happening in general in your 20’s so im curious what everyone thinks?

I have been titrating up on Xywav and have noticed basically 0 improvements. Not to mention, I wake up feeling AWFUL

Howeeever, I also tend to fight the medicine as I fall asleep. It takes 30 min to kick in, so I scroll instagram while I wait. I resist the medicine until it fully knocks me out. I’m stubborn and stupid LOL

A couple nights ago I made it a point to not touch my phone at all before sleeping and shut my eyes immediately after taking my dose.

Oh my god, I’ve been waking up feeling like a new person. I’m so happy I realized what I was doing wrong and am now fixing!!

Hi! I'm having my MSLT next week and am more of someone who can sleep 12+ hours in one period if permitted and spend the rest of the day VERY sleepy/tired. I also have been officially diagnosed with a delayed phase sleep cycle disorder, which complicates things and why I've been given a strict wake up time during my cumulative 6 weeks of actigraphy. I'm worried I won't fall into a deep enough sleep for it to count towards a diagnosis via MSLT. My question is that if I "fail" the MSLT, is there still a possibility of being diagnosed with IH? I've inquired before about the 24 hour polysomnography instead which could allow me to sleep for the 12+ hours, but was told that there are no facilities nearby that perform them.

I know he means well, but I'm upset about it. I have to taper down from 500 mg of caffeine per day within a month before pursuing further treatment. He wants to see if my sleep will improve, but I know it won't. I've been falling asleep anywhere and everywhere I can since I was a little kid.

Lord help me, y'all. I'm scared to make this change. I already only have enough time in the day to work, eat, and sleep as much as my body demands. And I have to move houses next month. FML.

So I just got the results back for my MSLT and night time study. I was so sure I had N2 but there was no REM sleep in my naps. My latency was about 3.7 minutes so idiopathic hypersomnia is likely. One thing that was odd was during my night time study was that my REM was really delayed it took about 4 hours for me to reach REM sleep. Im still waiting on my follow up so me and my doc can go over everything together. I’m hoping we can also address my delayed REM I’m have a suspicion if my REM wasn’t so delayed I might’ve gone into REM during my naps.

Ever since I started Xywav about 5 months ago, I've been having issues with my teeth, at first I thought it was because I would sometimes get sick from the medication. Than I thought it was in my head! Than I would wake up with sore teeth, than small things like my back tooth was chipped BUT this morning I woke up with a loose tooth!

I looked it up and saw one post on a /narcolepsy subreddit about this happening to others, I'm freaking out I'm mid 30s and it's my bottom tooth. I think it might be from grinding my teeth while sleeping but WTH I'm freaking out!! I have healthy teeth, get my cleaning done every 6 months, I have good oral hygiene.

I'm worried about the cost but mostly the actual loss of the tooth!! It's 6 am, I woke my husband up and he confirmed it is loose and I'll be calling the dentist office as soon as they open?

Has anyone had issues like these so I can let my doctor/dentist know?! What did you do?

And I hate it because Xywav is the only medication that has helped!!

I have GERD, and I suspect Xywav's triggering it. Though never dry heaving or coughing furiously, my once near-subsided, mild/abrupt coughing returned since starting Xywav, and my right ear has since started filling with a plugging sensation often. If Xywav's sucralose, as one commenter I read online suggested, could arouse GERD, how might Xyrem fare? Can anyone here with GERD, and who's tried both, speak on this? Thank you.

(also, famotidine just doesn't work for me)

25y old F, AuDHD

My whole life sleep has been an absolutely atrocious experience, and especially in the last 2-3 years or so it’s become abysmal. It got to the point where it was catastrophically affecting my work and causing me to fall asleep behind the wheel, and so I got a sleep study with an MSLT done. The result was idiopathic hypersomnia, with my sleep latency at 5 and 0 SOREM episodes. I honestly believe the latency should have been even lower, I was so anxious and uncomfortable during the test I didn’t behave like I normally did. Regardless, the diagnosis was IH, and I do show classic signs, but I also feel like some of my symptoms are a bit off?

For example, no amount of sleep is refreshing, I always wake up super groggy and it takes me minimum an hour to get out of bed, which is normal for IH. However, you usually hear people talking about how they sleep abnormal amounts of time, like over 10-12 hours. I’ve definitely slept those amounts before (and awakened feeling like I slept maybe 3 minutes), but I usually wake up at around 7-8 hours naturally and feel the exact same. I also usually wake up nauseas, and it worsens with the less sleep I get.

I can fall asleep within seconds, and I HAVE to take a nap during my lunch break at work, but I will also begin to dream as soon as I’m drifting off, which I’ve heard is more consistent with narcolepsy. If I take longer naps at home (usually happens because I had the gall to sit on the couch and suddenly I’m waking up 3 hours later) sometimes I’ll get sleep paralysis with auditory hallucinations and a frantically beating heart.

Similarly, my dreams are baffling. Every night without fail I live three separate lifetimes in some chaotic universe with a fever dream plot, and these dreams are usually marked with intense violence or a running theme being chased/hunted by some entity trying to kill me. I am by no means a person with any trauma that would warrant the kind of extreme gore or horror movie content that consumes my dreams. It’s kind of driving me insane and was also a big part of why I got the sleep study done in the first place.

I also wake up briefly nearly every night because I’m tensing so hard my legs cramp, and clenching and grinding my teeth so often that the dentist said I have alarmingly smooth teeth.

Another odd detail is that my energy fluctuates randomly. I’ll wake up feeling like my body is about to decompose, then cycle during the day through baseline exhaustion, bearable tiredness, sometimes random quick peaks of energy to being so tired I lose comprehension of speech. Then at around 7pm, my energy seems to regulate more and I usually feel the most energy during the day after this time, and because of that I get most of my things done late at night. I have no issue going to bed and falling asleep, though.

I think I also experience some form of cataplexy? When I get really stressed out or upset I literally start to fall asleep where I stand and it’s nearly uncontrollable, which is such a pain because instead of doing something proactive I’ll be nearly non-functional. When I was in college, there were some classes where I would be taking notes and falling asleep while writing - it felt like my hand was super weak and I would sometimes even drop my pen or pencil, and stimulants were not doing a great job of keeping me awake. When I wake up from naps I feel especially weak in my hands for a good couple minutes.

I’ve tried Xywav (worked but made me so anxious I nearly died), and now I’m on modafinil (barely notice a difference on it and still pass out without trying) waiting for Wakix to be approved.

Getting the sleep study done and having a diagnosis made me feel sane and was such a relief, but at the same time I’m not sure if it’s the right one. I know symptoms for IH and narcolepsy overlap, but I’ve scoured Reddit for others with my presentation and I really can’t find any. If anyone has any insight or has similar experiences I would love to hear it.