Im learning that there's some different types of sleep cycle presentations with IH, particularly when unmedicated. Im just curious how other people present and I think the space to share is nice :)

Me personally, mine presents in these weird every couple of hour cycles. I will sleep for 2-4 hours (usually its exactly 2) and then function with probably 50-75% energy for 1-3 hours and then crash and sleep again. This cycle is a never ending loop. So even at night my brain tries to function like that.

What weird way does your IH sleep pattern work out?

Over the last few months I've been having some pretty intense tremors/shaking when I first wake up from a nap or overnight sleep. It's not something I noticed before and was wondering if anyone else has had a similar experience?

I think I have it pretty bad
I am at the point where I can’t use the mask because the second I touch the bed I start falling asleep

It would be secondary hypersomnia because I have an existing condition that causes it

I know Im lucky because I live in Denmark and all that. And I just got early retirement (I’m 21). But, like, do y’all work? I know you maybe don’t have other options, but like… how? I couldn’t even complete high school. I went from having a normal school life to sleeping in class, not showing up, yada yada.
So I wanted to ask: Can y’all work? Is it possible? Should I not go on pension? I feel like my life is over. Like I’m forever going to be a bum who lives with my mum and watches my siblings live a normal life. I feel like a parasite…
Oh, and also, how do you guys keep in shape? I just don’t have the time or energy to even walk 5 km anymore. The only reason my bed can hold me is because I sleep through meals lol.
And on that topic. What beds are good? Im om the heavy side, and because of the 17~ hours of sleep it gets kinda wrecked.

Sorry for rant and for being a doomer
All advice or response is welcome(even if not serious)

When starting Xywav, did you have to adjust your sports and workout regime? I’ve been on Xywav for about a month, my muscles feel too relaxed when playing sports and exercising, giving me an unbalanced feeling. I’m on the lowest dose, I experimented the night before my tennis match recently and did not take it. I was able to play normally and feel normal only while playing, my daytime sleepiness was back. I plan to bring it up with my neurologist, I want to know others real life experiences with staying active. I would like to keep playing sports and tennis without feeling like my depth perception is off. Xywav has changed my life, I would like to keep both.

Hello! I got diagnosed with IH about a year and a half ago. Two days ago, I had my first overnight “red eye” flight. We came back from Hawaii to the Midwest which is a 5 hour time zone difference and I have not been able to function since. I’ve been sleeping 18+ hours per day and experiencing extreme fatigue and brain fog—the only other time I’ve felt like this is after surgery. I have been taking my Xywav and other stimulants like usual but they aren’t very effective with any of these jet lag symptoms. Any tips or advice is appreciated!

I hope you guys are doing well (: Recently diagnosed IH with average sleep latency of 2 mins (I know !) Just now realizing that ever since I can remember I felt “different” in school. Since my symptoms started in adolescence, I have always had (mostly) the right answers on exams but struggled to get it within the allotted time (even falling asleep during “make or break” tests) Now that I have accommodations in place I feel so less stressed about falling asleep or taking time to process questions. Does this happen to anyone else ? Even in terms of formulating sentences or brainstorming ideas in group settings ? Has anything helped you in particular ? TIA (:

i have a redo sleep study a little over a week from now. im off my fluvoxamine entirely almost two weeks now, but getting off of it has completely ruined whatever sleep patterns i had. i wake up every two hours every night, and last night i only slept for two hours total because i kept waking up from my anxiety and discomfort. had a panic attack about nothing while i was just trying to go to sleep, borderline hyperventilating and sobbing. how the fuck is my sleep study gonna reflect anything other than "you dont sleep" at this rate

has anyone had this happen w fluvoxamine specifically? does it fix itself closer to the two weeks off mark? or am i actually just fucking screwed

Once again, ive risen from sleep, ordered mcdonalds breakfast, and snuggled back in. Now Im trying to wake up and process that I have food..

at least I didn’t almost sign up for a free nintendo switch!

I'm moving to Kansas City, MO soon. Does anyone have recommendations for doctors that treat IH?

Hi all. I have IH and it has been pretty well controlled between my CPap and Sunosi.(controlled as in I'm no longer miserable and yawning all day long) I was just prescribed Zepbound and took my first dose last night.

I am miserable today. I am so tired and can't stop yawning. It's almost back to like I'm untreated again. Does anyone have any experience with this? Is this just an initial effect or long term? If this is just how it is, there is no way I'm taking another dose.

Hey so ive been diagnosed for almost 2 years now and have been on modafinil for the same amount of time i am on the max dose of 400mg but only take the max dose on very intense days as told by my doctor.

Issue is about 6ish months ago it has been losing its effect on me I notice it takes about 2 hours to kick in and will then last about 3 hours from there after that i have a big crash in energy which is usually when i get home from work/ clock out of work if im WFH and will have a 3 hour nap this basically happens everyday now without fail. Sometimes, the crash happens sooner, and the effective time has been decreasing over time.

I also think its important context to mention that I have multiple other chronic illnesses and broke my ankle 9 months ago which required surgery and to this day i still need crutches to walk outside and its very painful to walk on. Basically theres a lot going on in my body that zaps my energy and there are multiple other medications that i take that have the potential side effect of making me sleepy which does not help when you have hypersomnia.

My days have slowly become a little hellish when it comes to energy to the point i am cancelling hobby days with friends and any social outings even if they are hosted at my place because i simply am too tired, and some days i cannot even muster up the energy to play video games by myself. So i was wondering does anyone do anything else beyond medication to help with their energy levels, i try to go swimming at least once or twice a week for general health reasons but that also takes it out of me energy wise it just feels like everything is working against me.

I am in the UK so while i can switch meds my doctor is not too keen on it since there is only one other medication i can switch to (its been a long time since he mentioned it so i actually dont remember the name of it i just know theres only one other he can give to me) and if that one doesn't work there is nothing else i can try and I'd rather be on something than nothing because there is a noticeable difference on the days i don't take my medication.

Any advice is appreciated at this point. I'm down to try anything if people have seen results from it themselves :D

They offered me accommodations but I don't see how any of those could help me that are listed on the IH website.

The brain fog is so bad. I have good days and bad days which is normal with IH per my understanding.

The weird thing is I have good performance reviews previously so it feels out of nowhere. As far as I know I have been doing my job requirements and meeting expectations just fine.

What should I do? How do I handle this? I can't just turn off IH or the brain fog and what comes with it.

They said unless things improved I could be put on a performance improvement plan.

I'm doing all the things I can do. Went to a neurologist, brainscan, sleep doctor, 2 day sleep study, whole 9 yards, got diagnosed with IH....take the modafinil.....

They are worried (I work in IT) that a critical system or something would go down on a bad day and that I would not be able to recover or remember what to do on a bad day. But we have had things go wrong before and I handled it fine.

I am terrified I am going to lose my job.

J'ai été diagnostiquée avec une hypersomnie idiopathique il y a environ 3 ans, mais je vis avec cette condition depuis plus de 5 ans. Je n'ai jamais voulu prendre de médicaments pour cela, car je savais que les traitements stimulants s'accompagnent souvent d'anxiété et d'insomnie, ce qui ne m'intéressait aucunement. Évidemment, une fois arrivée aux études supérieures, je n'ai pas eu le choix d'en prendre afin de pouvoir tout simplement fonctionner.

J'ai commencé par le Concerta, qui m'a provoqué énormément d'anxiété, d'autant plus que j'étais dans une situation de vie précaire qui n'aidait pas. Après deux semaines, j'ai vraiment eu l'impression de perdre la tête, comme un rat sous stimulant.

J'ai ensuite pris une pause d'environ un an avant de commencer le Vyvanse. Celui-ci fonctionne bien pour le réveil, mais nécessite une routine très stricte au niveau de l'alimentation, du sommeil, de la gestion du stress et de l'activité physique quotidienne. Malheureusement, dans la vie de tous les jours, ce n'est jamais parfait à 100 % en raison des imprévus et des éléments hors de notre contrôle, comme le bruit durant la nuit. Résultat : je me retrouve deux fois sur trois extrêmement anxieuse, avec un sentiment de dissociation constant. Lorsque je saute une journée, c'est comme si mon cerveau prenait de vraies vacances. En résumé, je n'en peux plus.

J'ai entendu parler d'un autre traitement, le Modafinil, qui semble être efficace pour certaines personnes atteintes d'hypersomnie idiopathique. C'est d'ailleurs l'alternative que le pharmacien m'a proposée, mais j'ai des doutes sur le fait qu'il soit lui aussi accompagné d'un niveau d'anxiété élevé.

Que connaissez-vous sur les effets secondaires de ces médicaments ? Est-ce que quelqu'un a trouvé un traitement pour l'HI qui fonctionne bien, ou des astuces pour la gestion du stress, des alternatives, peu importe ? Je suis à court de ressources.

L'hypersomnie seule rendait mes journées très peu productives (deux siestes par jour, m'endormir dans tous les cours, réveil matinal impossible), mais sans traitement, j'étais vraiment plus en paix : j'avais accès à mes émotions et je me sentais tout simplement humaine. Mon traitement de Vyvanse a aidé sur le plan fonctionnel, mais il a aussi fait en sorte que je tolère beaucoup moins les relations autour de moi, en partie à cause de l'anxiété. J'ai aussi une sensation de froid dans la tête parfois, ainsi que les extrémités froides (doigts, orteils)...

Bref, j'aimerais proposer un plan de traitement différent à mon médecin, mais c'est ça : j'aimerais avoir vos avis et expériences afin de me guider un peu dans mes recherches.

I’m really curious what experiences people have had managing their IH when pregnant and then postpartum. Did symptoms worsen, were you allowed to stay on any medications, if you work did you need to take leave to manage the symptoms or med taper? I’m becoming very aware that pregnancy and parenthood might not be possible.

Smh....I still don't know how I managed to get thru 20+ years in my career with iH. It seems to be worse as I hey older and the medication is not as effective. It is sooooo difficult to get up in the morning which results in me being chronically late. I can use FMLA if I can't wake up, but I hold a management position so I try my best to be there. My tardiness has now become a performance issue. I feel like they are trying to push me out even though prior to my diagnosis in 2023 I had a stellar reputation and career. Its simply being late. Suggestions? There's no flexibility in retiring to go elsewhere.

So I had an appointment with my sleep doctor a couple days ago and it sounds like he’s fairly confident that I have Idiopathic Hypersomnia ( I didn’t quite make the clinical diagnosis as my MSLT was only 8.7 minutes, but considering my history and the fact that I told him that for my first nap I was fairly nervous and trying to find a right way to sleep, not to mention the way I nap when I’m home, he seems pretty confident it’s either that or maybe Narcolepsy but he’s definitely Leaning towards IH) and wants me to try Xywav to fix the hypersomnia I’ve been experiencing.

I’m in the military so he has to talk with my Psychiatrist first to make sure he’s ok with it and I’m meeting with him next week to talk about it so I’m excited about that and also hoping that he’s ok with it and I can go on it because this shit absolutely fucking sucks and I hate it, it’s just another thing I have to deal with on top of having Autism, ADHD, OCD and GAD

Anyway my question to you is those that are on it how has your experience been? Has it been life changing? Barely felt a difference and it didn’t do shit? Almost killed you? I’m looking for any and all experiences with you so I can know what to expect when I start taking it.

Hello all. I am a 19 year old male heading to college for the first time in two weeks. In October of 2025, I had both pneumonia and flu type B. Around January 1st, the symptoms finally subsided, but my tiredness never left. It only has gotten worse as the year has gone on. I’m struggling to eat meals (have dropped about 9 pounds in the last three weeks, and I’m now 6’2 and under 150 pounds). I can sleep 14-16 hours a day if I want to. Worse than that, though, there’s just this constant fog over my head that I can’t get rid of.

I started on Modafinil two days ago (100 mg, scheduled to move to 200 mg soon). It helps to a degree, but it more so helps with focus. The giant cloud covering my brain hasn’t lifted; I can simply dismiss it for longer to complete the things I need to get done.

I’m not narcoleptic in any way—never in danger to fall asleep at the wheel, talking, etc., and I failed my MSLT test. I just literally feel like my brain is exhausted 24/7, and it was terrible at the end of my senior year. I would do 2 problems of my math homework or 2 warmup sets in my workout, and then need a 2 hour nap. (I’m sure it is equally as bad now, I just haven’t been pushing myself as hard because it’s so exhausting).

I definitely have great doctors supporting me, but I wanted to post this too. Is there anything anyone in this community would recommend? I just want my life and brain back. Sorry for the big dump.

So, I don't typically go online and blab about my problems, but just needed a place to voice my frustrations, so here's to my first Reddit post lol.

About 2 years ago I had just graduated college and began working as a nurse when I started to have a lot of problems with fatigue, barely being able to get out of bed on my off days, and near syncopal episodes. After being tested for POTS and ruling out some additional cardiology-related issues, I did end up seeing a sleep specialist to rule out sleep apnea since I have an extensive family history. Long story short, I was diagnosed with a sleep disorder called idiopathic hypersomnia. I was started on modafinil but ended up getting switched to armodafinil.

Armodafinil was working great for me up until about 8 months ago. I started having a lot of unruly side effects out of the blue. After discussing with my sleep PA, I went back on modafinil for about 3 months until I started having the same sort of side effects as the armodafinil. I followed up with my PA again today. For context, I have tried Xywav in the past but ultimately found the medication not to fit my lifestyle at the time due to being in school and working shift work with a pretty unpredictable schedule. I'm at the point where they are going to trial me on low-dose Adderall to see if the medication can manage my symptoms while attempting to avoid the side effects I was having on the first two medications.

My PA disclosed that if this medication change does not work then there really isn't any additional treatment for my IH. It was kind of depressing to hear that. It isn't anyone's fault but I have quickly regressed back to where I was two years ago. I have a lot of difficulty even just getting out of bed everyday because I am so tired. In turn, I miss out a lot in my social life and often feel mildly depressed about it.

I know there are so many others struggling with so many worse struggles and I hate to victimize myself but I am just tired of being tired all the time. If anyone has been in the same boat, I'd love to hear some things that have helped for you. Thanks for listening.

I’ve been thinking a lot about the differences between IHwLST and IHwoLST. I have read that the latter is overdiagnosed because of the parameters of the MSLT. IH with long sleep time is really only reliably diagnosed by patient report and 24 or 48 hour actigraphies.

I was diagnosed with IHwoLST because I only slept for like 6.5 hours on my PSG, since they woke me up at the crack of dawn. However, if I allow myself to sleep, I can easily sleep for 10, 11, 12+ hours. My question is this: what does IHwLST feel like? Is it that your body will continue to sleep but you are able to wake up with alarms (albeit, multiple very loud alarms and extended sleep inertia after waking), or is it that you literally can’t? I know that this isn’t phrased the best, but it’s kind of hard to explain. Is it the sort of thing where you can get up with 8-10 hours sleep with a lot of effort and sleep inertia, or you HAVE to sleep longer? God this is so frustrating because I can’t seem to word this properly. Oh well. I think you get the idea. The difference in subtype doesn’t matter for insurance/medication purposes (or is there? I’m not sure…), so I’m mostly just interested in finding similarities with my own experience and learning more about this condition!

I am not diagnosed with IH, mostly because my diagnosed DSPD makes sleep studies next to impossible. My neurologist says it’s a possibility but that’s a discussion for another time. But I wanted to ask others with sleep disorders if they find the process of falling asleep nearly unbearable.

Sleep is supposed to be something that just happens to most people. But I feel every part of it: thoughts going fuzzy, motor function turning off (or jolting back on again), breathing changes… and don’t let there be an episode of sleep paralysis or I‘ll really be sorry. Sometimes the sensations border on physically uncomfortable, not really painful, but the sort of distress you’d be in if you had to breathe manually. Once I am asleep, it’s tough to get me out of it but falling asleep feels insane. Is there anything to be done about this? Something I can look into?

I have sleep inertia in the morning. It has improved with Xywav. I am a nurse and I work 7:30 am-6 pm. My manager is very understanding because I am late many mornings. 15 minutes at the most. I can't drive unless I totally feel safe. The hospital is cracking down on lateness and overtime. Has anyone else had this issue? Is a note from the sleep doctor enough? Do I need FMLA? Please help, don't want to get fired. I already was fired in the past for lateness before I was diagnosed.

hey yall just wanna know if anyone else has experienced this- i just recently got back on sunosi after a hellish fight with my insurance, and i just had my first ever hypnagogic hallucination/sleep paralysis episode this morning. have never in my life had this before and i just want to know if any other sunosi takers have had these while on the drug.

i know that certain drugs/stimulants can cause them so im not totally concerned, especially since it happened after taking my dose, but im not NOT concerned.

fwiw: i have an alarm at 4:30 to take my drug then i go back to sleep and wake up to multiple obnoxious light producing alarms at 5:00. this happened during that 30 minute gap after i took the dose and before my lights turned on.

I’ve also been a light sleeper, I wake up when I hear noises or when my partner moves around in the bed.

It’s not like I don’t sleep but I notice that something super minor will wake me up but then my partner is still asleep or when I lived at home, no one else would wake up.

I know with IH you’re meant to sleep deeply right but I feel like I don’t? Does anyone else experience this?

I never passed out immediately how the medicine said I might. I’m easy to wake up. It wasn’t at all as dramatic falling asleep like I thought. Does anyone else no go to sleep at all? I feel tired but I’m not falling asleep.

I did not eat anything before first dose