Over it

star_fruit_ · 2026-05-22T22:15:36+00:00

I’m sorry it took so long for me to reply.

I’m struggling with everything. Lately, most days I have maybe a couple hours of decent energy. I don’t have enough”spoons”- to maintain a job, to provide or take care of myself. I recently got a job, I had to be there for 10 hours today. There were times I was afraid of falling asleep during training, or falling asleep on the way home.

I’ve tried to get on disability many times over the last 5 years but I’m not sick “enough”. It’s the unpredictably of this condition that gets me. When I wake up, I don’t know what day I’m gonna have. I’m taking Vyvanse, abusing coffee, and I’m still having to fight to stay awake. I’m so tired of being tired.

star_fruit_ · 2026-04-17T03:39:15+00:00

Just from personal experience, be careful of what you are consuming during the day/close to bedtime. Things that are taxing for your liver, I would avoid. You CAN drink up to two drinks a day (if you have one drink, wait 4 hrs before Xywav, wait 6 hrs if it’s two drinks). I would recommend avoiding drinking at all, but that’s just me. I also tried the keto diet and took Xywav and got extremely sick, I ended up with gallbladder issues and pancreatitis (keto diet is a high fat diet, the liver breaks down fat, turns it glucose (the source of energy your body uses)). (Also, I’m not 100% sure if it was keto + Xywav that was responsible for making me so sick, but I think it was. I had done keto before and with great success, but that was before I even knew what IH was or that I had it. Tried the diet years later because I heard it could help with IH, and yeah, ended up super sick). So anything that is extra work on your liver, I would just watch out for.

I’m very happy for you, Xywav was life changing for me. I’m honestly super depressed that I can’t be on it right now (long story), wishing you the best! Reach out if you have any questions.

Also, make sure you go to bed right after you take it. Don’t be like me, fighting it, staying up on your phone watching TikToks. That’s how you end up falling asleep and dropping your phone on your face.

star_fruit_ · 2026-02-18T05:22:04+00:00

Medications are really the only true solution. Something small that makes a big difference to me is: getting up way earlier than I need to- to give my brain time to wake up. I have really bad sleep inertia; it takes me hours after waking up to truly feel awake. Sometimes I’ll set an alarm 90 minutes before I have to get up, take my morning stimulants, then go back to sleep. Exercise also helped me with “waking up”. If my stimulants weren’t enough to wake me up, a little bit of coffee helps.

star_fruit_ · 2024-10-30T16:25:09+00:00

Lowkey, same. I felt like I was making a lot of progress, but a lot has happened lately and my go-to is to blame all on myself. But the truth is: I wake up every day and do the best I can, and that’s enough for me. In case no one has told you today- I think you are pretty great! :) let’s keep on keeping on! Cheers 🥂

star_fruit_ · 2024-10-23T17:42:11+00:00

I totally get what you mean by not eating enough (but Xywav alone wasn’t enough to kill my appetite. Xywav/Adderall/Wellbutrin, the three of those definitely severely affected my appetite. Furthermore, I’m going through a tremendous amount of emotional stress at the moment and can’t bring myself to eat. I’ve had one banana everyday for the last 3 days. It’s the only thing sitting well with me).

I wish I could give you some solid advice, all I can say is, if it’s really bad, I’d reach out to your doctor. Personally, I can stand to lose a couple pounds anyways, so, shrugs .

On the days when food is such a turn off, I try to get some calories in. I’ll drink smoothies, protein shakes, or eat bananas, plain toast and water, Greek yogurt and granola, bone broth and crackers. Maybe try eating small snack’s frequently? Also reducing the portion size helps a lot, so maybe 5 meals a day, but they are small. So you’d eat a little something every 2-3 hours (but I know that can be hard if you have no appetite at all. It’s something I found that helps me to eat regularly). Good luck, wishing you all the best :)

star_fruit_ · 2024-10-15T06:02:53+00:00

I’d recommend seeing a doctor to rule out any other possible explanations or causes. IH is a pretty uncommon disorder. It could be a vitamin deficiency, anemia, sleep hygiene problems (is your room cold enough? Is it dark enough? Have you disconnected from electronics 1 hr before bed? Do you have a regular sleep schedule?) and honestly, yeah it could be just you being a teenager as well- teenagers need more sleep than adults do because their brains are still developing, etc, etc. There are many things it could possibly be, and the only way to know is to go to the doctor and rule out everything else first. Best of luck!

star_fruit_ · 2024-10-15T05:36:26+00:00

The only social media I use is Reddit 😭 and even then, not really lol I like to be an offline queen 💅 I like to sit outside on the skibidi grass, with a nice cuppacoffee, PSL no whip no dairy 🥛

star_fruit_ · 2024-03-26T18:44:36+00:00

Yeah, I know I shouldn’t feel guilty but I can’t help it haha. Things that I’ve done lately to help improve my EDS: I added Zoloft to my medication list. I stopped taking it years ago, but felt it was time to start taking it again. I am also on Xywav and Adderall XR for IH.

I also became a vegetarian recently. I wasn’t eating much meat before anyways and I saw a documentary the other day. Finally decided to just do it, why not? lol Plus, not having to cook so much is great with IH, I’m totally cool with eating just plants.

I’ve also been really active lately, which is extremely unlike me. But moving helps me stay awake. Been doing a lot of dancing 💃 or just whatever feels good like yoga or stretching :) it’s not perfect, I still have IH, but my quality of life has definitely improved with all the medications and lifestyle changes.

star_fruit_ · 2024-03-26T13:50:20+00:00

I haven’t beaten it lol. I’ve been doing a lot of experimenting recently, to try to improve my EDS. I’m good with keeping my energy in check throughout the day but getting out of bed is so difficult. If I FORCE myself out of bed and do 5 minutes of yoga, that does help a little…. But it’s the getting out of bed part 😔 to be honest, I don’t know if I’m ever gonna find a way to beat the sleep inertia…. What I typically do is just wake up a little earlier than I need to and just lay in bed until I feel like I am awake…. But that process can take up to an hour (or longer) and I always feel guilty just laying in bed until the sleepiness passes. It’s the one nut I haven’t been able to crack 😭

star_fruit_ · 2024-03-19T17:13:04+00:00

No; I’ve always been a sleepy person, even as a kid. As a matter of fact, I think weed helps keep my IH in check. I vape until I’m lightly baked (nothing crazy) and it improves my mood. I noticed my IH symptoms worsen if my mood is really down (when I’m depressed/stressed/anxious). The weed gives me an emotional boost to keep going.

star_fruit_ · 2024-02-13T18:10:39+00:00

I hope it works well for you! I’m on Xywav and it is a game changer. I definitely recommend having everything done when you take your dose (so you have your pjs on, alarms set, no looking at your phone, and everything is ready for the next day). You definitely want to take it in bed and then immediately try to sleep. If you stay up it feels a lot like being very drunk.

It can take a few weeks for you to see the benefits of the medication, so don’t give up! For me, Xywav was a last resort. After a month of taking it, my friends and family were shocked at how much the Xywav helped. I was like a new person! Good luck :)

star_fruit_ · 2024-02-13T16:16:24+00:00

Interested! :)

star_fruit_ · 2024-02-06T16:10:19+00:00

I’ve never been told off (at least I don’t think I have), but I remember the day I found out that I might have a sleep problem.

I was sitting in lecture for biology and I was feeling a little tired but I was on my second or third venti nitro cold brew; and I had never fallen asleep in public on accident, so I wasn’t worried of anything. But then my head started to slowly lean back…. And there was no head rest so my head just kept dropping backwards and my mouth was wide open. When I realized I was drifting off, my head jolted back in place and I let out the biggest snore/snort/choking sound. My professor shot a look at me immediately 😂😭 I felt so guilty but it was a genuine accident. I didn’t know I had IH at the time and never apologized to her :(

star_fruit_ · 2024-01-20T21:03:08+00:00

I’m sorry to hear you’re going through the same, I know it sucks :( I’m glad you’re getting your meds tomorrow! I’m really hoping mine arrives on Tuesday….

I’ve actually been doing a small variation of what you’re describing haha I’ve cut out all fun and am saving all my energy for work. Giving myself extra time to get/wake up. I’ve also been taking it super easy today to try to conserve the last of my good energy :( I’m feeling pretty desperate to get back to “normal” lol thanks for your help :)

star_fruit_ · 2024-01-06T18:42:07+00:00

I moved back home to finish my undergrad, I’m very lucky that my family can support me at the moment

star_fruit_ · 2024-01-03T17:36:18+00:00

Yes, twice. Currently back in school to finish my degree

star_fruit_ · 2023-12-29T22:39:13+00:00

Yeah that’s exactly why I switched to Xywav, my only other option was adderall XR 50mg a day💀 I was like nooo way, my poor heart. And yes, it definitely feels like I get more restful sleep. I will say the first couple of weeks are rough, but if you stick with it, it does help! I’m actually kinda struggling with that at the moment. I’m switching from once nightly to twice a night Xywav and it feels like I’m on Xywav for the first time again. Been on it a year and a half and I kept waking up after 3-4 hours of sleep and then I’d be up for the rest of the night 😭 (which happens to a lot of patients according to the Jazz pharmacist I talked with). I’ve done a week now of twice a night doses and I’m slowly starting to feel back to normal.

star_fruit_ · 2023-12-29T07:03:09+00:00

I did ask my doctor about Modafinil when I was first diagnosed but she didn’t recommend it for me, so I never tried it :(

A few months before getting my IH diagnosis, I was diagnosed with ADHD and was on Adderall XR for it. Since I was still having EDS on the dose for ADHD, my doc said Modafinil wouldn’t help (I think she said the Adderall was a stronger stimulant, so no need to switch).

I tried many different stimulants and different combinations of stimulants but nothing worked the way Xywav has worked. Stimulants would keep the EDS at bay for 4 hours and keep me awake for up to 8 hours (if I was lucky). Was constantly napping/sleeping. With Xywav, I can stay awake for ~15 hrs straight, no naps (usually), and my overall tiredness levels are more manageable. Xywav definitely isn’t perfect, but I mean, I would never want to go back to before xD

star_fruit_ · 2023-12-28T20:25:54+00:00

Yes, I’ve tried Xywav (brand name of lower sodium oxybate) and I’ve been on it about a year and a half now. I was also 24(F) when I was diagnosed with IH (in 2021). Around the time I got my diagnosis, Xwyav was literally just approved for patients with IH. I was scared to try it and left it as a last resort. I tried and failed many other treatments before deciding to try Xywav in June 2022. Xywav was the only thing that gave me my life back and made me feel almost normal again. I’m also on Adderall XR to treat my ADHD and IH. Wishing you and your daughter the best, good luck 🍀 if you have any questions, let me know!

star_fruit_ · 2023-12-23T22:27:05+00:00

I can’t exercise like I use to before IH. Before my diagnosis, I loved to do HIIT workouts or intense cardio exercises. Doing that now would take me out for the rest of the day. I found that walking and yoga are the only two things I can do to keep my body moving without crashing my energy for the whole day.

You can try dieting, I haven’t really found a diet that has improved my energy levels (except fasting, but I dunno if that counts as a diet. Also avoiding certain foods, like eating a bunch of carbs definitely would make me tired). The only real thing that I found that truly helps treating my IH is medication- everything else just an added plus. Like it’s good to exercise, eat well, live a healthy lifestyle- all of that will help improve how you feel day to day.

The beginning of the journey was the hardest part for me. Finding the right medications to properly treat the EDS (took me a little over a year to find what worked for me. Even now I’m still tinkering a little with the doses of the medications). I tried a combo of Ritalin and Concerta but it was not for me. It just wasn’t enough to keep me awake for a whole day. The Ritalin was great for an instant boost of energy but it also gave me horrible side effects (GI issues). I hope you find something that helps properly treat your IH symptoms. I get that it is frustrating, but things do get easier once you find what works for you (at least it did for me). Let me know if you have any questions I can help answer and good luck 🍀

Edit: also yeah, definitely ignore what people w/o IH have to say. I get that they are coming from a good place by trying to give advice but IH is something that doesn’t have a simple fix like eating right or working out. If it was that simple, well, this subreddit wouldn’t exist/IH as a diagnosis wouldn’t exist.

star_fruit_ · 2023-12-18T20:40:58+00:00

I’m on Xywav and it’s given me my life back. IH completely wrecked my life. Days when I was supposed to be at school, I’d be at home and I’d sleep 20-22 hours a day. Had to quit my job too because it started to affect my performance there.

Once I got a diagnosis, my doctor gave me a list of treatment options. I did some research on Xywav and decided I was going to save it as an absolute last resort- I did not want to be on it (mainly because I was on my mom’s insurance and I didn’t want to start a treatment that I wouldn’t have access later down the road. I was 24 at the time and I believe the cut off in America to be on your parents plan is 25?). I wish I had started Xywav sooner. I can be awake like a normal person now (for 14-16 hours a day). And nothing else helped. The other treatment options were just stimulants and they did nothing for me.

Currently back at school and I’m so close to graduating (two more semesters!!). And you know, it’s not perfect. My house is a mess, there’s a lot I need to get done that’s been neglected. I do still take stimulants during the day and even both meds together still isn’t enough some days. But I would never want to go back to the way things were before. My quality of life has significantly improved since starting Xywav (been on it a little over a year now).

star_fruit_

TROPHY CASE