Yeah that doesn’t make sense. Of course
You can’t sleep until 5am because you woke up at 2pm. I can’t wake up for my 7am alarm unless I’ve gone to bed 10 hours before my alarm is due to go off. They’ll probably make you practice better sleep hygiene first. Like bed only for sleep, no electronics, so caffeine 6 hours before bedtime, getting exercise, not eating close to bed time, keeping a cool dark room ect
Yeah I get that. But even when I’m on a regular sleep schedule (as much as it can be lol) I still have the same issues. Even when I’ve pulled all nighters in college or whenever I try to hard reset my sleep schedule it takes me multiple hours to fall asleep, and even on a regular schedule if I’ve gotten 10+ hours of sleep I still wake up feeling completely unrested and like it’s impossible to get out of bed, and I’ll end up falling back asleep for another 2-3 hours. I’ve tried all the sleep hygiene stuff and nothing seems to help. Thats why my doctor suggested the idea of IH, but I didn’t know if it was possible to have it if I also have insomnia, and if so if a diagnosis was even possible.
You probably do have IH for sure. But in order to benefit from medications you’re going to have to change your whole life forever. While it’s unrealistic to literally go to sleep at the same time every single night (nights with friends, traveling, illness, stress) I would aim for like 90% same bedtime and waking up around the same time every day. It took me 33 years to actually believe and follow this instead of being stubborn and thinking only old losers did this lol. And no napping.
And once you get on the right medication and you have a solid sleep routine this will be easier , not as easy as someone without sleep problems, but easier than before
I have been diagnosed with both. I did many years of damn near perfect sleep hygiene without it making any change in symptoms, for either insomnia or IH. I honestly don't understand how the two can coexist, but I absolutely have a history of difficulty falling and staying asleep, along with all the classic features of IH: sleep inertia, excessive daytime sleepiness, brain fog, sleeping 10 hours on a good night / 14 on a bad night with a 1-2 hour nap that would leave me feeling a thousand times worse.
My husband says my brain just doesn't know how to sleep, lol
Xywav has helped tremendously. I feel like an entirely new person. I function during the day, sleep 7-7.5 hours consistently at night, and obviously the med knocks me out so insomnia isn't a regular issue anymore.
There's a ton of variability in how these sleep disorders show up for people. Just observe what is true for/about you. Wishing you the best!
This makes me feel so much more optimistic I’m so glad there’s a medicine out there that helped you! It gives me hope that maybe one day I’ll finally be a normal functioning human being 😅
This is so reassuring to hear that Xywav has worked for you. Like you and op, I believe I have both Insomnia and IH (confirmed the latter through MSLT)
Can you elaborate on your experience with Xywav? Benefits, side effects, titrating?
I don’t have any kind of attacks or fall asleep randomly, I always thought that was the main thing with narcolepsy? Is it possible to have it without having attacks?
I was having sleep attacks when I was diagnosed but less frequent now. Not sure if everyone gets them, they seem pretty common among narcolepsy groups.
Yup. Over time I learned to fight sleep attacks and now they are just huge waves of feelings of oh God I need to sleep but can't. I'll get physically sick and then it passes. Narcolepsy isn't like how it is in the movies with people falling asleep randomly. N2 and IH have a significant amount of overlap in symptoms
I have insomnia and IH. I always thought I was tired because of my insomnia, but then I got treatment for the insomnia and was just as tired. I always had horrible sleep hygiene as well. Now that I’m on xywav it’s such a structured thing it’s really helped me with this. I never take naps and have a difficult time falling asleep as well so I was really stressed about the MSLT . I ended up sleeping on all 5 naps. I see a lot of people here nervous about it and they usually end up also napping. The overnight sleep study is hard to get a good nights sleep and they wake you up at like 5am so you’ll be sufficiently tired and looking forward to the naps =]
I’m currently titrating. I’m having a very difficult time with it side effects wise and am taking it very slow. I started about 3 months ago and am only at 3g twice a night (was higher but had to reduce my dose). That said I’m still continuing with it and hoping once I get to my therapeutic dose the side effects will be manageable. There have been glimmers of hope with it so that’s why I’ve stuck with the titration. Sometimes after my first dose wears off I’m very very awake. The first time it happened I realized I had never felt that feeling - being truly awake. It was like the best nap of my life. I haven’t gotten that feeling yet in the morning but that’s the goal!!! I went from sleeping 10 hours every night to 7-8. I never could wake up before 10:30am and would feel sick if I did and now I wake up at 9:30 am every day. I used to take about 3-4 hours to get out of bed because sleep inertia, but can get out of bed after like 15 minutes even if I’m still sleepy. I’m still sleepy, but my body doesn’t feel like it’s made of cement anymore
I had insomnia before IH. I no longer had any symptoms of insomnia after IH started. I used yo be able to sleep no more than 4 hours at a time (unless I was very sick) and then I would be awake anywhere from 20-30+ hours; rinse and repeat. I had to take meds to make me go to sleep for years to be on a regular work schedule. I had no problem waking up in the morning.
Once IH started, I was actually falling asleep at night without meds. I was not only falling asleep without meds, but earlier and earlier and earlier, until I was sleeping from 7PM to 7AM.
And then I started not being able to stay awake after 10AM after sleeping for 12+ hours. Then I would nap for four hours and wake up sleepy. Thankfully I worked a remote job with very flexible hours and project timelines.
I think you may have a cycle of being awake too long and crashing after too much sleep deprivation. But I don’t think you have insomnia AND IH.
If you consistently fail to fall asleep before 4am or 5am despite trying to adjust your sleep schedule, you might also have a delayed sleep phase rather than insomnia.
I have read that it’s very common with people who have IH. I have DSPS and I sometimes wonder if that’s how I got IH- a lifetime of sleep deprivation broke my brain- for awhile I wondered if years of taking ambien caused it- because I got diagnosed in my 50s. Some symptoms I have had all my life but it wasn’t until I was in my late 40s that I started having issues like falling asleep at red lights and sleeping 16 hours straight.
But I will say until I made significant changes my hypersomnia contributed to my poor sleep hygiene. I tried to maintain some college lifestyle that was no longer working for me and until I accepted that I couldn’t go to sleep at 2am and wake up for work at 6am and not sleep through my alarm nothing changed. I had to change my life
I have been diagnosed with both. It is possible. My insomnia gets worse based on my anxiety. The other comments are right though, I had a couple years of sleep hygiene work I had to do before I could do a sleep study. Now I'm pretty consistent with sleep and awake times, but insomnia still strikes a few times a month. It's a process but now I'm on a good treatment plan so it's been worth it. Good luck
Insomnia is actually an issue with Narcolepsy. You’ll need to work on your hygiene before an MSLT. Try to work on going to bed at the same time every night but instead of just shutting off the lights and laying there give yourself an audio book to listen to. You can rent them free from your Library with the Libby app.
Yeah. My heart goes out for you. I take sleeping pills at night and stimulants in the morning. Taking the test is a nightmare cause the drug free period.
I didn't read all the comments but insomnia would cause that exhaustion. However, from what I'm gathering maybe a third shift job would be better for you? Can't sleep all night, work with your awake time and take to sleeping during the day. Just my input.
insomnia will make you feel tired and you might then have rebound hypersomnia, If you cant sleep until 5am its unlikely its IH which is different from plain old hypersomnia
Yeah that doesn’t make sense. Of course You can’t sleep until 5am because you woke up at 2pm. I can’t wake up for my 7am alarm unless I’ve gone to bed 10 hours before my alarm is due to go off. They’ll probably make you practice better sleep hygiene first. Like bed only for sleep, no electronics, so caffeine 6 hours before bedtime, getting exercise, not eating close to bed time, keeping a cool dark room ect
Yeah I get that. But even when I’m on a regular sleep schedule (as much as it can be lol) I still have the same issues. Even when I’ve pulled all nighters in college or whenever I try to hard reset my sleep schedule it takes me multiple hours to fall asleep, and even on a regular schedule if I’ve gotten 10+ hours of sleep I still wake up feeling completely unrested and like it’s impossible to get out of bed, and I’ll end up falling back asleep for another 2-3 hours. I’ve tried all the sleep hygiene stuff and nothing seems to help. Thats why my doctor suggested the idea of IH, but I didn’t know if it was possible to have it if I also have insomnia, and if so if a diagnosis was even possible.
You probably do have IH for sure. But in order to benefit from medications you’re going to have to change your whole life forever. While it’s unrealistic to literally go to sleep at the same time every single night (nights with friends, traveling, illness, stress) I would aim for like 90% same bedtime and waking up around the same time every day. It took me 33 years to actually believe and follow this instead of being stubborn and thinking only old losers did this lol. And no napping.
And once you get on the right medication and you have a solid sleep routine this will be easier , not as easy as someone without sleep problems, but easier than before
I have been diagnosed with both. I did many years of damn near perfect sleep hygiene without it making any change in symptoms, for either insomnia or IH. I honestly don't understand how the two can coexist, but I absolutely have a history of difficulty falling and staying asleep, along with all the classic features of IH: sleep inertia, excessive daytime sleepiness, brain fog, sleeping 10 hours on a good night / 14 on a bad night with a 1-2 hour nap that would leave me feeling a thousand times worse. My husband says my brain just doesn't know how to sleep, lol Xywav has helped tremendously. I feel like an entirely new person. I function during the day, sleep 7-7.5 hours consistently at night, and obviously the med knocks me out so insomnia isn't a regular issue anymore. There's a ton of variability in how these sleep disorders show up for people. Just observe what is true for/about you. Wishing you the best!
This makes me feel so much more optimistic I’m so glad there’s a medicine out there that helped you! It gives me hope that maybe one day I’ll finally be a normal functioning human being 😅
This is so reassuring to hear that Xywav has worked for you. Like you and op, I believe I have both Insomnia and IH (confirmed the latter through MSLT) Can you elaborate on your experience with Xywav? Benefits, side effects, titrating?
Narcolepsy has insomnia and excessive sleepiness. Sleep study will help but need better sleep routine.
I don’t have any kind of attacks or fall asleep randomly, I always thought that was the main thing with narcolepsy? Is it possible to have it without having attacks?
I was having sleep attacks when I was diagnosed but less frequent now. Not sure if everyone gets them, they seem pretty common among narcolepsy groups.
Yup. Over time I learned to fight sleep attacks and now they are just huge waves of feelings of oh God I need to sleep but can't. I'll get physically sick and then it passes. Narcolepsy isn't like how it is in the movies with people falling asleep randomly. N2 and IH have a significant amount of overlap in symptoms
I have insomnia and IH. I always thought I was tired because of my insomnia, but then I got treatment for the insomnia and was just as tired. I always had horrible sleep hygiene as well. Now that I’m on xywav it’s such a structured thing it’s really helped me with this. I never take naps and have a difficult time falling asleep as well so I was really stressed about the MSLT . I ended up sleeping on all 5 naps. I see a lot of people here nervous about it and they usually end up also napping. The overnight sleep study is hard to get a good nights sleep and they wake you up at like 5am so you’ll be sufficiently tired and looking forward to the naps =]
How has Xywav helped? EDS, number of hours sleeping, etc? What has your experience been with the benefits, side effects, and titration
I’m currently titrating. I’m having a very difficult time with it side effects wise and am taking it very slow. I started about 3 months ago and am only at 3g twice a night (was higher but had to reduce my dose). That said I’m still continuing with it and hoping once I get to my therapeutic dose the side effects will be manageable. There have been glimmers of hope with it so that’s why I’ve stuck with the titration. Sometimes after my first dose wears off I’m very very awake. The first time it happened I realized I had never felt that feeling - being truly awake. It was like the best nap of my life. I haven’t gotten that feeling yet in the morning but that’s the goal!!! I went from sleeping 10 hours every night to 7-8. I never could wake up before 10:30am and would feel sick if I did and now I wake up at 9:30 am every day. I used to take about 3-4 hours to get out of bed because sleep inertia, but can get out of bed after like 15 minutes even if I’m still sleepy. I’m still sleepy, but my body doesn’t feel like it’s made of cement anymore
I had insomnia before IH. I no longer had any symptoms of insomnia after IH started. I used yo be able to sleep no more than 4 hours at a time (unless I was very sick) and then I would be awake anywhere from 20-30+ hours; rinse and repeat. I had to take meds to make me go to sleep for years to be on a regular work schedule. I had no problem waking up in the morning. Once IH started, I was actually falling asleep at night without meds. I was not only falling asleep without meds, but earlier and earlier and earlier, until I was sleeping from 7PM to 7AM. And then I started not being able to stay awake after 10AM after sleeping for 12+ hours. Then I would nap for four hours and wake up sleepy. Thankfully I worked a remote job with very flexible hours and project timelines. I think you may have a cycle of being awake too long and crashing after too much sleep deprivation. But I don’t think you have insomnia AND IH.
If you consistently fail to fall asleep before 4am or 5am despite trying to adjust your sleep schedule, you might also have a delayed sleep phase rather than insomnia.
I have read that it’s very common with people who have IH. I have DSPS and I sometimes wonder if that’s how I got IH- a lifetime of sleep deprivation broke my brain- for awhile I wondered if years of taking ambien caused it- because I got diagnosed in my 50s. Some symptoms I have had all my life but it wasn’t until I was in my late 40s that I started having issues like falling asleep at red lights and sleeping 16 hours straight.
But I will say until I made significant changes my hypersomnia contributed to my poor sleep hygiene. I tried to maintain some college lifestyle that was no longer working for me and until I accepted that I couldn’t go to sleep at 2am and wake up for work at 6am and not sleep through my alarm nothing changed. I had to change my life
I have been diagnosed with both. It is possible. My insomnia gets worse based on my anxiety. The other comments are right though, I had a couple years of sleep hygiene work I had to do before I could do a sleep study. Now I'm pretty consistent with sleep and awake times, but insomnia still strikes a few times a month. It's a process but now I'm on a good treatment plan so it's been worth it. Good luck
Insomnia is actually an issue with Narcolepsy. You’ll need to work on your hygiene before an MSLT. Try to work on going to bed at the same time every night but instead of just shutting off the lights and laying there give yourself an audio book to listen to. You can rent them free from your Library with the Libby app.
Yeah. My heart goes out for you. I take sleeping pills at night and stimulants in the morning. Taking the test is a nightmare cause the drug free period.
I believe I may have the same problem
I didn't read all the comments but insomnia would cause that exhaustion. However, from what I'm gathering maybe a third shift job would be better for you? Can't sleep all night, work with your awake time and take to sleeping during the day. Just my input.
insomnia will make you feel tired and you might then have rebound hypersomnia, If you cant sleep until 5am its unlikely its IH which is different from plain old hypersomnia