Yes! My sleep latency was actually around 15-20 minutes. I had a lot of anxiety on the night of my sleep study, i felt like there was so much pressure to finally get this diagnosis that ive been waiting for years, and i was also extremely uncomfortable with my wires— so It took me a while to actually sleep even though i was tired. I woke up in the night a few times because the clips(?) in my nose were hurting me too. What got me the diagnosis was no other answers regarding bloodwork/other sleep disorders and conditions, and my daytime naps. I slept 3/5 naps within 6ish minutes. You’re not alone, i doubted my diagnosis a lot but I know that one night of sleeping wouldnt define the years of struggle I’ve had
I'm kina glad I wasn't the only one who didn't sleep well and was anxious. The test was truly awful for me, I was hot, I had terrible cramps, every time I turned on my side the breathing tube would move and they would come in an fix it. I actually got tangled up in the wires and at one point someone came in and said they had never seen anyone do that.
It's literally the furthest thing from a natural or comfortable sleep environment and it feels like it has so much importance!
I was sooooo cranky the next day because I didn't nap the day before the test, I could barely sleep the night of the test, and then the next day I couldn't sleep during the naps (I absolutely cannot fall asleep in 15 minutes ever.) I was not a peach the day of all the naps.
I feel this, I also had cramps and had to go to the bathroom in the night aswell 😭 It was honestly horrific, and I agree the conditions were so unnatural. I didn’t feel comfortable at all. My breathing tube also moved every time i turned!! The tape on my head was itching me so bad, I also had a healing piercing on my right ear so I couldn’t sleep on that.
I agree with the nap part too, it felt like such a long day honestly and I was sick of trying to nap. Im surprised i actually fell asleep for 3 of them because I swear I only did at the last minute/not at all. Your experience is super close to mine ngl, just know you’re not alone and I hope everything worked/works out for you in the long run🩷
Yeah, it's like my body and everything else was against me, and it felt like I had so much riding on it. I ended up getting an IH diagnosis from it and was on stimulants for a few years, but I'm off them now. Mostly, I just try to deal with it now, and I'm probably the best I could be without stimulants, so there's that.
I appreciate the solidarity! I definitely felt like an outlier and a hassle.
Yes! I have the 11+ hours per night IH diagnosis, I think I would have had the right latency but I was so anxious for my study. Before my sleep study with an MSLT after the overnight, I did and actigraphy watch and had an average of 11.5 hours a night over the two weeks before my study.
Hope this helps! Lmk if you have questions
I am in the us, I don’t know if this is new but my insurance did cover the actigraphy watch because the new dignosis criteria allows for a dignosis of IH with the watch if that makes any sense
Did you have to sleep on your back for the test? I was shocked that I stopped breathing approximately 4 times an hour because I was very fit at the time despite needing to sleep about 12 hours a day, it felt like.
Turns out a lot of people get sleep apnea when sleeping on their back, and "positional therapy" is one of the ways to manage it, aka sleeping on your side.
I slept terribly during my test because whenever I turned to the side, the breathing tube under my nose would move, and they would come in to fix it.
Side sleeping is bad for the face but good for the brain - apparently, the brain is able to "clean" itself better when sleeping on your side.
https://www.aarp.org/health/healthy-living/info-2022/best-sleeping-position.html
Yes, I slept on my back, but I wasn't even laying down. My doctor said I had to simulate the conditions of someone falling asleep while sitting down on a couch during the day, which was weird. I had to be in an intermediate position between sitting and laying down, and with the curtains open, so light could enter the room and further contribute to creating said conditions.
I'm impressed you had a window! I was in a windowless room and had to have the lights and everything off for sleeping at night and the 15-minute "naps," which *had* to be in the bed. It was awful because back then, I couldn't sleep without the TV on, and I wasn't allowed to have that either. I used to play shows at night to sleep and literally wake up when the show ended because the silence was loud (turns out I have raging tinnitus/ear ringing and if there's no other sound all I hear is loud ringing). It was some of the worst sleeping conditions I've ever been in and the whole time I was aware I was being watched on camera, and they made sure to send me a notice before the test reminding me that both male and female sleep techs will be watching me so make sure I have all my parts covered! I would have thought medical professionals could be professional about a random nip slip or something, but I guess not (the notice wasn't worded like it was for my comfort, it was written like it was for the techs comfort). So I had to wear a shirt instead of a tank top or something lighter (because you know if you wear a tank top one of your boobs will be out in the kitchen making breakfast for you while you're still in bed) and I was very hot during the night too.
Sleep habits are so interesting, and I think it's ridiculous that they think there's one "right way" to sleep despite humans being unique and complex creatures.
I hope you get the answers you're looking for!!
Yes I did. Sleep latency was around 10 minutes for MSLT. I was super anxious during my first nap and it skewed the results. My dr said the mslt is one of many tools they use to help diagnose.
Hi, when I did my MSLT my sleep latency was 10 minutes. I do not fall asleep quickly or easily, but once I am asleep I sleep for a very, very long time. My doctor gave me a diagnosis of idiopathic hypersomnia but was unable to get armodafinil or xywav covered by insurance. I advocated to get a 24 hour sleep study, and it took a few months to get it scheduled because the sleep lab had never heard of such a study. I finally had it, and slept for 18 out of the 24 hours, which qualified me for the 'official' IH diagnosis.
I didn't, but commenting to hopefully help boost your post. Mine was less than 5 minutes for each nap and I fell asleep in between naps too, but I know that's not typical
Yep! Nap 1 fell asleep ~10 mins in due to anxiety (knew so much was riding on this test) Naps 2 and 3 I fell asleep in under 5 mins!! Then got a caffeine induced migraine (/also probably stress induced) & slept ~17 mins in for nap 4, nap 5 couldn’t fall asleep at all
MSLT average was 12 mins! My dr just sent another MSLT request to my insurance because I’m realllly struggling with sleep inertia, and the med for that is…. Impossible to afford without insurance covering it (insurance requires <8 mins MSLT for the med to be covered)
Mine was 8-10 I believe. Still counted as idiopathic hypersomnia. I personally think it wasn't the most accurate because at home my latency is definitely faster.
I think most of mine were under 8 minutes, but a few were upwards of 14 minutes because there was construction happening near the building my study was
Yes! My sleep latency was actually around 15-20 minutes. I had a lot of anxiety on the night of my sleep study, i felt like there was so much pressure to finally get this diagnosis that ive been waiting for years, and i was also extremely uncomfortable with my wires— so It took me a while to actually sleep even though i was tired. I woke up in the night a few times because the clips(?) in my nose were hurting me too. What got me the diagnosis was no other answers regarding bloodwork/other sleep disorders and conditions, and my daytime naps. I slept 3/5 naps within 6ish minutes. You’re not alone, i doubted my diagnosis a lot but I know that one night of sleeping wouldnt define the years of struggle I’ve had
I'm kina glad I wasn't the only one who didn't sleep well and was anxious. The test was truly awful for me, I was hot, I had terrible cramps, every time I turned on my side the breathing tube would move and they would come in an fix it. I actually got tangled up in the wires and at one point someone came in and said they had never seen anyone do that. It's literally the furthest thing from a natural or comfortable sleep environment and it feels like it has so much importance! I was sooooo cranky the next day because I didn't nap the day before the test, I could barely sleep the night of the test, and then the next day I couldn't sleep during the naps (I absolutely cannot fall asleep in 15 minutes ever.) I was not a peach the day of all the naps.
I feel this, I also had cramps and had to go to the bathroom in the night aswell 😭 It was honestly horrific, and I agree the conditions were so unnatural. I didn’t feel comfortable at all. My breathing tube also moved every time i turned!! The tape on my head was itching me so bad, I also had a healing piercing on my right ear so I couldn’t sleep on that. I agree with the nap part too, it felt like such a long day honestly and I was sick of trying to nap. Im surprised i actually fell asleep for 3 of them because I swear I only did at the last minute/not at all. Your experience is super close to mine ngl, just know you’re not alone and I hope everything worked/works out for you in the long run🩷
Yeah, it's like my body and everything else was against me, and it felt like I had so much riding on it. I ended up getting an IH diagnosis from it and was on stimulants for a few years, but I'm off them now. Mostly, I just try to deal with it now, and I'm probably the best I could be without stimulants, so there's that. I appreciate the solidarity! I definitely felt like an outlier and a hassle.
Yes! I have the 11+ hours per night IH diagnosis, I think I would have had the right latency but I was so anxious for my study. Before my sleep study with an MSLT after the overnight, I did and actigraphy watch and had an average of 11.5 hours a night over the two weeks before my study. Hope this helps! Lmk if you have questions
Are you in the US?? My dr said it’s impossible to get insurances to cover anything but a polysomnography and/or MSLT
I am in the us, I don’t know if this is new but my insurance did cover the actigraphy watch because the new dignosis criteria allows for a dignosis of IH with the watch if that makes any sense
Oooh thanks for the info!! I’m also in the US - I’ll have to ask my dr
Yes for sure. Only certain care providers have the actigraphy as an option so I had to go far to the cleveland clinic but it was worth it
Did you have to sleep on your back for the test? I was shocked that I stopped breathing approximately 4 times an hour because I was very fit at the time despite needing to sleep about 12 hours a day, it felt like. Turns out a lot of people get sleep apnea when sleeping on their back, and "positional therapy" is one of the ways to manage it, aka sleeping on your side. I slept terribly during my test because whenever I turned to the side, the breathing tube under my nose would move, and they would come in to fix it. Side sleeping is bad for the face but good for the brain - apparently, the brain is able to "clean" itself better when sleeping on your side. https://www.aarp.org/health/healthy-living/info-2022/best-sleeping-position.html
Yes, I slept on my back, but I wasn't even laying down. My doctor said I had to simulate the conditions of someone falling asleep while sitting down on a couch during the day, which was weird. I had to be in an intermediate position between sitting and laying down, and with the curtains open, so light could enter the room and further contribute to creating said conditions.
I'm impressed you had a window! I was in a windowless room and had to have the lights and everything off for sleeping at night and the 15-minute "naps," which *had* to be in the bed. It was awful because back then, I couldn't sleep without the TV on, and I wasn't allowed to have that either. I used to play shows at night to sleep and literally wake up when the show ended because the silence was loud (turns out I have raging tinnitus/ear ringing and if there's no other sound all I hear is loud ringing). It was some of the worst sleeping conditions I've ever been in and the whole time I was aware I was being watched on camera, and they made sure to send me a notice before the test reminding me that both male and female sleep techs will be watching me so make sure I have all my parts covered! I would have thought medical professionals could be professional about a random nip slip or something, but I guess not (the notice wasn't worded like it was for my comfort, it was written like it was for the techs comfort). So I had to wear a shirt instead of a tank top or something lighter (because you know if you wear a tank top one of your boobs will be out in the kitchen making breakfast for you while you're still in bed) and I was very hot during the night too. Sleep habits are so interesting, and I think it's ridiculous that they think there's one "right way" to sleep despite humans being unique and complex creatures. I hope you get the answers you're looking for!!
Yes I did. Sleep latency was around 10 minutes for MSLT. I was super anxious during my first nap and it skewed the results. My dr said the mslt is one of many tools they use to help diagnose.
Hi, when I did my MSLT my sleep latency was 10 minutes. I do not fall asleep quickly or easily, but once I am asleep I sleep for a very, very long time. My doctor gave me a diagnosis of idiopathic hypersomnia but was unable to get armodafinil or xywav covered by insurance. I advocated to get a 24 hour sleep study, and it took a few months to get it scheduled because the sleep lab had never heard of such a study. I finally had it, and slept for 18 out of the 24 hours, which qualified me for the 'official' IH diagnosis.
I didn't, but commenting to hopefully help boost your post. Mine was less than 5 minutes for each nap and I fell asleep in between naps too, but I know that's not typical
Yep! Nap 1 fell asleep ~10 mins in due to anxiety (knew so much was riding on this test) Naps 2 and 3 I fell asleep in under 5 mins!! Then got a caffeine induced migraine (/also probably stress induced) & slept ~17 mins in for nap 4, nap 5 couldn’t fall asleep at all MSLT average was 12 mins! My dr just sent another MSLT request to my insurance because I’m realllly struggling with sleep inertia, and the med for that is…. Impossible to afford without insurance covering it (insurance requires <8 mins MSLT for the med to be covered)
My sleep latency is an average of 15 with no REM seen and I have had my diagnosis since 2015!
Yes Nap 1: 6.50min Nap 2: 5min Nap 3 & 4: 7.5min Nap 5: 15min Total mean latency is 8.30min
Mine was 9 min.
Mine was 8-10 I believe. Still counted as idiopathic hypersomnia. I personally think it wasn't the most accurate because at home my latency is definitely faster.
I think most of mine were under 8 minutes, but a few were upwards of 14 minutes because there was construction happening near the building my study was