6 replies to this topic

[napper123]

Hi

I'm in my late-20s and I've been having problems with falling asleep during the day since I was 18ish. I regularly fall asleep driving, in class, in meetings, and even talking to people and reading out loud. It's like whenever I have the chance to not concentrate, I will probably fall asleep, and when I start to fall asleep, I physically cannot make myself stay awake.

I've been worried about possibly being narcoleptic, but what if I'm just very sensitive to being sleep deprived? I'm a busy person, during the week, I'll turn my light off and go to bed at around 11:30pm and wake up at 7:30am (so thats 8hrs with the light off, I figure that gives me about 8-7.5 hrs of actual sleep time. If I go to bed late, I might get down to 6hrs sleep time at the minimum on a bad day in a regular week). On the weekends I sleep in with no alarm, and I'd say on average I get 8-10hrs sleep. I have noticed that when I maintain a more regular sleep schedule, I nap less.

I went to a sleep doctor and he thinks I might have narcolepsy despite the fact that my overnight PSG showed that I have normal REM patterns. (on top of the regular sleepiness, I do sometimes get the hallucinations before I nap, but that would make sense in someone who was sleep deprived too, right?) I am trying to think of other possibilities:

A) what if I'm just really sensitive to lack of sleep? what if I've just been having a hard time making up from any sleep deficit that I have?
or what if I just need more sleep. what if I should be a 10-8hr sleep person instead of a 8-6hr person? how would I know? I try to be fairly disciplined so when the alarm goes off, I get out of bed, no questions asked. but what if I need more sleep and I'm just not listening to my body?
C) what if my sleep trigger is just really easy? Other than the times that I pulled into a nap, I'm usually fairly awake and alert. What if whenever I zone out, my body just pulls me into sleep really easily?

I guess my final questions for the group (or any doctors around?) are...

A) does it sound like I have a huge sleep deficit that I just haven't made up yet that is causing my sleepiness?
since I have normal REM patterns, I assume I can't really be narcoleptic, are there other people with normal REM patterns that have similar symptoms as me? are we lumped in with narcoleptics too?


any help/ similar stories would be great!

thanks!

[DeathRabbit]

Hi

I'm in my late-20s and I've been having problems with falling asleep during the day since I was 18ish. I regularly fall asleep driving, in class, in meetings, and even talking to people and reading out loud. It's like whenever I have the chance to not concentrate, I will probably fall asleep, and when I start to fall asleep, I physically cannot make myself stay awake.

I've been worried about possibly being narcoleptic, but what if I'm just very sensitive to being sleep deprived? I'm a busy person, during the week, I'll turn my light off and go to bed at around 11:30pm and wake up at 7:30am (so thats 8hrs with the light off, I figure that gives me about 8-7.5 hrs of actual sleep time. If I go to bed late, I might get down to 6hrs sleep time at the minimum on a bad day in a regular week). On the weekends I sleep in with no alarm, and I'd say on average I get 8-10hrs sleep. I have noticed that when I maintain a more regular sleep schedule, I nap less.

I went to a sleep doctor and he thinks I might have narcolepsy despite the fact that my overnight PSG showed that I have normal REM patterns. (on top of the regular sleepiness, I do sometimes get the hallucinations before I nap, but that would make sense in someone who was sleep deprived too, right?) I am trying to think of other possibilities:

A) what if I'm just really sensitive to lack of sleep? what if I've just been having a hard time making up from any sleep deficit that I have?
or what if I just need more sleep. what if I should be a 10-8hr sleep person instead of a 8-6hr person? how would I know? I try to be fairly disciplined so when the alarm goes off, I get out of bed, no questions asked. but what if I need more sleep and I'm just not listening to my body?
C) what if my sleep trigger is just really easy? Other than the times that I pulled into a nap, I'm usually fairly awake and alert. What if whenever I zone out, my body just pulls me into sleep really easily?

I guess my final questions for the group (or any doctors around?) are...

A) does it sound like I have a huge sleep deficit that I just haven't made up yet that is causing my sleepiness?
since I have normal REM patterns, I assume I can't really be narcoleptic, are there other people with normal REM patterns that have similar symptoms as me? are we lumped in with narcoleptics too?


any help/ similar stories would be great!

thanks!

Well, I would hope the doctor wouldn't jump straight to a sleep study without ruling out the obvious. Narcolepsy is usually the diagnosis you get when all other diagnoses fall through. He should have done blood work and hormone panels on you and checked for things like persistent infections, etc first.

[Sunrise]

I think it sounds like you may have narcolepsy. People with N don't always have messed up REM patterns or abnormal PSG. Mine were not that abnormal during the overnight test and I have N. One of the indicators is going into REM very early in sleep. I didn't do this on the two overnights I had, it was actually delayed in both. One reason may be that in both overnights I fell asleep before the exam! The first when I was being wired up. The second one when they turned out the lights and did the tests. I wan't even that tired. So by the time the test started I was now awake. Also, there may be less deep sleep. I got deep sleep on both, but less than normal. My first PSG, I had problems with an extreme number of arousals. I do remember waking up a lot on the test. I was having mild apnea issue due to sinus problems, which are gone now. The second PG had higher arousals.

I also used to blame my sleepiness on sleep deprivation since I was a teen. Most of the time I was sleep deprived, but not always much worse than others. Other times when I was sleeping well, I still was tired and more sleepier than normal. I know that when I get 8 hours of sleep, I can usually make it through the day without falling asleep. If I get less than 7 hours, I will not be able to make it through the day without a nap or a sleep attack (as in if I don't nap, I'll have a sleep attack eventually.) It was not until I was in my 30s that I got diagnosed. I used the sleep deprivation excuse to put off seeing a sleep doctor. I always thought if I just get enough sleep it would go away, but in the back of my mind knowing all along that it was probably something deeper. I used to track my sleep for years and I learned every single sleep hygeine tip (not that I followed them all!) It's kind of like normal people usually don't have to obsess with sleep hygeine because even if they get a bit sleep deprieved it is not that big of a problem. For a PWN, sleep deprivation is causes major problems.

I went to the doctor for other issues trying to figure out what was wrong and they could not find much that was serious. Eventually I had a sleep study done, but not the MSLT. Like you, the doctor was suspicious of my having narcolepsy. I kind of got scared at that point...even though I think I was suspicious before then. Also the doc wanted to treat me for mild sleep apnea, which I figured probably wasn't a big issue. It wasn't till 3-4 years later that I got the full diagnosis by that time I had gotten to the point that it was causing major problems.

Hallucinations when you nap are a sign. You are going to REM on naps probably. I used to do this too. It can happen to normal people when they are sleep deprived, but if you are getting 8 hours of sleep and this happening then that is not normal. This is what the MSLT will test: going into REM and taking naps multiple times during the day.

As for the zoning out and being pulled into sleep too easily, that is also what narcolepsy basicly is. When you have N or lack orexin, your body has less sleep-wake control. So instead of that 8 hour of night sleep, you could sleep throughout the 24 hours. It is as if the the barrier between sleep and wake is muddied. During my younger days, I used to be more alert when I was awake and then I'd get these sleeping attacks at times. My symptoms got worse eventually and other health issues also interfered making me tired all day now. So I have to work harder to stay alert. Over the years, I picked up all kinds of tricks to stay alert (like, never sitting back in a chair) and awake to the point that the tricks become your life. Getting that 8 hours a night makes a huge difference though.

It is good to ask questions, but don't stay in denial too long... If you are getting a good 8 hours every night and still falling asleep during the day, then that is clearly a big problem and a sign of narcolepsy. You really need to have the overnight with the MSLT for a real diagnosis.

[napper123]

I think it sounds like you may have narcolepsy. People with N don't always have messed up REM patterns or abnormal PSG. Mine were not that abnormal during the overnight test and I have N. One of the indicators is going into REM very early in sleep. I didn't do this on the two overnights I had, it was actually delayed in both. One reason may be that in both overnights I fell asleep before the exam! The first when I was being wired up. The second one when they turned out the lights and did the tests. I wan't even that tired. So by the time the test started I was now awake. Also, there may be less deep sleep. I got deep sleep on both, but less than normal. My first PSG, I had problems with an extreme number of arousals. I do remember waking up a lot on the test. I was having mild apnea issue due to sinus problems, which are gone now. The second PG had higher arousals.

I also used to blame my sleepiness on sleep deprivation since I was a teen. Most of the time I was sleep deprived, but not always much worse than others. Other times when I was sleeping well, I still was tired and more sleepier than normal. I know that when I get 8 hours of sleep, I can usually make it through the day without falling asleep. If I get less than 7 hours, I will not be able to make it through the day without a nap or a sleep attack (as in if I don't nap, I'll have a sleep attack eventually.) It was not until I was in my 30s that I got diagnosed. I used the sleep deprivation excuse to put off seeing a sleep doctor. I always thought if I just get enough sleep it would go away, but in the back of my mind knowing all along that it was probably something deeper. I used to track my sleep for years and I learned every single sleep hygeine tip (not that I followed them all!) It's kind of like normal people usually don't have to obsess with sleep hygeine because even if they get a bit sleep deprieved it is not that big of a problem. For a PWN, sleep deprivation is causes major problems.

I went to the doctor for other issues trying to figure out what was wrong and they could not find much that was serious. Eventually I had a sleep study done, but not the MSLT. Like you, the doctor was suspicious of my having narcolepsy. I kind of got scared at that point...even though I think I was suspicious before then. Also the doc wanted to treat me for mild sleep apnea, which I figured probably wasn't a big issue. It wasn't till 3-4 years later that I got the full diagnosis by that time I had gotten to the point that it was causing major problems.

Hallucinations when you nap are a sign. You are going to REM on naps probably. I used to do this too. It can happen to normal people when they are sleep deprived, but if you are getting 8 hours of sleep and this happening then that is not normal. This is what the MSLT will test: going into REM and taking naps multiple times during the day.

As for the zoning out and being pulled into sleep too easily, that is also what narcolepsy basicly is. When you have N or lack orexin, your body has less sleep-wake control. So instead of that 8 hour of night sleep, you could sleep throughout the 24 hours. It is as if the the barrier between sleep and wake is muddied. During my younger days, I used to be more alert when I was awake and then I'd get these sleeping attacks at times. My symptoms got worse eventually and other health issues also interfered making me tired all day now. So I have to work harder to stay alert. Over the years, I picked up all kinds of tricks to stay alert (like, never sitting back in a chair) and awake to the point that the tricks become your life. Getting that 8 hours a night makes a huge difference though.

It is good to ask questions, but don't stay in denial too long... If you are getting a good 8 hours every night and still falling asleep during the day, then that is clearly a big problem and a sign of narcolepsy. You really need to have the overnight with the MSLT for a real diagnosis.

Thanks, I like the term "sleep attacks", thats definitely what it feels like. And how you said that one of the differences between normal people and others is that normal people don't really have to worry that much about sleep deprivation, but for people like me, whatever I have causes a big problem.

Thanks I really appreciate hearing about your story!

[MINItron]

Thanks, I like the term "sleep attacks", thats definitely what it feels like. And how you said that one of the differences between normal people and others is that normal people don't really have to worry that much about sleep deprivation, but for people like me, whatever I have causes a big problem.

Thanks I really appreciate hearing about your story!

One big thing that I notice is that I really can't sleep for much longer than 6 hours. After about 6 hours I start waking up repeatedly until I give up, and just get up. Very rarely I manage to sleep longer. Usually it is because I am really, really tired or don't feel good.

[napper123]

One big thing that I notice is that I really can't sleep for much longer than 6 hours. After about 6 hours I start waking up repeatedly until I give up, and just get up. Very rarely I manage to sleep longer. Usually it is because I am really, really tired or don't feel good.

Yea, thats similar to me (although for me its more like I rarely sleep more than 9hrs). I suppose you are answering this b/c you have been diagnosed with narcolepsy?

If narcoleptics are tired because they can't sleep well, shouldn't they want to sleep longer to try and get more sleep? I guess maybe it just affects people differently...

Another question--
Do any of you guys feel like the sleep attacks come in waves? Like right now I feel like I'm doing really well, not really getting that many sleep attacks, but last year and until a couple months ago I was falling asleep during the day almost everyday of the week. My schedule has changed so that I'm more on my feet and less at a desk which helps keep me awake. Maybe I'm just managing it better? or are there thoughts that the sleep attacks will come back, especially if my schedule changes back.

[MINItron]

Yea, thats similar to me (although for me its more like I rarely sleep more than 9hrs). I suppose you are answering this b/c you have been diagnosed with narcolepsy?

If narcoleptics are tired because they can't sleep well, shouldn't they want to sleep longer to try and get more sleep? I guess maybe it just affects people differently...

Another question--
Do any of you guys feel like the sleep attacks come in waves? Like right now I feel like I'm doing really well, not really getting that many sleep attacks, but last year and until a couple months ago I was falling asleep during the day almost everyday of the week. My schedule has changed so that I'm more on my feet and less at a desk which helps keep me awake. Maybe I'm just managing it better? or are there thoughts that the sleep attacks will come back, especially if my schedule changes back.

Very often for narcoleptics it doesn't matter how long you sleep. Our sleep patterns don't allow us to get quality rest from the sleep we get. You will see some threads on here where people have been prescribed Klonopin. Klonopin is a benzo that supresses REM. It lets you sleep all night long, but the quality of sleep isn't really any better. Xyrem somehow normalizes the sleep pattern. You don't necessarily sleep any longer than you would normally, you get a more restful sleep.