FYI - What a diagnosed Narcoleptic's sleep patterns look like.

[JeanetteLH]

I know that a lot of you like to compare your sleep patterns to others' so you can see if your sleep is in the normal range. A lot of you suspect that you may have a sleeping disorder such as Narcolepsy or Hypersomnia. From what I've read, experts believe that there are many people suffering with undiagnosed sleeping disorders, so don't be afraid to bring this up to your physician, and advocate for yourself. My primary care physician initially just thought I was tired because I had four small children. Fortunately (well, in terms of getting a diagnosis is was fortunate), I was suffering from some other symptoms that pointed to more of a sleeping disorder as opposed to just the daytime sleepiness, so he referred me to a Pulmonologist who speacialized in Sleep Medicine. I did an overnight sleep study and a sleep latency nap study the following day. The criterion for a diagnosis of Narcolepsy (at least it was in 2006) is a sleep latency (time it takes to fall asleep) of less than five minutes for five naps (20 minutes max length) that are spaced two hours apart, and you must enter REM sleep in at least two of the five naps. 

Here is a sampling of my sleep patterns according to my FitBit. I've definitely seen a lot worse on here. LOL That's why I'm posting this so that some of you might feel confident enough to tell your docs that you think there might be something more than just your average sleepiness. Now, I will say that part of the problem for Narcoleptics is not spending enough time in the most restorative stages of the sleep. Fitbit only records "restless" and "deep sleep" and of course it's not based on brain waves, so there's no way to know when you've been in REM sleep, etc. However, it gives you a pretty good idea of the amount of sleep you're getting.

I tried to include a wide sampling, showing some of my best and worst nights. Also, I  have it set to sensitive and dominant hand, but wear it on my non-dominant wrist to see if sensitivty was decreased. I've worn it on both wrists with the same settings and I don't think I noticed a huge difference.

Have fun analyzing!

[Missyjx]

This is actualy reall interesting to see, i tend to have a lot of restlessness during the night, being restless for anything over 2 hours during my sleep, and it seems to take forever to fall aslepp, some of my patterns seem pretty similar to yous, i have mine to high senstivity on my non dominant hand. i dont suppose they gave you any tips on how to help with your sleep pattern, or sleep efficency, mine is constantly quite low.

[Sbeamis]

I am diagnosed with primary Hypersimnia and have had the same sleep study in 2006. I think...it was so long ago. I got my fitbit yesterday and I don't think it is on sensitive bit it says it is most accurate to where on your non dominate hand during sleep. I fall asleep...into rem within 2 minutes according to my sleep latency test then and for the first night my fit bit seems pretty accurate. My results don't look much like yours. I will post a screen shot when I figure out how.

[Mcore]

This is very interesting @JeanetteLH. Thank you so much for sharing this information with us. 

[Cthulee]

I was diagnosed with narcolepsy back in 2015 and just last week I saw a sale for the FitBit Flex. I decided to get it while it was cheep just to see what this thing said my sleep looked like... it's depressing. I will open my sleep chart to all but I get 3.5hr a night on average for a 8 hour nights sleep.

I went to the doctor to get tested for a sleep disorder when I almost fell asleep driving with my kid in the car. (Luckily I noticed and pulled over to switch drivers with my wife.) Low and behold it was full blown narcolepsy.

If you feel like you never sleep but are always sleeping... GET TESTED. Since I was put on Nuvigil my life has returned to semi-normal... still tired, but at least I can do things and not have to be scared I will pass out.

[Sbeamis]

Thanks. I have hypersomnia. I have a fit bit HR. Nuvigal and Provigal are
both meds that I have been on. If you have Narcolepsy you should like our
group on face book.

[Cthulee]

I do not have facebook, otherwise I would.

[Phairlady]

What's the groups name? I want to join!

[ClaraB77]

What's the group on Facebook? I am interested in joining - I have Narcolepsy and Cataplexy, diagnosed my junior year of HS (2010)

[creepingjennie]

Please be aware that if you have narcolepsy, your tracker will not be accurate for tracking exercise, weight loss, etc. Apparently those of us with narcolepsy have lower basal metabolic rates, and the FitBit is not designed for anyone with a lower metabolism than textbook normal. Since there is no way to adjust that, you will end up like me- exercising an hour a day, eating half as much as you burn, and not losing any weight whatsoever. 

[alwaystired]

This is really interesting.  My background is I am awaiting for a second opinion at Stanford soon.  I have an appt for the PSG and hopefully a MSLT, but only if they deem needed.

Where I live I had one done and yes it has shown issues, but nothing that they can apparently help me with except medication.  Problem is, is I'm having problems with the meds and the sleep doc here in town is the only one and you cannot get in to see him.  My own doc doesn't understand other medications for this problem, so she sent me to Stanford for help.  I also have other issue's that have made me wonder if I also have an Autoimmune disorder so I am trying to get help with that too while I'm there.. Who know's maybe their connected.

Ok, so anyway, I just got a fitbit Charge2.  I have to admit it's quite interesting watching my sleep patterns everynight.  So far I have done 3 nights  First 2 I was shocked when it said I was only getting 2 hours and 19 mins of sleep that night!  Next night it was 2 hours and 17 mins, and last night was much better.... 4 hours and some mins... can't remember.  I am shocked.  really shocked.  I'm supposed to be keeping a log anyway to bring in right before I go to my appt so this is great as I can download all of this info.

Thanks.  Would love to see more peoples results..

[alwaystired]

Oh and I forgot to add.... I have been the same way with my weight... I am so frustrated as I lost 90 pds years ago.  It wasn't easy as I found the only way I could do it was by eating 500-800 cals a day.  If I ate more than 1000-1200 I would gain.  People didn't believe me.  But it was true.  I thought well hell, it's menopause.  But noo.... now I don't believe so.

[Sbeamis]

Idiopathic Hypersomnolence World wide (Idiopathic Hypersomnia)

[SunsetRunner]

What an interesting thread! Now that sleep stages are available, I'd be interested in seeing what diagnosed narcoleptics are seeing now. I suspect based on my own (not diagnosed with narcolepsy) experiences that fitbit does overestimate what it calls deep sleep, and naps throughout the day usually seem to have an "onset" of either 1 or 6 minutes, which seems more like an artifact of the 5 minute HR sampling than an honest guess at when sleep commences.

[Chrismg93]

Were you ever able to post an image of what your sleep chart looks like? I am going for testing soon and am just curious what yours looks like compared to mine. 

[Chrismg93]

Were you ever able to post an image of what your sleep chart looks like? I am going for testing soon and am just curious what yours looks like compared to mine. 

[B.bazaar]

I was diagnosed with narcolepsy in 1987. I’m 43 now and have had no cataplexy or hypnagogic/hypnopompic hallucinations for about 10 years! I still don’t have normal sleep but it’s a lot better. I’m not sure how I cured myself. EMDR, Heart math might have helped to reduce stress levels. 

[Phairlady]

What is heart math or edmr? I believe exercise can reduce stress and help.
My restless leg syndrome actually improved almost to 100% when I went off
an antidepressant I was on along with a medication that is used for RLS. As
it turned this medication that is used to help Restless legs, also causes
this as a side effect in some people. The difference is crazy, and I at one
point tried to go back on the antidepressant and my RLS came back that very
night. I have lost my Fitbit, so I'd love to know what my patterns look
like now, but I am not longer falling asleep at the wheel of life so I'm
very pleased with it. Now I use exercise to combat the anxiety and it works
better without the unwanted side effects. I am lucky in a way, but yeah,
you gotta work for the prize, it's an effort to motivate to get up and go
but worth it tenfold! Thanks for sharing 😁

[Narcolepticmom]

I am narcoleptic , I suspect my daughters are,  one has a fit bit and I am just getting to watch the sleep patterns.  I greatly appreciate you sharing this so I can compare.   She had Polysonogram,  which showed very mild apnea,  not enough to explain 13 full awakening and 93 partial awakenings during Polysonogram.   The nurse practitioner from neurology ar children's is clueless about sleep disorders,  migraines and non neurotypcal children,  not sure what she may be good at.   

Anyway, thank you so much  sharing

[Manbearpig7734]

Fitbit does not accommodate settings for a narcoleptic.

If you notice you will never go into REM within an hour of falling asleep according to your Fitbit.

Even though you actually are in REM 

I have been through a sleep study

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@JeanetteLH wrote:

I know that a lot of you like to compare your sleep patterns to others' so you can see if your sleep is in the normal range. A lot of you suspect that you may have a sleeping disorder such as Narcolepsy or Hypersomnia. From what I've read, experts believe that there are many people suffering with undiagnosed sleeping disorders, so don't be afraid to bring this up to your physician, and advocate for yourself. My primary care physician initially just thought I was tired because I had four small children. Fortunately (well, in terms of getting a diagnosis is was fortunate), I was suffering from some other symptoms that pointed to more of a sleeping disorder as opposed to just the daytime sleepiness, so he referred me to a Pulmonologist who speacialized in Sleep Medicine. I did an overnight sleep study and a sleep latency nap study the following day. The criterion for a diagnosis of Narcolepsy (at least it was in 2006) is a sleep latency (time it takes to fall asleep) of less than five minutes for five naps (20 minutes max length) that are spaced two hours apart, and you must enter REM sleep in at least two of the five naps. 

Here is a sampling of my sleep patterns according to my FitBit. I've definitely seen a lot worse on here. LOL That's why I'm posting this so that some of you might feel confident enough to tell your docs that you think there might be something more than just your average sleepiness. Now, I will say that part of the problem for Narcoleptics is not spending enough time in the most restorative stages of the sleep. Fitbit only records "restless" and "deep sleep" and of course it's not based on brain waves, so there's no way to know when you've been in REM sleep, etc. However, it gives you a pretty good idea of the amount of sleep you're getting.

I tried to include a wide sampling, showing some of my best and worst nights. Also, I  have it set to sensitive and dominant hand, but wear it on my non-dominant wrist to see if sensitivty was decreased. I've worn it on both wrists with the same settings and I don't think I noticed a huge difference.

Have fun analyzing!

---

and I know that I immediately go to REM and stay there 98% of the time.