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!

[Flamesparrow]

 

This makes me feel far better. I have been teetering on asking for a diagnosis for a while (I have a narcoleptic friend, and she's pretty much convinced) but the lack of REM on my Fitbit was making me doubt myself even though I KNOW I have twenty minute naps with full dreams in them. 

My "normal" night

[Flamesparrow]

 

[DirtyD123]

Hi I’m type2 narcoleptic I can’t get my Fitbit to recognize my sleep consistently and when it does it rarely saves sleep stages data. Anyone else have this issue? Anyone know how to fix it?  Today it ignored my heart rate during exercise. 

[DirtyD123]

I have a 160 iQ and type 2 narcoleptic. 

[T3r430]

 

 I’m a little late to the party here. I’m 29 years old and I’ve had issue with being extremely tired almost daily since I was a teenager. My mom used to just say I was lazy as a kid but here I am years later 2 kids and still exhausted. I doze off driving sometimes, I try to fight it because I know it’s happening but I just can’t help nodding in and out. I’ve fallen asleep at work. Stopped in traffic on the highway. It’s awful and consumes me. I FINALLY have a sleep study coming up and I’m terrified. What if I am just lazy? I do a lot when I can and I hate being so tired I don’t want to be. 😫

[Cwifters]

Sounds like narcolepsy to me. I didn't get diagnosed till 23 and felt exact same way, same symptoms, with everyone telling me I was kust lazy. Not nice. Whether it's narcolepsy or something else, it is not normal or safe to uncontrollably fall asleep so well done for seeking answers. At least you will know for sure if narcolepsy and either way get advice and support going forward. Hope u get the answers you are looking for. Chris x

[Drumbob]

I had the same symptoms and was diagnosed with severe sleep apnea after my sleep study. Took awhile to get cpap machine dialed in but after it was I was a new person. Worth the hassle of using a cpap machine if you do have sleep apnea. Good luck!

[Manbearpig7734]

I have a cpap as well. And The thing is awful. But it's definitely
narcolepsy because they found I go into rem in under 1 mins 13 out of 15
times according to the sleep study. Where is a typical person takes 90
minutes. Basically, the only FDA approved medicine is apparently hard to
get. Xyrem
Welcome to America, The home of the modern slave.

[Cwifters]

I was on Xyrem for 3 years. Was great for my narcolepsy, actually managed to get deep sleep, but side effects messed up my mental health really bad. Became so anxious and paranoid to the point I thought everyone could hear my thoughts ☹️ Appears to agree ok with most people but I would never go back to it. Now i just use modafinil and methylphenidate when required, take several planned naps a day around work and try watch what and when I eat.

[flex_mom]

How did your court case go regarding your narcolepsy being a disability?

[flex_mom]

This is awesome. I wish would have gone. I live a couple hours from Chicago. I have narcolepsy with mild cataplexy. I have eventually found a med routine that helps but hate the ever present Tiredness and lack of energy. I enjoy watching my sleep stats on my Fitbit even if I know it’s not totally accurate. Provides a nice way to compare different nights. Interesting thread, love seeing the different perspectives. 

[Manbearpig7734]

Finally got it!   social security 11/16/23   

 I cannot divulge the details of thebother settlement as I signed a gag agreement.  We'll definitely be at that Chicago thing looking for like-minded individuals in 2024 if I'm not to late.  

[Manbearpig7734]

nice, I bet you're as fun as talking with my chat GPT.    I had a 146 when tested with mesa in high school.  what ate you up to these days?

[Manbearpig7734]

you didn't happen to get your tonsils removed have you?  I've been doing private research and some college kids have narrowed it down to the first time you get tonsillitis during Adolescence is when narcolepsy starts.  Tonsils are thought to be part of the immune system.