7 replies to this topic

[Iced Java]

Hi,

I'm the mom of a high-school aged daughter who finally had her PSG/MSLT last week. The doctor says her overnight sleep was fairly normal (no sleep apnea, excessive limb movements or awakenings, with a normal amount of time between falling asleep and the start of REM sleep).

However, she was falling asleep in under 5 min. for the naps, which he said was not normal. (He did not comment about REM sleep during the naps.) He is planning to do some more in-depth analysis of her test itself, and was pleased that her other doctor had already had her complete an actigraphy recording for 2 weeks, so he'll be looking at that too. He would like to see her in person next month. (Pediatric specialists in our area are in low supply / high demand.)

He referenced narcolepsy, but said it usually "shows up" younger (?). The only real hint of that I can think of right now is that she used to fall asleep while doing homework pretty regularly beginning in middle school.

I got the impression that the combination of "normal" overnight sleep with abnormal nap results was somewhat atypical. He said "other things" can sometimes cause the short sleep latency, but didn't say what.

Has anyone else here had these type of results? Did you wind up being diagnosed with either narcolepsy or something else?

Thanks in advance if you have time to share your experience or knowledge. It seems like we'll be busy doing lots of wondering until June!

~ Sara

[sleepywriter]

High school age? Sounds about right to me. There is an "average" age that symptoms generally appear - teens to age 25 - but there's no hard and fast rule, especially since so many people experience symptoms but don't think anything of them for so long. There is a reason the gap between symptom onset and diagnosis is so long. It can be hard to decipher symptoms like automatic behavior, excessive daytime sleepiness, and sleep paralysis if you have them so long that you don't realize you're not like most people.

Unfortunately, sleep studies can vary depending on the night. The first PSG I took was awful. If they could have diagnosed me with narcolepsy without a MSLT, they would have. Abnormal amounts of REM sleep, multiple awakenings not due to apnea or limb movements, and just all out wackiness. BUT I also didn't have enough sleep to move forward with the MSLT, so they sent me home in the morning. A few weeks later during the repeat PSG, I took an Ambien with me at the suggestion of my sleep specialist. I slept beautifully that night and ended up with an unremarkable PSG. Still, my MSLT confirmed my doctor's suspicions. I fell asleep during four naps, REM in three, but I didn't even realize I'd fallen asleep at all! Weird.

My point is that it is possible to have a normal-ish PSG followed by an MSLT that indicates narcolepsy. I don't know if it's common, but it sure happened to me!

Good luck and keep us updated!

[Iced Java]

Hi, sleepywriter -

Thanks for your reply! Sounds you had less than an ideal sleep study experience your first time around. Thanks for sharing it. It's frustrating to finally get to that point and have things not go normally.

The sleep doc was afraid my daughter wouldn't sleep much between 10pm-6am, so she stayed away from naps the day she went in for her sleep study. The solid block of time she slept was atypical for her, but they did get to record the various stages of sleep.

Her main problem is chronic EDS, but there also seems to be some hypersomnia in her case, which I've read is not characteristic of narcolepsy.

The comment he made about usually seeing narcolepsy show up younger surprised me too, as what you stated matches what I've read.

At any rate, thanks for posting. I am anxious to hear anyone else's thoughts, comments or experiences as well.

Thanks again!

~ Sara

[Nezzy]

Hi, sleepywriter -

Thanks for your reply! Sounds you had less than an ideal sleep study experience your first time around. Thanks for sharing it. It's frustrating to finally get to that point and have things not go normally.

The sleep doc was afraid my daughter wouldn't sleep much between 10pm-6am, so she stayed away from naps the day she went in for her sleep study. The solid block of time she slept was atypical for her, but they did get to record the various stages of sleep.

Her main problem is chronic EDS, but there also seems to be some hypersomnia in her case, which I've read is not characteristic of narcolepsy.

The comment he made about usually seeing narcolepsy show up younger surprised me too, as what you stated matches what I've read.

At any rate, thanks for posting. I am anxious to hear anyone else's thoughts, comments or experiences as well.

Thanks again!

~ Sara

Sara

I just posted about my sleep study and my overnight test was normal but my MSLT was very telling because I fell asleep fast for every nap and even entered REM sleep once. They said that combined with my hallucinations was a huge indicator or N and through the diagnosis and some pills at me. So I guess it sounds just like your daughters problem. BTW I am 28 years old and just found out about but I have been tired all the time since high school but it was always either "oh your a teen its normal to be tired" or "your a mom everyone is tired"

Good luck!

[Luvmy2kids]

My 17 year old daughter had a "normal" PSG and abnormal MLST- napping in all five naps with short latency and she had REM in 3 out of 5 naps (within 3 min). I was also confused about the "normal" PSG as everything I have read so far suggests PSG should also be abnormal? She was dx'd with N due to MLST and EDS/sleep paralysis/hallucinations.

[merrymom1013]

Problems with night time sleep are common with narcolepsy, but an abnormal overnight sleep study is not necessary for diagnosis. The abnormal MSLT with short sleep latency & REM naps is required for diagnosis. While my daughter's overnight study was normal, her night time sleep has become more of an issue over time.

[AYCV]

Problems with night time sleep are common with narcolepsy, but an abnormal overnight sleep study is not necessary for diagnosis. The abnormal MSLT with short sleep latency & REM naps is required for diagnosis. While my daughter's overnight study was normal, her night time sleep has become more of an issue over time.

I recently had an PGST and was normal but the MLST was abnormal (rem in 3 out of five-but I don't count the first nap since I had really bad neck pain from the pillows . According to my sleep specialist the ressults are inconclusive....I'm confused myself. He recommended Xyrem. Not sure about this medication.

[exanimo]

My 17 year old daughter had a "normal" PSG and abnormal MLST- napping in all five naps with short latency and she had REM in 3 out of 5 naps (within 3 min). I was also confused about the "normal" PSG as everything I have read so far suggests PSG should also be abnormal? She was dx'd with N due to MLST and EDS/sleep paralysis/hallucinations.

From what my Neurologist told me about the PSG - in cases where Narcolepsy is suspected, they will schedule you for the overnight PSG and the daytime MSLT. He told me that the MSLT is the only diagnostic test for Narcolepsy, and that the only reason the PSG is done (when Narcolepsy is suspected) is to rule out other causes of EDS (such as restless leg syndrome, or sleep apnea). So from my understanding, if Narcolepsy is suspected, or it becomes the diagnosis, then a PSG should be normal and the MSLT abnormal.

But 'normal' is a relative term. Because from my understanding, with Narcolepsy a persons' sleep cycles are all screwed up (primarily entering REM). So I would suppose that a person would also exhibit 'abnormal' cycles of sleep during a PSG as well as having abnormal results during the MSLT (such as having a short latency and entering REM).

I don't know if that helped at all. It's kind of confusing!! But I hope everything goes well at your daughter's appointment and that you both get some answers as well as a good treatment plan!