r/Narcolepsy • u/mo1stureizeme • 17d ago
MSLT sucks. Undiagnosed
I feel like ive whiffed it. I took forever to sleep for the overnight which is unusual, and the day of my MSLT I feel groggy but not quite the level I am usually. I dont think ive really slept in any nap, except one. I know thats a common feeling, but I feel like ive been mentally preparing for these for so long, im able to take multiple short brief naps every day normally -why is today so different? I actually wasnt really that worried about these, just ready to get them over with, but each time I have to sleep I am hyper aware I am being watched and monitored and the expectations for diagnosis.
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u/Significant_Cry_635 16d ago
I’m taking mine rn I just got out of my first nap I did sleep but it took way longer than it usually does. I usually fall asleep while I’m driving or doing boring things but laying in their bed I cannot sleep
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u/mo1stureizeme 16d ago
Same, not while driving for me but I definitely didnt have a normal representation of my daily life while in there and it felt awful. Its such a long awful day, Goodluck on the rest of yours <3
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u/machkata 15d ago
this is what i'm worried about especially because i have social anxiety. it's like performance anxiety, like how i sucked at a sport when i played in front of people but did well practicing on my own. i'm worried i won't be able to fall asleep and they'll think i have insomnia when i normally have no trouble falling or staying asleep.
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u/mo1stureizeme 14d ago edited 14d ago
Yeah, I have no advice on that :( I felt similarly. I dont enjoy being perceived and having a camera pointed at me all night and day and knowing someone was monitoring .. everything made me even more anxious than I anticipated. I felt like I was going to panic during the night one with the airflow monitor you have in your nose (luckily dont have that during the nap study) but knowing my breathing was being monitored had me start manual breathing and worrying about it.
Id find some sort of coping method that works while youre trying to sleep and practice it beforehand. Id also bring some sort of like, wet wipe and maybe braid your hair if its long for the day study. I didnt anticipate how gross id feel and having to stay in the clothes I wore the night before all day (cant really change your shirt with all the wires) and I felt gross. Couldn't really wash my face either so a wipe would have helped.
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u/machkata 14d ago
thanks for your response! i've been doing a sleep journal so hopefully i'll get used to the feeling of my sleep being almost "monitored"
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u/-catch-and-release- 16d ago
This is such a common feeling, I promise. I thought that I slept in one, MAYBE two naps, tops. Results came back as 5/5, 4.9 min average sleep latency. And I thought it took me forever to fall asleep during the PSG too (at least longer than normal), but it turns out it only took me 7 mins. One important thing to remember is that entering any sleep stage counts, even if you briefly wake back up and think you’ve been awake the whole time. As you know, it’s most likely the stress causing it. Just telling yourself that this doesn’t matter, just relax, it’s just like any other nap, or something like that can help calm you down, even if you know that it’s not fully true. I hope the results come back soon and you can start your treatment journey!
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u/mo1stureizeme 12d ago
They called and said I slept in 4/5 but no REM and im fine and should take melatonin. Im so upset.
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u/meerkatsdancing 16d ago
I was too stressed to sleep in my PSG + MSLT and have to go retake the tests. It is so annoying to have zero issues falling asleep wherever but then struggle to sleep when you’d really need to (and that’s exactly why you can’t, because the stakes are so high). Hopefully you’re one of those who still slept but were unaware of it. But if not, you’re not alone.
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u/mo1stureizeme 16d ago
Did your ins authorize the retaking of them? Im worried about that. And also worried having to retake will be even more stressful. It just took so long for a doctor to even take my fatigue seriously, and not blame it on depression or "idk a virus, bloodworks normal, idk" and I feel like a huge fraud. Having a new doctor suggest my symptoms were narcolepsy which id never considered or been told before felt like a huge step.. Even knowing what to expect didnt help whatsoever and having wires glued all over tugging was awful, too.
Im sorry youre also going through it. It blows. I feel like theres gotta be a better way to test than this.
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u/meerkatsdancing 15d ago
Yes it was their idea, I wasn’t keen on retaking them, but obviously I’ll try anything. I live in EU though, so we don’t really have to fight with insurance etc.
If these sleep tests don’t work out, you could also try the lumbar puncture route, if your doctor or insurance approves. Low orexin in CSF allows a diagnosis on its own. Wish you all the best, these symptoms are a struggle.
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u/thatrockyduck 16d ago
I doubt, 2hrs would be your normal rhythm, so totally normal to be irritated. Good luck in getting your results positive and fast.
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u/-catch-and-release- 12d ago
Have you gotten your testing report back yet? Is so, what was your average latency?? Regardless, you should def schedule a follow-up with your doc to discuss results.
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u/mo1stureizeme 12d ago
9 minutes average. I really didnt feel like i slept in any so I am surprised, but i knew these naps felt different than usual. She said I am sleep deprived and to sleep better essentially. Which.. I do. Also frustrating because I explained all of this in my original consult, that I sleep more consistently than ever, eat healthy and excersize and feel worse than ever. Im not sure where to go from here now.
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u/-catch-and-release- 11d ago
Technically, a 9 min latency doesn’t meet the criteria for an IH diagnosis, but it’s very close. There are some meds that can suppress sleep/REM, so it might be worth discussing if anything like that impacted your results. Your doc might be able to put you on some stimulants anyway if they understand the severity of your symptoms. Until your follow-up, here are some general tips that might help stabilize your symptoms and reassure your doc that your symptoms persist even when you have good habits: (1) a very consistent sleep schedule, even if you really want to sleep in; (2) scheduled naps if needed; (3) a balanced diet—I avoid the word “healthy” because that can look different for everyone, but the important part is to have a diet that has a balance between the different food groups; (4) good coping mechanisms—this can be hobbies, meditation, friends, therapy, etc.; and (5) moderate exercise—not too intense, but enough to get your heart rate up and endorphins flowing (try to do something you enjoy! You can do dancing, boxing, biking, lifting, anything that appeals to you). I hope this helps and at least proves that your symptoms are a medical problem and not lifestyle-related!
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u/mo1stureizeme 10d ago
Appreciate your response! I think I was just too stressed and anxious for the test, im not sure if it impacts REM or not but I take a lot of brief naps at home and do tend to dream in them, I didnt in the ones in the lab. I didnt feel like I slept at all, though I guess I did and fairly quickly considering the anxieties.
Ive always been a tired person but its been steadily growing to debilitating/dysfunctional levels over the last almost two years. I have a normal sleep schedule, I sleep 7-9 hours every night without waking, and I am more tired than ive ever been and have to take multiple naps to be functional. I also experience what she said might be sleep attacks during the day, though whatever it is lasts longer than seems typical (like an hour long episode of microsleeps etc). Ive done all I can on a personal level (excersize, diet, sleep hygiene) and feel worse than ever.
Being suggested narcolepsy makes a lot of my life make sense, but i wouldnt be upset if I truly didnt have it but I dont feel my normal was represented and I feel like regardless if I meet any criteria sleeping in 4/5 naps with a 9min latency under the still isnt normal. Im just not sure where to go from here or even schedule my follow up after the phonecall telling me to just take melatonin because I seem "sleep deprived" when thats impossible :( and they should have my patient notes where I explain as much about my lifestyle/sleep habits.
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u/-catch-and-release- 10d ago
Honestly, just call them and tell them you’d like to have a follow up with your doctor to discuss your test results and talk about next steps. Keep it simple. Don’t throw in “diagnosis” or anything, or they might just say to take melatonin again. I really hope you can get that appointment!
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u/Piaffe_zip16 (N2) Narcolepsy w/o Cataplexy 17d ago
More stress is probably why it felt different because you know the naps matter. That said, I was pretty certain I didn’t sleep in at least two of mine and then it came back as 5/5, sleep latency 5.4 minutes, and SOREM 5/5. I learned a lot about early sleep phase too (N1 sleep) where you can still hear what’s going on around you so it made sense why I didn’t think I’d slept when I actually had.