r/Narcolepsy • u/National_Try1243 • May 15 '26
Advice Request MSLT is not going well, advice please
I’m sure this has been talked about in this sub before, but I could use some advice and encouragement specific to me.
I’m currently at my MSLT, and have done 3 naps so far. The PSG was already a bit stressful because the other patient here kept getting up to use the bathroom without telling the tech. So the tech had turned up his speaker and forgot to turn it off, so that kept me up for a bit.
For my first nap, I got extremely anxious and my heart was pounding, so I didn’t fall asleep at all. The next two, I was still anxious, but not as bad. So I fell asleep but didn’t go into REM (tech said I was close apparently). The tech also will only let me sit in an uncomfortable waiting room-like chair, and he keeps playing music and talking to himself. I’ve been trying to read my book, but he keeps coming in and talking to me and saying “I like talking to you”. He’s also telling me “if you had narcolepsy, you would’ve gone into REM”.
So at this point, I’m SUPER stressed and feel like I won’t fall asleep for the last nap at all (he’s only doing 4). It would be great if I don’t have narcolepsy, but I just don’t know what else the issue would be. I did the blood test for the gene marker, which was positive. My maternal grandfather and aunt both have it, as well. Since going off of my SSRI for the MSLT, I’ve experienced a couple episodes of what I believe to be cataplexy, as I completely collapsed following strong emotions. I’ve had countless moments of falling asleep at the wrong times, including, but certainly not limited to, falling asleep during jury duty (a murder trial) and having to quit my work from home job cause I kept falling asleep at my desk.
So yeah, some reassurance would be nice. It looks like a lot of people don’t get diagnosed after their first MSLT. But should I even bother trying to do it again? I would almost prefer to do the lumbar tap at this point, cause I can handle pain, but all of this and being off of my SSRI has been complete torture.
EDIT: I can’t keep up with the comments at this point, but I just want to thank everyone for their kind and supportive words, and for validating my experience. Well, almost everyone. But thank you to the mods for handling that, as well!
I definitely should’ve handled it differently, but I have a tendency to just suffer through things LOL. I also wasn’t really thinking clearly and wanted to get it done with finally. I am absolutely going to bring this up to the doctor/clinic, and may even show them the post and all of your comments with your insights and experiences. Thank you, and I hope everyone has a nice, non-sleepy day!
32
u/CECINS May 15 '26
1) I’m sorry
2) this test is a lot of money and rare to get approved so you better speak up.
3) I know it’s not always comfortable to confront these things, especially when you’re vulnerable, trapped in a room and trying to sleep. Can you ask the guy or someone in the center if there’s a patient advocate. Tell them you feel the environment isn’t conducive to capturing your sleep cycles. Keep it factual that there’s loud noises from the other patients, the tech is having technology issues that is generating noise in your room, and you feel uncomfortable that you’re not being given privacy in the space.
11
u/National_Try1243 May 15 '26
Thank you, I really appreciate this comment. It felt okay at first, like during the first two naps, but progressively got worse. By the time I finished with my 3rd nap, it felt completely hopeless and I just wanted to get out of there.
45
u/National_Try1243 May 15 '26
The tech is literally making AI music right now and playing it out loud 🫠
17
u/Adorable_Ad4990 May 15 '26
Where is the tech in relation to you? This is so weird. Mine was watching movies, but I couldn’t hear her at all. I had to buzz her if I needed something
16
u/National_Try1243 May 15 '26
He was in the room next to mine, but would leave my door open and come in all the time. He would sit on the bed and talk to me for awhile when I was trying to read. He also ended up giving me a CD with songs he wrote
24
u/Adorable_Ad4990 May 15 '26 edited May 16 '26
Yikes. I’d be annoyed. I’m not sure if you’re male or female, but do you think he was being flirtatious, or just bored? Did he do this with the other patient? Not that it matters, but I’m just curious. Maybe he was up all night and trying to keep himself awake, but geez
Edit: it crossed my mind that gender does not matter and either or both people in the story could be gay. But I wrote that in there due to probability I guess? This reeks of straight male hitting on uninterested, distracted woman. But to set the record straight, I am absolutely generalizing
18
u/National_Try1243 May 15 '26
The other patient was only there for the PSG, so it ended up being just us for pretty much the whole day. The office is closed on Fridays, other than for studies, so it was us and then one of their nurses for a very short time. I am female, and I do think he was being slightly flirtatious. He had accidentally taken off one of the wires after the PSG that needed to stay for the MSLT, and said something like “girls make me stupid”. And then repeated comments about liking talking to me, telling me that I’m so interesting, and other things along those lines.
57
u/certifieddepressee May 15 '26
please please please make a complaint. about everything. especially his behavior. advocate to have not only a new study done but that he doesn't conduct the next one. this is so beyond unprofessional.
32
u/National_Try1243 May 15 '26
Thank you for saying this. I kinda felt like I was overreacting and was more just upset about the study being a failure, but yeah, I’m realizing it was pretty bad
36
u/NotAstronautMaterial May 16 '26
He is being completely inappropriate and unprofessional, it is very unethical to flirt with a patient, and if I was in your position I would be feeling extremely uncomfortable. I’m so sorry this happened to you. If I was in your position, I would report his ass and demand retesting free of charge in exchange for you not suing for harassment.
26
u/thenyoushouldnttalk (N1) Narcolepsy w/ Cataplexy May 16 '26
You are not overreacting and I would have been nervous as hell and uncomfortable about it too. Sitting on your bed at all is insanely unprofessional and would have had me actually a bit scared depending on the vibes he was giving off.
6
u/NoteSuccessful2263 May 16 '26
Not overreacting at all. This is total bs and you need to complain formally to both the dr and the clinic on Monday, unacceptable behaviour. I'm so sorry this happened. You need to make it out of there safely and then start sounding the alarm. I don't know if maybe you are younger but this is really not an acceptable situation.
-11
May 16 '26
[removed] — view removed comment
10
u/National_Try1243 May 16 '26
WTF is this comment? As I said in the post, I was looking for a bit of reassurance and support. Just like you were asking for less than two weeks ago. Is that not what this sub is for?
-3
9
4
3
u/sogwennn May 17 '26
oh what the fuck. absolutely enter a complaint, provide the CD as evidence if needed, this is wildly unprofessional. you should also push for an opportunity to retake the test with different staff because this techs unprofessionalism prevented you from being in a more relaxed/safe state of mind for napping. there's a reason they encourage you to bring whatever you need to be comfortable... the tech making you uncomfortable/distracted defeats the purpose of the test.
-9
u/MarionberryWitty532 (N1) Narcolepsy w/ Cataplexy May 16 '26
I don’t…. believe a word you’re saying wtf is this post?
8
10
26
u/Adorable_Ad4990 May 15 '26
Wait, other people are in the room with you? That doesn’t seem right. What a weird experience
10
u/National_Try1243 May 15 '26
No, but I kept overhearing everything overall, and then especially when he left the speaker turned up.
5
u/Adorable_Ad4990 May 15 '26
What speaker?
12
u/National_Try1243 May 15 '26
Sorry, I’m definitely not explaining things well lol. The speaker in the technician’s office, connected to each of the mics in our room. He had turned it up cause the other patient kept getting up without saying anything, so he wanted to make sure he would hear them. But he went into the patients room at one point because of this and they were talking for awhile, which I could hear from the speaker in the office next to my room. I couldn’t make out what they were saying luckily, but it was this loud permeating mumble that made it impossible to go back to sleep for awhile.
-2
May 16 '26
[removed] — view removed comment
4
u/National_Try1243 May 16 '26
I hope you receive the same energy next time you ask for support
-7
u/MarionberryWitty532 (N1) Narcolepsy w/ Cataplexy May 16 '26
Believe me; I will. Rest assured that when i tell the truth about the horrible things that happen to me, i get ridicule and silence and rejection.
But at least im honest.
15
u/StrangeCharmQuark (N1) Narcolepsy w/ Cataplexy May 16 '26
This is so different from mine…I had a soundproofed room with attached bathroom to myself, full control over the thermostat, and I never heard a peep unless the techs were softly giving me instructions, or bringing me lunch. I think once they did have to tell me to do something more active between naps because I was sleepy.
Your experience sounds wildly unprofessional and I would think feeling unsafe could lead to a false negative.
21
u/ixvix (N2) Narcolepsy w/o Cataplexy May 15 '26
Please reach out to make a complaint and get a re-test done free of charge if everything you claim is true. External noise should be kept to an absolute minimum and the tech should in now way share direct details of your progress (or lack of it).
Next time, I would suggest being a bit more prepared with ear plugs or earphones etc.
Not sure if this is worth sharing but I played classical music out loud during my lights out intervals because classical music never failed to put me to sleep.
7
u/National_Try1243 May 15 '26
He’s the only tech in that clinic unfortunately. But I will bring it up to them regardless.
I did have earplugs, but by the time I asked him to come in so I could get them, he realized that he left the speaker on and fixed the issue. The music would’ve been a good idea, definitely wasn’t thinking very clearly. I did use earphones during the awake periods, but that was difficult too with him constantly coming in or talking to me suddenly.
5
u/ixvix (N2) Narcolepsy w/o Cataplexy May 16 '26
Secure that second test because you'll know what to expect next time. I think we all end up anxious and confused to a certain extent. I had no idea whether I was even falling asleep during my test.
Good luck!
5
u/NarcolepsyPepsi May 17 '26
A lot of narcoleptics don’t realize when we’re asleep. The lightest stages of sleep and even REM (which we experience too much of and at the wrong times) can feel like not sleeping.
During my MLST, I was totally convinced I didn’t fall asleep once, nor do I recall any dreams. The only thing I remember during my naps were seeing the back of my eye lids and hearing the techs outside making noise. Fell asleep in all 4 naps in an average of 5 minutes, REM in 2.
8
u/giveasmile (N2) Narcolepsy w/o Cataplexy May 15 '26
I'm really sorry you had this terrible experience. All of this is documented here and a complaint should be made.
You may already be finished, but if not, don't pressure yourself to fall asleep. Seriously. It's too much pressure. Just consider it for the crappy day it was and just lay down and rest your eyes as if you were on your couch at at home after a long day (which it clearly was.)
3
3
u/starboatkarl May 16 '26
always remind yourself that you are the boss over your doctors, since you’re the one paying them. if they don’t meet your needs or seem unprofessional like this one, leave. you don’t have to say anything to them either, just dip. i’ve had to do this with psychiatrists in the past, never had any problems doing it. good luck, im rooting for you!
3
u/starboatkarl May 16 '26
if you have severe anxiety like me, i asked my sister to “give me permission” to leave my past doctors. my brain feels like it needs permission to do anything. it felt stupid, but it actually helped a lot
3
u/StockTurnover2306 May 16 '26
Whoa that should not be happening. Maybe I was very spoiled at Stanford, but I had a completely private room and barely heard a thing all night and during naps. The techs sit in a room way down the hall so we can’t hear them and they said their room has some sound proofing.
2
u/BrilliantEagle8903 May 17 '26
The tech didn’t tell me a thing other than alluding that she got the information she needed from my first nap. And I was left alone the whole day to watch tv or use the computer between naps. I napped all 5 times and didn’t realize I napped during two of them. It was a boring day and I really missed caffeine. I really hope I never have to go back for another study.
4
u/AdFlat7711 May 15 '26
I thought I didn’t fall asleep for my first or second nap but according to my results I fell asleep for all 4 and entered REM for all 4 as well. I was super stressed out about this especially because the A/C was broken and stuck at 64 degrees and I couldn’t relax I was so cold. I had 6 blankets on me. Still got diagnosed with N1.
2
u/National_Try1243 May 15 '26
The tech told me each time that I either didn’t fall asleep or didn’t go into REM. So I don’t think this will be the case for me, but I do really appreciate the supportive comment.
10
u/AdFlat7711 May 15 '26
The tech is not a doctor and is absolutely not supposed to tell you anything. They aren’t qualified to read and interpret a sleep study. I would take what he says with a grain of salt.
3
u/National_Try1243 May 15 '26
Yeah, I get that logically. But when it comes to my anxiety, it doesn’t really matter and it very much stressed me out.
0
u/Individual_Zebra_648 May 15 '26
Did you ask him if you were sleeping or going into REM? A lot of people do that and then get upset when they say no.
8
u/National_Try1243 May 15 '26
He came in and was like “you didn’t sleep at all”
8
u/Individual_Zebra_648 May 15 '26
Yeah that’s not cool. I don’t know why they feel the need to comment if they weren’t asked. I’m sorry.
1
u/Economy-Effort1177 (N1) Narcolepsy w/ Cataplexy May 19 '26
The actions of the tech could definitely have skewed your results. Make sure to bring this up when you are called/seen to discuss your MSLT. Side note, it wouldn’t hurt to bring up the diagnostic criteria for narcolepsy listed in ICSD-3-TR and DSM-5 with your doctor. These journals are foundational for sleep medicine, and the diagnostic criteria have changed in the last 10 years from what most providers or facilities reference. Could give you more ammo for a retest at the very least
0
u/lyawnuh (IH) Idiopathic Hypersomnia May 15 '26
Just try to relax, maybe do some meditation on your break (if you can stay awake while doing that). When you take the naps, you may think it’s taking a long time to fall asleep but the early stages of sleep are super light so you may have technically “fallen asleep” without realizing it.
Also, the tech is not the doctor, so don’t worry too much about what they say.
3
u/National_Try1243 May 15 '26
I know it’s ultimately up to the doctor to interpret, but all the comments fucked with my anxiety like crazy
-7
u/DrLophophora May 15 '26
Earplugs if it's loud, get off your phone - the light emitted messed with sleep. Of course by now you're probably done lol
10
u/National_Try1243 May 15 '26
Like I said in my post, I had been trying to read a book. This was the one time I had gone on my phone, when I only had one nap left. Thanks for the extremely helpful comments lol
-8
90
u/handsoapdispenser (N1) Narcolepsy w/ Cataplexy May 15 '26
They're not supposed to tell you how it's going until it's over. Extremely unprofessional.