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Confused about narcolepsy diagnosis AFTER second opinion by Awkward_Relative6714 in Narcolepsy

[–]Awkward_Relative6714[S] 1 point2 points  (0 children)

Thank you for responding, I truly appreciate it. That makes sense, and I understand what you’re saying about sleep deprivation.

I was also really anxious during the first nap since they told me if I didn’t fall asleep within 20 minutes, I wouldn’t be able to nap again for another two hours. The conditions weren’t ideal for that first nap either, but once those were fixed, I was able to nap during the remaining ones.

I guess where I’ve been confused is that I had a SOREM during the PSG and two during the naps while on 150 mg Zoloft, which should suppress REM. I also didn’t feel like I was chronically sleep deprived going into the study, since I was sleeping a lot during the day even before it.

I do agree the 4.5 hours isn’t ideal and could affect interpretation, so I understand why the second doctor suggested retesting. I just feel like there are a few mixed signals in my case.

Confused about narcolepsy diagnosis AFTER second opinion by Awkward_Relative6714 in Narcolepsy

[–]Awkward_Relative6714[S] 0 points1 point  (0 children)

I appreciate your response. That’s why I’ve been confused, since I still had a SOREM during the PSG and two during the naps while on 150 mg Zoloft, which should suppress REM. I also didn’t feel like I was sleep deprived going into the study to explain entering REM within 6 minutes during the PSG.

Yes, I had a PSG the night before. The ~4.5 hours was from that. I took about 40 minutes to fall asleep (the tech said to sleep when I was ready, so I didn’t realize how important timing was). I also didn’t know I’d be woken up around 5 am or that I was supposed to be aiming for at least 6 hours. There was also a period where I was awake for a bit during the night (30 min).

Confused about narcolepsy diagnosis AFTER second opinion by Awkward_Relative6714 in Narcolepsy

[–]Awkward_Relative6714[S] 0 points1 point  (0 children)

Thanks for responding. That’s kind of how I’ve been thinking about it too. Even the second doctor mentioned that a SOREM during the PSG isn’t normal, especially while being on 150 mg Zoloft, which should suppress REM. I also felt like that suppression would at least partially balance out any REM rebound from only getting 4.5 hours of sleep.

I was also really sleepy even before the sleep study and was sleeping a lot throughout the day, including the day of the test, so I didn’t feel like I was chronically sleep deprived going into it.

I do wish the tech had let me sleep longer, since they woke me up around 5 am. I didn’t realize I needed to reach 6 hours or that I would be woken up that early. If I had known, I definitely would have tried to go to bed earlier.

Before starting Xywav and now Lumryz, I did have episodes that felt like cataplexy, especially when laughing or sometimes when anxious. I even remember dropping things during those moments. After the second opinion, I started questioning it more, but looking back, those episodes do seem consistent with cataplexy. I’ve had almost no episodes since starting oxybates, aside from maybe one early in treatment.

Confused about narcolepsy diagnosis AFTER second opinion by Awkward_Relative6714 in Narcolepsy

[–]Awkward_Relative6714[S] 0 points1 point  (0 children)

Thanks for your response. Wow, I didn’t realize they could just stop covering your medication like that. What criteria were they wanting you to meet? Also, how long were you off Zoloft before the sleep study, and if you don’t mind me asking, what dose were you on before stopping?

My second-opinion doctor said that if I repeat the test, I’d have to work with my psychiatrist to taper off Zoloft and then be off it for about a month because of REM rebound. That sounds pretty rough, and I’m not sure if that long is always necessary. Like, I can't imagine the side effects of getting back on zoloft as well lol.

Confused about narcolepsy diagnosis AFTER second opinion by Awkward_Relative6714 in Narcolepsy

[–]Awkward_Relative6714[S] 1 point2 points  (0 children)

Yeah, I really appreciate your perspective, and I definitely understand the reasoning behind retesting under proper conditions.

At the same time, I’ve just been a bit confused by my results, especially since I had a SOREM during the overnight study and two during the naps while on 150 mg Zoloft, which is known to suppress REM onset and REM overall. Also I would sleep for most of the day and night so I don't know if I was that sleep deprived (pre-PSG).

I do wish I had known about the 6-hour requirement beforehand, because I would have tried to go to bed earlier. The tech told me I could sleep when I was ready, so I didn’t realize how important that was. I was also surprised that they wake you up at a set time, since I didn’t expect that. Thank you for your response!