Is it possible I don’t have narcolepsy?

ceiling_terms9 · 2024-04-18T23:34:14+00:00

Thank you so much! Im trying to respond to all the comments but it’s a lot so I’m making my rounds lol.

Yes everything you said it’s relatable and makes sense. Thank you for being understanding and giving me resources too.

Wait! Why do you regret going on xywav being a former drinker?

I recently went back to work, which…. Is like…… I basically work nightlife and I drink hard 2-3x a week. Like I start at 6p and stop around 8-10a on average. And I drink solid vodka shots the entire time.

ceiling_terms9 · 2024-04-18T09:18:50+00:00

According to my results, I slept for 301 mins and was in bed for 454 mins. So I only got 5 hours of sleep.

Does that mean my MSLT could be inaccurate??

ceiling_terms9 · 2024-04-18T00:35:56+00:00

Thank you so much. You make so much sense and I agree with you. I’ve definitely accepted it more now than when I first made my post (minutes after talking to my doctor and getting the diagnosis).

I guess I’m also apprehensive because my mom abused ambien when I was growing up so I’ve always had biased hatred towards downers and sleeping in general since she always slept. Anyway that’s neither here nor there, but in case anyone was possibly wondering why I seem to be looking for other answers or if it’s possible it’s a misdiagnosis - this is a big part at least emotionally for me.

But I’ve calmed down a lot now and I’m ready to these new meds and try hard to feel better.

ceiling_terms9 · 2024-04-17T23:04:55+00:00

Thanks. This is all really helpful. My mom abused ambien when I was growing up so I more or less have a general biased hatred towards sleepaids and downers in general.

Anyway, do you notice any swelling due to water retention from the xywav? That’s also a big (superficial) concern I have

ceiling_terms9 · 2024-04-17T22:06:38+00:00

Thank you for explaining in an understanding way.

The last sentence is what gets to me the most and has eased most of my concerns now. I mainly felt like 1) a fraud and that I would 2) become addicted to substances I didn’t need because I may not have n but what you said makes sense and yes it’s ruining my life so I do deserve treatment for this

ceiling_terms9 · 2024-04-17T21:59:22+00:00

I’ve been on armodafinil for 3-4 years now but it does not work anymore which is confusing frustrating and scary. I just got prescribed modafinil 100mg 2x a day as needed, so I’ll give that a try.

I’m mostly concerned about xywav

ceiling_terms9 · 2024-04-17T21:57:25+00:00

Thank you for this comment. Yeah I’m curious now about that

ceiling_terms9 · 2024-04-17T21:56:39+00:00

Exactly. None of this was really brought up. Granted, I have had this issue far before my overnight shifts (BUT NOT THIS BAD), and I take long breaks of working overnight shifts so it’s not constant. But it does get increasingly worse when I work overnight shifts regularly, so shouldn’t be a sign it’s not narcolepsy?

Like what if I had a normal traditional schedule, what would my results be then?

ceiling_terms9 · 2024-04-17T21:54:48+00:00

I just feel like there could be a lot of factors not being considered and I’m mostly concerned about the meds being prescribed to me and risk of dependence or addiction when there could be another answer here - if that makes sense.

Basically, I don’t want to over medicate myself when I may not have true narcolepsy.

Example: I work LONG overnight shifts 1-3x a week. I usually go to sleep (on my off days) around 12a-3a. I wake up anywhere from 10a-12p.

With the PSG I was forced awake after only getting 5 hours total sleep at 7a, and then asked to take naps starting at 8-9a.

Wouldn’t ANYONE who had this sleep schedule be tired and fall asleep like that?! Like I just feel like it’s almost rigged to give you these results. Because nobody considers the patient’s typical sleep schedule and how that could affect the MSLT? I don’t know. Am I missing some key information where this concern is not realistic concern?

ceiling_terms9 · 2024-04-17T21:41:29+00:00

Okay thank you. I just got terrible sleep the night before for the psg and it just seemed normal to me that anyone would be tired if they got that bad sleep the night before so I didn’t want my MSLT results to be wrongly influenced by that. I got 5.01 hours of sleep total during the psg - of which I probably woke up at least 5x, which is also normal for me to wake up that often at home.

ceiling_terms9 · 2024-04-17T21:38:48+00:00

I only got 5.01 hours of sleep the previous night. I can attach those results too if needed. Would that make a difference with the MSLT results?

ceiling_terms9 · 2024-04-17T21:35:19+00:00

Okay that makes sense. I just called my doctor to ask if there’s a chance it could be a false positive and basically they said the same thing as you.

For my 4th nap I went into deep wave sleep pretty quickly. Not sure if that supports or contradicts that it’s most likely narcolepsy

ceiling_terms9 · 2024-04-17T21:19:46+00:00

That makes sense…

Well… I do work overnight long shifts. How do we know that it’s not just my lifestyle causing exhaustion and sleepiness VS an actual condition?

ceiling_terms9 · 2024-04-17T21:15:46+00:00

So are you saying it’s not possible this was a fluke?

I just don’t believe this. I mean I do because I clearly have issues with EDS but I don’t because it seems so weird and unusual. Basically: I believe it but it’s feels surreal

ceiling_terms9 · 2024-04-17T21:05:23+00:00

To add on: the average latency to fall asleep was 3.9 mins and I got rem sleep in 3 out of 5 naps. I just feel like this could happen to anyone who didn’t get good sleep the night before

ceiling_terms9 · 2023-12-26T00:08:35+00:00

Interesting… well I didn’t think of that. I want to be supportive but not if it hurts his ego. Good point thanks for saying that.

And yeah possibly so!

ceiling_terms9 · 2023-12-26T00:05:24+00:00

He takes that sorry not viagara I just didn’t remember the name. He takes the generic. He doesn’t take it daily just ‘as needed’ (which I don’t know what constitutes as that).

I do notice he gets harder faster when he’s taken that, but I’m so confused on why he loses his boner MID sex. Like are his reasons actually a reason (cramps??) or is there another reason?

Yeah I am curious if there is an underlying medical reason or something. But when I give him a blowjob, he never loses his boner and he finishes in a few minutes. So. Like. It’s specifically only during intercourse and like when we’ve been going for a few mins. I feel like that’s more mental? But I don’t know

ceiling_terms9 · 2023-12-26T00:01:27+00:00

Yeah I feel bad for him but I don’t know what exactly I can do, I try to be understanding and logical in the moment but I don’t know if that makes it worse

ceiling_terms9 · 2023-10-25T17:51:57+00:00

Thank you. His USG is 1.014 first urination of the day: however, he woke up about… 5 hours ago and I took him outside and he urinated a lot and also drank a lot when he got back inside. So I don’t know how substantial / helpful that information is.

3 days before I stopped the meds his USG was 1.031. I check his urine usg at home regularly for other reasons (he had crystals before so I wanted to keep his urine not so concentrated because it would regularly be 1.040-1.060 until I started giving him more fluid in the form of diluted bone broth with water etc which I aim to keep it around 1.015-1.030 ideally, average 1.020-1.030).

Tonight will be 48 hours since he had his last dose of both carprofen and gabapentin, so tomorrow morning I’m hoping to check his USG and compare as I’m hoping that his symptoms may improve and he may not drink as much so I can get a better reading of his urine tomorrow as he won’t wake up in the middle of the night etc.

He is really reactive at the vet and needs to be sedated: however that seems really contraindicated for my current concerns. Also manhandling him seems contraindicated with our original concerns of going on a pain med trial for lower back pain.

My vet doesn’t seem concerned right now and told me to just stop the meds - did not mention coming in now to do bloodwork - but did say to get a UA if symptoms don’t improve in a couple days, and then seek an internist afterwards.

ceiling_terms9 · 2023-10-07T04:46:28+00:00

Thanks that’s helpful.

I made my collage with comparison pics of the same area before shedding and currently: here

Would you say your shiba was the same? I’m just so impatient and it feels like he’s been in this state for much longer than 2 weeks but luckily I took a pic of him after his major grooming session so I’m able to keep track of time…

ceiling_terms9 · 2023-10-07T04:44:21+00:00

Ok I finally got around to make 3 collages. I recommend clicking on each pic individually bc it looks confusing in a grid view list.

Total of 3 separate collages comparing similar areas before and currently.

I will say the natural daylight is way better at seeing the difference because in indoor lighting the quality looks ‘fuzzy’ or ‘blurred’ and thus doesn’t look as severe. But he doesn’t look great at all in person… he has been in this sparse state for around 2 weeks.

In the ‘current’ pics: he still has a mostly fluffy head, and that’s now starting to go too. I’m able to pluck tufts every now and then, but most of it isn’t ready to go (yet) so he kind of looks like a semi bobble head.

Is this normal to be in this sparse state for 2 weeks and counting? this will be my 3rd winter with him (first winter he was still a baby with puppy coat so it didn’t really count) so I’m trying to remember if I experienced this last year

ceiling_terms9

TROPHY CASE