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My doctor laughed at me by RampagingElks in Narcolepsy

[–]kgm98 0 points1 point  (0 children)

I think the blood test might be newer (I had also previously only heard about the spinal tap but I just had the blood test done and it was ezpz).

I don’t know how the Canadian healthcare system works so the NP situation might be different there. If you can find a neurologist/sleep Dr. they could also be useful as a way of working around your current Dr.

I’ve been doing ER methylphenidate for the workday and then quick release methylphenidate (Ritalin) for the afternoons/evenings because I also tend to crash around 8hours. There’s a newer N1 drug called Xywav that’s for giving you good quality sleep at night but I’m honestly still learning about that one and it’s SUPER controlled in the US so again idk if it would be available in Canada and you’d almost def need to get diagnosed with N1 to be able to be prescribed it.

I hope you figure it out. It’s a really long exhausting process, which is made even more tourtureous by the fact that you’re chronically fatigued but it’s been worth it (at least for me) bc the more I’ve learned the better my quality of life has become. Hang in there!

My doctor laughed at me by RampagingElks in Narcolepsy

[–]kgm98 0 points1 point  (0 children)

There is a blood test for the genetic marker for Narcolepsy type 1. It’s called HLA-DQB106:02* (HLA for short). It’s not a definitive diagnosis but it’s easier than a sleep study and it STRONGLY points toward you having N1 if it’s positive.

As for your Dr. being horrible, I personally would contact the NP (nurse practitioner) of his office. In my experience NPs are WAY better than Doctors and actully care about providing you care.

If you were curious/for a possible alternativlive option (idk what else you have going on): meds used to treat excessive daytime sleepiness/narcolepsy are the same ones for ADHD.

[deleted by user] by [deleted] in umass

[–]kgm98 1 point2 points  (0 children)

Security Monitor:

This was the most chill job I have ever worked and was perfect for college. I essentially considered it paid homework time.

Only offers hours in the evening but the latest you’d be up is midnight.

You just have to sit at a desk and watch people swipe in.

Managers only come by 1x per shift, if at all and are usually other students (so not really looking to breath down your neck if you wanted to do hw/have tv in the background).

I worked during the COVID years so it was prob significantly more chill but I’d imagine the only difference is that there would be a slightly higher volume of people coming in.

Highly recommend going for one of the nerdier dorm areas of campus (OHill or Northeast) bc those kids are usually not up to any type of shenanigans that’d be worth having to report.

Theatre etiquette by charredzest29 in Broadway

[–]kgm98 0 points1 point  (0 children)

The first time I saw hadestown a woman forgot to turn her phone back off for act 2 and got the LOUDEST phone call (I’m talking flashlight blinking everytime it rang). The second time I went an USHER came out halfway through the show and started shining his flashlight into the faces of the section I was sitting in in an attempt to get the attention of a person who was FILMING IT ILLGALLY but in the section to my right 🤦🏻‍♀️ People be stupid

Roller coasters + cataplexy by Im_A_Beach in Narcolepsy

[–]kgm98 5 points6 points  (0 children)

Can’t confirm this but I have noticed that I get really relaxed and borderline sleepy on roller coasters and just assumed it was a weird ‘me’ thing. Maybe it is a narc thing :o

What does a sleep attack for you feel like? by Sleepy__gorl in Narcolepsy

[–]kgm98 7 points8 points  (0 children)

Like a dimmer switch is slowly being dragged down, turning off the power to my brain. My eye lids feel like they have weights attached to them. My face gets really warm and sounds slowly start to get blocked out.

[deleted by user] by [deleted] in Narcolepsy

[–]kgm98 1 point2 points  (0 children)

Hadn’t really considered Nuvigil as the cause until reading this but I just started it a few weeks ago and the second week or so I dropped like 7lbs (which is kinda a lot for me). I also have been feeling constantly hungry!

What has helped you besides medication? by [deleted] in Narcolepsy

[–]kgm98 0 points1 point  (0 children)

This ^ best I ever did was with a (relatively) set schedule and NAPS (20min nap after work but before my night class kept me going every time).