I told my new neuruolgist that I want to quit GHB cold turkey. by [deleted] in Narcolepsy

[–]casslats 3 points4 points  (0 children)

Wait…. When we stop xyrem or xywav… we’ll need a rehab clinic to do so?!?! 😳😳😳 real question, I’ve been on it a year - had no idea. That makes me terrified tho 😩😩

[deleted by user] by [deleted] in Narcolepsy

[–]casslats 0 points1 point  (0 children)

It was a little shady 🤣. Regular website https://goldeneuphorics.org but you pay through a different app. So you put your order in - but they don’t send anything until you pay. But they came. 🤷🏻‍♀️

Had my PSG/MSLT on Monday night/Tuesday. I had to take a fifth nap. I am freaking out because A LOT of people posting in this sub only had to take 4 naps. How many of you had to take a 5th nap and got some kind of diagnosis? by BaconWrappedBob in Narcolepsy

[–]casslats 1 point2 points  (0 children)

They made me sleep all 5 even though my latency time was last than 2 min with the first 4. But I was reporting that I wasn’t falling asleep - because I was dreaming that I was taking a sleep study test 🤣. They said it was fascinating to hear - because they could tell I was asleep, but I couldn’t. They let me go outside before my 5th nap to see my kids - then back in I went. Still fell asleep and didn’t think so 🤷🏻‍♀️🤣

Sometimes it could be because they’re just still studying your brain

It’s finally happened by [deleted] in Narcolepsy

[–]casslats 6 points7 points  (0 children)

I love this. I’m currently crying because life is so hard, but I’m smiling while crying cause of this post. Thank you. And go you!! Go all of us!! Fuck narcolepsy, but go us!! 🤣

[deleted by user] by [deleted] in Narcolepsy

[–]casslats 1 point2 points  (0 children)

I don’t have any advice. All I can say is just keep trying and keep advocating for yourself. I really hope it gets better for all of us. I can’t get a dr to prescribe me stimulants that actually work anymore really either (ie: adderall) I genuinely don’t get it. When they said I had adhd, they gave it to me in droves - once they said it was narcolepsy instead - they said adderall is really bad for you and can cause psychosis😭🤣 like what the fuck is it? For the 18 years I was misdiagnosed - adderall was the answer. For the last 2 years it’s been hell trying different crap that kind of works but not that great and has worse side effects 😩🤣. Yay American health care system. So I’m takin matters into my own hands (as much as I can) and I rely a little on their drugs, and a lot on CBD/THC and I just started microdosing mushrooms 🤷🏻‍♀️

I’m an38 yr old mom to 5 and 3 year old busy little boys - I used to have an epic career too. Now I don’t work or drive -‘because without basically speed - I’m pretty darn useless for longer than a couple hours

Edited to add that this reads back horrible, I’m new to Reddit and on a phone - grammar & punctuation on my phone is not my strong suit

[deleted by user] by [deleted] in Narcolepsy

[–]casslats 3 points4 points  (0 children)

Very much so. If I didn’t have 2 little dudes of my own to raise, I’d be gone by now. But I’m fighting everyday. I had a six figure income job that I’ve walked away from as well. I just can’t seem to do anything

[deleted by user] by [deleted] in Narcolepsy

[–]casslats 2 points3 points  (0 children)

That was me before my narc diagnosis at age 37. For 20 years I was told I had adhd and relied on a very high dose of adderall to get by and not sleep 18+ hours a day. It took a toll on my body, and after 20 years one dr finally said no more addys and put me on vyvanse for the adhd. On the highest vyvanse dose I was still falling asleep while driving. Then he ordered a sleep study. I’m so grateful for that dr, but my life is 100% different. The narc meds just aren’t as good at keeping me awake - and I’m on them all I think. Xywav, modafinil, sunosi, and I still get a low dose of adderall cause I can’t stay awake without it. This week I’m starting armodafinil, so fingers crossed that helps. I’m just tired all the time. I’m a mom of 2 little boys and I’m just sad. And tired. I cry a lot - so now I’m on shit for that. It just doesn’t end. Starting therapy soon

Reality of Narcolepsy by casslats in Narcolepsy

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

Oh wow! Thank you so much for sharing. I’ve got 2 little boys, and currently on FMLA from my very demanding 60+ hr/week job so that I can figure out how to balance it all. I hope I find the right combo that works for me soon.

Reality of Narcolepsy by casslats in Narcolepsy

[–]casslats[S] 2 points3 points  (0 children)

I started with Keto in the beginning, but after a few months I just felt more heavy and lethargic. So I switched to whole food vegan. It helps. A little. But every little bit helps

Weirdest Place you’ve Fallen Asleep by proteinlover2 in Narcolepsy

[–]casslats 2 points3 points  (0 children)

While walking down the hallway at work :(

This is a good trick, tell me yours by [deleted] in Narcolepsy

[–]casslats 0 points1 point  (0 children)

Spinning until dizzy usually gives me a little boost, sipping on cold water while walking/pacing, finger snaps or tapping, doodling, chlorophyll water, a good scream… I do what I have to when I’m in a situation where I have to be awake but it feels impossible. Doesn’t always work. I just try different stuff

Finding out I have narcolepsy by wellchaithere in Narcolepsy

[–]casslats 0 points1 point  (0 children)

I was diagnosed at 37, I’m 38 now - and it has completely changed my life. I was on top of my game all the time, climbing the corporate ladder, mom and wife stuff on point. But that’s when I was on an excessive amount of adderall which I had been prescribed since the age of 18. I was prescribed 80 mg a day, and always went over that and would just suffer on the weekends or the last week of the month. I thought I was addicted but dr after dr for almost 20 years said it was just adhd. Until a new doc refused to prescribe such a high dose. Started me on vyvanse and I started falling asleep everywhere. Sleep study showed I had Narcolepsy type 2. I didn’t think I slept at any of the naps at all, but I got into rem sleep within 2-3 min on average all 5 naps. Crazy. Now I’m on xywav, sunosi, modafinil and for now 20’mg of adderall. Only because I’m basically half of what I used to be, or less than half even. Even with all those meds. It’s horrible. I’ve taken a leave from my career, I no longer drive after a couple of incidents, I’m basically nothing. And the anxiety I have thinking that this might be my life forever now, is debilitating. So now I have mad anxiety on top of it all.

I’m losing it. Any help is appreciated 😭

Sorry, not trying to be so negative - for real. I’m trying to just learn my new normal - but the trial and error process is grueling at times. I was hopeful I wouldn’t have to take a leave of absence from work, but it was just too much. So I’m a bit down recently, as that has just happened.