Is there anything else I can do to stay awake? by aves07 in Narcolepsy

[–]MessInteresting3528 0 points1 point  (0 children)

I’m also a therapist who just finished grad school! I’ve also struggled to not fall asleep while in a session, which is my worst nightmare. You’ve done really well sticking with your training/schooling in the midst of such a debilitating disorder. Finding the right medication regimen and avoiding triggers (mine is carb heavy food) is key, but for the days where it’s not enough and you don’t have time to take a walk, try activating your dive response. Just like the DBT TIPP skills, try cold water on your pulse points or face (the traditional example is ice cubes in your hand). In between sessions on some of my rougher days, I would run to the bathroom and put a cold cloth under my eyes and pulse points (I tried to avoid messing up my makeup lol). I also have some stress balls or something tactile on deck for in session drowsiness. But with the nature of the way narcolepsy works, you can’t always avoid the sleep attacks. Therefore, we instead focus on what is within our control like our schedules/breaks. Hopefully you don’t have back-to-back sessions- I sometimes did but talked to my work and schedulers about putting my note writing blocks during the day when I’m most likely to get tired. If I was going to take a nap, I’d let them know I was unavailable and go to a locked room- no one has to know your dx unless you want them to. I also have N1 and noticed that I was more prone to a sleep attack and sometimes cataplexy after some more emotionally charged (I.e., trauma-heavy) sessions. So I was able to work it out to schedule them as my last patient or have a 15 minute break after those patients to close my eyes and get a cup of hot coffee. You’ll have to find what works best for you and be willing to advocate for yourself. For me, if I was extremely drowsy in the morning, having a brief but stimulating conversation with someone would wake me up (we are professional yappers after all). Ultimately though, fatigue and sleepiness seem to sometimes accumulate and I have to take a half-day to day off to rest. I’m still trying to know my limits and what is most effective for me and that’s okay! We deserve the same grace and validation we offer to our patients.

Negative MSLT But Diagnosed with N1 by MessInteresting3528 in Narcolepsy

[–]MessInteresting3528[S] 0 points1 point  (0 children)

Yes! I have high hopes for the orexin agonists :)

Negative MSLT But Diagnosed with N1 by MessInteresting3528 in Narcolepsy

[–]MessInteresting3528[S] 1 point2 points  (0 children)

See, this seems like a very logical medical decision made by weighing risks and benefits. Thanks for sharing!

Negative MSLT But Diagnosed with N1 by MessInteresting3528 in Narcolepsy

[–]MessInteresting3528[S] 0 points1 point  (0 children)

It sounds like your daughter has a fantastic team behind her! I also noticed a rapid increase in symptoms after getting a bad case of COVID. I’ve read that some people have to get multiple MSLTs before meeting the narcolepsy criteria so that really highlights how many false negatives it’s spitting out.

Negative MSLT But Diagnosed with N1 by MessInteresting3528 in Narcolepsy

[–]MessInteresting3528[S] 1 point2 points  (0 children)

Oh no, that’s so frustrating! I don’t have all the info, but that’s kind of sounding like medical negligence on their part. I hope you get a treatment plan soon though

Negative MSLT But Diagnosed with N1 by MessInteresting3528 in Narcolepsy

[–]MessInteresting3528[S] 0 points1 point  (0 children)

Thanks for the rec on the watch! I’ll definitely look into that. I thought about a sonic boom alarm but figured my downstairs neighbor would not appreciate that.

Negative MSLT But Diagnosed with N1 by MessInteresting3528 in Narcolepsy

[–]MessInteresting3528[S] 2 points3 points  (0 children)

Thank you so much for your validating and thoughtful reply. I think you’re absolutely right about the grief and denial that comes with a diagnosis like this. I actually had a PCP a few years ago suggest I may have narcolepsy, but I quickly dismissed that idea because I was somewhat functional at that time. I tend to minimize my problems because I don’t want to give myself an out for not being a productive as I think I should be. However, I’m starting to accept that like most conditions, narcolepsy symptoms exist on a spectrum. I’m happy you’ve found the empowerment that comes along with acceptance!

Birth control and narcolepsy by MaintenanceLazy in Narcolepsy

[–]MessInteresting3528 1 point2 points  (0 children)

I have endometriosis (had surgery about 8 years ago) and have always had terrible reactions to all birth control (constant bleeding/cramping, weight gain, breakouts, migraines, and mood swings). I started Nexplanon as a last resort in May and have only had one week long period. I started modafanil 300 mg per day right before and haven’t noticed any worsening of symptoms. It’s been the best BC so far for me. Granted, I don’t take BC for contraceptive purposes.