u/erj888

Yesterday I had my very first appt for N2 and got prescribed Sunosi. I walked away feeling like I was on cloud 9 thinking that as soon as the pharmacy filled it tomorrow, I could finally make progress toward not feeling miserably exhausted like I have for every single moment of my life as far back as I can remember

Then I found out the price of Sunosi and cried last night. Idk if I’ll be able to afford it at all but even if I can, it’s going to take a hot minute to sort that out so I’m not going to be starting it tomorrow like I previously thought

➡️** Does anyone have any sort of insight whatsoever on anything related to this? Whether it’s about affording Sunosi, or the alternatives to Sunosi, etc? I’m in the dumps r**n

Idk what my options would be for alternatives to Sunosi. When the doc talked about prescribing me that he focused a lot on how (1) the *ONLY* narcolepsy symptom I have is (severe) EDS- I don’t have even the tiniest hint of any other symptom, and (2) I tolerate Adderall well. So he doesn’t want to spring for sodium oxybates (and neither do I). And I’m scared of the modafinil/armodafinil bc it seems like those can be pretty harsh to get onto in terms of side effects and everything?

Also unsure about the financial aspect rn. My Rx coverage is through a 3rd party program, not my actual health benefits from my employer, and that program makes you pay the difference btwn the brand price & generic price if a generic is available and you choose to buy the brand name… but there is no generic available for Sunosi so idk what that means for coverage yet. And idk yet if I’m eligible for the Sunosi discount card bc of who my employer is, but since my Rx coverage is through a 3rd party instead of directly through my health benefits, maybe that will save me (?). So many question marks rn

I’m 24 and just got diagnosed with narcolepsy w/o cataplexy (my MSLT results = 2.5 minute avg sleep latency & 4 SOREMPs). Until now, my tiredness has been chalked up to Chronic Fatigue Syndrome associated with my hEDS/POTS (aka I’ve always been made to feel like it’s my fault that I’m so tired bc I’m just too lazy to work out enough).

The narcolepsy diagnosis has come as a big surprise to me and it’s kind of overwhelming bc I’m already going through a lot of life changes right now. I just graduated law school and took the bar exam, I’m starting my first full time job next week, and now I’m finding out I have narcolepsy.

Now I’m stalking this page and I have a couple questions that I would love any insight on. And if anyone has any other tips or experience to share, I’m all ears!

(1) ADHD stimulants vs narcolepsy “wake promoting agents” ?

I’ve been prescribed Adderall for a while to help me stay awake but my doctor said I’ll probably switch to a “wake promoting agent” that’s actually designed to treat narcolepsy. Has anyone had experience with both types of meds, and if so, does the wake promoting agent help a lot more than the ADHD stimulant? (I’m really hoping the answer is yes)

(2) Memory problems?

I’ve always had a bit of brain fog but I started having memory problems in the past year or two, and that’s what eventually led to me getting a referral for a sleep study. Does anyone else have memory problems (beyond the classic brain fog issue) because of narcolepsy? Has narcolepsy medication helped with that?

(3) Tips on just functioning every day?

I’ve been in school my whole life until now and I’m nervous to be starting my first full-time job. I can get through a full day of school/work, but i never have enough energy to do anything like exercise or run errands before/after that, and then I have to sleep all weekend to be able to get through the next week…

I’ve read that quick 15-20 minute naps can help with daytime tiredness, but I’ve literally never felt worse than when I’ve had to take short naps like that. Naps can help me feel better if they’re about 2+ hours, but that’s obviously not practical. Does anyone have tips on how to make it through the day?

Thanks in advance if anyone has any insight or advice! 🫶

I’m a first time watcher on s2e7 and just watched Karen open up about being assaulted in college. Per the title, I’m bawling my eyes out right now. Her description of what it was like for her and how it affected her just hit the nail on the head with something I’ve never been able to put into words.

I just wanted to give her props for being so vulnerable and sharing that on tv. I have to commend Karen for how much courage that took. I really appreciated Karen and the show addressing such an important and difficult topic

Disclaimers:

(1) I know nothing about RHOP besides what I’ve seen so far and I never rush to assume early on that any housewife is an outstanding person who will do no wrong in the future. I wanted to acknowledge Karen for this particular moment though

(2) I wasn’t sure if the NSFW tag was needed bc it’s not explicit or anything, but I chose it just to be safe bc it’s a sensitive subject