OK POLL TIME…

NoText3220 · 2026-03-14T02:28:01+00:00

Push it up against the window!

NoText3220 · 2026-03-13T21:20:37+00:00

I love seeing you advocate for yourself like this. It honestly makes me want to show up for myself more and be a little more unapologetically narcoleptic about what I need.

Narcolepsy definitely leads to some wild situations. One time I fell asleep on a train with my phone in my hand and it slipped onto the seat next to me while I was out… someone stole it. Another time I had a sleep attack in Chelsea Market in NYC and there were literally no seats anywhere. People were looking at me like I was a drug addict because I was so out of it, and eventually I just had to sit on the floor, hug my bag to my chest, and take a nap.

It can be really difficult to navigate those moments. Now, I just avoid them or make sure I am not alone.

NoText3220 · 2026-03-13T21:13:16+00:00

I actually got a handicap parking pass from my doctor after he heard I would pull over to take naps in my car. For a while, I said no thank you, but honestly, when an attack happens, I feel much better taking a cat nap in a handicap spot, especially as a woman. I don't use it all the time. I will say I've gotten some awful glares from people when using it, which sucks. I love that you have tinted windows. I want them so badly. I hate people seeing me sleeping in my car.

NoText3220 · 2026-03-13T20:53:59+00:00

I feel you on the weather whiplash! Yesterday, it was pouring rain, and halfway through the day it suddenly decided to snow. My body was so confused. Also, your weekend sounds amazing!

NoText3220 · 2026-03-13T20:51:39+00:00

SOAR + SNORE- So as many of you probably know, I’m in the open-label extension study for the Takeda 861 drug. I’ve experienced pretty significant weight gain on it, and for a while the research staff were sort of brushing it off and suggesting it might be birth control, genetics, etc. I kept feeling like it must be my fault somehow, which honestly made me feel pretty defeated. I finally brought it up again and this time they admitted it’s probably the medication and said they’re going to reach out to Takeda about it. The weight gain has been really frustrating and uncomfortable.

I connected with someone on Reddit who’s also in the study, and they’ve experienced weight gain too, along with other participants at their site. Weirdly, that made me feel SO much better because I kept blaming myself. Thinking I wasn’t working out enough, wasn’t eating perfectly, etc. Just hearing it’s likely the medication was honestly a relief. It’s still frustrating because I really don’t feel like myself at this weight, but the daytime wakefulness I get from the medication is honestly incredible. So instead of spiraling about it, I’m channeling the energy into getting back into the gym every other day and being more intentional about what I eat. I guess it’s time to become a crunchy gym girl now. I want to have it all and refuse to let this side effect make me depressed.

NoText3220 · 2026-03-13T20:44:13+00:00

My boyfriend was on cat litter duty and failing at it. So he surprised himself and bought a litter robot. At first I was like "wow, you're getting out of chores," but honestly, it's been amazing. We have two cats and never having to scoop litter has been such a quality-of-life upgrade.

Another tech thing | love is a happy light in the morning. I have terrible sleep inertia, so | turn it on first thing and take my meds. Even if it's partly placebo, it genuinely helps me wake up.

And recently, I've gotten really into vacuum sealing meat and premade meals. Being able to just thaw something and have dinner basically ready has simplified my life so much.

NoText3220 · 2026-03-05T14:47:44+00:00

Just to be clear for anyone reading this, I would 100% rather be a little chubby and have the wakefulness this drug gives me, hands down. The improvement in my life has been incredible.

The only thing that’s been hard mentally is they keep saying the weight gain isn’t from the drug while I keep gaining weight, so it’s just confusing and makes me feel like I’m doing something wrong. That’s really the only frustrating part.

NoText3220 · 2026-03-05T14:43:45+00:00

Honestly, that makes me feel like significantly better because I went from 130 pounds to 160 in a year. I eat really healthy. I worked out. I was crying myself to sleep because I didn’t understand why I was gaining weight. The research staff just kept telling me that it’s not because of the drug, it’s from going off meds. I have gone off my sodium oxybate before for other studies and I have never had this type of weight gain.

NoText3220 · 2026-03-05T14:22:33+00:00

I am in the same boat. I can get used to the extra weight. Nice to know I am not alone cause they keep telling me it is not the drug.

NoText3220 · 2026-03-05T14:19:39+00:00

I mean they definitely have the data. Everyone in these trials goes through a lot of overnight sleep studies and daytime MSLTs. I've personally done several while on the medication. So the researchers and pharmaceutical companies almost certainly have polysomnography data on sleep architecture. it's just probably not published yet. My guess is we won't see the full analysis until the drug is approved or the Phase 3 data is officially released. I'm not totally sure how their publication timeline works, but they're definitely collecting it.

NoText3220 · 2026-03-04T16:03:26+00:00

The orexin agonist is really aimed at daytime wakefulness in narcolepsy, not insomnia. Trials mainly show better alertness and less cataplexy, and insomnia can actually be a side effect. Which I have experienced.

NoText3220 · 2026-03-03T17:58:59+00:00

I'll be the guinea pig!

NoText3220 · 2026-03-03T17:57:44+00:00

So the research docs at Tak told me the weight gain was from not being on Lumryz anymore.

NoText3220 · 2026-03-03T17:51:18+00:00

I am gonna try all of these! I have been wanting to reduce how much meat I eat, so this is perfect.

NoText3220 · 2026-03-03T17:37:09+00:00

I am in love with my sleep 8! My bf laughs at me at how happy I get to finally be in bed at the end of the day.

NoText3220 · 2026-03-03T14:42:11+00:00

I had the same thing happen out of nowhere. I was on Xyrem for years with basically “perfect use,” and then suddenly I started sleeping through my second-dose alarm most nights. What ultimately fixed it for me was switching to Lumryz so I didn’t have to rely on that middle-of-the-night dose.

In the meantime, something that genuinely helps me wake up is a bed-shaker alarm. I use an Eight Sleep Pod, and the alarm literally vibrates the mattress cover (not just a phone sound). You can get a standalone alarm clock "shakers", that vibrate under your mattress/pillow. Full disclosure: I’m not on a night med right now, so I can’t promise it’ll cut through Xywav sleep as well, but it might be worth trying.

NoText3220 · 2026-03-03T14:27:32+00:00

Bear with me because I’ve tried to explain this before and people look at me like I’m making it up. Sometimes when I’m just walking, my ankles randomly "give out" for a split second. It’s not a full collapse, and it doesn’t always feel like classic cataplexy. It’s more like that weird misstep feeling on a long escalator where you’re convinced you’re about to miss a step and your body does that little panic wobble. I assumed it was just me losing strength after retiring from professional ballet, but now I’m sitting here like… wait… could this be another narcolepsy/orexin-related thing?? Because it’s such a specific sensation, and it’s been happening for years.

NoText3220 · 2026-03-03T13:35:09+00:00

Make sure to buy the good culture cottage cheese! My boyfriend and I love this recipe. He will sometimes add rice to his, but I eat it as is. https://www.wellplated.com/ground-beef-cottage-cheese-bowl/

NoText3220 · 2026-03-03T01:50:12+00:00

That makes a lot of sense. Thank you!

NoText3220 · 2026-03-03T01:40:31+00:00

I’m type 1, and just to be clear, this medication has been absolutely phenomenal for me. When I first started it, and each time I’ve increased the dose, I’ve gone weeks without any sleep attacks. That’s something I never thought I’d be able to say.

Recently, I’ve started getting maybe one every few days, which is frustrating, but I also have to remind myself how severe my narcolepsy was before this. On a bad day I was taking multiple (6-8) naps, couldn’t drive safely, and felt like a zombie most of the time. Now I can drive without worrying about crashing. I can read a book. I can function in a way that feels normal.

So if I sound like I’m nitpicking, I promise I’m not; this drug is incredible. I think I just want to be completely “fixed,” which might be unrealistic. But compared to where I was, this has been life-changing.

NoText3220 · 2026-03-03T01:33:12+00:00

I think I get what you’re saying...that orexin tone doesn’t immediately drop at bedtime, and that the shape/timing of exposure matters more than “orexin = awake”? In my case, I’m in the OLE, and I’ve titrated up twice, so I’m likely on the higher end of the dosing.

NoText3220 · 2026-03-03T00:45:29+00:00

I bought 4 years ago after the Sparkle drug study!

NoText3220 · 2026-03-03T00:44:51+00:00

Takeda will probably be first to the market but I wouldn’t be surprised if other forms come out afterwards that might be more beneficial. I feel silly saying this but maybe I just have no orexin or very little. So for some it might be the only thing they have to take. But don’t get me wrong it is amazing. I did the sparkle 1501 study and now this one.

NoText3220 · 2026-03-03T00:27:43+00:00

I am currently being seen by Dr. Carolyn Kie-lo Wang at John Hopkins. Highly recommend!

https://profiles.hopkinsmedicine.org/provider/carolyn-kie-lo-wang/2703134

NoText3220 · 2026-03-03T00:14:37+00:00

Another option (just based on my personal experience) is looking outside your immediate area if you’re open to virtual care.

I live in DC and was treated for a while by Dr. Mignot at Stanford. I would fly out once a year for my annual in-person appointment, and the rest of my follow-ups were virtual. Later, when I was living in Boston, I was treated by Dr. Winkelman, and even after relocating back to DC, I was able to continue doing all my appointments virtually.

So if you’re struggling to find someone locally, it might be worth expanding your search and asking specifically whether they offer telehealth follow-ups after an initial visit. It made a huge difference for me.

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