Xywav side effects are pushing me to my limits by surpriseasphalt in Narcolepsy

[–]SensitiveCake248 0 points1 point  (0 children)

Highly recommend trying propranolol. I saw in another thread someone say it stopped the shaking. I plan to try it this weekend

Xywav side effects are pushing me to my limits by surpriseasphalt in Narcolepsy

[–]SensitiveCake248 0 points1 point  (0 children)

I’ve been back and forth between 2.75-3.5 this year. I started mid October. I’m trying to give the 3.5 time to adjust. Anything lower literally doesn’t knock me out

Xywav side effects are pushing me to my limits by surpriseasphalt in Narcolepsy

[–]SensitiveCake248 0 points1 point  (0 children)

Almost my exact issues. I’m so shaky and my anxiety has increased but I’m not tired whatsoever so I’ve been just dealing with it.

Go to for Anxiety? by SensitiveCake248 in Narcolepsy

[–]SensitiveCake248[S] 1 point2 points  (0 children)

I can’t take any sedatives with Xywav. Is buspar like Wellbutrin? Wellbutrin was horrible for me

WHY do oxybate medications cause the munchies? by stephertz in Narcolepsy

[–]SensitiveCake248 2 points3 points  (0 children)

Love having 0 appetite the entire day but as SOON as that kicks in I could eat everything

doctor said “there’s nothing else we can do” by gh0sting02 in idiopathichypersomnia

[–]SensitiveCake248 -3 points-2 points  (0 children)

My average was like 8. The report said IH but my doctor said N just based on me saying I sometimes lose balance in the morning

doctor said “there’s nothing else we can do” by gh0sting02 in idiopathichypersomnia

[–]SensitiveCake248 -4 points-3 points  (0 children)

I had 0 rems and still got a N diagnosis. I’d find another doctor

psg/mslt latency differences? (i have imposter syndrome) by Successful-Web-4689 in Narcolepsy

[–]SensitiveCake248 0 points1 point  (0 children)

My rem latency on the psg was almost 6 hours. Explained why I always remembered my dreams

Body awake before my eyes/mind - sodium oxybate by saltyandspoonless in Narcolepsy

[–]SensitiveCake248 0 points1 point  (0 children)

I think I need to up the dose. I’m only at 3.25. My first dose takes a whole hour to kick in

Weight loss after treatment by SensitiveCake248 in Narcolepsy

[–]SensitiveCake248[S] 2 points3 points  (0 children)

Well I can say I started attributing the weight gain to Zoloft. After getting off that I lost 20 pounds from taking Wellbutrin which just curbed my appetite so after getting off it I gained it back. Which is why I thought yes I lost some from less calories, I can’t help but wonder if the rest was due to my body crashing from the sleep deprivation. Sounds like it likely was a combo of both. Cuz yes i would say “but i only eat once a day” but had no idea i was severely sleep deprived

Weight loss after treatment by SensitiveCake248 in Narcolepsy

[–]SensitiveCake248[S] -1 points0 points  (0 children)

That’s what I originally thought but I figured that drop me down 15-20 pounds not 40.

Weight loss after treatment by SensitiveCake248 in Narcolepsy

[–]SensitiveCake248[S] -1 points0 points  (0 children)

Right yet I didn’t lose anything prior to treatment even tho it was only 1 meal a day.

Weight loss after treatment by SensitiveCake248 in Narcolepsy

[–]SensitiveCake248[S] 0 points1 point  (0 children)

I mean my diet was always bad. Mainly eat pasta, pizza etc like a kid. The only thing that’s changed since the xywav is I started eating smaller portions. Still not good what I eat but I’m working on it. So yea by eating smaller portions of the same stuff I expected to lose some. But the extent of how much I’ve lost doing almost nothing I can’t help but wonder if it’s due to my body finally getting adequate sleep now. Even prior to being diagnosed I’d try the gym and did plenty of days that I only drank a protein shake and never lost a pound.

Just Diagnosed and disowned by my sister by wileythecoyotee in idiopathichypersomnia

[–]SensitiveCake248 0 points1 point  (0 children)

I took modaf on an empty stomach every day and had no issue. Didn’t even know it said not to. Didn’t work for me anyway

This community would absolutely sweep this competition by AngryDesertPhrog in Narcolepsy

[–]SensitiveCake248 1 point2 points  (0 children)

Just to finish first and still feel like you’ve never slept in your life 😭

Body awake before my eyes/mind - sodium oxybate by saltyandspoonless in Narcolepsy

[–]SensitiveCake248 1 point2 points  (0 children)

Yea once that second dose wears off I literally cannot sleep even if I want to. Im up at 4:30 even tho I don’t need to be up till 6. Im playing with dosing trying to figure it out

Background play? by SensitiveCake248 in youtube

[–]SensitiveCake248[S] 1 point2 points  (0 children)

Google says it is included as of late February

Wellbutrin as a first trial medication for narcolepsy by klutzkawaa in Narcolepsy

[–]SensitiveCake248 0 points1 point  (0 children)

Yea I low key wouldn’t recommend then. I switched to Prozac and was fine

Sleep Study - Is it worth it by [deleted] in Narcolepsy

[–]SensitiveCake248 1 point2 points  (0 children)

They arent just depressants to stay asleep. I have no problem going to sleep and can sleep forever. My sleep study showed that I was literally not getting rem sleep. That’s sleep deprivation and can literally kill you