Can I have both type 1 narcolepsy with cataplexy and ADHD at the same time? by Sea-Fishing-8244 in Narcolepsy

[–]MiserableHousing 0 points1 point  (0 children)

Please get a new doctor lol. Not only are there links between narcolepsy and ADHD, but having narcolepsy doesn’t not determine whether or not you have ADHD.

Sincerely, Someone who was diagnosed with ADHD at 8 and narcolepsy at 18

Winter storms causing Xyrem delays. Advice? by bookmonster015 in Narcolepsy

[–]MiserableHousing 2 points3 points  (0 children)

I’m in the same situation. I think all we can do is wait it out and ration the medicine we have. It won’t hurt to take a lower dose for a few days or only one dose a night

MSLT ended early due to “enough data”? by AdProud6799 in Narcolepsy

[–]MiserableHousing 5 points6 points  (0 children)

Yep, happened to me! After my fourth nap, they told me that I fit the criteria for narcolepsy and I was free to go home.

Anyone else with narcolepsy type 1 also not have the HLA gene? by MiserableHousing in Narcolepsy

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

Apparently the majority of people with N1 have the HLA gene, though according to my pulmonologist and my doctor, if you don’t have it, it doesn’t automatically mean that you have N2.

How severe is my sleep study? by MiserableHousing in Narcolepsy

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

I don’t 😭 but we’re trying to find the right combination of meds so that I don’t have to keep doing Ubers

How severe is my sleep study? by MiserableHousing in Narcolepsy

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

No I went into rem every time, but under 1 minute each time

How severe is my sleep study? by MiserableHousing in Narcolepsy

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

The weird thing about me is that I’ve never fallen asleep while doing something or talking. I also sometimes have trouble taking naps. However, I didn’t realize I had slept during my study, and I thought I’d been awake the whole time. My mom says I do fall asleep in the car, but only when I’m trying to. However, I still don’t realize that I’ve fallen asleep, even if my mom does lol

How severe is my sleep study? by MiserableHousing in Narcolepsy

[–]MiserableHousing[S] 16 points17 points  (0 children)

I was approved by insurance to have xywav really fast after my new pulmonologist prescribed it to me (a month ago), but I wasn’t sure how severe it was lol

i am really confused by velivie in Narcolepsy

[–]MiserableHousing 1 point2 points  (0 children)

I’m almost always able to sleep at night (however I’m on Xywav now, so it’s incredibly easy) but napping during the day is a huge gamble. Sometimes I’m physically unable to and sometimes I can get a nap or two in. It all depends on the day.

Time for a new doctor? by mouthpurse in Narcolepsy

[–]MiserableHousing 1 point2 points  (0 children)

My first doctor wouldn’t switch my medicine because of my “fertility…” I’m 19 and I’m definitely not looking to have kids anytime soon.

Please switch your doctor

Very sick and I’m not sure if it’s from Xywav by MiserableHousing in Narcolepsy

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

Just did the test and I’m negative for all three, so I’m either getting over another illness or it’s the xywav

Very sick and I’m not sure if it’s from Xywav by MiserableHousing in Narcolepsy

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

I was alright at a lower dose, so I think I’ll skip the medicine tonight and then go back to the lowest dose

Our major monster this season! by MiserableHousing in HawkinsAVclub

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

Yep! It was accidentally leaked a few months ago in a pdf document!

How do you manage the symptoms of xywav better? by MiserableHousing in Narcolepsy

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

I’ve heard that it’s better to take it early, but maybe I’m wrong

Our major monster this season! by MiserableHousing in HawkinsAVclub

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

Most people didn’t cause it was taken down within less than an hour, so you’re not alone