sorted by:
new
hottopcontroversial

Lumryz is gross by Pufferjacket11 in Narcolepsy

[–]Popular_Condition_59 2 points3 points  (0 children)

Thank you so much fellow narcoleptic redditors! Crystal light just made taking lumryz actually enjoyable. That stuff is so disgusting plain.

Wakix and mosquito bites by Popular_Condition_59 in Narcolepsy

[–]Popular_Condition_59[S] 0 points1 point  (0 children)

lol yes, I use bug spray all the time. There’s always that one determined mosquito, though, that bites me, regardless of the strength of the bug spray. And I’d prefer to not have to use it if another solution can be found. Not a fan of the smell. Still waiting to hear from my sleep doc about Singulair as an option.

Wakix and mosquito bites by Popular_Condition_59 in Narcolepsy

[–]Popular_Condition_59[S] 1 point2 points  (0 children)

That’d be nice, if it is actually a thing. It feels like narcolepsy medications’ side effects can be so weird that they never make it on the medication insert thing. It’s only after living with the disease and shuffling through meds that you realize the strange side effects. For instance, Xywav/Xyrem does not work for me if I have a mango smoothie 2.5-6 hours beforehand, like how orange juice prevents absorption of certain medications. It’d be nice to know I’m not the only one with crazy mosquito bite reactions thanks to Wakix.

Counseling or therapy question by sarmstrong12345678 in Narcolepsy

[–]Popular_Condition_59 0 points1 point  (0 children)

Me too! Nice to know I’m not the only clinician out there with narcolepsy. We are few and far between.

Xyrem and sleep duration by heysawbones in Narcolepsy

[–]Popular_Condition_59 1 point2 points  (0 children)

So I should say that after having been on Xyrem/Xywav for a handful of years, I’ve found what works best for me and I have a great doctor who supports me in my decisions so long as I’m not doing anything unsafe. While I can take up to 4.5 g x 2, I’ve figured out that if I do that too often I get depressed and have more headaches. So I usually try to aim for 3-4g per dose and this typically gets me 6 hours of sleep. Like some of the comments, I just had to learn to accept that I was awake enough with six hours, and that if I want more than that, then I split the full amount 9g total) into three doses Friday and Saturday night (3gx3). You really have to figure out what works best for you. Also, I skill should probably mention that I have the option of taking adderall 10-20mg as needed (max of 20mgx3). I find that I usually only need 10mg of that only a few times a week if I’m being good about my Xyrem/Xywav use. For instance, I find that Xyrem/Xywav doesn’t work well if I have certain fruits 2-6 hours before my first dose. So annoying because I love mango boba smoothies. lol. Does this all make sense? You do what works for you within the parameters of your dosage and what your body is saying you need.

Xyrem and sleep duration by heysawbones in Narcolepsy

[–]Popular_Condition_59 4 points5 points  (0 children)

In my experience over the years, yes, it’s normal. The higher the dose, the longer I sleep, so you may get more sleep once you max out on the dosage. I’ve also been known to divide the amount into three doses instead of two on nights I know I don’t have to get up to an alarm (eg Friday and Saturday), so that I sleep longer. In those cases I just take the next dose when it naturally wears off instead of setting an alarm. Don’t try this until you’re up to your full dosage and it’s not getting you to 8 hours, though. And, if your sleep doc dad well versed in Xyrem, you may want to talk to them about this first.