1 reply to this topic

[austeenob]

1) Does anyone else get sad about Narcolepsy?

2) Have had narcolepsy for 2 years now, since i was 18. Will it get worse?

3) I've been taking on Xyrem for a month or two now, cataplexy is gone. But will the body fatigue/ daytime sleepiness attacks go away?

4) What are these peppermint smellers that wake you up all about?

5) After waking up in the morning from Xyrem ever feel like you need to go back to sleep but you can't, and should you?

6) Whats YOUR magical time to go asleep on Xyrem?

7) How long are your naps?

8) I don't like Nuvigil with Xyrem because of the side effect, ex. bowel movement issues, lack of hunger till it wears off, headaches, body fatigue still, weird thoughts. Should it be taken anyway?

9) Does Xyrem cause me to be less social and more paranoid and anxiety driven, maybe meaner? Also is anyone gaining weight in the fac but loosing body fat?

10) What are the best tips for the longest sleep on each dose of Xyrem?

11) Does anyone play high-level sports still with narcolepsy?

12) Has anyone seen a MAJOR improvement with narcolepsy on Xyrem for months and months?

13) What are your work hours that work best for you with narcolepsy?

14) Did we do this to our selves or was narcolepsy inherited?

15) Does anyone have success stories?

16) Hopefully there is a cure for narcolepsy someday, along with every other illness/disorder!

17) Sometimes I get sad that i don't have the energy like I used to, Sometime i feel like i have the energy just not for long. Does being in shape with Narcolepsy, benefit OR diminish the effects?

18) Sometimes I get sad that I can't go out and do an all nighter, play all day sports (anymore like I did 2 years ago), be as athletic, or be able to do anything a normal person does, without be constantly fatigued or having a short span of time with full energy, won't be able to go to night clubs, can't drink (fine with that) & it saddens me alot, anyone get sad, WILL IT GET BETTER??

19) I've heard that Xyrem takes months over time to get rid of all the 'sleep debt' to be able to go a full day of no naps, is this true?

20) Does anyone else get upset, because family members, friends, co-workers, and the everyday normal person never understands what narcolepsy is really about?

21) Sometimes I feel alone and unlucky that I have this, and hope it gets better and not worse. Normal?

22) Etc. Etc. Etc.. ( Let me hear any other advice, statments, comments, questions or topics you have in mind!! )

[Megssosleepy]

I don't have time to fully reply but I will tomorrow... I think you will find the answers to some of your questions if you read through some of the other post. There is a post all about Xyrem that I learned a lot from... Ive only been on xyrem just under 2 months, I don't mind the side effects so much so I am going to keep trying and will hopefully be able to answer more of your questions in a few months time!

Like I said I'll be back!