Narcolepsy Support Group

Hi everyone, my name is Emily, i just joined this site because two days ago i was diagnosed with narcolepsy. I have no one to talk to about it because no one in my area seems to have much information on the disorder, and all of my friends and family seem to think I'm exaggerating/its a made up condition/im just lazy.

I'm curious to find out how other people have dealt with narcolepsy, and maybe connect with some people who understand what its like.

Also, I'm still figuring out how the site works, so if anyone wants to explain to me how it works that would be great

Hope to talk soon!

Welcome to the group, its very nice to meet you. This is a wonderful site for support. There are groups for many disorders if you want to post in them just click join like you did for this one. Navigating through the site is easy. When I want to find a specific group I click on Online Support Groups at the top and click on the letter of what I am looking for. While in the group youcan look at all the discussions or even start a new discussion of your own within that forum. The most common forum to discuss stuff in is General. If you ever have any questions please feel free to ask me. I am always here and understand how you feel, I feel the same way/ Once again welcome. I look forward to hearing more from you.

Have they put you on any medications yet?

Thank you for being so welcoming

I was just given the diagnosis on tuesday. I had been on concerta already for adhd, but since it hadn't made a difference in my sleepiness the doctor took me off the concerta and gave me a one-week supply of provigil to try out. I've only been taking it for two days and its sort of hard to say if I feel any better...I'm not sure what to expect from it. How did the provigil affect you?

Thank you for being so welcoming

I was just given the diagnosis on tuesday. I had been on concerta already for adhd, but since it hadn't made a difference in my sleepiness the doctor took me off the concerta and gave me a one-week supply of provigil to try out. I've only been taking it for two days and its sort of hard to say if I feel any better...I'm not sure what to expect from it. How did the provigil affect you?

Thank you for being so welcoming

I was just given the diagnosis on tuesday. I had been on concerta already for adhd, but since it hadn't made a difference in my sleepiness the doctor took me off the concerta and gave me a one-week supply of provigil to try out. I've only been taking it for two days and its sort of hard to say if I feel any better...I'm not sure what to expect from it. How did the provigil affect you?

Woops haha didn't mean to post so many

The Provigil doesnt work well for me at all. I just went for yet another sleep study and MSLT because it may be a bit more severe so i have to wait and see what I will be taking in the next few days. Hopefully the Provigil will give you some relief. Do you suffer from just the sleepiness or do you knock right out like I do? I pass out all over the place, I havent been able to drive since jan of last year.

Oh my god no I don't have the sleep attacks, I've always been able to get to a bed when I need to sleep...I can't imagine how rough it must be to fall asleep involuntarily. I'm just a student right now but I'm really worried about how the constant tiredness will affect me as an adult :/ have you had a hard time with relationships, working, etc? And is it possible that I could develop more symptoms over time?

You know I really dont know if it is a disorder that gets worse over time. I know for me it has been progressing. My husband is very understanding of it. Now and then he will be like wake up when I am dosing watching tv or a movie but he understands I just cant help it. The best thing to do for Narcolepsy is take small regular naps when you can. It is suppose to prevent attacks. It has to be tough being a student trying to stay focused when you are that tired. My heart goes out to you.