3 replies to this topic

[exanimo]

Hi all! I just joined NN a few days ago, and received my diagnosis of Narcolepsy w/ Cataplexy today. So.. my name is Jessica, I'm 20 and I live in Alaska. I hope that I can not only receive support from everyone here, but also be able to give it in return

Background... I think that the onset of my symptoms started when I was about 13. Around this time I was diagnosed with Depression and went to a Long term treatment facility for 10 months. I went voluntarily and while the program was met with resistance from everyone (including myself at times) and probably wasn't the best treatment facility out there, I learned a lot about coping skills and relationships. We went to bed at 9 PM every night and got up at 7 am every morning, and this was always my reference when family and friends told me that there wasn't anything wrong with me, I just needed a better sleep schedule. Because I had been on a very rigid sleep schedule (as well as eating, exercise etc) while I was there, and yet I still fell asleep during groups, classes, or would curl up on the day room floor during our free time (because we weren't allowed to be in our rooms outside of sleeping).

I struggled throughout school because of the excessive daytime sleepiness. But I had a lot of great teachers (and professors in college) who didn't call me out on sleeping and even spent extra time helping me (even though neither them or myself knew I had N). Although the last few semesters at my community college I have found it increasingly difficult to keep up with classes due to falling asleep during lectures. And have also had to drop/withdraw from a few because I simply couldn't keep up. But I am hoping that once I start the Provigil that my Neurologist prescribed, I might be able to handle a full course load again.

I'm a respite care provider for elderly who have Alzheimer's disease. I work with them in their homes. My shifts are usually only 4-6 hours so I do good with that.

I had my PSG and MSLT done last week and my follow up with the Neurologist today. Which confirmed my diagnosis as Narcolepsy. My average sleep latency was .9 I went in to REM 3/4 Naps. During the PSG I went in to REM in 5.5 minutes (which I guess is pretty fast even for N). And I spent 1 hour (out of 6.9) in REM and 5.4 in NREM.

Anyway. I just wanted to say Hi! And thank everyone here for simply being here - I am glad to have that sense that I'm not the only one!

[Asleeper]

Just wanted to say welcome. It sounds like you are getting things under control. I think you'll like it. I saw your list of interests. It goes to show that not all of us narcoleptics are willing to roll over and play dead. Some of us wake up from time to time and have some fun.

[SleepyRaffie]

Welcome!


I know what you mean about not being the only one. I had bought into the whole "you're lazy," "you need better sleep," "you're depressed" business. Because of this I did not get diagnosed until two weeks ago at 37. It is great that you put your foot down and figured it out. It sounds like you are on a great path!

[sleepywriter]

Count me in as a member of the diagonsed-with-depression-as-a-teenager-but-have-narcolepsy-club. The same thing happened to me! My dad STILL thinks I am depressed or bored at work or any number of things OTHER than having narcolepsy. It's maddening. Finally, one day, I said, "If I am depressed, even in the slightest, I'm depressed because I'm tired, not tired because I'm depressed."

Welcome to the forums!