4 replies to this topic

[Poetmom]

Hi, my name is Jennifer. My doctor told me today that he thinks I have narcolepsy. I thought that only referred to people who suddenly fall asleep while they are actually doing things. What my experience has been, is that I fall asleep (doze off) pretty much whenever I am sitting down for an extended period of time, whether it is at home watching TV, an important lecture for school, or even at meetings during the morning or in the middle of the day, (especially after lunch), even if I have had a full night's sleep. Drinking coffee didn't make any difference either. I can doze off sitting down at a lecture with my coffee cup right in front of me. The weird thing is that it feels like I'm falling asleep from the inside out - the last thing that happens is closing my eyes - by then I'm already sleeping. People notice and think that it's funny or rude sometimes, but I really hate it. When it is happening, I feel like I'm being drugged, or everything is happening in slow motion or that I feel far away. I'm a nursing student, and I feel it is impacting on my studies.
Any experience strength & hope anyone can share would be welcomed.
Thank you! [/quote]

[digdonn]

Hello Jennifer,
Is your doctor making arrangements for you to have a sleep study to confirm the diagnosis so that you can start treatments, if applicable? If you are currently in limbo, and finding it hard to stay awake at school, I suggest that you talk with your profs about your sleepiness so that they do not make inappropriate inferences about why you look so tired in class (i.e. not blame it on boredom or lack of respect for their course). I am a college instructor and know that some instructors get angry when students fall asleep in class because they assume it is a misbehavior and not something that is uncontrollable. It is a good idea to let your instructors know that you are being tested for narcolepsy.

I can sort of relate to your description about falling asleep. I used to often fall asleep, but the only way that I knew I fell asleep was afterwards when I was aware that I was waking up. I was usually not aware of the falling asleep part, which was scary, and made me worry about safety.

I hope you soon get a diagnosis for your sleepiness, and some effective treatment.

[Poetmom]

Hi Nancy,
Thanks for your reply. I'm a little concerned about saying anything about narcolepsy to my professors, as I am studying to be an RN. I wonder if it would affect my standing, or if it would raise concerns as to my ability to be a nurse. I don't want to jump the gun and say anything before the sleep study. Luckily for me the hospital I work for presently has a neuroscience center where they conduct sleep studies. I am planning on making an appointment this week, although I hear it can take up to 3 months to be seen. By then, school will be over and all I will have to think about is the state board exam.
The way you describe your sleep problem sounds more like what I thought narcolepsy is - just falling asleep without the awareness of it - right in the middle of doing things. So far that hasn't happened to me.
I hope things are going well for you. Thanks again for taking the time to reply, Jennifer

[NBI]

In my experience, falling asleep at the drop of a hat is not the norm despite the way television portrays narcoleptics. There seems to be a butt switch that activates the naps. The only time sleep overpowers is at times when driving for extended trips. There are ample warning signs to pull over and take a dexie.

I come from a family of narcoleptics. I have 5 sisters and brothers, a father and a son and two nieces who have been diagnosed over the years and yes one of them is a Surgical RN. With medication and supervision of her narcolepsy by her neurologist (after the sleep labs of course), she does a great job. She is 26 and has been diagnosed for 3 years. I don't believe she has told many people where she works about her N... thats strictly on a need to know basis for most all of the narcs in my family. A few of them have had unpleasant job experiences with non-selective disclosure.

My experiences may not be what some others have had to live with, but I can say with assurence that the 9 narcs that I know doze into naps the way that you do.

[Poetmom]

Thanks for the reply. I like the idea of the 'butt switch' making you fall asleep. That is me for sure. I am usually very active, and just about as soon as I sit down for any extended period of time - I can just doze off like that. I am going to look into the sleep study as soon as I can. Jennifer