9 replies to this topic

[hyperlexic]

This is a work in progress. Please PM me with any ideas or changes that I should make. Each list has a distinct purpose. The first list is for teachers. I believe this would help because teachers are in a unique position to see the effects of narcolepsy. The second list is for doctors that don't specialize in sleep disorders. The third list is of questions the doctors should ask if they suspect narcolepsy.
I may come up with more lists. These are based on my experiences and on the research journals that I have read.
Helping teachers recognize narcolepsy

1. Falls asleep in class

2. asks to go to the nurses office in order to sleep

3. Half finished homework

4. Misplaces pencils, papers, books

5. Takes longer to finish tests

6. Frequently claims to be tired or sleepy.

7. Frequently seems forgetful

8. Drops objects frequently

9. May fall to the ground

10.May stumble when emotional

11.Has more absences

12.Slurred speech

13.Handwriting gets very sloppy.

14.Gets incompletes due to homework.

15.Fails to use assignment books

16.Complains that he or she can never find things

17.Taps feet, rolls objects, flicks fingers, pulls hair, etc.

18.When asked why he or she failed to complete task, says either, "I don't know" or, "I was tired"

19.Talks incessantly, often about nothing in particular

20.Nods off during class

21.Eyes glazed

22.Does things and when confronted seems to not remember doing it

23.Does better at short or engaging tasks than simple ones

24.Gets angry when told to try harder.

　

Helping doctors recognize narcolepsy

1. Nearly every time you see them they are either tired, sleepy, drowsy, fatigued, exhausted, or out of it

2. Complains of forgetfulness

3. Is asleep or half asleep when you enter the room/has head down/disheveled hair

4. Patient stumbles/claims to be clumsy

5. Patient has difficulty describing symptoms because they are too tired/may bring in family member to speak for them

6. Patient has slurred speech

7. Patient complains about always being tired

8. Patient often misplaces money or insurance card

9. Patient’s head drops/ eyes close during examination

10. Patient drops things.

11. Patient is often late for appointments

12. Patient slumps into seat

13. Patient appears desperate for answers

14. MRI’s and CAT scans are negative

15. Patient has a poor immune system

16. Patient has had Strep Throat.

17. Patient does self-stimulatory behaviors

Questions to ask patient if you suspect Narcolepsy

1. Most people use the terms tired, fatigued, and sleepy interchangeably, this can be frustrating for us doctors since these each have distinct meanings. Did you mean that you are falling asleep?

2. What happens if you stop doing (name the self stimulatory behavior)? Do you fall asleep or does your attention wander?

3. When you stumbled, was it because something tripped you, or did one of your muscles seem to not want to support you?

4. Has this happened during moments of excitement and or times of stress?

5. Have you ever dreamed that you were waking up and couldn’t move?

6. Have you ever found your mind playing tricks on you before you fall asleep or when you wake up? Have you ever thought you saw something but realized that it wasn’t there so you chalked it up to being sleepy?

7. Are you clumsy?

8. Do you forget things frequently?

9. Have you ever misplaced objects that you don’t recall moving?

10. Have you ever suddenly realized that you had done something but don’t remember doing or don’t remember why you did it?

11. Do you find yourself nodding off while filling out forms?

12. Have you gone to do things and found yourself in the wrong place or doing something other than intended?

13. Do you often forget what you wanted to do?

14. Have other people ever accused you of talking too much?

15. Does it take you longer than other people for you get over an illness?

16. Have you ever felt your hands start to feel like they are hard to move?

17. Have you ever fallen to the ground when sleepy?

18. Have others accused you of being lazy?

[Saraiah]

Hyperlexic - What a great idea to put all of that together!! It's truly a tricky problem, since the symptoms of narcolepsy are so often mistaken by both the undiagnosed PWN and the people around him/her for a gazillion other things, as you well know. You've got a great list so far. One of the things that I try to educate people about when I'm talking about narcolepsy is that there is a huge amount of variability amongst PWN in terms of which symptoms any one person may have, and in how severe any of the symptoms may be. I really like your list, because you identify a huge range of things that can happen for a person.

Since the majority of people with narcolepsy have cataplexy, I guess one thing I'd add to your list is a bunch of examples of what cataplectic attacks can look like - from the head nodding that you list all the way to collapsing to the floor - and the fact that cataplexy is usually provoked by emotion. Of course, somebody else watching a cataplectic attack isn't always going to be able to see that the PWN is experiencing any particular emotion, even any emotion at all. But when you're talking about people like teachers who see the same students frequently, they might eventually pick up a pattern, if they know to look for it.

[Irishhh]

I remember in middle school or high school, not sure which... I can't remember who the kid was (it wasn't me) or which teacher I had... But I remember some guy falling asleep a lot, and the teacher was a female, anyway, all I can remember about them... Oh, but the kid fell asleep a lot, or went to sleep, either way. The teacher got mean a few times, once yelling the kids name from the front of the room. He woke up and she totally embarrassed him in front of everyone. She said something about sleep at home, not at school. And he said he does sleep at home, and she said well, you must not be going to bed early enough. He said he is, but he can't help being tired. She said, well you need to get it together because you're not sleeping in my class! Do I need to call your parents? He said no, they don't care.... I wish I could remember who he was, maybe I could look him up and see if he has had help, if he has narcolepsy, or something else.

I was also a sleepy kid, but I was able to stay awake or at least pretend. I was always good at that, I mean it totally sucked. I fought so hard all the time to stay awake. I remember being in class and falling asleep even though I thought I was awake but the kid behind me accidentally kicked my chair and I realized I'd fallen asleep. But I had my head propped on my hand. Narcolepsy is so weird.

I would like to help with the list. I'll send a message with ideas as they come along.

[Geohff]

I know how you are feeling. I have this urge to help others because of how much it sucked for me. I will never forget the suffering in silence with knowing I was not lazy but being sooo sleepy. I will remember the tricks, the efforts and the frustration I had working around it. I would like to go back in time and educate some, punch others in the face and scream out "see I am not lazy!"

But what’s the point? I know it in my heart the truth now and those here share my pain (including you) and I share yours, so why bother with the past?

[SleepingPhoenix]

I join you in the same thoughts, I used to thought I was not lazy just talented, because I was able to sleep with my eyes open and I always picked the seat at the end of the room so I could rest my head against the wall. Still I could hear so when I woke up I made notes of what I remembered aside from asking my classmates for their notes.

Even when the sleep attack was obvious, because I also snore, I remember teacher making questions to me to keep me awake and their faces changed when they found out I knew the answer and was listening. Some of them thought I was just the class clown and made this as a prank. I remember using the library as my sleeping place, during recess.

My parents also didn't believe me they thought it was laziness and always trying to skip school, because I was always feeling sick and in pain. When you are that young and feel not even your parents believe what is hapening to you, you become resourceful and also a caffeine addict in order to be able to function as much as normal as possible. Even in the school bus for science trips I used to fall asleep a lot and I learned to be mean and nasty to most of the kids in school, so if they played tricks on me while I was sleeping I will get back at them when I woke up. I always knew who they were cause I could still listen, thou I couldn't avoid fallling asleep.

When someone asked me if I was ok, I used to say I was day dreaming or simply had my mind somewhere else, or not paying attention. I even joked saying I had an Absent-Minded Syndrome, convincing myself I had nothing wrong with me. I was just so rebelious that when a teacher asked me why I was falling asleep in their class, I replied because it's boring. Of course that sent me to Principal's Office many times, but while I waited for the Principal, I slept a while in the lounge chair, far more comfortable that the classroom one. So to me it was a win-win.

I even waited for my license to drive till I was 25, and I told my parents that I didnt feel responsible enough to manage a car. I walked everywhere, and I even paid my sister to drive me around to far places.

Now that the diagnose is real, at age 39, I see all this as ways I found to fight this condition. Therefore I know I can be resourceful, productive, even if I fall asleep for a while, a couple times a day. If I did all this when no one believed, all I can think is all that I can do now that I know. "Knowledge is power" --Sir Francis Bacon

[91GT347]

I used to fall asleep constantly at school. I had to go to summer school 3 out of my 4 years of HS because of it. My Jr. year, I had a friend named Colby. We would hang out at the break before English. Which the teacher made a VERY boring class. Ofcourse I fell asleep pretty much everyday. One day she held me after class and said "I dont know what you and Colby are doing before class. I think your doing something illegal. I dont like you,and you WILL NOT pass my class". Thinking we were smoking pot or something before class. Making me fall asleep. Which we werent doing anything of the sort. To this day, I cant believe she said that, and still resent her for it. All because I fell asleep alot. I never caused problems for her or anyone else. I had the same problem in Algebra. Except that teacher was a good teacher. She just thought I was lazy, and didnt care. I failed the class ofcourse, but she liked me atleast.

[TiredNikki]

That is a great list. I am actually going to send it to my friend, who is the principal at my daughter's school. I suspect a few of the kids that they are treating for ADD are actually N. When the girls started school this year I emailed their teachers telling them to look for day dreaming and sleepiness, and to notify me immediatly if they see this because they sleep 10 hrs a night. So they shouldn't be tired at school. My poor daughter had strep 6 times in a year before I could her tonsils out! I know strep with our genetic mutation is the light switch for N! So thanks for the list!

[okami]

Wow...just wow

I'm reading this list and even though I don't exhibit all of them, that's basically my middle and high school careers! My mom would always say that I'm just paper challenged since I could never remember where I put my homework and usually would have to redo them at school or turn them in late, lol!

Yeah, I've noticed when I don't move my legs throughout the day, I lose focus. Sometimes pulling hair works as well. And always clumsy! Stumbled a lot lol.

Too bad I didn't have this list back when I was a kid, lol. I think I'll still print this out and bring it to my sleep doctor on Thursday since I'm still undiagnosed with N or C and I just want to be as prepared as possible.

Thanks for making this list!!

Ben

[dasikins]

This is an old thread but so very helpful even after a couple years later!  These are little symptoms often misdiagnosed.  We should use this as as sticky, if this forum has them

[munky]

6. Have you ever found your mind playing tricks on you before you fall asleep or when you wake up? Have you ever thought you saw something but realized that it wasn’t there so you chalked it up to being sleepy?

 

Never thought of this as my mind playing tricks on me, or seeing things I knew weren't there. Rather, I always described this as, "You know those weird dreams you have just before you fall asleep?"

 

Most everyone would say no, they had no idea what I meant, but I never thought it might actually have a name/cause ... just figured it was another way I was weird.