> Teen N symptoms, what sort of symptoms do you experience?

[Jbug]

I am not a teen, but am hoping if this board can get going my teen son will post. He was diagnosed with N last fall, right before his 16th birthday. He takes Provigil and says it seems to help him stay more alert in school. He plays sports (basketball and baseball) and we are always trying to figure out how or if his N is affecting him on the court/field.

I would be interested to know what sorts of symptoms other teens experience. Do any of you have cataplexy? My son does not. Are you driving? How does your school day go? Do you feel wide awake at bedtime? Do you catch up on weekends, or try to take naps after school? Do naps help? Do you ever fall asleep in class? Do your grades suffer because of N?

I hope it's o.k. if I stay in touch with this board to glean some support for my son.

Jbug

[Toph4er]

Yea its great if you stay in touch, and if your son joins thats awsome.

I'm 18 y.o. myself and I was diagnosed when I was 16. I've had a lot of problems with school and just now am getting back on track. Example, I went from A's to D's and F's in less than a semester, and by the end of said semester I couldn't wake up enough to even attend school. So with only 2 weeks left I had to stop. There's a lot more to that story but I wanted to keep it brief.

So for your questions in order: slight, not major; no; chaotic schedule as a result of my sleep schedule, and quality varys by alertness; no, but sometimes I wake way up when I hit the bed; Not really, I try to keep my schedule regular; yes, but I only nap occassionally; microsleeps which can interfere with my learning and concentration; and as mentioned above yes.

Hope that helps, I'm being driven back to my domino game with my grandparents who are visiting this weekend
Chris"Toph4er"

[sam.toombs]

JBug,

i was 17 when i was diagnosed, i am 22 now ... and yes it will almost definitely affect your sons education. You have to understand i am only speaking from my experience.

Much like Toph4er, when my symptoms developed my grades fell, i was an A grade student and now it takes me all my effort to manage average grades. Cataplexy is my worst symptom, if i stay away from emotions i am ok though obviously that is not really an option.

I can only speak from my understanding of English schools so a lot of this might not apply but i will explain my ways of dealing, it may give you ideas.

I think one issue is awareness, you have to make sure that people know what is wrong with your son and you have to make sure they know all the symptoms, e.g. it is not enough that your teachers understand he will be sleepy, because that won't explain the cataplexy. My teachers knew that i could fall asleep but when i scream in class from the nightmares they don't understand that.

I know it can be an embarrassing syndrome but for this i really believe that honesty is the best policy. I do not know if it is good old fashioned English repression but i found talking about my problem the worst part, but once you do, things get better.

To answer your questions from my perspective, because obviously it effects us all differently:

1 - My cataplexy can be quite severe, it is my worst symptom, i am sick of people calling ambulances for me though i can understand why they do
2 - I can not drive in England with narcolepsy unless i prove i can keep N under control with drugs ... i refuse to take anymore drugs
3 - My school day goes well enough, i sleep through my lectures but i get a note taker, my teachers all know what is wrong with me though they are of varying degrees of help
4 - I go to sleep straight away at bedtime though i wake up throughout the night
5 - Weekends? i sleep a lot at weekends and i take many naps
6 - And yes, my grades suffer immensely

Sam

[Toph4er]

It may sound odd but be proud of your narcolepsy in that if you are doing much of anything you are overcoming extreme challenges. Never be afraid of telling people about your condition, it is the best action to take. Besides that, if others feel they are having similar problems they may head out to a sleep doctor to be tested. Knowing is always better than not knowing (So in otherwords, you no longer feel like an oddball being called lazy unjustly [in most cases]). I have talked with many people who either seem to have symptoms themselves or know others that might, but I have never met a diagnosed narcoleptic in person. Awareness also helps for our sake because it draws attention from researchers looking to uncover something new!

Ok, so I suppose those should be directed towards your son not you, but you can benefit from the advice as well .

Chris"Toph4er"

[monkeysawu]

im 16, in high school and in the full IB program and my home work load is very heavy. for the past 2 years now, i noticed that i have not been able to do my homework efficiently, no matter what it was- studying, rewriting notes (which i love to do), or just booklet/textbook work- i couldnt and stil cant stay awake for very long. today i tried going through my biology, getting halfway down a page before my head began bobbing up and down and began scribbling on the paper... i have to make sure im active, siting and writing notes by myself didnt work today .

another problem i get occasionaly is falling asleep while walking, in school hallways, to the corner store for a snack, and walking my dog. most of those could have been avoided by taking naps before hand and taking my extra meds- i have a new pill that is like a booster, though it doesnt last as long i would like, i need to take 4-6 a time to stay awake in the last classes of the day.

i take adheral (i think thats how u spell it) as my main meds. taking them with breakfast then taking the rest at lunch should make it more effective as my major meds, im going to start that tomorrow.

im also a black belt in taekwondo, and if i slow down i may get drowsy. to snap back to attention when drowsy, usually something unexpected and random needs to get my attention, if nothing happens there is a point where all conscieous effort goes to staying awake, when the drowsyness fades, i get very alert. during exams this has happened many times, when i reach the high alertness i can make up for time lost easily.

at night, i sleep easily enough, but wake a lot. sometimes i may be awake for like 6 seconds some tiems, 5 minutes, but i found changing my posistion on my bed (head where feet should be) helps.

last thing is that i would recommend that your son or you personally, go and speak to the teacher and arrange for note packages or notes for classes missed to be made up, and that the teacher watch for his drowsyness and let him leave the room to take a smal walk and get a drink, teachers watch the students regardless, so when he/she scans the class and notices him, excusing him shouldnt be a problem. sorry it so long, theres so much to say, and small individual aspects of narcolepsy to go through. i hope some of this helped in some way- if anyone has a way to help my homework problem, id appreciate the assistance

This post has been edited by monkeysawu on Oct 13 2009, 07:27 PM

[Toph4er]

Hey there monkey.

Sorry about your homework problems, but I think bio will do that to you regardless of N (only joking). What I find helps is to focus intently on visualizing what is being said in the text. There are some things I know that can't really be visualized and the other danger is slipping off into wandering thoughts/dreams, but if you do it right it should help you focus and in general better understand what is being said in the text. I'd actually say I almost "dream read" so if I think about what I'm looking at it's more like watching a movie than reading a book. I am not sure how I read without really looking at the words but it works.

So you take Adderall in the mornings, what are your other meds? Also I suppose, what other meds have you tried in the past? Usually provigil (or now nuvigil) is taken for a longer lasting effect but it also doesn't work for some people. Just an FYI Nuvigil is a relatively new med that is based off of provigil and supposedly is longer lasting and more effective. I'm not too familiar with it yet, but I do want to try it.

As for your waking up a lot, is it because of dreams or breathing problems or something else or do you not know?

Thanks for the great input by the way,
Chris"Toph4er"