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#1 jwaiss1

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Posted 30 March 2008 - 02:20 PM

Hey, Im a journalism major at Ithaca College in upstate NY and am writing an article on narcolepsy. The reason I chose this topic is because I also have narcolepsy. I was wondering if anyone would be willing to talk to me about narcolepsy to help me out with my project. Let me know...

#2 greatbig47

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Posted 30 March 2008 - 05:05 PM

I'm always available.
PM me if you need a Phone #
Thanks!

-Stu

#3 sleepyavon

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Posted 14 April 2008 - 11:41 PM

I would help too! Just PM me!

#4 Toph4er

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Posted 15 April 2008 - 01:54 AM

I'd be happy to talk with you

#5 Libby

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Posted 15 April 2008 - 01:27 PM

Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.

#6 Cryopathic

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Posted 15 April 2008 - 01:42 PM

Hi, Im avalible to talk to anyone any time, just gimme a pm! smile.gif



#7 big_al_727

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Posted 23 April 2008 - 07:16 PM

QUOTE (jwaiss1 @ Mar 30 2008, 07:20 PM) <{POST_SNAPBACK}>
Hey, Im a journalism major at Ithaca College in upstate NY and am writing an article on narcolepsy. The reason I chose this topic is because I also have narcolepsy. I was wondering if anyone would be willing to talk to me about narcolepsy to help me out with my project. Let me know...



Hi! I live in Rome, NY. I was diagnosed in 1986. I would be more than willing to help out with your project. Just let me know what you are looking for.

#8 sleepytymegal

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Posted 28 April 2008 - 07:14 PM

QUOTE (Libby @ Apr 15 2008, 01:27 PM) <{POST_SNAPBACK}>
Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.



Dear Libby,

rolleyes.gif Welcome! You are not alone!

As a retired teacher, I'd advise that you go into the school and talk to principal, asst principal (whoever the appropriate person is) and let them know of your son's diagnosis and what is currently happening. Perhaps at the moment, they could put him on homebound instruction and he could manage to get caught up by the beginning of next school year.

At any rate, don't despair. Help is on the way. Understand that finding the best combo of meds is an ongoing and sometimes lengthy process. Just getting the first med(s) won't take care of it "just like that." Talk to the doctor and ask his/her advice on your son's continuing in school this school year. He really may currently be unable to attend and attempting to do so unsuccessfully could really make him averse to school in generall.It's hard enough to explain that you are a PWN--you get, "Gee, wish I had an excuse to sleep in.." and more! It's also hard for a teen boy, esp., to feel so vulnerable.

Contact me (PM) anytime that talking will help--even just to vent! Been there, done that! I am a PWN most of my life, most of that time undiagnosed. Used to fall asleep in 1st grade. Kudos to you for getting him to a doctor and getting to the bottom of all this
.

#9 Libby

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Posted 29 April 2008 - 06:30 AM

QUOTE (sleepytymegal @ Apr 28 2008, 07:14 PM) <{POST_SNAPBACK}>
Dear Libby,

rolleyes.gif Welcome! You are not alone!

As a retired teacher, I'd advise that you go into the school and talk to principal, asst principal (whoever the appropriate person is) and let them know of your son's diagnosis and what is currently happening. Perhaps at the moment, they could put him on homebound instruction and he could manage to get caught up by the beginning of next school year.

At any rate, don't despair. Help is on the way. Understand that finding the best combo of meds is an ongoing and sometimes lengthy process. Just getting the first med(s) won't take care of it "just like that." Talk to the doctor and ask his/her advice on your son's continuing in school this school year. He really may currently be unable to attend and attempting to do so unsuccessfully could really make him averse to school in generall.It's hard enough to explain that you are a PWN--you get, "Gee, wish I had an excuse to sleep in.." and more! It's also hard for a teen boy, esp., to feel so vulnerable.

Contact me (PM) anytime that talking will help--even just to vent! Been there, done that! I am a PWN most of my life, most of that time undiagnosed. Used to fall asleep in 1st grade. Kudos to you for getting him to a doctor and getting to the bottom of all this
.



Thank you for your help,

the meds he is on now is Provigil 1/2 pill daily in the morning, and as you say it is not working just yet. Its been 2 weeks and no change if anything it's worse. The complaining about going to school in the morning is crazy, everything from I'm tired to I hit my big toe on the bed and I think I should just stay home and sleep. I'm going to call the Dr. and ask him to either up it or change it or maybe I'm expecting it to work sooner then it should. On a happier note the teachers have emailed me and stated that he does seem to be more alert and responsive.



#10 Julie A

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Posted 29 April 2008 - 04:29 PM

I'd love to help. Available by PM as well.

#11 AssociatedWithFire

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Posted 20 November 2008 - 04:00 PM

Hi, Im new to this site and thank god I found it! I dont know if this is the right place for just talking but the title makes me think so. I live in upstate NY and have N w/ cat and somnolence (sp?). Untill now I havent found any means of support. My condition is this: I have N but I also have insomnia keeping me up for 3-4 days at a time. Its the strangest combonation in my mind. I go through my days being in a constant state of needing to go to sleep but cant by choice, and when I do finally get to fall asleep unless my wife wakes me up I can easily sleep for 2-3 days straight through. when I wake up I am no more rested than if I hadent slept at all and could easily go right back to sleep. the only thing that much sleep does for me is give me the immidiate need for a toilette. My condition has been quickly becoming worse. Last week for the first time I simply blanked out twice in one hour. the scarriest part at the moment was I was driving at the time. I had to pull of the road and have my wife pick me up and my wife got a friend of ours to drive my work van home. when she got to me i had the second blank out and was asleep and some how she ggot me in the car and home to bed. she said I walked to the car and walked into the house but I dont remember any of it. now I seem to have developed blanks in time more frequently. If not for this site I would be far more scared than I am. I actually cried with joy when I found this site! and am welling up a little now finaly having a place to talk about whats happining to me where people can understand! God bless all of you and God bless the Person who made this site avalible!!!

#12 sleepless sleeper

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Posted 20 November 2008 - 07:56 PM

QUOTE (AssociatedWithFire @ Nov 20 2008, 02:00 PM) <{POST_SNAPBACK}>
Hi, Im new to this site and thank god I found it! I dont know if this is the right place for just talking but the title makes me think so. I live in upstate NY and have N w/ cat and somnolence (sp?). Untill now I havent found any means of support. My condition is this: I have N but I also have insomnia keeping me up for 3-4 days at a time. Its the strangest combonation in my mind. I go through my days being in a constant state of needing to go to sleep but cant by choice, and when I do finally get to fall asleep unless my wife wakes me up I can easily sleep for 2-3 days straight through. when I wake up I am no more rested than if I hadent slept at all and could easily go right back to sleep. the only thing that much sleep does for me is give me the immidiate need for a toilette. My condition has been quickly becoming worse. Last week for the first time I simply blanked out twice in one hour. the scarriest part at the moment was I was driving at the time. I had to pull of the road and have my wife pick me up and my wife got a friend of ours to drive my work van home. when she got to me i had the second blank out and was asleep and some how she ggot me in the car and home to bed. she said I walked to the car and walked into the house but I dont remember any of it. now I seem to have developed blanks in time more frequently. If not for this site I would be far more scared than I am. I actually cried with joy when I found this site! and am welling up a little now finaly having a place to talk about whats happining to me where people can understand! God bless all of you and God bless the Person who made this site avalible!!!



I just started a new post for this "just found this site"