5 replies to this topic

[Sabrinab116]

Hi everyone, I'm new to this site and was just diagnosed with Narcolepsy w/o C the summer of 2011.

I'm 15 years old and in my sophomore year of High School, I've been on Ritalin sense the start of treatment though I have jumped between (18,27,and 36mg's.) that's the only medication i'm currently on.
The last time I visited my doctor we decided at the time the 27mg is working the best out of all doses.
But I still feel only slightly better on the medication and also I seem to become very tired after only a few hours after taking it.
Below I'll provided you my day today:

5:40 am Wake up for school/take medication

8:15 am (My first yawn and multiple others in a 20 min period of time)

10:25 am (second yawn and multiple after) but new issue I feel very drained like in a fog sometimes loosing focus on the chem. lesson and my eyelids feel heavy!

12:00 pm (yawn again multiple times) Not as tired as last episode but I can tell the day is gaining on me...

1:41 pm (yawn a lot) lucky me it's time to go home in another 20 mins so I can relax.

Yes this is long but I need answers and i will explain why - I live in a small community and come to find out i'm like the only few people in my State that has this Disorder and I don't live by any of them I feel so alone. My mornings are so hard its like a war with me and my bed or the way I put it... me and my bed have this relationship like no other, a magnetic pull that keeps bringing me back to it, I have found being Diagnosed with this no matter the alarm clock it wont wake me up ive tried up close so I can hear it but somehow I turn it off in my sleep???? also tried multiple alarms and putting it across the room to force me to "Get up", but then I don't hear it, from others posts it seems to be a common thing with the disorder.

As a student I find at some points of the day when the tired moments hit, I loose focus I cant really explain I can see and hear the teacher but when i come out of it I'm confused and don't understand what i'm doing. On so many occasions teachers have scolded me for not paying attention and making them repeat what they just said (its like i'm useless or a complete bother to society) and try explaining what you have, apparently its one of those modern day i'm a lazy teenager excuses that's not real...
oh not to mention I can be tired all day long but when I lay down to try and sleep it takes me forever to hit the point of "Sleeping"
I'm only am allowed eight absence's at my school before they fail you in each class and that's for a 3 month period then you get another eight, in the first 2 weeks of the trimester I already had Four just because of not being able to wake up.

I know deep down even without being diagnosed with C I still have it, from the point of being diagnosed i have had two occasions where I would be walking or in a hurry to reach class in time and all of a sudden my knees would buckle and I would catch myself before falling (Kissing the floor)
at other times ill pick my pencil up and it will just fall out of my hand or maybe its because of the shaking ive noticed with this disorder.

I cant even list all things with this I have experienced and their is just not enough answers or knowledge to explain all of it, sometimes I feel their is no hope is this how everyone feels when they first start to notice somethings wrong or after being diagnosed?


Please visit my blog: freedomfromnarcolepsy.webs.com

[Asleeper]

I think that I can speak for most of us on this site that this sounds like a typical day when we were in high school. Actualy you seem to be doing better than I did back then. You can make it work you may have to review your class work at home to learn what you missed in class.
What has worked well for me is to have a light on a timer in the room that you can not reach to shut off. Set it to turn on the light about 20 minutes before the alarm so your body can start to wake up and anticipate the alarm. Also the light will remind you if you sleep through the alarm, that you still have to get up. Sorry to say that it would also probably be a good idea not to sleep late on weekends and mess up your schedule.
Good luck , I know you can do this. College gets better once you get there.
Asleeper

[sleepywriter]

I'm sorry you're going through such a hard time at school. I was not diagnosed until age 27. Sometimes I look back and wonder how the heck I managed. Thank goodness I'm a quick learner and can teach myself just about anything.

The cycles you describe are very common in people with narcolepsy. Are you taking only one Ritalin? I take Ritalin SR 10mg twice a day. There are still peaks and valleys in my day, but not as much. I can make it until about 2:00 before I'm really struggling. At that point, I go take a nap.

Are you keeping the same sleep schedule, even on weekends?

Hi everyone, I'm new to this site and was just diagnosed with Narcolepsy w/o C the summer of 2011.

I'm 15 years old and in my sophomore year of High School, I've been on Ritalin sense the start of treatment though I have jumped between (18,27,and 36mg's.) that's the only medication i'm currently on.
The last time I visited my doctor we decided at the time the 27mg is working the best out of all doses.
But I still feel only slightly better on the medication and also I seem to become very tired after only a few hours after taking it.
Below I'll provided you my day today:

5:40 am Wake up for school/take medication

8:15 am (My first yawn and multiple others in a 20 min period of time)

10:25 am (second yawn and multiple after) but new issue I feel very drained like in a fog sometimes loosing focus on the chem. lesson and my eyelids feel heavy!

12:00 pm (yawn again multiple times) Not as tired as last episode but I can tell the day is gaining on me...

1:41 pm (yawn a lot) lucky me it's time to go home in another 20 mins so I can relax.

Yes this is long but I need answers and i will explain why - I live in a small community and come to find out i'm like the only few people in my State that has this Disorder and I don't live by any of them I feel so alone. My mornings are so hard its like a war with me and my bed or the way I put it... me and my bed have this relationship like no other, a magnetic pull that keeps bringing me back to it, I have found being Diagnosed with this no matter the alarm clock it wont wake me up ive tried up close so I can hear it but somehow I turn it off in my sleep???? also tried multiple alarms and putting it across the room to force me to "Get up", but then I don't hear it, from others posts it seems to be a common thing with the disorder.

As a student I find at some points of the day when the tired moments hit, I loose focus I cant really explain I can see and hear the teacher but when i come out of it I'm confused and don't understand what i'm doing. On so many occasions teachers have scolded me for not paying attention and making them repeat what they just said (its like i'm useless or a complete bother to society) and try explaining what you have, apparently its one of those modern day i'm a lazy teenager excuses that's not real...
oh not to mention I can be tired all day long but when I lay down to try and sleep it takes me forever to hit the point of "Sleeping"
I'm only am allowed eight absence's at my school before they fail you in each class and that's for a 3 month period then you get another eight, in the first 2 weeks of the trimester I already had Four just because of not being able to wake up.

I know deep down even without being diagnosed with C I still have it, from the point of being diagnosed i have had two occasions where I would be walking or in a hurry to reach class in time and all of a sudden my knees would buckle and I would catch myself before falling (Kissing the floor)
at other times ill pick my pencil up and it will just fall out of my hand or maybe its because of the shaking ive noticed with this disorder.

I cant even list all things with this I have experienced and their is just not enough answers or knowledge to explain all of it, sometimes I feel their is no hope is this how everyone feels when they first start to notice somethings wrong or after being diagnosed?


Please visit my blog: freedomfromnarcolepsy.webs.com

[Sabrinab116]

I'm sorry you're going through such a hard time at school. I was not diagnosed until age 27. Sometimes I look back and wonder how the heck I managed. Thank goodness I'm a quick learner and can teach myself just about anything.

The cycles you describe are very common in people with narcolepsy. Are you taking only one Ritalin? I take Ritalin SR 10mg twice a day. There are still peaks and valleys in my day, but not as much. I can make it until about 2:00 before I'm really struggling. At that point, I go take a nap.

Are you keeping the same sleep schedule, even on weekends?

Yea he has me only on one Ritalin 27mg a day but don't split it up so I take it at 5:00am and 4-5 hours later I crash and burn. I also have a very hard time getting to sleep I just toss and turn waking up around 3:00 in the morning, sometimes I wonder why he has me on a stimulate during the day but wont give me a sleeping aid for at night.

And to answer your question on the sleep schedule I try to keep it around the same time going to bed and waking up each night but that sometimes changes depending if I have major exams or tests to study for. Weekends I don't wake up the same time as during the week it tends to be later because 5:00am is extra early in the morning and I only get up at that time during the weekdays because of school. I would find it very difficult getting up that early on the weekend..

[sleepywriter]

Yea he has me only on one Ritalin 27mg a day but don't split it up so I take it at 5:00am and 4-5 hours later I crash and burn. I also have a very hard time getting to sleep I just toss and turn waking up around 3:00 in the morning, sometimes I wonder why he has me on a stimulate during the day but wont give me a sleeping aid for at night.

And to answer your question on the sleep schedule I try to keep it around the same time going to bed and waking up each night but that sometimes changes depending if I have major exams or tests to study for. Weekends I don't wake up the same time as during the week it tends to be later because 5:00am is extra early in the morning and I only get up at that time during the weekdays because of school. I would find it very difficult getting up that early on the weekend..

5:00 am is EARLY! I have heard of students adjusting their school schedule so that they can go in later. Would that be an option for you? This would let you alter your schedule so that you could get up at a decent time every day. My neurologist said to try to keep within an hour of usual time of going to bed and waking up as much as possible. I do find that it helps me.

I do take a sleep aid, which also increases the necessity of making sure I have a long enough "window" of opportunity to sleep. I go to bed at 10pm and wake up between 6:30 and 7:00. I would keep asking for a sleep aid.

[TiredAgain]

Don't feel like your all alone because your not you have all of us. We all seem to have different symptoms of the same disorder so some times I'm sure we all feel alone. Sometimes I don't believe I have N even though I have been tested because I don't have it as bad as most. My test showed it was bad, but I don't even need an alarm to get up 75% of the time, I don't have C, and most of the time I can push through a sleep episode. On the other hand I am tired all of the time and like you when I can finally lie down it takes a while to fall asleep, I don't know what it feels like to feel refreshed, there are times I have to lie down, I get brain fog really bad at times and I take 30mg Adderal XR everyday.

I'm not young I'm 47 but I just did 4 yrs of online college and I can't retain a thing. School is tough for all of us, just don't give up. Talk to the school about accomidations, maybe they can adjust your schedule to work around are bad times of day. As others have said try to stay on a schedule, on weekends I usually wake up the same time automaticly but I go back to sleep and if I stay in bed to much past my regular wake up time I feel twice as tired all day.

Good Luck