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#1 kjordan93

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Posted 01 May 2011 - 01:28 PM

I am 18 years old and will be graduating from high school next month. My mom and i have been going back and forth for months about whether i should live in a dorm or an apartment when i go to college in the fall. I don't want to live in a dorm because i fear that my sleep will be a problem. Does anyone have any tips for living with Narcolepsy in college?

#2 merrymom1013

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Posted 01 May 2011 - 02:23 PM

Make sure your medication is adjusted & working well. In a dorm- a private room so you can have regular naps (& critical if you take xyrem). Depending on where- air conditioning so noise from open windows & overheating doesn't interfere with sleep/naps. A lock box for your meds. Extra time for exams & scheduling accommodations so you don't wind up with all of your exams back to back. Priority scheduling, so you can schedule classes in a way to optimize your chances of success. Everyone is different but you may want to try & avoid early morning classes or evening classes. Maybe breaks between classes, etc. Some of the same accommodations that work for you in high school may be worth asking about.
Some advantages of the dorm- as a freshman you'll find it easier to connect on campus, you'll find it easier to pop back to your room for a nap & you'll cut down on time needed to get to class. Single rooms are limited & not typically assigned to freshman, but if you work through the school's disabilities office, & have a letter supporting the need from your sleep doctor, most schools will try and accommodate you. The single does cost a bit more than a standard shared room. Have you & your mom talked to your doctor or to the college disabilities staff yet? Congratulations on your upcoming graduation.

#3 Asleeper

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Posted 01 May 2011 - 11:54 PM

It's been a while now but as I remember it.....
I did better in the dorm because I could get back for naps.
I tried both having a roommate and not. It worked beter with a roommate because the extra activity helped keep me awake and on schedule. When my roommate was away for the weekends I would tend to sleep all day.
I took a lot of short naps everyday. Like four or five.
I found noisy places to study to keep me alert. On top of the dryers in the laundry room, in front of the elevators at the library, at a table in the dorm lobby, and my favorite, in the bar at the near by ski area between runs.
Sometimes my friends would read my text books to me.
I learned to read upside because it would make me concentrate more and less likely to drift off.
I drew a lot of sketches in my notebooks along with my class notes to help keep me awake.
If I thought that there was a a possibility of staying awake in class I would sit in the front row to keep more interested.
Smaller classes help if you can participate actively in the discussions.

At one time I mentioned to a friend that I thought that I would stop going to classes because I was only awake for the first five minutes. My friend said to keep going because I might learn something in those five emanates. She was right, i did. I would get the assignments, learn when the tests were scheduled, and copy down the information off the blackboard after the class ended. I carefully read all the reading assignments outside of class and that seemed to fill in the gaps.

I made it through in four years without medication. And only had to re take one class.

Good luck, E-mail me if I can be of any help.

#4 kjordan93

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Posted 03 May 2011 - 08:30 PM

Make sure your medication is adjusted & working well. In a dorm- a private room so you can have regular naps (& critical if you take xyrem). Depending on where- air conditioning so noise from open windows & overheating doesn't interfere with sleep/naps. A lock box for your meds. Extra time for exams & scheduling accommodations so you don't wind up with all of your exams back to back. Priority scheduling, so you can schedule classes in a way to optimize your chances of success. Everyone is different but you may want to try & avoid early morning classes or evening classes. Maybe breaks between classes, etc. Some of the same accommodations that work for you in high school may be worth asking about.
Some advantages of the dorm- as a freshman you'll find it easier to connect on campus, you'll find it easier to pop back to your room for a nap & you'll cut down on time needed to get to class. Single rooms are limited & not typically assigned to freshman, but if you work through the school's disabilities office, & have a letter supporting the need from your sleep doctor, most schools will try and accommodate you. The single does cost a bit more than a standard shared room. Have you & your mom talked to your doctor or to the college disabilities staff yet? Congratulations on your upcoming graduation.



Thank you. I am taking xyrem and that is one of my biggest concerns when it comes to having a roomate. I currently have a 504 plan at the high school that i am attending. my counselor said that my accomidations from high school should transfer over to college.

#5 KitCatMnM

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Posted 03 May 2011 - 11:23 PM

Get started with the Academic Support office or whoever it is that deals with ADA accommodation now. Each school is different, but you can work with them throughout the summer - they have probably already helped plenty of PWN and know what you need throughout school better than you.
I really do recommend living on campus if you can. Many schools have quiet halls or quiet dorms so you can sleep and study on your own hours (and these usually have plenty of singles set aside for people with medical requirements since a person who requires a whole hall that is quiet probably needs a single, and vice versa). It's really such a crucial part of the college experience - and as important as people seem to think that diploma is, college is so much more than the classes. I didn't get diagnosed til very recently - my junior year - so I have a roommate and am going to be living in a double next year. I don't have any trouble with living with someone else, but that's probably because she's someone I know. I trust my roommate, but am getting lockbox for the Xyrem in case someone does break in. (My concern isn't even so much someone coming and taking the bottle, I'm worried about someone getting into my room slipping a dose out without me noticing - unfortunately some men still think it is ok to rape helpless women, on college campuses and in the real world, and I'm really not into supporting that unwillingly).
If you think you would be okay in a quiet hall with a single, then go for it. Living off campus is really just not that great.

This is what my college website says:
  • The IDEA (Individuals with Disabilities Education Act) only applies to K-12. This act generates the IEPs with which most students with disabilities are familiar. The K-12 schools provide the testing and the accommodations that help each student reach his/her potential. This law does not apply to post-secondary institutions.
  • The 504 Rehabilitation Act and ADA (American with Disabilities Act) are civil rights legislation which continue to apply to the needs of students with disabilities when attending college.
so hopefully whatever you have now you will be able to work out with your future college. Where are you going, if I may ask?

#6 kjordan93

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Posted 04 May 2011 - 09:36 PM

Get started with the Academic Support office or whoever it is that deals with ADA accommodation now. Each school is different, but you can work with them throughout the summer - they have probably already helped plenty of PWN and know what you need throughout school better than you.
I really do recommend living on campus if you can. Many schools have quiet halls or quiet dorms so you can sleep and study on your own hours (and these usually have plenty of singles set aside for people with medical requirements since a person who requires a whole hall that is quiet probably needs a single, and vice versa). It's really such a crucial part of the college experience - and as important as people seem to think that diploma is, college is so much more than the classes. I didn't get diagnosed til very recently - my junior year - so I have a roommate and am going to be living in a double next year. I don't have any trouble with living with someone else, but that's probably because she's someone I know. I trust my roommate, but am getting lockbox for the Xyrem in case someone does break in. (My concern isn't even so much someone coming and taking the bottle, I'm worried about someone getting into my room slipping a dose out without me noticing - unfortunately some men still think it is ok to rape helpless women, on college campuses and in the real world, and I'm really not into supporting that unwillingly).
If you think you would be okay in a quiet hall with a single, then go for it. Living off campus is really just not that great.

This is what my college website says:

  • The IDEA (Individuals with Disabilities Education Act) only applies to K-12. This act generates the IEPs with which most students with disabilities are familiar. The K-12 schools provide the testing and the accommodations that help each student reach his/her potential. This law does not apply to post-secondary institutions.
  • The 504 Rehabilitation Act and ADA (American with Disabilities Act) are civil rights legislation which continue to apply to the needs of students with disabilities when attending college.
so hopefully whatever you have now you will be able to work out with your future college. Where are you going, if I may ask?



I will be going to Florida A&M University. A quiet hall and a single room would be a big help. I will be a pharmacy major so i am definitely going 2 need somewhere that i can sleep & study. Getting a lock box for my meds is definately at the top of my list. I wouldnt want to support people who abuse methylphenidate as the homeworrk drug or zyrem as a date rape drug unwillingly either.

#7 merrymom1013

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Posted 07 May 2011 - 03:46 PM

My daughter's doctor wrote her letter for college specifically stating she needed a private room because of the need to nap, need to keep a regular sleep schedule & because she must get up in the middle of the night to take medication which has high potential for abuse by others. He talked about air conditioning for the same reasons (though in Florida I'm sure all dorms are air conditioned).
Single rooms for freshman are limited, so you need to be talking to the disabilities & housing offices NOW- before all of the rooms are assigned. Make sure you know exactly what documentation the school wants so you can make sure your doctor includes everything they need. After the upfront work of making sure her school had all of the paperwork just the way they wanted it, they have been very accommodating. The school suggested a room with a private bath (not mentioned by the doctor) so she wouldn't be wandering the halls high on xyrem if she got up during the night. She wound up in a large room with a private bath that was bigger than the double rooms.

#8 kjordan93

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Posted 04 September 2011 - 07:56 PM

Thanks everyone for all of your advice. I started classes last week and so far all is well. I have been working with my schools disability office and they were willing to make the accomodations that i needed.

#9 sueno

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Posted 12 September 2011 - 02:18 PM

Glad things are going well for you in college so far!
I found living on campus much easier, the dorm is never too far away to take a nap (the library was a good napping place too), you can walk or take a very short ride on a bike - much easier than driving on/off campus - searching for parking, etc. I always sat in the back of every class, wore a hat, drank a lot of caffeine from the second I woke up, etc. I was not diagnosed as I had been excessively sleepy for years prior and didn't realize any different so didn't have medications or official accommodations. I did make sure my professors knew who I was as the classes were quite large, I recommend that so they can put a face with a name. Also I learned to set up my schedule at times when I was less likely to skip class due to sleeping, mornings were never my best time of day.

#10 kjordan93

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Posted 18 September 2011 - 11:21 PM

Glad things are going well for you in college so far!
I found living on campus much easier, the dorm is never too far away to take a nap (the library was a good napping place too), you can walk or take a very short ride on a bike - much easier than driving on/off campus - searching for parking, etc. I always sat in the back of every class, wore a hat, drank a lot of caffeine from the second I woke up, etc. I was not diagnosed as I had been excessively sleepy for years prior and didn't realize any different so didn't have medications or official accommodations. I did make sure my professors knew who I was as the classes were quite large, I recommend that so they can put a face with a name. Also I learned to set up my schedule at times when I was less likely to skip class due to sleeping, mornings were never my best time of day.



Living on campus has made it easy for me to take a nap when i need to. I joined the step team and lately i have been having trouble with my cataplexy. Does anyone have any tips for controlling it?