What is university life like for a narcolepticPLEASE HELP!!!

[le_le]

hi everyone,
I have applied to go to university this year and i have received letters form the university disability apartment asking what special requirements i would like to be made for me to make life easier. I currently take 300mg of provigil a day and only suffer from Narcolepsy. My sleep attacks have decreased since the 6 years i've been on provigil but i still find myself falling asleep in embarrassing situations.

I was just wondering how people have coped generally living away from home, telling new people that you have narcolepsy, sitting through boring lectures and if anyone has applied for any special accommodations to be made for them. I hope the universities will be helpful but im not really that sure what to ask for. If there is anyone out there who is at uni or been already and could suggest the type of support i should ask for, it would be a huge help. thanks!!
Any experiences of university life will be reassuring.

[manifold]

Hello, thought these might help. I got them of a canadian universitie's site, while researching for myself. Some of these will probably not apply, but food for thought. I would seriosly consider asking for preferential scheduling (get to register with the phds ), note taker or tape recorder and audio books. The first I think is the most crucial, especially as a freshman, this may let you take classes when you know you will be apt to stay alert and learn. Exams can also be scheduled for times of the day that have been most productive for you. The second two suggestions depend on the severity of your symptoms and field of study. If you expect to sleep through parts or all of classes ask for a note taker, and if you are a history or literature major ask for your text books to be put on to tape. Obviously you can't put math books on tape, but if this will work you can do your reading while running or walking, and not with your head falling into a blank white paged book. Also have as much comunication with your professors as possible, this will dramatically improve anybodies experience and success at the uni level. You might also want to call advocates for sleep on the tas website and call the DSS office at the university to discuss more with them. The best of luck to you and enjoy the university enviroment.


Instructional Strategies for Students with Medical Conditions:

Preferential seating in class, near the door, close to the front;
Allow regular access to washroom facilities;
Plan a signal to recapture student’s attention;
Ask for a change of classroom location if current facilities are inadequate;
Place equipment and apparatus within the reach of students;
Know the emergency evacuation procedures;
Provide student with permission to bring food/drinks into tests/exams;
Provide student with permission to take medication while writing tests/exams;
Provide student with permission to take rest breaks during exams;
Provide student with permission to tape record lectures (or student may use the assistance of an in class note-taker);
Allow extra time for the submission of assignments or written portion of labs;
Provide a list of readings and the course syllabus as soon as possible;
Exam Accommodation Strategies:

Extra time for tests/exams;
Separate room to write tests/exams or a room with a few other students;
Easy/regular access to washroom facilities;
Extended time between scheduled tests/exams;
In extreme cases only one test/exam scheduled per day;
Use of a computer to complete tests/exams;
Use of an ergonomic chair, desk top lamp and angle adjustable table;
Allow a formula sheet.
Services available to students with a medical condition:

Assessment of specific needs and individualized follow-up by a specialist;
Exam accommodations;
Library Research Assistance;
Adaptation of the physical setting;
Support for note-taking;

[le_le]

wow manifold!!

Thanks a ton, for that amount of information, i was kinda confused on where to start with the support i would need, you've made it really clear for me now, thanks a lot.
I live in England, London, so things are a little different with the system but im sure i am now on the right path to getting the help i need.

Just out of interest what university did u attend and how did u find experience?
I am planning to go to Belfast in Northern Ireland to study History so thats quite far from home for me, i am sure it will be a gruelling course but i like a challenge.

[abiss]

Hello

I attend Reed College in Portland, Oregon (US) and have been learning first hand what accomadations I need or wish I had. My main suggestions to you are similar to the other reply you received: GET A NOTE TAKER. If you are going to be falling asleep in class, this will be a really valuable resource. I can't tell you how many times I've come home with illegible scribbles for notes. This will also mean that if you happen to miss a class, perhaps because you were sleeping, you can still get the notes. Another thing that has been difficult for me is living in a dormitory that is loud during my sleeping hours. In hindsight I should have applied to live in the "quiet" theme dorm or something, but I never wanted to because I didn't really associate myself with being a quiet person. Now I realize that it would be much easier for me to have a controlled sleep schedule if I wasn't constantly being awakened by boisterous college students at 4 am. If you think this might be a problem for you, ask to be provided with housing that has more privacy...thicker walls, quiet theme, no roommate, whatever will help you and suit your lifestyle. I've found it a challenge at my school to complete all of my schoolwork on time because the academic load here is very rigorous but I've never asked for preferential treatment (extended due dates, etc). At times when I have a million things due in one week and I need to stay up late hours leading to me struggling through the days all week, I wish that I had extended due dates. Reed is a small school so I have close relationships with each of my professors but I've only recently told some of them that I have narcolepsy and I felt relieved once I did. If you're comfortable explaining the effects narcolepsy has on you to your professors I would advocate for telling them right away. I never did because I didn't want my professors to think I would be "weaker" than other students, but I got over that fear and so far it has only made me feel more understood. Again, like the other person in this post said, make sure you're allowed to register for classes early so that you can have first choice on which times of the day your classes will take place. I went to a very large public university my freshman year (University of Wisconsin Madison) before transferring to Reed and had to take a 7 am lecture class of 500 students or so and basically it was a disaster. If I had been able to register before the other 40,000 students I could have avoided that.

Anyway, good luck in all of this. I hope you don't feel like you're the only person with narcolepsy going to college, you're not! Sadly, most of the other people with N going to college aren't diagnosed and won't be able to get these accomdations to facilitate the experience. Feel free to email me if you want to ask me anything else!

[jessman1128]

I attend Ferris State University in Big Rapids, Michigan. I can't offer any tips on dorm life, because I'm married and live in family housing.

Regarding classes though, my advice is pretty much the same as the other replies you've received. Try to schedule your classes for the times of the day when you are more awake, if you know what those times are. Take notes all the time - that may or may not help you stay awake. It doesn't help me, but it helps some people. Get to know somebody in each of your classes so you can get notes that you miss and stuff like that.

Regarding classroom seating, you'll have to try various arrangements and see what works best for you. I tried sitting in the front row, but found that it didn't help me stay awake, and it distracted the other students when I inevitably fell asleep. Now I seek out the back row, so when I do fall asleep it won't be as distracting to everybody else. If you have problems with professors because you're falling asleep, talk to them and explain about narcolepsy. Or tell them upfront if you feel comfortable doing that. It hasn't been a problem for me yet - I've never had a prof talk to me individually about me falling asleep in class, but I know they have to be noticing it. I work pretty hard at getting good grades, between homework assignments, tests, projects, etc....I think I've been lucky in that I've gotten professors who don't care all that much that I fall asleep as long as I'm not distracting other students and I'm getting good grades. I'm sure not all profs are like this though.

Good luck! Feel free to e-mail me if you have any questions. I can't promise awesome advice, but I'll certainly try.

[Job G]

[Cathy]

HI!

Im at university in the UK, im at Cardiff university in my second year studying medicine.

The uni have ben really suppotive and helpful.

I applied for a DSA on the advice of the student support department of the uni.

As a result of that i have a digital dictaphone to use in lectures in case i fall asleep.
I get extra time in my exams in case i have a sleep attack/automatic behaviour during the exam, and the additional time means i can go back an dcheck adn corect my work.

I also have been given software which will read out my typed work to help me checking it when im tired, adn also it will scan in text from books/handouts and read it out to me, which is useful for me as i find reading really hard when im so tired. I cant remember what the software is called, but its designed for dyslexic students, (and as i make mistakes much the same as many dyslexic students when i am very tired, it helps).

The univesity is also trying to find somewhere for me to sleep at lunchtime, so far tehy are unsuccessful, but if you ask they may find somewhere. That would def help me.

Im also supposed to make all my lecturers and tutors know, the DSA assessment suggested i carry a lamintated card breifly explining narcolepsy etc adn that i might fall asleep in their lecture (mainly so they dont pick on me if i do, but also some lecturers are really helpful if they know and provide you with typed notes etc)

Oh, and as im doing medicine and i have to go on placements across south wales, adn cant drive, and they decided i was 'at risk' on public transport, then i get taxi money minus the bus fare to all my placements.

Thats about it. But i hope it helps, have you considered applying for a DSA alongside yours student loan?

If you want to chat more about uni just say adn i will give you my email address.

Cathy

[le_le]

thanx to everyone who has replyed it has been a great help.
I now feel fully prepared to go to uni without the worries and have a great time.

Hi cathy it would be great if i could have your email add to talk some more.
thanx

[Cathy]

Hi

My email addy is cathytusting@hotmail.com would be great to chat to you.

Cathy

[raulito]

For me going to the university and having a life is has been HARD.. I am a biology major and my first 2 college years (before I knew I had Narcolepsy) were horrible.. I had no idea how to keep myself awake or how to study.. it was tough.. I moved back with my mom (I realized that I couldn't live by myself) and transferred to a different school.. She would wake me up and made sure I studied.. it was a big help.. BUT she had to move (job related) and I'm by myself again.. the last semester was HELL... I think I missed half of my classes..

I haven't gone to the disability office to ask for accommodation ( I am stubborn and have a lot of pride)... I know, I should do it.. I will next semester... but by the end of this semester I had to talk to my professors and explain what was going on.. they actually helped me.. I was so relieved when they gave me more time to hand in my final projects and to take exams I missed..
When I don't do very well in school I tend to get VERY DEPRESS and don't force myself to study... I had a ROUGH time..

I'm studying now for the MCAT (Medical College Admission Test) and I'm scared getting into MED school and not be able to handle it.. I just need to plan my time very wisely..

With Narcolepsy you have to choose between studying/do well in school and have a social life.. hard to mix both.. 'cause all my "awake time" if I socialize with people then I won't be able to study.. hard hard...

Anyhow.. just wanted to get that out of my chest..

[sleepyfrog77]

Something that helps me in boring lectures is walking around or standing up against a wall. Depending on the classroom layouts maybe you could sit in the very back by a wall and stand up if needed. Also, if you're able to hear from the hallway maybe your professor would let you sit in the chair closest to the door and then step out and pace back and forth if need be. I have found that I am much more alert if pacing back and forth and my notes are a lot more legible.

Good luck!

-Sleepy Frog

[raulito]

Since I've been taking ritalin 15-20 mg I no longer fall asleep in class but sometimes I can't focus and I end up copying my classmates notes..

Sometimes I just need to take a 5-10 min nap before class.. and I'll be okay... Right now I don't care if people see me asleep in the library, in the hallway, in my car or in a bench... At first I was embarrassed but not anymore..

[SleepsHarderThanTheDead]

I developed narcolepsy my sophmore year of college, and it really distroyed my life for a while (since i wasn't diagnosed). I ended up failing most of my classes (despite being an honors student) since i couldn't stay awake for anything. I ended up moving back home, but i finally found a good doctor and i've been doing well on Xyrem and Adderall.

I ended up transfering to a school closer to home, and registered with the school's disabilities office. They give me a slip of paper explaining my needs, and i give it to each of my professors at the start of the semester. i just talk to my professors at the end of the first class and explain that they shouldn't be offended if i fall asleep. I always sit in the front row and ask them to wake me if they're comfortable with that and if it doesn't distract the class. I find it best to sit by a friend (or try to make a friend first), and have them wake me if i fall asleep.

Actually, i haven't had too many problems with unexpectedly falling asleep in class. I try to arrange my schedule so that i can have a nap between classes. If i'm really tired, i'll just lay my head on my desk and try to sneak a quick nap before class (usually if i know i have a friend who will wake me up). The only professors who have actually shook me awake did so before class started. I find myself enjoying my classes and haven't had too many problems being stuck in boring lectures. If ever i do get bored, i try to focus myself on something -if not by writing notes in the class i'm in, then doing writing lists of other chores i need to do or by simply doodling. Actually, i find that chewing gum (or eating/ drinking/ sucking on something) helps keep me awake too.

It's important to realize though that universities are full of sleep deprived students, and that students napping in strange places is not uncommon. At first i was always mortified when i'd find myself waking up in a study lounge or the cafe with students all around me (oh, and the sleep paralysis thing just makes it more terrifying), but after seeing enough students asleep in a commons area (sometimes with books open and pen in hand) or napping on benches or even the floor using a sweater as a pillow, you evenly become more comfortable with the idea of napping in public. (however, maybe this is only because i go to a relatively small school). Nowadays, i have my favorite couch in the library where people know they can find me taking a nap when i need it.

Since i live closer to school now, i don't live in the dorms anymore, so i can't say much about dorm life with narcolepsy (except for when i hadn't bee diagnosed and constantly slept though my alarm clocks -i kept getting nasty notes on the message board on my door).

I don't know what other advice i can give. Try to fix things as best you can medication-wise with your doctor, talk to your professors so they understand your situation, and try to make some good friends. Don't be ashamed about having narcolepsy, but don't constantly remind yourself/others about it either. Know your limitations but don't fret over them either, or think that you're a huge disadvantage compared to other students. College can be challenging (i don't think it would be worth it if it wasn't!), but if you have determination you'll make it through.

[Andromeda1528]

A few things that helped me stay awake in long lectures at the university:
- sniffing a kleenex with a few drops of peppermint essential oil during class
- drinking water or anything- helped a lot! i guess doing an action other than taking notes helped to keep me from dozing off
- preferential scheduling is a good idea as well, particularly if you take naps (I take one around noon and one around 3). I would try to schedule my classes so I wouldln't be in class around those times.
- if a lecture is really important you might try tape recording it if you think you'll fall asleep
- and having a friend sit next to you who knows that you have N could help if you tell them they should nudge you if you fall asleep

[cipollaj]

I can you give you some advice from the viewpoint of someone who had N during college but wasn't diagnosed until afterwards.
-first off, hopefully the Provigil will help you stay awake...that was my biggest problem
-read ahead: if you know the syllabus, read up on the next class' topic before going to that class....that way if you fall asleep you can just get the notes from a friend but you still know what's going on
-TAKE LOTS and LOTS of naps WHENEVER you need to--this kept me sane. Middle of the day, 8 PM, anytime you need to--naps sometimes helped me prevent sleep attacks. Hopefully you will have some understanding friends who will take notes for you if you can't make a class (or multiple classes)
-I also had ADD, and I found it incredibly helpful to notify my professors at the beginning of the semester that I had a learning disability. That way they are aware of what's going on with you and what they might expect.
-on a similar note, register with university's disability program. Just bring medical proof and read up on what kinds of benefits you are entitled to (possibly longer test-taking times, etc)
Hope some of this helps. Feel free to email me if you have questions.

-John