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Living with Narcolepsy

College Students w/ Narcolepsy and Cateplexy


#1

Hi my name is Mikayla and I was diagnosed when I was 16.

Now that I am a college student, I was able to set my own schedule and figured I would be able to manage very well. But I never imagined my biggest problem would be professors who wouldn't help me. Even after going through campus disability services.

I guess I am asking college students and former college students, for not only tips and suggestions on how you work with your professors to get the most out of your classes, but just keeping yourself safe but not isolated from our peers.

Are there any student athletes with narcolepsy? If so, how are you managing?

Just lonely and needing answers! Any reply will help me greatly!


#2

I've been a college student a few times. I learned something new about what I could and could not do each time. It's hard to figure that out without doing accepting the challenges you want to take on, like you are doing right now. Don't get too discouraged. You're not alone - other members here are in college, too.


#3

What accommodations have they given you? What are processors not complying with? I go to school full time as a returning student, single mom, etc. I go to school online ad’s I’m almost finished. I actually have only had special accommodations my past two terms. I get electronic copies of my books, although I have yet to find a program so I can listen to them, I get extra time on assignments if needed and 2x’s for tests, in case I fall asleep during etc. I’m also trying to find a program that will type from talking, or whatever you call it. Basically so I can dictate discussion question posts etc.


#4

I can wholeheartedly agree with the gratification that came from being able to set my own schedule. I was diagnosed my sophomore year of college and ever since I made a priority to utilize what time of day I schedule classes so I can leave times for naps. Also, in important classes I would explain my ‘unintentional falling asleep’ situation to a classmate and they would let me compare notes when I asked. I could focus enough to stay awake during tests, but my disability services coordinator told me they would work with my teachers to find a better test taking setting if I ever encountered sleeping issues during tests. I hope this helps!


#5

Nobody ever told me the things I needed to know …one is, “You can be smart as a whip and sleepy too!” I was a student athlete and am now a teacher (with narcolepsy). I’ve worked with students with disabilities and they eventually learn, as do all students starting out, that you have to dig deep to take on the challenges. You have to set aside the compassions that we need as children. If you don’t, you can’t compete with other graduates. School is just the first step on your long journey of choices.

Your professors will never understand or know what to do! You have to find out for yourself and then tell them. Often, we don’t know where to start and the job of the ODS (Office of Students with Disabilities) can be easily misunderstood. They can help but its up to you to find what works. Seize all the information you can, and use it to help shape a better world. Here are some tips that might help:

  1. Record all your classes! If your prof won’t allow it (and some won’t—my own N physician won’t allow it) then sneak whatever device in that will get the job done.

  2. Readers for your texts can be helpful and can be provided by your ODS.

  3. Find a place to take naps (15-20min, twice daily worked for me).

  4. Give yourself some buffer time to wake up in the mornings. If you set your alarms for the last minute, you’ll end up tired AND angry all day.

  5. Get a “service pet”. My cat won’t let me doze off if I am petting her while I study or am reading.

  6. Get a bed shaker like people who are bed ridden use to prevent bed sores. It was and still is my last line of defense to get me to class on time. Additionally, I set 4-5 auditory alarms.

  7. Move a lot when you study: dance, jog, walk, swim (yes, they make earbuds now that you can do that—take into the water).

  8. Outline your chapters. Then integrate your class notes (or vice versa) using a different font color.

  9. Dragon is the program that is supposed to type while you talk…I don’t know about those…they weren’t around back when I was a student. However…

  10. NaturalReader is a program that will read text to you…and IT’S FREE. Google and download it.

  11. Quizlet is an interesting website.

  12. Find or form a study group so you can discuss lectures. And don’t worry about what other people think. They don’t get it; they never will!

  13. Go to EVERY class. What you experience in class is immeasurable compared to trying to catch up.

  14. Learning to understand that a deadline is a deadline will be a milestone! Recognize that any changes you are going to make will be before the deadline…NEVER afterwards.

  15. Stay ahead of the preparations for your own particular needs. Don’t let the ODS or the Testing Center be the impairment! Yes, you’ve got excuses…don’t use them.

  16. All the people around you will be experimenting with things...everything from drugs to all night cramming. In the long run, the only thing that works is being responsible to yourself.

  17. Some classes I had to take twice. Some because I failed; some because I dropped. If I decide to get a PhD, I will arrange to take ALL my classes twice—the first time, maybe they’ll let me come sit in. Otherwise I’ll have to consider the cost of auditing.

  18. Stay ahead and on top of everything. Your profs know when you’re making an effort and when you’re not. Hitting their office hours a few times lets them think you care—but that’s not something you can fake so be careful on that one.

  19. Plan to study your butt off! If it was easy, they’d call it golf!

  20. Don’t be afraid to use the counseling center, either…although they won’t know about pwns either.

  21. If you’re going to make it, you are going to be an exceptional person so start acting the part.

I was a 3 time All American in Gymnastics and currently teach Kinesiology and classroom classes at the college level. I was diagnosed at the age of 51 with narcolepsy with cataplexy. My first symptom was age eleven. Hope I can be of some assistance...Tex44


#6

As far as keeping yourself safe:
If you’re taking medication, be careful who you tell that you’re taking meds & what kind. It’s college, kids are trying all types of drugs or selling them. Students have stolen things out of other students rooms. Make sure you keep them some place safe…& lock your room door every time you leave! If you stay out late, like to go to a party or something. Make sure you’re with people who you trust. I don’t party, do drugs or drink to get totally wasted, but if you should fall asleep for any reason have some one there to make sure no one messes with you or can take you home.
I had my doctor call the ODS lady because she half jokingly said to me, “it kind of sounds like you just want an excuse to sleep in.” My doctor made it much clearer for her to understand. :wink:
If you have teachers that aren’t complying with the arrangements made for you through ODS - go let ODS know!
Taking notes &/or while doodling in class helps me stay awake. I have sketch books full of things I’ve drawn just from trying not to doze to a boring lecture!
-Study Tip- I get on YouTube & see if they’re are any documentaries from like the History Channel or BBC on what I’m studying. It’s much easier than trying to go off of JUST reading. Keeps my brain much more active. Studying with friends always helps too!
Also, my doctor prescribed me 10mg tablets of Ritalin that I can take if I’m feeling sleepy & need to make it a couple extra hours.

If I have a morning class, for example at 8:00am. I’ll set out my meds & water on my side table & set my alarm for 6:00am so I can groggily wake up enough to take them real quick. So by the time my 7:00am alarm goes off my heart rates already going & it makes getting up & getting ready much easier!
One thing that I figured out is to make sure you’re okay mentally & emotionally. Being depressed or traumatized makes the sleepiness worse, even harder to get out of bed & keep up with classes. Don’t be afraid to go to see a counselor.
For me, I found that taking one or two classes at a time worked better than trying to do five, six, seven classes at a time - keep in mind I’m also working. It gave me more of an opportunity to focus & get the work done.

Every narcoleptic case is different in some ways and different things work better for different people. There’s no set way you have to do something if you have narcolepsy. You just have to figure out what works best for you.


#7

What is ODS? Mikayla, any update on how school is going? Tex44, is there anything a person can do about getting the first grade removed when having to take a course over because of failing? I have failed a few courses, paying for them twice is killing me too. I am so close to being done but it has been a struggle. Right now, I have an extension until the 10 to finish my Senior project but I have so much work to make up I feel like I am going to fail anyway. It is frustrating to not be able to show them my true potential because I fall asleep or because of the brain fog.


#8

Hi Mikayla, you’re not alone. I’m a college freshman and I’m currently struggling with my narcolepsy as well. I sometimes drift off in class, but I’m on 70mg of Vyvanse and 10mg of adderall so it kinda helps to stop me from having sleep attacks, but I still feel groggy and exhausted.
I’m not handling it well so far either. I can’t stick to a schedule and I’m a mess rn. I lack motivation to do anything other than lay around most of the time so my grades are suffering.
I don’t really have much of a recommendation since I’m in the sameness position as you, but I talked to myself professors and told them about my narcolepsy and hey were rather niceness about it. I don’t get extra time on assignments, but I can record lecture’s audio with my phone in case I have a sleep attack and I’m allowed to stand up if i feel tired. Try talking personally a it has your professors or emailing them. Hope everything gets better for you !