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!
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.
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 adâs Iâm 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 2xâs for tests, in case I fall asleep during etc. Iâm 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.
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 âunintentional falling asleepâ 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!
Nobody ever told me the things I needed to know âŚone is, âYou can be smart as a whip and sleepy too!â I was a student athlete and am now a teacher (with narcolepsy). Iâve 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 donât, you canât 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 donât 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:
Record all your classes! If your prof wonât allow it (and some wonâtâmy own N physician wonât allow it) then sneak whatever device in that will get the job done.
Readers for your texts can be helpful and can be provided by your ODS.
Find a place to take naps (15-20min, twice daily worked for me).
Give yourself some buffer time to wake up in the mornings. If you set your alarms for the last minute, youâll end up tired AND angry all day.
Get a âservice petâ. My cat wonât let me doze off if I am petting her while I study or am reading.
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.
Move a lot when you study: dance, jog, walk, swim (yes, they make earbuds now that you can do thatâtake into the water).
Outline your chapters. Then integrate your class notes (or vice versa) using a different font color.
Dragon is the program that is supposed to type while you talkâŚI donât know about thoseâŚthey werenât around back when I was a student. HoweverâŚ
NaturalReader is a program that will read text to youâŚand ITâS FREE. Google and download it.
Quizlet is an interesting website.
Find or form a study group so you can discuss lectures. And donât worry about what other people think. They donât get it; they never will!
Go to EVERY class. What you experience in class is immeasurable compared to trying to catch up.
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 deadlineâŚNEVER afterwards.
Stay ahead of the preparations for your own particular needs. Donât let the ODS or the Testing Center be the impairment! Yes, youâve got excusesâŚdonât use them.
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.
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 twiceâthe first time, maybe theyâll let me come sit in. Otherwise Iâll have to consider the cost of auditing.
Stay ahead and on top of everything. Your profs know when youâre making an effort and when youâre not. Hitting their office hours a few times lets them think you careâbut thatâs not something you can fake so be careful on that one.
Plan to study your butt off! If it was easy, theyâd call it golf!
Donât be afraid to use the counseling center, eitherâŚalthough they wonât know about pwns either.
If youâre 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
As far as keeping yourself safe:
If youâre taking medication, be careful who you tell that youâre taking meds & what kind. Itâs 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 safeâŚ& lock your room door every time you leave! If you stay out late, like to go to a party or something. Make sure youâre with people who you trust. I donât 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, âit kind of sounds like you just want an excuse to sleep in.â My doctor made it much clearer for her to understand.
If you have teachers that arenât 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 Iâve drawn just from trying not to doze to a boring lecture!
-Study Tip- I get on YouTube & see if theyâre are any documentaries from like the History Channel or BBC on what Iâm studying. Itâs 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 Iâm feeling sleepy & need to make it a couple extra hours.
If I have a morning class, for example at 8:00am. Iâll 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 youâre okay mentally & emotionally. Being depressed or traumatized makes the sleepiness worse, even harder to get out of bed & keep up with classes. Donât 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 Iâm 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. Thereâs no set way you have to do something if you have narcolepsy. You just have to figure out what works best for you.
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.
Hi Mikayla, youâre not alone. Iâm a college freshman and Iâm currently struggling with my narcolepsy as well. I sometimes drift off in class, but Iâm 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.
Iâm not handling it well so far either. I canât stick to a schedule and Iâm a mess rn. I lack motivation to do anything other than lay around most of the time so my grades are suffering.
I donât really have much of a recommendation since Iâm 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 donât get extra time on assignments, but I can record lectureâs audio with my phone in case I have a sleep attack and Iâm 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 !
Your definetely not alone! Iâm just finished college and was only diagnosed 2 weeks before my final exams this year. I know how you feel I spent 4 years falling asleep in lectures, labs even sometimes at lunch. I became known as the sleepy girl because I didnât know what was wrong with me was just always so tired and unable to stay awake. The only way I got through college was by having friends who helped me by either nudging me to try keep me awake in a lecture and giving me notes. I always went to lectures even though I was asleep in most. Study groups are brilliant! Talking in a group and discussing topics can help you learn much more than you think!
I always kept study sessions short and made sure I had something to drink or eat to keep me awake. Also making sure your not in a warm room cause thatâs a killer.
Hope your getting on better now!
Q. Does anyone have any tips for dealing with cataplexy? Has any type of diet or exercise improves symptoms ?
Sciencestudent, a belated welcome to the narcolepsy community! We have another new member who you might like to meet: @Briana. If you click on the @ tag, you will be able to see her profile, and why I think you two might get along.
You should also have received a copy of a thread that I thought might interest a lot of people.
I hope you enjoy this group, and that you will continue to participate in the discussions. Now that youâve graduated, what are you doing? Do you have a science-related job?
