Hey everyone,
Currently I'm a sophomore in college, and while I only found out recently, I've been handling narcolepsy in school for years now. The problem is, I've been doing pretty miserably at it, and I was wondering if anyone who is dealing with it in school or did in the past had any tips. Particularly, how did you balance sleep, schoolwork, and social relationships?
Thanks
I graduated from college but struggled daily! It was when I graduated that I found out I was narcoleptic so I zombied through college.
Have you had PSG & MSLT? Any meds?
I like how you phrased that, totally sums up how I feel.
I honestly don't know what PSG stands for. I have had an MSLT though and I'm on provigil now. I'm a tad bit more productive, but that's about it.
Wallabe -- A few suggestions that may help:
1. plan to complete reports and assignments when you are most alert - in other words, don't go to the library to do research at the end of the day, try doing it first thing in the morning if that's when you have the most energy
2. take naps whenever you can
3. catch up on sleep during the weekend
4. stay on a sleep schedule that works for you while you are in school -- one of my sons has narcolepsy and the other one doesn't but he has insomnia. If you have trouble falling asleep at night, you have to tell your dr. -- you may need a sleep aid so you can get 8 hours of sleep per night.
5. I don't know what to say about the social aspect of your life except that I understand partying with friends is part of the whole college experience. However, you need to be vigilant with your health by not drinking too much, not doing any illegal drugs, etc. Please don't take this advice as I believe all college students do is drink and party... It's a fact of life that your age group is experimenting with their freedoms. Before you go out socially, just ask yourself if it is worth it to jeopardize your future by overdoing it.
Hey I know this is late, but just wanted to let you know you are not alone!! haha. I am taking 18 hours & I work full-time so most of the time it's very hard to make sure I maintain my GPA without getting extremely stressed.
Right now what works for me is taking most of my classes online and one class at school during the hours I am most awake. So far this has worked for me and I have been able to work on my own time and when I know I will be most alert, especially for testing my online classes are a huge blessing.
Besides that I make a list every Monday of what I need to finish by Sunday. I know this might sound "childish" or like I have OCD, but it works! That way I have everything I need to do in one place and can check it off so by the time Sunday rolls around I'm not trying to finish everything at once.
Also don't be afraid to let your teachers know what's going on or your Dean, they will work with you and it's better to let them know even if you don't ever need to make arrangements for things like naps or reasons for tardiness. Good luck!
great post
I am graduating with my Master's in May. I was diagnosed shortly after I started the program. You can do it! Visit the Office of Disability services (or similar) and talk with them about options--- since N* qualifies as a disability (and you DON'T have to collect an SSDI check to qualify) then they might be able to make some accommodations for you. Good luck! You can do it!
How are you doing now?
Hi Guy!
You are a very fortunate young man to find this out early in your life!!!! You can to make adjustments to reach your full potential.
I'm was 60 when I found out that I have Narcolepsy, my past experiences and life...all through school make sense, why did I score highly on the annual tests but barely pass day to day, why did I get "lost" looking out the window while in class, why did I have vivid nightmares and not able to move my arms and hands....why did I pass out in High School Chemistry every class? Why I was bored silly in school....you will understand reading about re my work life....
Then later working, Why was I rarely able to really "focus deeply and fully into my work"? (There were very few rare moments when I knew and realized "what that feels like"). How could I have multiple projects, people and jobs running and at the end of the day not remember any of the directions I gave but everything was running like clock work? See in bold below.
I did make it through my professional work life "successfully". But I was not able to really and fully do the level or kind of work I could have done. 30 successful years in one field - I would joke to myself re my position "I could do this stuff in my sleep", now I realize that's what I was doing, I was working in a sleep state and not challenged...at all. It's very startling looking back now and have you life open like a new book to you! But I'm glad it finally did.
I have hope, making slight progress healing my other conditions affecting me, so maybe down the road I can learn how to handle and live this "N" life, then do some of the things that I could have done years ago....
I really wish you well! Thank God that you found out early in life, it will make a huge difference for you!
Take care!
Ranger - I'm still adjusting. (Celiac disease and special diet turned out to be the least of my difficulties - special food, not a big deal for me). "N" a whole other story...
PS: Please stay away from the drugs and alcohol (my last position was at a major university, many of the students didn't realize that "College is a rare opportunity that for most only comes around once). Please don't take this time at school lightly. The condition makes you "different" from others, But special for yourself. You don't want to be like everyone else, that's pretty boring :) Find your gifts, passion, love and then figure out what works for you and do it!
I'm sorry it took me so long to get back here, but keeping motivated hasn't been the easiest.
Anyways, I really appreciate the replies. For one thing, it's nice just knowing I'm not alone. I'm definitely staying away from drugs. Online classes aren't really an option for me unfortunately. I"m still working on things, but some of the tips here are great.
I did my undergrad and my Masters after being diagnosed with Narcolepsy. I also worked full time and was a single parent. It was hard, trust me. I have also been diagnosed with ADD so Provigil and Nuvigil do not work well for me. My best combination is Adderall and Xyrem to sleep. Xyrem is outrageously expensive and most insurances do not like to cover it, but Lunesta worked will for me before the Xyrem. I worked midnights while I was in school and found that this was the best time for me to do work. Just keep trying different things until you figure out what works for you. Dont give up!!
Hi, this is my first post on this site. I agree with everything everyone has had to say. I went through all my college education, undergrad and grad, without knowing I had narcolepsy and like Ranger I would have times when I was brilliant and others when I was subpar... I could space off an entire day and not know why or how. I was 43 years old when I found out I had narcolepsy. We are all unfortunate to have narcolepsy however you are VERY fortunate to have found out this early in life. Even though the diagnosis may be difficult to wrap your head around initially but you can have a nearly normal life. I've tried a variety of medications and like the post above from Jensacutie, Adderall and Xyrem have been the best combination. I remember the day when I work up and could get out of bed when the alarm went off AND have a productive day. It was AMAZING. Xyrem gave me my life back. There is an organization that will help with the cost of the drug, I believe the name is Caring Voice Coalition, very nice people - truly wonderful.
My advice and some things that work for me are:
1) get on the med or combination of meds that work best for you. Do you get migraines also? If so, you will want to add a med for that. I am on Imipramine; shortly after I started taking it I stopped having migraines altogether. I'm sure recovering from my decades of sleep deprivation helped immensely also!
2) Make a point to jot down the times of day that you feel most alert, focused, aware... and conversely sleepy, tired, distracted and schedule your classes/activities around those times
3) Explain y(our) condition to instructors/profs, roommates and close friends. Your neurologist should have literature you can share with them to help in their understanding. You/we are disabled, by law our school/(most)employers must make reasonable accommodations to assist you in performing y(our) student/employee activities/duties. Most will be very understanding and accommodating. An example may be getting into a closed class that is during your normal 'wakeful' time versus having to take another section during a less wakeful time or scheduling test taking during your most alert times.
4) Your social life and alcohol. No one has mentioned this specifically in the thread so I will broach the subject. Those of us living with Narcolepsy (we have narcolepsy but it doesn't have us!) are to avoid alcohol and caffeine. All through college I was known as an ultra 'light weight' when it came to drinking. My friends and I would joke that I had some sort of alcohol allergy. One might think that having a drink in the evening may cause you to sleep better but the converse is true. It may not sound like fun but taking up the position of designated driver keeps you in the social loop, helps your friends and is markedly less expensive. Your friends and wallet will love you for it.
5) Exercise - another thing that hasn't been mentioned is physical activity. I won't go through a list of commonly known benefits I will however discuss how it is beneficial in living with "n". We should exercise twice a day, in the morning to help wake us up and late afternoon/early evening to help tire us out physically and the added benefit of stress management. It doesn't have to be a lot. I do 50 jumping jacks in the morning, a 7 minute ab routine and some yoga stretches (~20 minutes) and in the early evening a brisk 30 minute walk or bike ride after a light dinner, no heavy meals for us either.. makes us sleepy and if too late at night means we are digesting well into the night which keeps us from the deep restorative sleep we need. Another note about mornings, I keep a list of the things I have to do to get ready and a list of things not to forget to take with me. It helps with my focus in the morning and keeps the time from just 'disappearing'. I use a kitchen timer, obnoxiously loud! I can zone off in the shower and have until the water has ran cold. I also have a clock in every room.
6) To amp up the social aspects of your life, have your activities pull double duty. Find a work out partner especially for y(our) mornings. This will help you get out of bed and you will have someone to commiserate with ;) If appropriate, have study partners or groups. If done correctly, this can be a win/win for your studies and friendships. Never eat alone - this is one from the business world but also works for us. Everyone has to eat - make it social and/or network building whether it be with roommates, classmates, family or friends.
7) One last bit of advice, routine is your friend. Your basic schedule should be consistent, getting up, taking meds, eating, naps, exercise and going to bed at the same times everyday.
Someday, perhaps years from now, you might meet someone newly diagnosed with our condition or perhaps read and respond to a post like this one. I want you to be able to tell them that even though you/we live with this condition, you/we have a choice to live our best life.
Hello Mary Renee,
Thank you for this wonderful post, lots of good info!
Couple of questions about Coffee first. How does it not help us and how does it hurt us? I've practically lived on Coffee through my life. I understand that alcohol disrupts deep sleep before bed. But are you saying no matter what time of day?
"Time disappearing", sounds very accurate. It's like what happened to the day. Sticky notes are my new friends they especially like the kitchen table. The discouraging thing is writing down all of the "stuff" you need to do but just can't do it all. It's a stress-or for me.
I'm starting to see a pattern of the levels of alertness throughout the day. My question is can that be shifted to more "normal" times (I don't like the word "normal") or are we stuck with what it is?
How did you find out that you had it so much later in life? What was your initial reaction? Have you tried "a Light Therapy light to help wake up in the morning?
Great post, thank you for sharing!!!
Ranger
Mary Renee said:
Hi, this is my first post on this site. I agree with everything everyone has had to say. I went through all my college education, undergrad and grad, without knowing I had narcolepsy and like Ranger I would have times when I was brilliant and others when I was subpar... I could space off an entire day and not know why or how. I was 43 years old when I found out I had narcolepsy. We are all unfortunate to have narcolepsy however you are VERY fortunate to have found out this early in life. Even though the diagnosis may be difficult to wrap your head around initially but you can have a nearly normal life. I've tried a variety of medications and like the post above from Jensacutie, Adderall and Xyrem have been the best combination. I remember the day when I work up and could get out of bed when the alarm went off AND have a productive day. It was AMAZING. Xyrem gave me my life back. There is an organization that will help with the cost of the drug, I believe the name is Caring Voice Coalition, very nice people - truly wonderful.
My advice and some things that work for me are:
1) get on the med or combination of meds that work best for you. Do you get migraines also? If so, you will want to add a med for that. I am on Imipramine; shortly after I started taking it I stopped having migraines altogether. I'm sure recovering from my decades of sleep deprivation helped immensely also!
2) Make a point to jot down the times of day that you feel most alert, focused, aware... and conversely sleepy, tired, distracted and schedule your classes/activities around those times
3) Explain y(our) condition to instructors/profs, roommates and close friends. Your neurologist should have literature you can share with them to help in their understanding. You/we are disabled, by law our school/(most)employers must make reasonable accommodations to assist you in performing y(our) student/employee activities/duties. Most will be very understanding and accommodating. An example may be getting into a closed class that is during your normal 'wakeful' time versus having to take another section during a less wakeful time or scheduling test taking during your most alert times.
4) Your social life and alcohol. No one has mentioned this specifically in the thread so I will broach the subject. Those of us living with Narcolepsy (we have narcolepsy but it doesn't have us!) are to avoid alcohol and caffeine. All through college I was known as an ultra 'light weight' when it came to drinking. My friends and I would joke that I had some sort of alcohol allergy. One might think that having a drink in the evening may cause you to sleep better but the converse is true. It may not sound like fun but taking up the position of designated driver keeps you in the social loop, helps your friends and is markedly less expensive. Your friends and wallet will love you for it.
5) Exercise - another thing that hasn't been mentioned is physical activity. I won't go through a list of commonly known benefits I will however discuss how it is beneficial in living with "n". We should exercise twice a day, in the morning to help wake us up and late afternoon/early evening to help tire us out physically and the added benefit of stress management. It doesn't have to be a lot. I do 50 jumping jacks in the morning, a 7 minute ab routine and some yoga stretches (~20 minutes) and in the early evening a brisk 30 minute walk or bike ride after a light dinner, no heavy meals for us either.. makes us sleepy and if too late at night means we are digesting well into the night which keeps us from the deep restorative sleep we need. Another note about mornings, I keep a list of the things I have to do to get ready and a list of things not to forget to take with me. It helps with my focus in the morning and keeps the time from just 'disappearing'. I use a kitchen timer, obnoxiously loud! I can zone off in the shower and have until the water has ran cold. I also have a clock in every room.
6) To amp up the social aspects of your life, have your activities pull double duty. Find a work out partner especially for y(our) mornings. This will help you get out of bed and you will have someone to commiserate with ;) If appropriate, have study partners or groups. If done correctly, this can be a win/win for your studies and friendships. Never eat alone - this is one from the business world but also works for us. Everyone has to eat - make it social and/or network building whether it be with roommates, classmates, family or friends.
7) One last bit of advice, routine is your friend. Your basic schedule should be consistent, getting up, taking meds, eating, naps, exercise and going to bed at the same times everyday.
Someday, perhaps years from now, you might meet someone newly diagnosed with our condition or perhaps read and respond to a post like this one. I want you to be able to tell them that even though you/we live with this condition, you/we have a choice to live our best life.
I agree with all that Mary Renee says. My best tip is good sleep hygiene is your best friend! By that I mean, make sure you sleep in a bed that is comfortable , a room the right temperature for you, with no sounds and lights. It makes a world of difference. A new tip I learned the other day, turn your alarm clock where you cant see it or you will play the "how many hours? game. Like I have to be up in so many hours or I have only been asleep so many hours.
I would particularly make sure that you talk to all of your teachers / professors about the issue. Keep them in the loop and updated, because they'll often work with you on scheduling issues and won't dock you for missed attendance if it's related to narcolepsy. If you can, get a note from your physician to let them know that it's real. You will have to explain to them how N effects you personally, since most people aren't educated at all when it comes to this condition.
I know that many of my professors required a doctors note every time you missed a class or it counted against you (usually it was 3 strikes and they lower you a grade)... but obviously someone with N isn't going to run to their doctor or an emergency room every time they can't fully function. You may also be able to get extensions on assignments, particularly those that have a quick turn-around, if your teacher is aware.
I don't know anything about your personal "brand" of N, but I know that it can be difficult to stay awake during tests, midterms, and finals, so it may be worth talking to your teacher about working in a nap somewhere during any particularly long tests. Obviously you wouldn't ask for extra time as that would be unfair to the rest of your class, but perhaps you can break up your tests into two pieces (each half of the time) with a nap in-between. This will really require the support of your teacher since either they or someone they trust will have to donate time outside of the usual hours to make sure that you get enough time to finish your work.
[Edit] Haha, didn't realize this was a fairly old topic... but still, I know that this is an ongoing issue for many people, so it's fairly likely that someone else will read this topic for tips even if you don't need them anymore.