39 replies to this topic

[Miss Jens]

Hi, I'm a 24-year-old female graduate student and I was recently diagnosed with Narcolepsy w/o Cataplexy. Being so tired and always needing to sleep and nap really affected my relationships with friends, family, and significant others. They (and I sometimes) thought I was just lazy, rebellious, or irresponsible. I'm also bipolar, which made the sleep diagnosis much more difficult to find.

I was wondering...How do other college students/grad students/20-somethings cope with this? It's hard because we are still young and recently out on our own, usually strapped for cash and insanely busy...Any input? Any stories to tell? Do you friends hear "narcolepsy" and immediately think "Deuce Bigalow" too??

[Lovemyhusband]

Hello, I don't have any additional info to share with you but I wanted to let you know you are not alone. My husband has just been dx with N w/o cat. It is very frustrating to have people refer to the deuce bigalow movie so I hear you on that. We are about 10 yrs older than you are so I can tell you that you will find people who are understanding about your situation, and those who are less than understanding don't deserve your time. Good Luck, I am sure you will get into a "groove" now that you have an answer to the EDS and enjoy your life.

[lizfromli]

I am 25 and have been diagnosed since May 2006, but started to have serious symptoms Summer 2004. I decided not to go to grad school, but instead I was moving from one state to another switching jobs every 11 months. I didnt know what was wrong with me half the time, I cant imagine what everyone else was thinking. I started a new fulltime job last June - in searching for jobs, I did have to consider limitations from the Narcolepsy - I also moved back near my family, in hopes of having a bit of additional support if needed. I also chose to move back to NY because the new job came with good health insurance (with the cost of drugs - i dont have the luxury of not having any health insurance at this point) in addition to being a location with a good neurologist close by and the option of public transportation.

Routine really is key. I dont know what to say about school, except I have started taking more medcation, and found that provigil PLUS dexedrine (stimulant) helped to reduce the brain fog that was most frustrating.

[moonlight2melody]

hi, i jusst wanted to say that i too am a college student (19) and has had narcolepsy w/o cataplexy since third grade and its not pleasant. i still dont know what im doing.. i hate depending on other people for transportation and money for food and supplies. I want to get a job but without trans. and pills and stuff to keep me awake its hard >.<

[greatbig47]

moonlight2melody,

I know how you feel...and I hope you can believe it can happen! I had Narcolepsy w/ Cataplexy from the age of 5, and now at age 40 I can tell you it is VERY possible.

With narcolepsy, it always seems like our confidence and ability to see our own greatness seems to take a serious hit. It stems from our lose of control over certain things our bodies do (especially from an early age like you and I experienced).

Know that it's a sucky smptom of narcolepsy. Know that your probably a lot better on track than you'll feel at times. When the narcolepsy tells you, "uh...you can't do that"....call it on it. Take a stand in your mind and say "Oh yeah? B.S.!"

I'm from MI to (West Side) and have been unlucky at finding a support group. You know anything?

-Stu

[becky]

Hey yall!

I'm a 21 year old college student who just got diagnosed with narcolepsy w/o cataplexy and ADD at the end of this summer--way to go back to school, huh? I'm still trying to find the right combination of meds for me--currently trying out Provigil combined with Adderall to get me going in the morning and help me focus in class and to do work. They're working out okay--I feel more awake but still feel like I have the whole 'brain fog' thing going on a lot as well and the Adderall's honestly not helping me out as much as I had hoped it would.

The main things I've had problems with were getting up in the mornings to go to class, paying attention in class (and not falling asleep when the lights went out for presentations) and then focusing enough to sit down and actually work without my mind wandering in fifteen different directions or wanting to take a nap. I actually just decided to switch from a pre-med major to English--I didn't see myself being able to finish my pre-med reqs with the trouble I'd already had with them and the recent diagnosis, so oh well--hoping for something in publishing or the like. My doc said that I shouldn't not strive for something (aka med school) because of my narcolepsy but honestly, I don't think I would have been physically or mentally possible haha.

Anyway, I haven't really done much to cope--besides take a LOT of naps all four years hahah. I'm trying to get on a set schedule of waking and sleeping so we'll see how that goes. I also try to keep myself on campus and not go back to my apartment before all my work's done because if I do, I get so distracted by everything that it takes three hours to write a one-page response (example--this post and the fact that the paper I started at five thirty has only three lines on it). So I honestly haven't done well at all at school, and now I'm just getting frustrated and upset at not being able to study and work like everyone else. Is there anything yall have done that's really helped? I'm really trying this semester but I'm already behind and I'm only taking 12 hours--what am I doing wrong!

Any ideas? I'd really appreciate them! And yes, I've gotten the Deuce Bigalow (AND Moulin Rouge) question almost everytime I've told somebody. Sigh!

Becky

[sleepybrown]

Hi I am 25 and was diagnosed at the age of 17. I will be graduating from undergrad this December God willing and the creek don't rise. Honestly it took me this long because I took off for two years to get my mind right after I let myself get a little too wrapped up in my social life and a guy in particular. Dating for me was a negative in high school because I fell asleep everytime I got in the car my mom was forever afraid someone was going to DO something to me so I let loose in college.

Becky I know that they tell us to have our naps and schedules but I always did really well on the all-nighters. Even now that I am all old and stuff give me a Rockstar and I can lay down a 8-10 page paper in a night and still get to my 10am. Granted the focus thing is an extra layer I dont have to contend with I get my books on tape and I found out about it from one of my friends that is ADHD. ANy text book you have they will read onto one of those four sided tapeplayers. Reading for the Deaf and Blind do it for the Disabilities services office at my school. It helps for me to pace and be active while they read. I dont know if you have heard of it but it was a helpful accomdation for me. Oh and I hate that scene in Deuce Bigelow with the girl and the soup because that happens to me, like all the time. I wake up in the caf and my friends are like man we kept thinking you were really going to take a header in your soup this time but you always stopped just before the bowl. I liked the guy in Moulin Rouge, he didnt seem very extreme to me but that just speaks to my degree of the condition. Oh and I hate the weiner dog video they show in Pysch 101 about narcolepsy, folks laugh about that for weeks later. I just stopped telling people I had Narcolepsy and by people I mean peers, not admin or profs.

[lisagoem]

I am 25 years old and was diagnosed with narcolepsy when I was 10 years old. Reading your experiences, I am some how glad that I got it earlier than later because I still had the support of my parents when I was younger and had time to get used to it before the important years such as university. Getting used to university was definantly a challenge. So many of your classmates, doing all nighters, going out and partying all night then going to class. The main thing that got me through university was keeping to a schedule (as much as possible) and having naps during the day (even if they are in a cubicle at the library). I would still fall asleep in class fairly often, but explained it to my friends and got notes off them when mine were all scribbles. I haven't found many people who are rude about my narcolepsy, however I usually only tell close friends, and have learned to laugh about it, even though when it is happening its not really funny. I never told my profs about it, but I would recommend that, and most universities have disability centres where you could change your schedule of your exams for example. It never got so bad that I had to do that, or I was just too proud I guess. One thing I would recommend now, looking back, (I graduated 2 years ago and now work full time) is that I would choose a career that doesn't involve driving, ie. any kind of field work or sales. Because I did so well in school, I didn't really think about any limitations and chose what I liked, now I am struggling with the fact that my job involves a lot of driving. Good luck, I know how hard it can be.

[resec003]

Hi everyone! I am a 21 year old student at the University of Minnesota. I was diagnosed about a year ago. I am so thankful that I found this website and can see others are going through the same things as I am. I am still overwhelmed with this whole thing...and coming back to school is just plain hard. I am at a University with some of the brightest minds around, and it is a struggle. I see all of the things my friends do in one day and just wish I could too. But, I keep believing in myself that I can reach my goals in life. I plan on attending law school when I graduate and that is a scary thought...it is hard enough to keep up with my undergrad! During the summer, my parents sat me down and asked if I really felt I will be able to handle law school since I have this illness. That was a hard hit to me. They have ALWAYS been behind me about my dream of attending law school, so to see them unsure was difficult. (They were just trying to help by letting me know that I do not have to have such a lofty goal.) BUT I then went out and got a full time internship at an attorney's office and was able to stay awake SO much better than I can at school. I think it is because I was not bored while I was there, there was always something going on and a new thing to come up which needed to be worked on! So, maybe that could be something others could do with their chosen field in order to get a burst of confidence!

I also have a question. My doctor wants to put me on GHB at night. While I am uneasy about this decision for many reasons, the main two are: (1) I would be on a college campus with the date rape drug, and (2) What if my apartment building starts on fire!?!? If anyone else on that drug could tell me how well it worked for them I would appreciate it! I just want to decide if the risks are worth the benefit!

Thanks to everyone. It is so helpful just to read that others are struggling too.

[Mike M]

resec003,

While I am MUCH older than you are, I wanted to respond to your post for a few reasons. One, I too live in Minnesota and wanted to make sure that you know that there is a support group here called MOONS. Two, I think it is fantastic that you are returning to school and have law school next on your "to do" list. Follow your dreams, even if they need to take little longer. Push yourself, but also be good to yourself. Certainly, the story about your internship is a good sign, but be careful. I know now that I had signs of my narcolepsy throughout my teens and twenties, but it wasn't until my thirties that it massively impacted my life. My diagnosis finally came last year at 39. I too used the energy I got at work to keep myself going, but I am sure that it also cost me much of my health. I am finally learning balance, and I hope you can at a much earlier age. Finally, I take Xyrem. I think it is a good drug, and I know it works much better for some others than it does for me. I certainly understand your worry about having it on campus, but the benefits will far outweigh the worry. Certainly, you will need to figure out a way to keep it safe. As for the fire worry, you will still be able to wake up, just make sure that you have someone you can trust able to help you. Please feel free to ask more questions. I hope this helps and am thrilled that you are finding comfort in these forums.

[misslu]

Hi Everybody! I'm a 23 year old college student and I was diagnosed this past summer. I find that school is what really keeps me going. It'd definitely hard, but I think the benefits outweigh the struggles. I'm planning on attending grad school next year and am working on getting myself together for applications at the same time as finding the right meds. Life will be more challenging for us, but if you find something you really want to do with your life and are passionate about its worth the struggle. I'm always excited to go to work and I know that's what keeps me focused.

Resec003, I started xyrem a few weeks ago and am sooo glad that I did. It's been the only thing that has helped me. I went through all the stimulants and when I got my script for xyrem my doc said this was pretty much my last option. Needless to say I was totally freaked out that it wouldn't work or that it would make me feel like crap. When I first started I was really depressed because it didn't work and I had some nasty side effects. I stayed with it though and I have to say it's been nothing short of miraculous for me. Everyone of course will be different, but I would urge you to really consider it. I still have bad days and some side effects I'm working through, but it's worth it. Don't be scared to try it. You can always start at a reallly low dose and work your way up. As far as keeping it safe is concerned, you could get a little safe or firesafe box to lock it up. They're pretty cheap and would give you peace of mind. I was really worried about not being able to escape the house if there was a fire or an emergency too, but I find that while it's very unpleasant to get up at night, on a lower dose I still can. You could have a "buddy system" type setup with someone you trust. You might need someone to make sure you dont tip over, but I wouldn't let fear stop you from giving it a try. That's just my two cents though. everyone is different.

OK, I've rambled on for awhile now. Its just so weird to read a post a have it be your life story being told by someone else :-)

[Lais02]

Hi everyone! I am a 21 year old student at the University of Minnesota. I was diagnosed about a year ago. I am so thankful that I found this website and can see others are going through the same things as I am. I am still overwhelmed with this whole thing...and coming back to school is just plain hard. I am at a University with some of the brightest minds around, and it is a struggle. I see all of the things my friends do in one day and just wish I could too. But, I keep believing in myself that I can reach my goals in life. I plan on attending law school when I graduate and that is a scary thought...it is hard enough to keep up with my undergrad! During the summer, my parents sat me down and asked if I really felt I will be able to handle law school since I have this illness. That was a hard hit to me. They have ALWAYS been behind me about my dream of attending law school, so to see them unsure was difficult. (They were just trying to help by letting me know that I do not have to have such a lofty goal.) BUT I then went out and got a full time internship at an attorney's office and was able to stay awake SO much better than I can at school. I think it is because I was not bored while I was there, there was always something going on and a new thing to come up which needed to be worked on! So, maybe that could be something others could do with their chosen field in order to get a burst of confidence!

I also have a question. My doctor wants to put me on GHB at night. While I am uneasy about this decision for many reasons, the main two are: (1) I would be on a college campus with the date rape drug, and (2) What if my apartment building starts on fire!?!? If anyone else on that drug could tell me how well it worked for them I would appreciate it! I just want to decide if the risks are worth the benefit!

Thanks to everyone. It is so helpful just to read that others are struggling too.

I'm 24... I used to go to the University of MN too! I transfered to the University of St Thomas though. Anyways my parents say the same thing to me. I'm studying mechanical engineering, and I'm not giving up! I love my major and that keeps me going. I agree if you're in the right environment, you are excited and that does help.

So... my Dr. also has recently prescribed Xyrem to me. I'm pretty nervous about it too!

Hi Everybody! I'm a 23 year old college student and I was diagnosed this past summer. I find that school is what really keeps me going. It'd definitely hard, but I think the benefits outweigh the struggles. I'm planning on attending grad school next year and am working on getting myself together for applications at the same time as finding the right meds. Life will be more challenging for us, but if you find something you really want to do with your life and are passionate about its worth the struggle. I'm always excited to go to work and I know that's what keeps me focused.

Resec003, I started xyrem a few weeks ago and am sooo glad that I did. It's been the only thing that has helped me. I went through all the stimulants and when I got my script for xyrem my doc said this was pretty much my last option. Needless to say I was totally freaked out that it wouldn't work or that it would make me feel like crap. When I first started I was really depressed because it didn't work and I had some nasty side effects. I stayed with it though and I have to say it's been nothing short of miraculous for me. Everyone of course will be different, but I would urge you to really consider it. I still have bad days and some side effects I'm working through, but it's worth it. Don't be scared to try it. You can always start at a reallly low dose and work your way up. As far as keeping it safe is concerned, you could get a little safe or firesafe box to lock it up. They're pretty cheap and would give you peace of mind. I was really worried about not being able to escape the house if there was a fire or an emergency too, but I find that while it's very unpleasant to get up at night, on a lower dose I still can. You could have a "buddy system" type setup with someone you trust. You might need someone to make sure you dont tip over, but I wouldn't let fear stop you from giving it a try. That's just my two cents though. everyone is different.

OK, I've rambled on for awhile now. Its just so weird to read a post a have it be your life story being told by someone else :-)

Misslu-

This might sound stupid, but oh well lol. I'm worried about not being able to be a somewhat typical college student if I start Xyrem. Its not like I go out all the time, but I don't think I can give up the small social life I do have. I hope you understand what I mean... it seems at this age if you want to see friends... you go to the bar on the weekend. If I took Xyrem would I need to give that up? I don't know if I'm ready to grow up that much yet lol!

[misslu]

Lais02,
I totally understand your concern, but I don't think you would have to give up your life. It's hard to be forced into growing up because of thing out of our control! I never got to have any "college years" because I was sick and miserable, sometimes I do wonder what it would have been like

I'm not saying you should or shouldn't take xyrem because I think that it's a personal decision that each person has to make, but having said that I don't think you should be afraid to try it if that's what you decide is best. I don't drink anymore, but I was told by both my doctor and the nurse assigned to me from the xyrem success program that if I wanted to go out and drink I just can't take my xyrem that night. So the possibility is still there. My sleep is too important to me to do that, but it's not like my life is over and I absoultely HAVE to be in bed by 11:00....I do choose to be most times though

[resec003]

Lais02,

It is good to hear that you are not letting this stop you! It really is hard to hear something like that from your parents, but they are doing what they think is best! It is amazing how much of a difference the right work/subject makes to keep (some) of us more awake and alert. I cannot get over how odd this illness is!! I have decided to at least listen to what my Doc has to say about Xyrem and to voice my concerns to him. So many people have said how much it has helped their life, so I have decided to at least consider it more than I did before. The wanting to go out concern is one that I have too! I don't want to miss that time with my friends!!

Don't ever give up on your dream! Support from others and just knowing that other people are going through this makes it so much better!

I'm 24... I used to go to the University of MN too! I transfered to the University of St Thomas though. Anyways my parents say the same thing to me. I'm studying mechanical engineering, and I'm not giving up! I love my major and that keeps me going. I agree if you're in the right environment, you are excited and that does help.

So... my Dr. also has recently prescribed Xyrem to me. I'm pretty nervous about it too!



Misslu-

This might sound stupid, but oh well lol. I'm worried about not being able to be a somewhat typical college student if I start Xyrem. Its not like I go out all the time, but I don't think I can give up the small social life I do have. I hope you understand what I mean... it seems at this age if you want to see friends... you go to the bar on the weekend. If I took Xyrem would I need to give that up? I don't know if I'm ready to grow up that much yet lol!

[Mike M]

I have decided to at least consider it more than I did before.

resec003,

Thoughtful and mature decision! I think it is awesome that you are open to considering it. I am even more impressed that you are still going to make your own decision. I finally started to question my own "awe" for doctors in the last two years. Before that I would simply do things because the doctor MUST know what he (I use the male pronoun here on purpose. Most female physicians that I have know do not have the same arrogance that I have encountered with male doctors) is doing. LOL! Fortunately, my narcolepsy helped me to understand that an incredible amount of information about our physiology is well beyond the reach of medical science - at least for now. Keep listening to multiple perspectives, AND continue to follow your own insights.

[Marcianna]

Ok so I am out of the twenty something range, but I am having an issue with my college this time around... They have been pretty good about most things, like I have double time for test, a note taker as back up, My teachers wont yell at me for being late or falling asleep, And I get to bring a friend with me on a field trip. But the one thing I really really need is some place to crash for a bit. The set up here is this. I dont drive and even if I did the school is about 1/2 hoyr away for me. Taking the bus is ok I guess but it only goes out there three times a day 8,12 and 4. during the day time is the times I am most at risk for sleep attacks. so for example, (8 is out completely,) If I go in at 12 and know I wont be coming home till either 7:30 or 9 pm, then at some point, I need to take a nap. I would be nice If I could go home between classes but I cant. the trip itself, takes about an hour and a half, so there is three hours right there coming home and going back.... Meanwhile on this rather decent sized campus there is nowhere to lay down. The library wont let me sleep in there, The nursing dept. wont let me use one of their rooms with a bed in it. Apparently it is to much of a hassle for them to have to make the bed up and put the dummies back in. And Some how or another Every single room is being used for something at some time or another.(which is crap by the way, I know better)

So with all they have already been able to do for me, am I asking to much? I'm afraid of being a pushy B***h anf burning important bridges I will need next quarter. The thing is that naps are so random with me since my schedule is off, I cant even give them a time I need to do this. I don't even know any idea's to suggest to them. so..... now what?

[misslu]

Do they have a commuter lounge? I go to a huge university and I have lots of places to nap if need be. I can't believe they won't let you nap in the library. I see people napping in the library that have nothing wrong with them all the time....unless about 20-40% of the entire student body has N I don't think you're being too pushy, you need what you need. Would people tell you to leave if you just crashed somewhere like the student union? I guess maybe I go to a weird college, lol. A lot of universities have private study rooms in the libraries or tucked away on campus where you get a code or key to enter them. I'm in an honors program and am offered access each year. You end up sharing them with a couple other people and you can just leave you stuff in there or whatever. You might want to ask if you school has those. I can't believe that there's nowhere to go, maybe they just think you "want" to nap and don't know it's a medical necessity. Sorry I can't be of more help, that sounds so frustrating! Good luck!

[Kimberly]

Marcianna --

You might want to see if there is a disability resource center on your campus, and see if they have a location or a suggestion for you. Even if they don't, if you have an idea of a place, they could help and be your advocates to get permission.

Ideas:
Private study room in library
Private testing room in testing center
Access to a residence hall "day room"
Access to a "mother's room" (a mother's room is a place that employers typically provide for female employees to go and pump breast milk after they return to work from maternity leave -- I was able to get permission to nap in the mother's room at my last job, but had to schedule it in advance.)

Good luck, babe!

[Lais02]

Ok so I am out of the twenty something range, but I am having an issue with my college this time around... They have been pretty good about most things, like I have double time for test, a note taker as back up, My teachers wont yell at me for being late or falling asleep, And I get to bring a friend with me on a field trip. But the one thing I really really need is some place to crash for a bit. The set up here is this. I dont drive and even if I did the school is about 1/2 hoyr away for me. Taking the bus is ok I guess but it only goes out there three times a day 8,12 and 4. during the day time is the times I am most at risk for sleep attacks. so for example, (8 is out completely,) If I go in at 12 and know I wont be coming home till either 7:30 or 9 pm, then at some point, I need to take a nap. I would be nice If I could go home between classes but I cant. the trip itself, takes about an hour and a half, so there is three hours right there coming home and going back.... Meanwhile on this rather decent sized campus there is nowhere to lay down. The library wont let me sleep in there, The nursing dept. wont let me use one of their rooms with a bed in it. Apparently it is to much of a hassle for them to have to make the bed up and put the dummies back in. And Some how or another Every single room is being used for something at some time or another.(which is crap by the way, I know better)

So with all they have already been able to do for me, am I asking to much? I'm afraid of being a pushy B***h anf burning important bridges I will need next quarter. The thing is that naps are so random with me since my schedule is off, I cant even give them a time I need to do this. I don't even know any idea's to suggest to them. so..... now what?

I'm in the same situation. Actually I haven't directly asked the disability person for a room to nap... but I've been hinting at it. They make me feel like I'm crazy for asking for everything I already have asked for. I hope your school's disability program is better than mine lol.

The way I work some naps in is by scheduling my classes with time between... this makes for a much longer day than most students, but its working so far this semester. I live close to campus, so I just drive or take the bus home for a quick nap. I suppose I could sleep in the library, but I get paranoid lol.

Try bringing your disability services person some reading material on N. I did this with a prof once, and I was shocked because it worked so well. He finally took me seriously after that. It could be they just don't have a clue about N... Remember most people have no idea!

[Mike M]

Building off Kimberly's suggestion, if the school does not have a resource center for people with disabilities, you should go straight to the Dean of Students. While the school has provided you accommodations, they still need to meet all of your needs. If you were in a wheelchair and had a class that was in an inaccessible building, would you feel bad about asking them to move it? My guess is that the school has NO idea how important it is for you to have a space to nap. Even people who "get it" often don't fully get it. Perhaps bring some basic research about narcolepsy with you. The school definitely owes you this. Good luck!