My name is Abraham and I have been recently diagnosed with Narcolepsy. I'm a 16 year old high school student who strives for honors and AP courses. However, this year my occasional fatigue and episodes of sleep took a turn for the worst. I began having sleep attacks lasting as long as four hours and always came back confused, tired, and unable to focus. Because of all this my grades dropped dramatically first semester. As for second semester I am struggling and pulling through but it is honestly exhausting my body even more. The sleep attacks are longer and I've begun to fall asleep in class, during tests, and more without knowing it. It is extremely frustrating and really tiring and I was hoping that I could get some advice.
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Hi, Abraham!
I'm sorry you're struggling so much. What medication(s) are you on? Have you spoken to your doctor about how much you are struggling?
I know I sound like a broken record if you've read any other threads I've responded to, but the first line of defense against narcolepsy symptoms is routine, routine, routine. You need to make sure you're following a strict schedule of sleeping, waking, eating, exercising, taking medications, and napping every single day.
Do your teachers know about your diagnosis? There are many things the school can do to help you, including adjusting your schedule, giving you extra time for assignments, and enlisting the help of someone else to help you take notes.
The good news is that college life is a little easier in terms of managing a schedule. You'll be able to schedule classes at times you're more alert.
Hi thank you for responding :). Right now I’m not on any medication because they still want to do an all day sleep study to confirm once more. I have been telling my doctor and she knows full well about how it is and she’s the one who got me the help. -We switched doctors because the previous one wouldn’t help at all- I understand that routine is important and I’ve been eating lightly and exercising but sometimes I take a nap and end up having a sleep attack afterwards anyways. Because of all of this I also suffer from Insomnia at night. I feel like a mess a lot of the time haha. Not all of my teachers know of my diagnosis yet because I want to give the one’s who aren’t understanding proof from my doctor. The school has been allowing me to postpone tests and work but it only ends up making things harder because its a gamble as to whether I’ll feel better the next day or worse. I’m thankful for your help and time and any other tips you have will be greatly appreciated.
Hi thank you for responding :). Right now I'm not on any medication because they still want to do an all day sleep study to confirm once more. I have been telling my doctor and she knows full well about how it is and she's the one who got me the help. -We switched doctors because the previous one wouldn't help at all- I understand that routine is important and I've been eating lightly and exercising but sometimes I take a nap and end up having a sleep attack afterwards anyways. Because of all of this I also suffer from Insomnia at night. I feel like a mess a lot of the time haha. Not all of my teachers know of my diagnosis yet because I want to give the one's who aren't understanding proof from my doctor. The school has been allowing me to postpone tests and work but it only ends up making things harder because its a gamble as to whether I'll feel better the next day or worse. I'm thankful for your help and time and any other tips you have will be greatly appreciated.
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Hi Abraham,
I know how you feel, I am 14 years old and was diagnosed with moderate to sever narcolepsy when i was 11. Honestly your really need to get that sleep study and its not bad all you do is sit in a room for 24 hours with a bunch of wires attached to you and they monitor your sleep throughout the night and have you take 30 min naps every 15 min the next morning. And as for the insomnia,try doing any homework or school work at night, that's what i do and it has been working for me. I know it sucks having narcolepsy and i know how u feel just know that you are not alone in the struggle.
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Hello, my name is Alina. My doctor suggested that I join a online support group, so, here I finally am.
I'm 15 years old and a sophomore in high school. I was diagnosed the beginning of this year but have had symptoms that have progressively gotten worse since I was about 12. Anyways, I was also in honors and AP. This year, my narcolepsy has gotten so much worse, I had to start independent study for the sake of my grades and sanity.
I also told my teachers, even the ones that terrified me. Before I was diagnosed, I just told them my sleeping is not what a normal person's should be and that I was seeing a sleep specialist that is trying to help me.
As for testing for narcolepsy goes, I had so many different tests done I was started to get irritated. I mean, I showed all of the symptoms of Narcolepsy (except for cataplexy), and kind of diagnosed myself. It took all of the four doctors and a brain MRI, an EEG, probably about 500 blood tests, and three different sleep studies for them to officially say I have narcolepsy. THAT'S LIKE 5 BILLION DOLLARS, MAN.
I feel for you, 184%. It sucks so much, especially when you work so hard. It's even more aggravating when people think you stay up all night an that's why you're so tired or you're just lazy and aren't going to try your hardest when you actually are. It also bothers me when someone asks me what Narcolepsy is and them I explain it and they reply with, "oh my gosh, I think I totally have narcolepsy too!"
Like, sorry, but no. Oh, and also when people say "you're just making it up!"
What? Why would I make this up? This, narcolepsy, has taken away so many opportunities away and has slapped me in the face more than enough times!
I'm sure you know how some of this feels. I'm sure a lot of people can. And yay, that's what these support groups are for.
I support you.
If your narcolepsy is anything like mine, not to sound like a druggy or anything but I hope you get some sort of medication soon, because it really does help a lot! At first, I was very reluctant to take medication but it does make a very noticeable difference.
Sorry for the rant, by the way. I'm new to this group and I probably should've just made my own post\topic or however this website works. Hahah!
HAHA Hi Alina 
I totally found your post refreshing and relieving. That is EXACTLY how its been for me. But I didn’t want to do Independent study so I went into overkill mode and cranked it out. Yeah, Im going to say it now. It is possible to go through it without Indep. study but it’s a KILLER. It totally wiped me out and thats no exaggeration. And oh god… yes I really hate what other people say too… “Lazy”, “druggie”, “emo” … I have a lot of good friends but people say things anyways you know? haha! But God its been a YEAR. I seriously self diagnosed myself too in the beginning of the year and told them I’ve had this before but NOT to this extent where I was out for like 2-6 hours… Blood tests… I’ve had like 10+ so far… EEG… and an MRI but NOTHing so far hahahah its driving me nuts! I have an all day sleep study coming up soon. If they don’t find anything I’m going to ask for a spinal fluid test. I really do hope I can get some medication because it’ll make it a LOT easier… Don’t you ever just feel hopeless and weak having to tell your teachers your “excuse” ? Anyways thank you so much for your post it was refreshing
Im suprised that they have done so many tests on you both.. the only test they did on me was the sleep study, and after that they diagnosed me... you shouldent have to have all these blood tests and crap, Honestly i think you both are going through too much to get diagnosed.
hi, Abraham and Alina. i am 16 years old and going into my senior year of highschool. reading both of your posts were pretty much exactly how I feel. I have been diagnosed with narcolepsy for about 3 years now, but he first time I can remember actually having a problem with staying awak was about 6th grade. my doctor just told me to go to bed earlier and get more exercise and bla blah. that was so annoying to hear too, because I knew something more was wrong with me. finally when I was about 14 and going to be a freshmen they finally took me to a neurologist from my fainting spells from the cataplexy. I now take provigil and fluoxetine and in some ways they help but I'm still always napping after school. my grades aren't nothin to brag about, major props to you guys for the awesome grades! I honestly don't know how you did it. shool is very tough, like you said. my least favorite was definetly gym, especially at the end of the day after a long day, that's the worst. my gym teachers didn't even know I had narcolepsy, which I thought was rediculous iv had them for teachers for 3 years! most of my teachers either dot know or act like they don't know because I get so tired and kinda black out sometimes where I start to forget what I'm doing. that's embarrassing to me. I'm sure you guys know the feeling.
it feels so good to find people that know what I'm going through, if you guys have ever seen the true life; I have narcolepsy, the girl on there is just like my life, it's hard for me to do anything. I cried watching it because of how much like my life it was
that probably sounds lame, but it's true. thank you for your posts it makes me feel so
much better that I am not the only one. and can vent like this and people will understand!
Hello everyone. I know how you all feel. I'm 19 years old and I was diagnosed with narcolepsy when I was 12, although my symptoms started when I was 10. I have every single symptom, including cataplexy. I didn't have to get many tests because at my sleep study I fell asleep in less than a minute like everytime. So yeah, I have it pretty bad. To be honest when I was diagnosed I thought my life was over. Everything that I had dreamed I would one day do seemed so far away. However I'm a stubborn person, so I became determined to not let my narcolepsy hold me back.
In order to do this I had to work a lot harder than a lot of my peers in high school. I had to make everyday a routine. I would try to get at least 8 hours of sleep every night and I would take a 30 minute nap every day after school. I take provigil and I would take it at the same time every morning. I also take vivactil to help me sleep at night and to help my cataplexy.
Of course not every day went prefect. Sometimes my routine would get messed up and my next day at school would be rough. Even with my routine I would have sleep attacks at school, although they usually only last a few minutes. However, I continued to get my good grades. I was in honors english and math. I got my drivers license and I work at a restaurant as a waitress. I graduated in the top 15% of my class of 700 and I graduated with honors. Right now I'm going to be entering my sophomore year of college.
I know what it's like to have people not understand you. To some of my "friends" my narcolepsy was a joke. They would laugh and tease me if I fell asleep. Sleepovers were horrible because as soon as the lights went out, so did I! I don't know if any of you have cataplexy but it's the worst. I get it when I laugh, so it happens a lot when I'm with my friends. They of course think its hilarious and they take pictures of me laying on the ground motionless. Needless to say, they are no longer my friends.
Sorry I ranted for a bit. I've gone seven years without talking to anyone who understands what I'm going through.
Narcolepsy is a tough disorder, and it will take time to figure out what medications and routines work best for you. I've also read that in some cases it gets better with age. In fact, I didn't have to take many naps during my first year of college! Sometimes you have to learn to laugh at yourself a little. I make jokes about my narcolepsy all the time. For example, I can't drive for longer than like 30 minutes so I make jokes about that. Surprisingly, there are many people who tell me that they would have never guessed that I have narcolepsy.
Oh by the way, here's a good college essay idea, write about how your narcolepsy isn't going to hold you back. Worked for me!
Hi Abraham. I was diagnosed with Narcolepsy at the age of 18, right when I began college. It was a MAJOR struggle. I have all of the symptoms. Cataplexy, hypnagogic hallucinations, sleep paralysis and ofcourse the chronic drowsiness.My cataplexy triggers the most when I'm angry, sometimes when I'm excited and other times when I'm sad. I felt like I had no control. I was so overwhelmed. I felt like my life was slipping away because of my inability to stay awake. I am speaking in past tense because I now have a significant amount of control and YOU CAN TOO. The answer is VITAMINS. I take Niacin(Flush-Free), Boron, B-6, CoQ-10, Royal Jelly, Ginkgo Biloba, Calcium and Lecithin. I only take 250mg of Nuvigil when I feel I need it. I don't trust pharmaceutical drugs. When I was diagnosed 5 years ago, the ratings of my sleep study were far above the normal stats needed in order to diagnose. I have a severe case of Narcolepsy w/all the symptoms and the main thing that saved me is VITAMINS. I am able to drive short distances without feeling drowsy and I just graduated from college. Don't let Narcolepsy take away who you are. You have it, it doesn't have you. Try the regimen. STAY POSITIVE. God Bless.
Hey Jw! I totally understand whats going on and I don't think of it as ranting at all. After the first 20 times I fell asleep on my friends I told them that its not something funny and they apologized and never said anything again. I do think i have a very minor form of catalepsy because every time I have any sort of emotion I drift into sleep shortly after. At the moment my frustration builds. I've been waiting a year now for help and after an all day sleep study on June 8th I JUST got results - only from the night study nothing from the day. I fell asleep 3 out of 5 designated naps but they still won't directly tell me if it really is narcolepsy or not. I'm heading to LA tomorrow to see a neurologist and hoping something can be done. - . - Anyways I'm glad to see that its not impossible to do well with narcolepsy and do well in life. This year is my junior year and its going to be a big challenge. 3 ap classes and 2 honors. Wish me luck :)
@Roxy Thank you so much for the motivation. I've tried mixed vitamin pills but I will try to stick to your regimen instead and hopefully things will work out for me as well. I really appreciate your help and support/
When I met some of the friends my friends had met while at college the first thing they said to me was "oh your the narcoleptic one! so do you like fall asleep while walking!?" They didn't understand that that's not exactly how it works. I've also been told by people that they wish narcolepsy was contagious because they can never get to sleep at night. It's ridiculous.
I hope you get everything figured out soon! Luckily my case was easy to diagnose. I fell asleep during all of my naps, and a couple times I fell asleep before the doctor even got back to the control room! Once you get on some medication everything will get better!
Good luck with school too! Just make sure you keep focused on what you want to achieve and never tell yourself that you can't be as successful as everyone else.
I am 15, a sophomore in high school, and narcoleptic without cataplexy since I was 12. Actually I had cataplexy a few times, but very rarely. I had to get a bunch of test done, EEG, MSLT, some other names I don't care about.
I passed the EEG (so I'm not epileptic), but totally failed the MSLT. MSLT will most likely be the one that will diagnose you to be narcoleptic, but is usually the last one doctors suggest. They turn the lights off in the day after a whole night of sleep, and make you close your eyes. They do it 4 times. If you fall in a REM (dreaming) sleep in under 15 minutes, ur narcoleptic. Normal people should take at least an hour. I fell asleep in an average of 2 minutes, last one being 40 seconds. Totally scared the doctors to death. But that was like 4th test done, after getting no results from the other 3. By the way, they do put wires on your stomach, chest, and scalp. Just remember they stick them on with blue GLUE, looks like snot and acts like heavy-duty Elmer's Glue.
My mom constantly gets on to me about my narcolepsy. She thinks I that since I didn't tell her that I was narcoleptic earlier, it's gotten worse and into something that is unreversable. I don't get what her problem is, I can't control it. She doesn't get it, or why her advice are like the worst ever. "Lay your head back on the seat to avoid sleep to help prevent sleep attacks..." Many things wrong with that sentence.
Anyway, I fall asleep in class many times, usually when the lights are off or when someone reads/talks for endless periods of time. I scare people when I keep nodding my head back and forth, and sometimes I **** forcefully into a sleep. Others think it's funny. My teachers do not know I'm narcoleptic; I've been iffy about telling them. I think they'll either not wake me up when I fall asleep, be placed in a special class, or they'll tell other teachers about it and it will spread like a rumor. I keep silent, but I'm not sure if that's helping or hurting me. When I go home, I take naps, but they usually knock me into paralysis. I can't move, and ever since I took Xyrem, I started to hallucinate while in paralysis. I can see, hear, and feel it. I had to learn to stop trying to throw myself off the bed, it scares my family too much. Now I just close my eyes.
About you, I'm guessing your not on any stimulants. I honestly can't maintain wakefulness without them. My "awake" time decreases, sleep doesn't help me much. Get your priorities straight; do what's important first, other stuff later. That way, u can make the most of your day. If you have a friend who knows of your condition, you can ask them to try to wake you up in some of your classes or for whatever assignment you might not have heard. Also, do some type of extracurricular or hobby or something. I felt so out of touch with other people when I was without medication. All I could remember of my life was sleep, sleep, getting yelled at. But I play an instrument, so it helps take my mind of things.
I am a mother of an 11 year old boy who was diagnosed with Narcolepsy/Cataplexy in December 2011. His symptoms started in July 2011 so our diagnosis was pretty quick compared to many patients. It was devastating to say the least. The key was having a great Neurologist and going to a reputable sleep lab. You have to have the night/day sleep study to get an accurate diagnosis. My son currently takes 25 MG of Adderall XR (extended release) every morning which stimulates his brain and helps with the Cataplexy as well. He can also take an additional 5 MG if needed. I know it's early in the diagnosis, but it's amazing how his grades improved and he can actually stay awake!! There are side effects but I'm not sure if they are from the medication or Narcolepsy so I worry about it along with how the Narcolepsy/Cataplexy will affect him in the future. I've read some very positive stories on this site and some depressing stories as well. I wish everyone who has this terrible disease the best of luck and hope that you have the support and love of friends and family. I do advise that parents become advocates for their children and talk to your doctor/school about an IEP or 504 that will provide the needed accomodations for your child in school or college. God bless!
Hi Abraham, I know narcolepsy is different for everyone who is diagnosed but I can relate to you because I was diagnosed within the past year and I am 17. I have a hard time in school especially if I forget to take my medicine, I know how frustrated you are because nobody really understands how you actually feel. I try to explain to my family and friends how tired I am but everyone thinks I am exaggerating. I actually had to take my MSLT last year during finals to be officially diagnosed. It also took me a very long time to convince my parents something was wrong with how much I was sleeping. They thought I was staying up all night and just tired during the day, but I finally convinced them to do a normal sleep study and then after that I saw a sleep specialist (who is awesome) and he ordered the all day sleep study you'll be taking. I tell my teachers if it comes up, but they don't believe I actually have narcolepsy because I don't fall asleep during my sleep attacks, I just become extremely fatigued and unable to do anything but lay my head down and wait for it to pass. Once you are diagnosed and start medication life will be so much easier. My sleep doctor says that a narcoleptic never feels "good", they just feel "better". Even though I have suffered from this I have been able to complete almost a year of college during my senior year, and I feel a lot more functional than before. I hoped this helped. Like I said everyone suffers from narcolepsy in different ways.
@CourtneyJade Send me a message at [email protected]. I need to talk to you about your narcolepsy. It’s important.
I am a little older than those from whom I've been reading, but my N began at 19 as the sensation of electrical currents running from my head and down my spine and back up. It would come at the onset of sleep and also cause my back to arch. My diag. came after I started having hynagogic hallucinations and went to the doctor finally. I had the MSLT and was REMming in a record breaking 7 seconds! I take 60 mg. of rapid release Adderall twice a day. I also have taken up to 30 mg. dexedrine slow release in between the adderall doses but the doc wanted me to get away from that, to my detriment IMO. I have been twice to RN school and both times I had so much trouble staying awake to read/study/drive that the staff assumed I was on downers and canned me both times. My advice to you guys in school is to use a tape recorder and somehow get your books on CD if you can. Maybe an understanding instructor would supply you with their own notes for the semester. Just don't let it get the best of you. Keep taking your meds and if you don't like one, tell the doc you want to try another. For me personally, I trust good old amphetamines which is what Adderall is, much more than the new-fangled drugs. I've been on my same dose for like 14=15 years and I'm okay. Lately I need more but it took a long long time to get tolerant. I have no ill effects. Blood pressure, mood, appetite are all freaking fantastic. Keep your chin up! (old narcolepsy joke!, hahhahaha)
Hello Abraham,
I am currently 20 a guy and in college. I was diagnosed 3 years ago with Narcolepsy. I am taking Nuvigil and it helps a ton with my symptoms, but make sure you get with a Neurologist who specializes in Narcolepsy to help you out. You're gonna need it. Narcolepsy is difficult to deal with and I did the same thing as you when I was in high school with all AP and honors courses. I even did the prestigious IB program which was harder than APs I can promise you. I ended up getting that and graduating with a 3.8 thanks to really great grades sophomore year. Props to you for coming to this site as well as pushing yourself. It is so very important that you continue to perservere and stay determined with this disorder. I posted this on another person's post further up so I *** it will help. She asked a lot of questions and I responded in order. If you have any questions yourself feel free to post or message any of us. I osted these on CorrenaGs post. So refer to hers if you don't know what I am referencing when I respond.
1.) I took Provigil initially. Had some success but was often moody or very irritable. It so adversely affected my mood I switched to Nuvigil and I am on 250mg of that and it works great. It is a different form of Provigil and has the same basic chemical structure with some alterations. I tried to figure out how it actually affects the brain, but even the medication's info sheet from the pharmacy admits that they don't know how it affects the brain. It works for me though.
2.) Caffeine has adverse effects on my wakefulness. Coffee makes me tired and 5 hour energy does the same thing. I have found that an energy drink like monster does help sustain me for another hour or so if I take time drinking it but that is the only thing that even remotely works on me. Exercise is extremely important for PWN (people with Narcolepsy). It is good for you and can help with wakefulness, but even that depends on the day and timing of it alongside my meds. I am trying to get more active, but motivation is awful (part of being tired all the time with Narcolepsy.) I have found that I can go all day with meds and then sleep fine at night. On days I elect not to take anything I would have a nap depending on the activity level. if it is a lazy day with nothing much to do, I normally don't bother although my productivity and focus suffers.
3.) Narcolepsy does not necessarily directly affect your weight. However, things like motivation, possibly metabolism, and overall awakeness can cause you to gain weight which is just a part of having N. Basically, N encourages weight gain via the consequences of having it. Also, if people take antidepressants to counter feeling down and out, then they can gain weight with those as well.
4.) This question is one that many persons with Narcolepsy ask themselves everyday. I do at least.For me, since it showed up in junior year of my high school career, it was strange to feel so tired even though I got "enough" hours of sleep for a normal person. Let's put it like this. For every 8 hours someone with Narcolepsy sleep, that is the equivalent to someone "normal" sleeping 3 hours. You are just constantly sleep deprivdd and the only thing you can do to help is sleep, but that won't solve it either. Our disease is the epitome of a paradox in that way. Normal people cannot understand the depth of your exhaustion and never will unless they decide to live their lives sleeping a whole 3 hours a day or so. Another thing I have heard is that if someone stayed up for 2-3 days, then they would known *** people with Narcolepsy feel EVERYDAY. Just be patient with yourself and do your best and you will get along. I just keep being exhausted to myself in pleasent conversation with people I am not good friends with because they will not and cannot understand the depth of your exhaustion.
5. I actually feel the way you do sometimes. I thank my Mom that she has instilled in me the end to push myself to keep going even if the temptation to sleep and do nothing is there. What you are experiencing is not cataplexy. You would actually automatically nod off if you did and either collapse or slump over. Many with Narcolepsy also have things called "micro sleeps" where you may close your eyes and take a small nap without knowing it. It is a fast experience, but not cataplexy. I believe the feelings you are experiencing come from the fact you are exhausted and who wouldn't be a little delirious in that state? Heck, some days back in high school I had the thought of just lying doen on the floor at the base of the lockers and taking a nap, but I knew I couldn't do that. Social pressure kept me from doing that and other things like it. I also would day your feelings are probably normal for someone with Narcolepsy. For me it depends on the day, but everyone is different.
8.) I have no idea why your doctor is saying it shouldn't be difficult for you to wake up. One of the symptoms of Narcolepsy is a type of waking paralysis. This is due to you coming out of a dream state while you sleep called REM. most people's bodiee automatically paralyzes them while they are dreaming otherwise you would be actually acting out your dream. I have found that when I wake up I normally remember my dream which is an indicator you just came out of REM sleep. And even though you wake up, your body may still be paralyzed thanks to your brain thinking you are still in a dream. Again, part of Narcolepsy and mom experiences it much more than I, but I experience it too. I may wake up and then immediately dip back into dreaming in the morning. Will alone cannot always get me out of bed because this type of paralysus keeps you from getting up. You need to see a Neurologist that specializes in Narcolepsy. If he did not know that symptom then there is real reason for concern even the DSM (Diagnostic statistics Manual) for disorders has it listed. Check for yourself and find a reputable site so you can also see for yourself.
7.) Naps normally help me. My body normally will just wake me up automatically after 1 to 2 hours. I personally cannot take a 15-30 nap, I know I won't get up after such a short time even if I set an alarm. My mind can't overcome the urge to stay asleep after such a short time. Find out the right amount of time for you.
8.) I actually have experienced this a few times in my life, but it is extremely rare. If i do stay awake, I normally do so when my mind is thinking a lot about something or if I am sleeping in a very unfamiliar place (don't ask.) Everyone has a different biorhythm that kinda controls when someone is tired or not. For example, I normally have a dip midday no matter what I do because of my natural biorhythm. Just go to sleep when you are tired and calm your thoughts by emptying your mind. I have learned meditation techniques from my Dad so I use those to stop me from continously thinking and pondering. Relax yourself and you will sleep fine. I am very relaxed and can safely say that I have never been anxious in my life, so that may be while I sleep fine too. Just try not to worry and that should help a bit.
I know this is super long, but I hope it helped. Narcolepsy is an ongoing thing and you will have to constantly learn how to adapt and adjust your lifestyle to optimize your wakefulness and day. My mom is still learning and she has had it for the last 30 some years. I wish you the best and hope this helped.
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