I have a lot of issues waking up in the morning and I need some advice. Do you guys struggle? How do you get through it? I am 18 and I am leaving for college soon. I really don't want to have my narcolepsy prevent me from being successful.
HI dream catcher…to be completely honest…it’s not going to be easy BUT don’t give up!..how does your medication work for you during the day? Does it keep you up? Are you are to go to sleep at a decent hour at night? That is my number one issue…waking up when I want to/at alams. If you are rooming with someone I would suggest talking to them about it. Also crazy alarms, support, help from others, and your best attempt at regular sleep can help. I am very new at all of this butt this is what I find helpful so far. Many times I wish that there was a “cure all” pill I could take and be normal…but the fact is we just have to prepare, prepare those around us so that they understand, and be positive. Positivity has gotten me through alot. I lost alot in my life because of narcolepsy. But I’m gaining it back because I am having a better outlook. Also maybe later classes. Only you know what’s going to work for you so strive for that and success will come easier. Wishing you the best!
Hello,
Great advice above.
One very good thing is that you found out now that you have narcolepsy and can start to learn how to deal with it early in life. I know that doesn’t “sound like a good thing”. But I struggled all my life from childhood to age 58 not knowing what my problem was. When I was finally diagnosed it was on top of many other medical issues.
There is a good side we just have to keep searching for it.
Blessings on you journey,
Ranger
As I got older I realized that staying in bed longer in the morning did not make me feel better so I started every morning with a ten to 15 walk.In college I went to the gym before classes or rode my bike to classes every morning. I think getting into that morning routine helped me cope a lot better with the physical challenges. I was able to complete undergrad, grad school and law school. I believe I did this because I just adjusted my schedule and routine to fit my periods of fatigue and sleepiness. I also used 5 to 10 minutes of meditation while in bed to help energize me while I was in bed. When I started working I also had someone call me in the morning so I would get out of bed. I found all this really helped until I was diagnosed and started taking Provigil. Good luck
Before narcolepsy medication and even now after I am on meds for it I set a series of alarms at 15 minute intervals each one increasingly louder than the previous on. Or if you have a roommate that is sympathetic and has same "wake up" time ask if they wouldn't mind just making sure you wake up if you don't wake up on your own.
yep...I also have great difficulty waking up in the AM. It might help you to know that you are not alone.From other internet support groups I would say that this is a common problem.One person posted that she wakes up one hour before she gets up, takes her stim and then goes back to sleep until she has to get up because the med does not kick in for about an hr. I have not tried that strategy myself. This is a one size does not fit all problem so keep asking. Best of luck.
These tips from personal experience are great. Also the point about being diagnosed when you are younger. 1) you may be in good physical condition and in a position to establish morning routines as mentioned that will gradually make you stronger, too 2) in college some think being sleep deprived is okay but it will only make it harder for you to feel alert when you need to be. Having good sleep hygiene from the beginning of college will help you gauge what works for you going forward. 3) you're getting to know yourself anyway, so remember what is normal for you is going to be different and you can own it and feel more confident in yourself 4) respecting routines that reduce symptoms is the best way to protect your investment in college 4) eating healthy food that doesn't make you tired is fashionable. I'm excited for you!
I struggle everyday to get up. I’m on FMLA because no matter when I ended up getting out of bed, I would always be late to work mostly by 5 to 10 minutes. I’m always hitting the snooze button and even when my boyfriend calls me in the morning to make sure I’m awake, I end up rolling over and sleeping a little longer. I’m finally getting to work on time. I’ve been setting my alarm earlier and still hit snooze but I do end up getting,out of bed with enough time to get myself ready.
I also deal with having a hard time getting up in the morning. Some days I can’t move for about ten minutes. Sometimes it help’s to tell myself that I don’t have the option to stay in bed to get up. Also on the day’s I go back to sleep. I just stomp my foot and say one step at a time.
my son Sam is being discharged now from the military because of narcolepsy his dreams have been shattered by this narcolepsy . He wants to enter nursing school now and I pray that he can . Together we will all find our way through this . narcolepsy is hard most of my life ive not know what was wrong with me . When my son was diagnosed by the military i went to my doctor and ask him to help me understand . He said to me" Narcolepsy can be treated but not cured So there is hope It is not a death sentence" there are drugs out there that can help and there are support groups . my son says that right now he has chosen to watch the butterfly's he says that the morning he was told his dream was over he saw a butter fly fly by and from then own there has been butterfly's . Sam says this is a sign of hope for him he knows God has a plan for him . Soon I to will finally know if i too have this disorder . ive been fired from a job before because i couldnt stay awake in my present job I walk all day to stay awake . You are not alone in this
Wow. Your son sounds like at this moment he understands he has narcolepsy. But it does not have him 
it’s all so awesome that he is watching the butterfly’s I do the same thing. They are a reminder that even when you feel small and like people don’t understand the war with in. You are free to fly and delicate but very strong.
I liked what Katie had to say. One of the things my doctor recommended is just trying to adjust my schedule as much as possible to accomodate what my body was doing. So I, too, have a few alarms and hit sleep. But I try to not schedule meetings between 10 and 2, because I pretty much know that I am going to have to go sleep somewhere during that time frame. Maybe you can aim for late afternoon/evening classes, which would allow you to sleep during the morning. Or, if you really had to, you could start getting up a few HOURS earlier (I am groaning in my head just thinking about it) so that you know for sure you're up in time for class. Just an idea. Best of luck to you!
Thank you so much everyone for replying to this. Everything is extremely helpful. I have tried getting up and hour before I actually need to and take my meds and that sorta worked but not really. It almost feels like the disorder is really smart sometimes. Like within a few days of a new routine, my brain finds a way to keep me asleep. In the morning I suffer from the paralysis where my brain will wake up, but I can't move. Or I will not just hit snooze, but shut off my alarm completely while I am still in a sleep state. I don't remember it. BUT the good news in all of this is I am starting to improve. We upped my meds and that is helping, and we also got me a special alarm clock called the sonic bomb. It has been working pretty well so far! I appreciate having the support, it really helps me feel not so alone in this battle :)
I just wanted to tell you I think my suggestion of getting up a few hours earlier was idiotic. :) LOL. I'm sorry I said that. For the last week or so I have been getting up literally 15 minutes before I leave for work. Thank heavens for wrinkle-free fabrics and messy buns. I don't have any suggestions, but I wanted to say that was a dumb thing for me to have said. I meant it as helpful, I swear! :)
I think you are entitled to a few things. Narcolepsy is classified as a disability especially in a school setting. Tell your teachers so they aren’t insulted if you fall asleep during a lecture. If I remember correctly you can attend multiple lectures for the same if the class is offered at different times during a semester. I would also buy a coffee maker with a timer. Setting your alarm clock across the room so you physically have to get up helps. Even though you will want to , drinking alcohol will kick your butt. Best to be the designated driver
I have a horrible time waking up on my own, since my husband left it has only gotten worse. When my step daughters are staying with me, they wake me up and my son who is 4 has done so as well. although he is a great sleeper and I think he could sleep longer if I did not wake him, so most of the time, it is on me to wake up. I have found that if I wake up and then go back to sleep for 10-15 mins it is like a power nap and I feel like it is easier to wake up the second time. I have tried all alarms possible and the only thing that somewhat consistently wakes me up is the phone, I think maybe because it is not specifically the exact same time each morning. I found an app called "Wakey" that is set up for others to through the app call you for a wake up call. it is kinda neat cause many times they are from another country and asking them where they are from etc wakes me up enough to stay up. So far that is the only thing that helps most days. I just change the times I have them call me. and they have a snooze feature that calls 10-15 mins later too.
Also, be sure you discuss your N with the school to have ADA accommodations in place for your classes. They can be sure your classes are not early am, possibly give you more time for tests or papers, and other things that can help you be successful in school.
In high school I had an IEP due to my narcolepsy so it is being transfered over! My earliest class is at 9. Im starting to get worried about that though because the other day I slept through all my alarms until 130 in the afternoon. But I dont know. It just feels like whatever I do, my disorder almost always finds away around it
Froggzzz said:
Also, be sure you discuss your N with the school to have ADA accommodations in place for your classes. They can be sure your classes are not early am, possibly give you more time for tests or papers, and other things that can help you be successful in school.
Its not idiotic at all. I try for that but sometimes end up sleeping in. So no worries at all! And I 100% agree that wrinkle free fabrics and messy buns are the real MVP :)
The HR Girl said:
I just wanted to tell you I think my suggestion of getting up a few hours earlier was idiotic. :) LOL. I'm sorry I said that. For the last week or so I have been getting up literally 15 minutes before I leave for work. Thank heavens for wrinkle-free fabrics and messy buns. I don't have any suggestions, but I wanted to say that was a dumb thing for me to have said. I meant it as helpful, I swear! :)