5 replies to this topic

[ejohnson22]

Hey everyone!I am writing because I am at a dead in as to how to be a "normal" college student while living and dealing w/ narcolepsy. I am a junior in college and was diagnosed with N last year during the end of my sophmore year. After I was diagnosed and put on medication I didn't change my normal habits, I just continued doing what I always had done and went out on weekends and had some drinks. When I was put on Xyrem in August, everything kind of switched in my life. I knew the power of Xyrem and didn't even want to risk the chance of drinking even a little bit earlier on in the night and then take my meds hours later, so I decided I wouldn't drink any more. Not being able to drink hasn't been the hard part for me. The part that I am struggling with is now when I go out I get EXTREMELY tired about 8pm. Now, most college students that I know don't usually go to sleep this early, but for me, when it's not a weekend I am in bed between 9:30-10:30, because I just get so exhausted. I also take Mirapex at night, which I know causes some drowsiness. I take 1 gram at 6pm and 1 gram at 8pm to help with my RLS.
My friends are so understanding of the situation and are very supportive, but it is hard for me to have to leave them so early and not enjoy the rest of my night with them because I will fall asleep. Many nights I don't even go our with them, because I get embarrassed all the time telling them that I have to go to sleep. So I end up sitting in my room alone, working on homework or watching TV. Does anyone have any suggesstions that maybe have worked for them, where they are able to stay up a little bit later and be able to hang out with friends!? I know the situation is different for everyone, but any suggestions that you are willing to give me would really help!!

[hathor]

hi. i have always gone out and had a good time with my friends. i have just got on with life and didnt even know that most of my behaviour wasnt "normal" until i started coming to this site.but that is a good thing,i have learnt alot from coming here. i love to go out to the city on a saturday night with my friends. if i know i am going i always make sure to have a sleep before i go if i can. my friends are well aware of my condition and it is kind of and unwritten rule when we go that no matter how many of us go, no-one gets left behind at the end of the nite,we always look out for each other. my sleepy time while i am out is about eleven oclock. when my best pal notices we normally sit in our usual corner in the nite club then she knows where i am so i can snap myself out of it. so if ur friends are understanding of what is wrong with u then they should look out for u in just little ways like this. if we are staying home and having a drink my friends have never done any thing nasty to me while i sleep which is normally after a cat attack from laughing at them.they know that would just be nasty especially when they know what is wrong.
never let yr condition stop u from enjoying life and having fun, there is always ways to get around it.

[malachi777]

Hey everyone!I am writing because I am at a dead in as to how to be a "normal" college student while living and dealing w/ narcolepsy. I am a junior in college and was diagnosed with N last year during the end of my sophmore year. After I was diagnosed and put on medication I didn't change my normal habits, I just continued doing what I always had done and went out on weekends and had some drinks. When I was put on Xyrem in August, everything kind of switched in my life. I knew the power of Xyrem and didn't even want to risk the chance of drinking even a little bit earlier on in the night and then take my meds hours later, so I decided I wouldn't drink any more. Not being able to drink hasn't been the hard part for me. The part that I am struggling with is now when I go out I get EXTREMELY tired about 8pm. Now, most college students that I know don't usually go to sleep this early, but for me, when it's not a weekend I am in bed between 9:30-10:30, because I just get so exhausted. I also take Mirapex at night, which I know causes some drowsiness. I take 1 gram at 6pm and 1 gram at 8pm to help with my RLS.
My friends are so understanding of the situation and are very supportive, but it is hard for me to have to leave them so early and not enjoy the rest of my night with them because I will fall asleep. Many nights I don't even go our with them, because I get embarrassed all the time telling them that I have to go to sleep. So I end up sitting in my room alone, working on homework or watching TV. Does anyone have any suggesstions that maybe have worked for them, where they are able to stay up a little bit later and be able to hang out with friends!? I know the situation is different for everyone, but any suggestions that you are willing to give me would really help!!

If ever possible, a nap in the mid afternoon can help replenish your energy enough to go out. The issue is then getting out of bed in the morning. Consider yourself like a cell phone battery that has a low charge....you plug it in for a few minutes to get enough of a charge to last throughout the rest of the day. Unfortunately, we are like that too. I am so happy to see that you do not need to drink when going out. Please don't ever drink, particularly if you are using Xyrem. This drug is a nervous system depressant and mixing it with alcohol can kill you. Take care and good luck.

[GaryReimer]

Hey everyone!I am writing because I am at a dead in as to how to be a "normal" college student while living and dealing w/ narcolepsy. I am a junior in college and was diagnosed with N last year during the end of my sophmore year. After I was diagnosed and put on medication I didn't change my normal habits, I just continued doing what I always had done and went out on weekends and had some drinks. When I was put on Xyrem in August, everything kind of switched in my life. I knew the power of Xyrem and didn't even want to risk the chance of drinking even a little bit earlier on in the night and then take my meds hours later, so I decided I wouldn't drink any more. Not being able to drink hasn't been the hard part for me. The part that I am struggling with is now when I go out I get EXTREMELY tired about 8pm. Now, most college students that I know don't usually go to sleep this early, but for me, when it's not a weekend I am in bed between 9:30-10:30, because I just get so exhausted. I also take Mirapex at night, which I know causes some drowsiness. I take 1 gram at 6pm and 1 gram at 8pm to help with my RLS.
My friends are so understanding of the situation and are very supportive, but it is hard for me to have to leave them so early and not enjoy the rest of my night with them because I will fall asleep. Many nights I don't even go our with them, because I get embarrassed all the time telling them that I have to go to sleep. So I end up sitting in my room alone, working on homework or watching TV. Does anyone have any suggesstions that maybe have worked for them, where they are able to stay up a little bit later and be able to hang out with friends!? I know the situation is different for everyone, but any suggestions that you are willing to give me would really help!!

Me... I agree with resting in the afternoon, but heck, if your friends are understanding as you say, tag along and close your eyes and just listen to the conversation going on around you rather then trying to stay with the flow of it with body language, they'll adjust when in the middle of the conversation you just kind of pop back in. Its better then being a total social phobic.

I am getting use to the idea that sometimes I will just have to go certain places, have my mind just go completely blank, and I will have to stop talking. Tell them "my mind blanked, give me a few moments" close your eyes... let people walk away, and then gather your thoughts and then continue. They'll come back over and continue the conversation. If they have a problem with it, to bad.

When I start talking to someone totally new, I get a random selection of: slurred speech, I get quiet, if I am calm and enjoying my self, I'll feel my self start to fall asleep or can't laugh at a joke sometimes. Then I just rattle off something along the lines of "thats it, more coffee"! And other times, I can't move my arm to shake someone's hand. Stupid simple stuff.

One other thing, if you find that its still more comfortable physically to stay in, find people to talk to online as a regular interaction (accountability partner is an idea) simply to keep you social since the less social you are, the worse the fatigue gets as I have found.

Best wishes, I'll be heading back to College in the fall.

[vidar]

I was diagnosed tentatively freshman year of college based on MHC type and symptoms; I was placed on provigil. A sleep study (PSG w/ MSLT) showed idopathic hypersomnia that summer, so I was switched to Xyrem until my campus doc switched me to Ritalin a due to severe panic attacks while on Xyrem (let's just call it a bad trip...). Long story short I've been on pretty much everything.

Each drug works better due during specific situation is. Most neuros won't write scripts for Ritalin, Adderall, and Nuvigil so people end up picking there poison and going with it. My clinical mentor is in Pain management and it's not uncommon for them to have people on a long acting opiate (fentanyl patch or morphine sulfate), and one or two short acting opiates (normally oxycodon and or ultram) plus a NSAID. NB after one spine surgery I can say opiates are way more fun (read addictive) than anything you will be put on for Narcolepsy.

Having said that, Xyrem is approved for usage with Provigil. There are very valid theoretical issues with Xyrem usage and a conventional stimulant that could would make me unwilling to use both Xyrem and something like mixed amphetamine salts (MAS) and it as relates to rebound respiratory depression. Its beyond the scope here, but provigil won't cause that and could benifit you in the evening.

Having said ALL that it provigil doesnt do the trick for you I'd seriously consider switching to something like MAS. I'm on up to 30mg MAS now and I'm in med school and it works fairly well, plus you can learn more quicker if you dose push so thats a bonus. College should be the best time of your life. I was on Amphetamines (MAS) in the AM and noon and ritalin in the PM while in College (Go U Mich physicans! Best internal medical doctors in the world! Seriously!) I'm really glad I was on that as I had a social life and obviously did very good as I'm in med school now.

[Mee]

I was diagnosed in my freshman year and had an active social life. There are responsible ways to have fun and working with your medication. If there was an outing that I really wanted to attend or have the energy to stay up with my friends, then I would plan for an early nap. I would come straight home after class/work and sleep up to 10pm and be fashionably late. Or if its a birthday dinner and there's time for a nap, then I would try to get up later that day and take my extra ritalin a little later in the afternoon and not drink (at least not until the very end of the night before calling it in). And lastly, I hosted the majority of the parties, poker night, etc. I had good friends that I would let me roll into bed and they would lock-up whenever they left. The extra bonus is that my friends would often leave me with something yummy to eat the next day (they always liked to cook up some midnight snacks). I also recommend going to clubs vs. bars. You have less of a chance to fall asleep while dancing then standing at the bar.

I highly don't recommend rolling the dice and trying to figure what medication works with alcohol and parties. However, if you choose to drink responsibly (aka had your last pill many hours earlier), then I would advise trying different beverages. I find that wine and and sugary drinks will automatically make my eyes droop. However, vodka and straight whiskey don't have too much of a sedative effect on me. So try different things (responsibly) and see what works for you.

Good luck and please party responsibly.
-M

P.S. I attended the UofM in Minneapolis. ejohnson - do you attend college nearby?