Jump to content


Photo

Nothing Has Ever Worked To Keep Me Awake!! What Should I Do?


  • Please log in to reply
3 replies to this topic

#1 moonlight2melody

moonlight2melody

    Member

  • Members
  • 3 posts
  • Gender:Female
  • Location:michigan
  • Interests:ART, READING, MANGAS, ANIME, BAKING AND COOKING, CAKE DECORATING, FANTASY STUFF, LUV MUSIC, JESUS, HOLIDAYS, FRIENDS, FINDING NEW FRIENDS!!

Posted 27 December 2009 - 08:48 PM

I have had narcolepsy since i was in 2nd grade. Along time. Nothing has ever worked completely to keep me awake. But then again maybe I just havent tried hard enough or consistant enough. Its not easy though going through school and stuff while trying to manage having. I have never been able to drive and this is causing my life to suck so bad. I have to rely on people for everything and I hate it.

I havent tried medications for a long time because I found out i have diabetes and am trying to control that now. Also because the narologist I had knew nothing about people with narcolepsy. So how should i go about finding a good one that can actually help me? I really just want a medication that i will someday get an okay to drive on.

So my question is what should i do now?


#2 Kathleen

Kathleen

    Member

  • Root Admin
  • 103 posts
  • Gender:Female
  • Location:East Coast

Posted 29 December 2009 - 12:47 AM

Hi I wanted to reply to let you know that you are not alone. I am not sure what you have been doing up to this point, but you sound more than frustrated! (Rightly so! N can be a pain in the you know what)

....I would look for a doctor that specializes in Sleep medicine, NN may even have a doc that is a member in your area, you could call the main office. 888-292-6522 Tell Joyce Kathleen sent you. :) Alternately you can email narnet at narcolepsynetwork dot org

Meanwhile, do you take scheduled naps? I know that the nap can save me like nothing else, that is just what my body needs. Yes it's a pain to say OK well it's 2PM time for my nap - it does put a crimp in the day. But it is much better for me than 3:00 rolling around and I am a mess! I get really cranky, plus fall asleep without warning is pretty lousy.
Also you mentioned diabetes, that does complicate your eating - but actually it may be helpful, since in my experience carbs can cause extra sleepiness. When I did diabetes nutrition training, they always said have a protein with the carb. Try it...see how you feel. What do you have to lose! :) Good luck with the diabetes, moving your body is hard with N, but do your best. Don't give up! You are young, and You can do whatever you set your mind to doing!!!

I take meds, and my N is pretty well controlled, but I DO NOT drive more than 20 minutes at time. That is my limit & I have to accept it. But I do hear your frustration-I know you want to drive, just be careful, k? keep posting

#3 moonlight2melody

moonlight2melody

    Member

  • Members
  • 3 posts
  • Gender:Female
  • Location:michigan
  • Interests:ART, READING, MANGAS, ANIME, BAKING AND COOKING, CAKE DECORATING, FANTASY STUFF, LUV MUSIC, JESUS, HOLIDAYS, FRIENDS, FINDING NEW FRIENDS!!

Posted 08 January 2010 - 11:23 AM

Hi I wanted to reply to let you know that you are not alone. I am not sure what you have been doing up to this point, but you sound more than frustrated! (Rightly so! N can be a pain in the you know what)

....I would look for a doctor that specializes in Sleep medicine, NN may even have a doc that is a member in your area, you could call the main office. 888-292-6522 Tell Joyce Kathleen sent you. :) Alternately you can email narnet at narcolepsynetwork dot org

Meanwhile, do you take scheduled naps? I know that the nap can save me like nothing else, that is just what my body needs. Yes it's a pain to say OK well it's 2PM time for my nap - it does put a crimp in the day. But it is much better for me than 3:00 rolling around and I am a mess! I get really cranky, plus fall asleep without warning is pretty lousy.
Also you mentioned diabetes, that does complicate your eating - but actually it may be helpful, since in my experience carbs can cause extra sleepiness. When I did diabetes nutrition training, they always said have a protein with the carb. Try it...see how you feel. What do you have to lose! :) Good luck with the diabetes, moving your body is hard with N, but do your best. Don't give up! You are young, and You can do whatever you set your mind to doing!!!

I take meds, and my N is pretty well controlled, but I DO NOT drive more than 20 minutes at time. That is my limit & I have to accept it. But I do hear your frustration-I know you want to drive, just be careful, k? keep posting

Thanks for the info. Yeah i dont really take scheduled naps, i dunno why i dont. I dont get any sleep at night either, i just have weird, frustrating sleep like thoughts/dreams all night long >.< Ne ways i will try it and see if it helps.

Ill try lookin for a specialist that way and get back to you thanks!

#4 Andromeda1528

Andromeda1528

    Member

  • Members
  • 26 posts

Posted 10 January 2010 - 11:35 PM

I would suggest that you look for a sleep doctor at a sleep center, as opposed to a neurologist. and make sure to check the doctor's expertise - you want someone who has experience treating narcolepsy and not a pulmonologist, who would specialize in sleep apnea and other breathing disorders involving sleep. take a look at this site - http://www.talkabout...directories.htm to find a doc who is accredited by the american academy of sleep medicine. personally, i usually look at university hospitals when i have looked for a doc, as i think they are more likely to keep up with the latest research, especially if they do some themselves.
i don't know much at all about diabetes, but i think you should be able to try medicines for narcolepsy even with diabetes - if you're not sure you could ask whatever doctor you see for diabetes if there are any narcolepsy meds you should be avoiding.
scheduled naps might help you a lot - they are indispensible for me. you can read about what i do on my blog, here is the post: http://www.nisfornar...duled-naps.html
also, you should really try to set up a regular sleep schedule. i sleep terribly at night, but i still sleep my eight hours. i'm a mess if i don't.
there is help out there! i would encourage you to see a sleep doctor, and try and find something that works for you. with medication and naps, you might very well be able to drive eventually (another reason to get treated) - i drive, but i certainly wouldn't be able to do so without medicine and scheduled naps.
good luck! don't give up because you haven't found anything that works for you yet -- there are many meds out there, it just takes some trial and error and time to figure out which one will help you...
best to you,
Andromeda
nisfornarcolepsy.com (my narcolepsy blog)