My experiences with narcolepsy
The title says it all. The only way to confirm a diagnosis of narcolepsy is a sleep study.
Tags: sleep study, Diagnosis, Narcolepsy, Experiences
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I’ve always heard the popular misconceptions about narcolepsy… so I started to wonder what it really was. This video has been very enlightening… and that’s so much to deal with, too… I hope you are doing better, these days, at least…!
It’s definitely a tough diagnosis to get since you have trouble on two fronts. First you have to deal with the direct consequences of the disease… then you have to deal with the overwhelming public misconceptions about it. The number of people I have met that seem to think it’s a psychological condition or something that can be willed away is mind boggling.
I wish you and your daughter the best of luck.
@sofiarune I know how lonely it can make you feel. just know there are others just like you out there. you’re definitely in my prayers. I suffer with narcolepsy. All symptoms included. Xyrem helped with them all but I still get very drowsy during the day off and on and need to nap. My daughter just found out today she also has it, and she was devastated. She knows all I went through and she’s scared. I’m trying my best to encourage her here. It’s so hard. I lost so much from this stuff!
Following on from first post…..I even have had girlfriends that havent even know i had it cos i deal with it really well. i do still feel tired sum days in the day. i work from 8-4 mon-fri and usually get home, hav a 30min nap, then go out and socialise. My closest friends know and my gf, but lots of friends wouldn’t even hav a clue that i had such a thing. I dont hav cataplexy anymore which is meant 2 b strange as its life long but i think it was my pesonality which got me thru it. thanks
Hi. Im 24 and was diagnosed when i was 16. I started to feel tired at the age of 15 in my last year at school (uk). It was hard to live with at first because i was quite a popular pupil and had lots of friends and a change in my life that people were seeing in me was very tough to live with. I also had cataplexy, not sure if u have it, but it was v embarissing! It took a few years to get thru it but now i work 5 days a week and have a good social life. only my close friends know i hav it.
Thanks for the comment! I’ve been meaning to do a narcolepsy update. I’m no longer on the evil modafinil since I was up to 500mg a day and had nasty side effects and was still really tired. I’m on dexedrine now which, from what I can tell, is extremely similar to vyvance. I notice a huge change too. It helps a lot. Maybe I’ll actually be able to finish my degree now! :)
I was recently diagnosed with narcolepsy 2 months ago. I always thought i was just really lazy. After only being awake for like 3 hrs durring the day i was already so tired i couldnt stay awake. There IS hope and you can live a normal life with medicine! I am taking a medicine called Vyvance and it has change my life! Im awake all day, can get my housework done and take care of my 4 children without worring im going to fall asleep! I finally feel like a normal human being! Best wishes to you!
Thanks for the encouraging words. It’s hard not to feel dumb when you’re sleep deprived all the time but I’m slowly getting over it.
Don’t think of your self as being stupid as you said, you can’t help feeling sleepy.
You have a disorder, research is being done to better understand it, hopefully better treatments are just around the corner.
I always fall asleep when I go to bed after like 5 minutes, it’s pretty awesome.
There are many possible causes for being sleepy during the day, one is having a bad mattress, another is not enough rem sleep.
Are there things that wake you, or are you a light sleeper, are you normally anxious about things or just some thing.
There are more reasons for being sleepy, the key is to rule each one out, find out whats causing it, and deal with it
Yeah that’s definitely normal. One night it was all grasshoppers for me. I actually have been meaning to do a new video. I’m on a new treatment because the modafinil doesn’t work at all. I’m taking dexedrine now. Glad the video helped though. It’s a touch diagnosis to come to terms with.
I’m an Australian, I was diagnosed in 1998. This is the first time I’ve tried communicating with other narcoleptics, I’ve been in denial for a very long time. I see spiders all over my room every few months! It’s amazing how good it feels to realise that in the world of narcoleptics I’m normal….
Don’t be scared but DO get it checked out. While not curable it is treatable. It’s much more comforting knowing what’s going and start taking steps to correct it than to be completely in the dark.
im taking this psych class and we’re learning about narcolepsy. im freaking out because ever since I can remember i’ve been having issues with day time sleepiness. i’ve noticed with in the past year or two Ive been experiencing excessive day time sleepiness.. im always tired… im scared because ive experienced all the symptoms you’ve mentioned =(
Nice video, inspires me to make one. I really liked how you describe the hyp hallucinations as waking up in the middle of REM. I’ve been so freaked out that I had to call someone at 5am to make sure what was reality and what was the dream. I was shaking over that one.
Hi sofiarune. Im a chinese guy ,I have the situation just JennyBurke33 described,iwith excessive daytime sleeping and sometimes pretty tired. Im a English learning so I can’t fully understand what you say ,could u type what u are talk for me ?
thank you
Hi sofiarune. Im a chinese guy ,I have the situation just JennyBurke33 described,iwith excessive daytime sleeping and sometimes pretty tired. Im a English learning so I can’t fully understand what you say ,could u type what u are talk for me ?
thank you
I would definitely get it checked out.
Im thinking I may have Excessive daytime sleepiness or Narcolepsy. Im always tired and I fight with my self to stay awake in class but I cant help it. my teachers always get angry with me when I fall asleep but I cant help it. randomly I just get really drowsy and I cant get out of it.
Oh. Passing out in class? I used to sleep all night then all day in school. xD I’m still constantly sleeping it seems. It gets pretty bad how tired I get. So I end up crashing for like 3 days where I’ll sleep 8hrs at a time and be awake for 30mins-an hour and then I’ll crash again. xD It cures me of exhaustion for about a week. I think I may have narcolepsy. But blegh. I’m not getting a diagnosis xD
i have something that doctors cant figure out. Whenever i like stretch or like have all my muscles tight i will just pass out. It happens to me all the time, in school and everything.
Whoa. You shouldn’t get in trouble for passing out! You should get medical help!
If it’s at the point where you’re passing out I definitely think you should get it checked out. It’s not normal for anyone of any age group to fall asleep at random.
:) Inspired.