I'm not lazy ~ I am just tired....
Posted 09 October 2007 - 05:11 PM
At 22 I met another guy that although was at times a flat out scum bag, also understood that there was something beyond my control going on, and at this point I wanted to go back to school, but I also wanted to be able to make plans with my friends and not have to worry about taking a nap before I went to see them (which even that would not always guarentee my not passing out). At this point I had already diagnosed my self with narcolepsy, having demanded a referral for a sleep study a year prior... I was driving home from class one afternoon, and I remember at one point opening my eyes about a foot a way from driving into the back of 18 wheeler and decapitating my self... You don't know awake until you scare your self awake. I went home and stood in my boyfriends room for an hour or so until he came home, motionless, when he got there he asked what was wrong and he flipped out on me... I was so upset that he was angry at me, only to realize that he was upset at the situation... the next day i made my sleep study appt.
Two weeks later I realized the difference between (what normal ) people experience as tired and Sleep Attack tired... Freaken Provigil I wish I'd known you sooner.... my life could have been as vibrant and as happy as it once was.
Now I am dating another who although understands that I have narcolepsy resents it and sees it as an excuse, an excuse to be antisocial, an excuse to go home, an excuse to not go out... he still and sadly i don't think that he will does not see it as a disability but rather an inconvinience.... and that saddens me.
I missed my best friends birthday cause I was too tired.
I slept through my sister's graduation.
I skipped my own because I could not forsee sitting there for 3 hours...motionless.
I sleep on my break instead of eat.
I can't go to the movies.
I can't sit on a couch infront of new people... Comfy is no good.
but all those are nothing compared to the feeling of the decision to stop my medication to get pregnant to have a child, to be selfless.... but then in order to be a functioning parent go back on it after birth, or do i not have children at all and just adopt.
It's funny because something so 'invisible' has so much control over your life and the decisions you make, while every one else sees you as normal.
I'm sick of being moody.
I'm sick of being cranky.
I'm sick of not being able to do so many 'boring' things.
I'm sick of falling asleep while others drive.
I'm sick of not sleeping at night.
I'm sick of not eating lunch.
I'm just sick and tired of being tired.
Posted 10 October 2007 - 06:29 AM
speaking of which; it's 4 30, which it when i go to bed. i hope they put me on the xyrem or whatever it's called soon so i can get some rest.....
Posted 10 October 2007 - 07:57 AM
Posted 10 October 2007 - 08:44 PM
Posted 11 October 2007 - 08:35 AM
Posted 13 October 2007 - 02:33 AM
Posted 14 October 2007 - 08:27 PM
Those of you who like Xyrem: please, some particulars. Has it ever kept you awake all night? Normally, no amount of sleep is enough and I haven't even napped today. I did have a bit of a dizzy hangover. The worst thing was just lying in bed and NOT being able to sleep.
I have great hopes for this drug addition. Encouragement, please!
Posted 14 October 2007 - 09:29 PM
Don't give up- keep your head up..... For me it's been well worth it!
Posted 14 October 2007 - 10:19 PM
Xyrem is not a panacea. It is helpful but you still have Narcolepsy even if you take it.
Posted 18 October 2007 - 10:36 PM
Posted 19 October 2007 - 04:18 PM
Posted 19 October 2007 - 08:27 PM
Posted 20 October 2007 - 08:54 AM
Anyway drinking on any medication is probably stupid... but I have always limitited myself to no more than 3-4 drinks when I go out... I have noticed that my once high tolerance even for an occasional drinker has lessened... after drink 2 I'm usually feeling it I know I have consumed too much alcohol when my jaw starts to tingle or go numb... I know it's strange but it's only been since I started the Provigil. I with my boyfriend usually will drink a bottle of wine between the two of us at dinner on Friday and I have noticed that since starting I do not drink my wine as 'fast' as i used too and that I can milk the glass for the course of dinner and be ok.
But like I said you will get drunker faster... I don't enjoy being drunk so clearly drinking on Provigil is not for me. And your cataplexy if you have it may get worse.
Dont experiment. Just think Smart Party Smarter and Be Safe
Posted 26 October 2007 - 02:18 AM
Posted 03 December 2007 - 10:08 PM
Posted 04 December 2007 - 02:29 AM
It's good to know there are other people with Narcolepsy that have issues with work. I don't always get along with others because I can't think straight or my mind feels like it's in a fog. I often have (mild) cataplexy attacks at work, but I'm always concerned they will get worse, to the point that people will really start noticing. This tends to stress me even more.
Posted 07 December 2007 - 03:01 PM
- I get tired like a semi-normal person when I don't sleep enough
- I don't have cataplexy attacks except for occasionally after sex or when I am really tired and my wife tickles me. It only lasts for a second or two
- I do struggle daily with being alert and I find myself frequently not remembering what happened the last 5 minutes.
- I just got married, and for the most part I can function well and my wife doesn't really notice my N symptoms.
- I drive to and from work every day
- I drink on the weekends (I probably shouldn't as even when I have just 2-3 drinks, I wake up and don't remember much. I am 5-11 and 175 lbs)
- My most-common problem is that I have a difficult time remembering details of conversations that I have with my wife so I forget to do things and/or in an arguement I am unable to repeat what she says so she thinks I wasn't listening.
The reason I am posting is because after reading this forum I actually feel fortunate to have narcolepsy. I used to think poor me, my life is so much harder than everyone else's but now I realize that I'm not the only one with problems and mine aren't so bad as others. What I would like to share is how I got where I am.
It took me 3 terrible years of feeling like I was at a dead-end and that my life was eventually going to fall apart b/c of N before I got things straightened out and I don't know what I would do with my life if I had to go back to that state. What I have found to work very well for me is the following...
1. I get 8 hours of sleep a night, if I don't then I start having sleep hallucinations and a drastic decline in alertness and over-all function.
2. I have dinner at least 3 hours before I go to bed and don't eat snacks after that. If I do, then I can't sleep
3. I take my medicine when I get up at 5:45 am and it lasts until about 6 or 7 pm. If I take it at noon on saturday, I am up all night.
4. I try to eat healthy - lots of fruits and vegetables - and this has definitely helped with my over-all feeling.
5. When I do excerise regularly I notice an increase is my daily alertness and over-all energy.
These are just a few things that I do to keep me sain and minimize the effects that N has on me. I hope that this may help some people that struggle with this, but I am fully aware that my symptoms may not be as severe as others. I know that some of my suggestions may seem corny and/or you have heard them before, but I can honestly tell you without doing those 5 things, my life is a mess and I am not a pleasant person. Thank you for your time and my thoughts and prayers go out to everyone that struggles with Narcolepsy as I know what a burden it can be on a person's life.
Posted 09 December 2007 - 04:00 AM
You said you struggle with staying alert and not remember what happened 5 minutes earlier but have you noticed if you are stressed more than usual, do you struggle more with your memory/alertness? Or have you noticed?
Posted 10 December 2007 - 07:46 AM
Posted 27 December 2007 - 10:34 PM
the main concern with consuming the two together is the stress on the heart. alcohol is a system depressant, but it can increase your heart rate, just like provigil can. as long as you pay attention to what your body is telling you and know when you aren't feeling right, you shouldn't have much problem.
i have a drink now and then with my provigil (and my heart condition) and haven't had any problems.