23 replies to this topic

[Marinaki]

Hmm... Relationships and Narcolepsy. An Interesting combination. I am 26 years old, as I look back I had my first symptoms around 16... they were still controlable. Around 20 is when the sleep attacks took over my life. It was then that I was dating the guy we all wish we could some day find; and he was more than understanding that I was just tired and not lazy.... he even understood that I had to stop going to college cause my grades were suffering I could not stay awake to save my life.
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.

[maxfan]

i live just like this. i'm almost getting kicked of school. going on disability at age 17 feels horrible. my friends think i'm lazy. my mom has narcolepsy too, but she doesn't have it as bad {she wakes up every morning and goes to bed every night}. she thinks i should "pull it together". for the people that don't believe me, i can't explain how real it is to not be able to fall asleep or get up like a human being instead of a cat.

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.....

[ATampaNarco]

Xyrem wqill change your life. Dont let it get too much more out of control! It does not cure the problem, but in my opinion it effectively treats it!

[Sleepycheese]

I'm 28 years old and just recently was diagnosed with Narcolepsy. I started taking Provigil about 6 months ago. With my body size, I'm 6'11" and weigh about 260lbs, I have to take two pills a day. Some days it works, but some days it feels like it does nothing. I've come to terms with the fact that I will be like this for the rest of my life, but it sucks. It's just kind of lonely and boring.

[ATampaNarco]

:shock: Please talk to your doctor about using Xyrem..... It will change your life.

[Zzzoe]

Marinaki, I can so relate to your post. I wish I had been diagnosed sooner. I had struggled my way through life getting misdiagnosed and missing out on a lot. When I finally hit the wall at 42, it was obvious enough for me to get diagnosed and treated. If my cataplexy were severe it would have been more obvious to the doctors sooner. The only up side is that given the fact that I can't tolerate the stimulants, at least now there is Xyrem. I resisted being prescribed that until last year. Just like TampaNarco says, it can change your life. I am far from being "normal" but I am so much better than before. It has allowed me to keep working full time and even stay awake until bedtime. And you can't imagine how wonderful it is to just fall deeply asleep, stay that way, and wake up normally without all that dream/wake, halucinating, exhausting, confusion going on for hours. My mild cataplexy is nearly non-existent on it also. The best part is that there are no side effects to deal with during the day. It does it's job at night and leaves your system quickly and thouroghly. That is why you need to dose twice a night. It may not be for everyone, but it's definetly worth a try.

[sleepytymegal]

I believe I have always had narcolepsy, but have been diagnosed only about 20 years. I've been through ritalin, dexadrine, now Provigil. Just began Xyrem--this will be night #3. First night seemed okay, but last night, I got maybe 15 min. of sleep. The only way I know was the dreaming!!

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!

[aimeemerr]

sleepytymegal - have some faith- as others have said Xyrem has changed my life - after finally being diagnosed with narcolepsy I had finally accepted that I was going to live like that forever and that's no longer the case. Before xyrem I was on provigil and ritalin and I no longer take either of them. I have had one night that I didn't sleep at all with the Xyrem but I was home alone and I think I was anxious about the possibility of not waking up if something happened.

Don't give up- keep your head up..... For me it's been well worth it!

[DozyDayDreamer]

I've used Xyrem in the past, and will again soon. But, Xyrem, for me, is not the end-all-be-all solution for Narcolepsy. It helps with sleep consolidation and Cataplexy, but it didn't help that awful much for me.

Xyrem is not a panacea. It is helpful but you still have Narcolepsy even if you take it.

[kelli]

marinaki...omg. i feel almost the same way. i'm 20 now but i feel like i was so much better a few years ago. i'm pretty sure my narcolepsy is getting worse. i have thought about taking a semester off so much lately b/c all my professors just think i'm lazy and it sucks. i decided against it though because all i would do is sleep and work and not make any strides to obtaining my degree. anyway, i have been with my boyfriend for 6 mos. now and at first, he would talk so much *BEEP* about me being lazy and unmotivated, and i was like...NO, fool! i'm just tired! *BEEP*! he is more understanding now and he evens instills motivation in me that would never exist without him. to all the narcoleptics here, I just wanna say i really appreciate having a place to vent b/c no one else understands how disabling this damn disorder is. oh and does anyone take adderall? i'm thinking about a new drug b/c sometimes i fall asleep on it. and i tried provigil for a few mos. and stopped. even though it was better than nothing, it wasn't enough...

[Marinaki]

Kelli... provigil does work... the thing is you will have sleep attacks still no matter what you are on... provigil just lessens them... you have to still take naps... I make sure to take on everyday at the same time. You have to find out what time is best for you try not to sleep over an hour or after 4 pm other wise you will not sleep well at night. Adderrall is meant to help you focus in people who use it it slows them down enough to focus like those with adhd for those who do not need it it is like speed. I think for us N it might be something in the middle.

[Sleepycheese]

It says not to drink alcohol when taking Provigil. Just wondering if anyone has drank while on it and what did he/she experience if anything.

[Marinaki]

When I first started Provigil I did drink one night while out... even though I have Narcolepsy it's amazing how I can stay up till 6am and even go to After Hours.. .lol... with out a drug in my body. When I started Provigil I went out one night and noticed that I didn't "drop" in awake levels around 2-3am like I used to because I had popped an extra Provigil at 3pm. The part that always kills you is the drive home.

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

[linzieluv]

You feel the alcohol faster because provigil is a stimulant, which causes it to metabolize faster. The times that I have tried to drink on it, I just pass out. It takes less to feel hung over too. Just be careful and start slow the first

[laner10]

I just found out that I've got N about 5 months ago. I'm 25, I graduated college at the top of my class and I've lost 3 jobs in the last 3 years and getting ready to lose another. Somehow I've managed to find a mgt. position with my questionable work history. I didn't realize until tonite how much I have pulled away from my family, friends and girlfriends until I read marinaki's post. I much rather sit in my house alone than battle N in public. I have realized tonite that I went from being one of the most popular people in school and having a ton of friends to being alone every night because of this disease. I can't get along with people at work because I can't think straight. Everyday I drive home wondering if it is really worth it. I want a family.... but what girl wants to sit at home and watch movies every night?

[WakeChallenged]

Hi laner10,

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.

[jlconrad]

I am 22 years old and was diagnosed when I was 17. Before I was prescribed provigil I was sleeping through 4 of 8 classes in HS, I had multiple close-calls in the car, I had "night-mares" where I thought I was awake but couldn't move and if I didn't get out of it I would die...I just thought I was really tired and it was normal. (I am also ADD) Long story short, here is where I am at now with provigil...
- 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.

[WakeChallenged]

Thanks jlconrad for the info; your suggestions are good advise and do not seem corny. I believe you are correct that some people have symptoms that are more severe than others. I wish my meds lasted as long as your last for you, unfortunately my first dosage (400mg Provigil 20mg Adderall) at 6:00 AM only last me for about 5 hours and then I have to take a second dose of Adderall (40mg) in the afternoon at about 11:00 AM. Ususally, by the time I get home from work, I am ready to drop and don't think I could exercise if I had to.

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?

[jlconrad]

When medicated, traits such as lethargy, stress, loss of concentration are significantly reduced. (I take concerta 54mg for ADD) I notice a significant increase in alertness when medicated. An example, yesterday my wife said to me "That person is sneezing" (Someone behind us in church was sneezing on us;). What I heard was, "My purse is missing" which didn't make sense so I sat there for 1 minute trying to put the sounds together before I figured it out. Needless to say, yesterday I slept in so I didn't take my medicine-bad Idea . Hopefully that answers your questions. Even on medication, it's not perfect but it certainly helps.

[katescar]

on the topic of alcohol and provigil...

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.