I'm Not Lazy!

After years of being diagnossed with depression and having tons of blood work done... I finally went in for a sleep study. Although the idea of narcolepsy is quite scary, I felt releaved that it wasn't just my personality. Everyone thought i was lazy and anti-scocial in college. I often missed out on fun times with friends b/c I chose sleep over them. Once, I was called out in grad school by a teacher. She laid into me about being disresptful by having my head on the table or eyes closed. I wish I had been tested then. Somehow, I made it through those tough years. I moved away for my first real job about 5 years ago and nearly got fired within the first month. I was constantly late, and  missed important meetings that happened after lunch b/c i would fall asleep at my desk!! I eventually scheduled a nap time in, and hid on a bean bag behind my desk each day. Occassionally I would sleep for 45 mins in my car during lunch also.

Since being diagnosed, I have become a much better employee and overall more active person. Unfortunately, I rely on Adderall. I take several doses a day. When I go out on the weekends I have to estimate when I will want to go to bed and medicate accordingly. My family and close friends are all aware of my situation, though don't fully understand it. Anytime I go home to visit my parents for a long weekend, I think of it as vacation. I don't make plans that involve waking up early. They can't understand why  I am still sleeping for 10 hours at night if I am taking meds. My sister is the same way. Anytime I decide to opt out of an event or choose to go to bed early, she assumes I must not be taking my pills! They don't understand how much I HATE relying on them, and don't want to fill my body with uppers when it's not neccissary. I'm still single, and have to say that the narcolepsy definately affects my relationship with men. When I go to bed, I want sleep... ASAP. It's very difficult for them to understand and be compasionate when they are sexually frustrated!! LOL

atlnarco atlnarco
26 Responses Sep 10, 2008

I'm sick of taking adderall. I'm on a very high dose. I need a vacation.

I have narcolepsy as well. I force myself to stay awake though. Especially when I'm driving...

Hey - I HAVE NARCOLEPSY TOO !! and I totally relate to your post. I also have depression too.

For years I didn't know what was going on so it was a relief when I finally got diagnosed - I had been sent to a sleep clinic after falling asleep at the wheel with a doctor (my mum) in the passenger seat.

It sure isn't easy to live with and because it's something that is rare and isn't visible people don't understand.
I have been on and off disability support pension since the late 1990s although I did manage to hold down various high stress full time jobs for about ten years, but I had issues with punctuality, falling asleep at my desk or while talking to people, and at one point I had a horrible manager who made my life hell because she assumed (wrongly) that I was lazy. Lost count of how many times I've been fired ...

You're not alone.
In case you don't already know, there are some great support groups on Facebook.

I have been on every kind of stimulant available and the one that works best for me is Dexamphetamine - I've been on the same dose for the last 16 years and although I'm not quite as functional as I would like, I couldn't live without it.

Whatever meds you take, don't do what some people do and keep increasing the dose - I used to take a day or two "off" each weekend, when I was working full time it was usually Saturday, and I would literally sleep all day just to catch up on my sleep debt from the previous week.

In case you don't already know people like us usually have disrupted nocturnal sleep plus we don't get stage 4 "deep sleep" which is why we get daytime sleepiness.

And if you have all the classic symptoms you also get cataplexy, hallucinations when waking or falling asleep, and sleep paralysis.

The only good thing is that we tend to have extremely vivid ultra realistic cinematic dreams - my dreams are so realistic that waking up is a very confusing and disorienting experience and the dreams even generate memories - which is really weird when you remember something only to realise that it happened in a dream.

It's not easy and it can be hard to deal with but at least we're different.

Hang in there.

Yeah, I have to abuse my Ritalin just to function, and I feel ya on the sexual aspect. My family hasn't even done any research and I guess they still just think I'm lazy and making excuses. I have the worst time with "micro-sleep", so I'm basically a zombie when I am awake.

I'm 19 and I have resently been diagnosed with narcolepsy. I had the same problems. No one gets that I'm not lazy! I would love! To have energy to get stuff done. I just can't:(

I don't have narcolepsy, but I do have sleep apnea. <br />
No medications for it, just some stupid sleep mask, that is oh so sexy! <br />
I get run down sometimes and need 10 to 12 hours sleep. I can't get it. <br />
I have fallen asleep standing up for goodness sake! I have had surgeries. <br />
Sure they helped for awhile. I am sure it will be a death sentence, it has already ruined my life! <br />
Good Luck!

I have sleep apnea as well and I have to sleep with that oh so sexy mask as well!

I know how the med thing feels. I'm on ritalin and provigil and will still fall asleep if I lay down. My friends don't understand that. It's always, "you sleep too much, why don't you just take your pills?" I don't like taking them and typically only do so when at work or driving. I wish I could get it through that I don't like being jacked up all the time.

I have hypersomnolence- a lighter form of narcolepsy- basically i just don't have the cataplexy. Finally after a million tests and 10 years, I have a diagnoses. My doctor prescribed Nuvigil, a newer form of Provigil. I can tell when I have not taken it, but it doesn't help much....

I was diagnosed with Narcolepsy 4/2013 and put on Nuvigil and I agree that it did nothing. I saw my neurologist today and she switched my to adderall. I have read a lot of good things about it and am hoping for the same success. Maybe you should look into having your meds changed to something that works for you! Good luck! :-)

I have posted my narcolepsy experience on some of the previous posts from others....I totally understand what you mean about the relationship and the sexually frustrated non compasionate spouse, even though they are a good person..........they just don't understand it. SO FRUSTRATING!!!<br />
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I Totally understand....you have noone to talk to, no one who understands or wants to try to understand. They consider you lazy and it affects relationships due to the misunderstanding. There is no cure for it.....it's like a family member being diagnosed with something that you don't know about, you go online or ask the Dr. to try to find out as much info. as you can.....I wish my family/friends would do that with Narcolepsy. Books A Million doesn't even carry books on Narcolepsy. I found one online which was very helpful, it's called NARCOLEPSY "A funny disorder, but not a laughing matter". I hate to read and I had it read in one night. It was very helpful. I have SEVERE Narcolepsy and mild sleep apnea. I take Nuvigil to keep me alert during the day, but still very sleep. Dr. says if I worked driving or a transportation job, I would be on disability.....I deff. do not want that. I just have so much stress, mostly with my job and running around with kids and like right now, I'm trying to talk to people to understand this stuff and my husband keeps saying "Aren't you gonna come in here and eat".....My stress levels are sooooo high. I have numbers running through my head all day working in accounting then come home to help my child with homework, not to mention all the home chores and miserable.......there's no real, fun, energetic life. Work and try to catch up on sleep is all I do. I start dreaming after being asleep 50 min. (suppose to at 90-120 min.) so my stages of sleep are quick, and when it's time to get up, I'm dreaming that I'm already awake, taken my child to school, at work talking to people or dreaming about something that happened or I thought of that day. I actually work with a Dr. who works at a sleep center with her husband so they have been very very helpful. They say it's never curable but treatable along with the cpap at night for apnea. It just takes a while to figure out the meds. I wish I knew a med that would just totally not make you dream....

I have to totally agree with everything you have said. I was in a bad vehicle accident when i was young, and later ended up having a major seizure. It was this doctors thought i was still having seizures in school because of the sleepiness and headaches. Then they tried to tell me I had a split personality disorder because my voices actually change with this. Last thing they thought i had was depression. Yes granted depression kinda comes a part of this narcolepsy, but it made me actually cut myself because i so felt like i didn't want to be around sometimes, that i felt better off just to kill myself. So i would try to think that something better would come around and that made me from cutting myself at the time. Also, I lost 3 jobs with this, because i simply denied i had narcolepsy. one job, my boss let me go cuz she said i kept falling asleep after my work was done. She told me she was scared if i fell asleep while working i would harm myself or even death; since i worked in a kitchen as a cook/waitress. Granted i loved the waitress part better. I was more energized when i could talk to the customers during slow hours. I finally found a job i have been at for roughly 3 years i would say as a driver, insider at hungry howies. Again i get to talk to customers and stay active, its when i leave when i feel back to my tired self.<br />
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As for the whole relationship part, i almost gave up myself simply because i couldn't handle the emotional breakdown because they wouldn't believe me and thought i would try to make up an excuse every time they wanted to be with their friends. Im sorry, but not to be mean, camp fires aren't really my thing of being active. I even got really close of dating a woman simply because women like us understand each other way more then men. I finally found a man i have been with for 3 years. Again, i am having the problem of not believing i actually have this; but i love him that much, im still hoping one day he will cope that yes in fact i do. I just hope one day i can take a medication that will in fact end this tiredness and let me enjoy more things with the man i love, without the crazy symptoms. There are just so many days that i cry at home because of how he makes me feel and when he finally makes me talk to him like last night, he acted like its all in my head that i have dissasociation.

I have an older sister who has been affected by this disease for over half her life...she had to leave college because she couldn't keep up with her studies.<br />
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She lost a job with the state of NY because of it...her narcolepsy is also complicated with Katoplexy (parallazation).<br />
She used to really frighten me sometimes...she's be asleep (or so we thought) and be trying to wake up but couldn't...she directed us to slap her until she woke up.

its good to know some1 suffered so long found the relief finally ...about the classes and having ur head on table or eyes closed part , at least the teacher called u ..while that happned to me and i was offended by th teacher infront of all students in the class saying " its so un-civilized way of acting to sleep in a class" and she actually told me i either wake up and pay attentions like the rest or get out of her class ..and after all this guess what?? after the class i was the one who went to her and apologized and said that i didnt sleep the night before b/c i had an exam, though i was already diagnosed with narcolepsy and i knew it wasnt something i can control but i didnt even think of mentioning it .. but i felt awful getting offended then pressuering my self to apologize to a worthless stuck up person .

i am really sorry to learn that you are suffering so much. i suffered from some kind of problem too. i can understand how does it feel not being able to be a normal person. sometimes i hate myself. and my problem has been following me for over ten years. and it is still by my side.<br />
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hope you will get stronger and live a better life

thank you for helping me understand narcolepsy. It was the first time I heard about that disorder. I knew someone experiencing the same symptoms and receiving false judgement from others, however she never seek medical assistance thought it was just her personality

I cried when I read your story. First, I cried because I felt so bad for what you have gone through and continue to go through, and then I cried because so much of you is me! You deserve to be recognized for the fight you have perservered through to get as far as you have. You have surmounted over odds stacked heavily against you and still came through. Your husband is either ignorant of the illness or just a selfish bastard. If he doesn't like the way the house looks than he should clean it. "Problems need to be fixed by those that see them or that person just becomes part of the problem."<br />
Think about it. I wish you all the best for you deserve nothing less and I PRAY that you know that to be true.

It's GR8 u dont rely on Adderall! I must take them daily for my fatigue (only 2 max), however my dr has informed me that I must be weened off soon. <br />
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Apparently, consistent use over several years causes the speedup of heart rate and other organs. I'm glad u dont let it become a crutch!

You are a sleeping beauty. Make good use of the hours when you are not sleeping. I am sure you will find your princess one day. Stay positive. O(∩_∩)O

i'm so happy for u!!!!! all this time, & u can finally get help. i'm sorry that the thought of relying on meds bugs u, but if u weren't helping urself any way u could, it would be kinda insulting to the ppl that want u to get help, right? ;) it's cool if u take breaks from the meds, though. it's not like ur mood is going to change & be a nuisance to ppl... but i am sorry that they don't understand how much sleep u need & all that... ... ....& about the men who want to do stuff before falling asleep. LOL. well, shame on u for being a pretty girl! ;) the right guy will understand...

I can relate to how you feel, I don't have narcolepsy, but I have sleep apnea, and there was a time I was ALWAYS exhausted. Heck I'd get to work at 6 am and since no one arrived before 8 I'd sleep till 7:30 am and then go about my work. Since I wasn't behind no one ever knew.<br />
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Finally it got worse and worse I was tired no matter how much I slept! Even after 10-12 hours I was exhausted.<br />
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Finally one day my husband was like "babe the other night in your sleep you made a noise that sounded like you weren't breathing and when I touched you, you stopped."<br />
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I decided to look into sleep disorders and found out about sleep apnea and made a doctor's appoint. She made me and my husband fill out an extensive questionaire and then a week later I was set up with a sleep apnea test and come to find I only had MILD sleep apnea! MILD THEY SAID! I stopped breathing an average of 10 times an hour for 12 seconds at a time!<br />
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Since February I've had my sleep apnea machine and I've felt so alive, I no longer snooze 3 or 4 times a night, I hit the button and I'm up!<br />
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I'm glad you figured out your problem, I have a few friends who I tell them to go get tested, but for some reason they refuse- makes no sense if you ask me.

The provigil comment is right on.You might ask your doctor-it's non-stimulant.And Prozac also helps even out Provigil so you can sleep better.

I try as much as I can not to use the medicine, but its hard to explain it to others if they dont fully understand how narcolepsy works....

Its good to see that you are taking it one day at a time. I am also glad that you have finally been correctly diagnosed as well. Hope you will be well. and good luck! ^ ^

I'm glad you were able to get help when you looked for it. I have the same symptoms as you, am Bipolar, and ALSO went for the sleep test. Maybe because I work Nights, and couldn't get a Day Test, having the Test at night gave different results. They couldn't find anything wrong. It figures. With me, I've had so many tests to check out things that could be wrong with me and they always came back 'normal' - whatever THAT is!

I wasn't diagnosed until I was 37 although I know now that it onset was when I wa about 17. I have all the trademarks-hypnogognic hallucinations, instant REM sleep, cataplexy, automatic behavior. it was such a relief to find out finally that what I was going through was an actual condition that could be treated. I've been on a couple medications for the sleep part- one a class 4 narcotic- heavy duty with severe highs and lows-but now I'm on provigil which is great. Very smooth, much less noticeable that the other. I still need to be aware of the time when i take a late dose, but I highly reccomend it. Prosac controls the cataplexy. I don't take ita all the time, but if I'm off it for too long I'll start noticing the cataplexy showing up in my facial muscles first. I agree with you about the naps though- nothing better than an afternoon nap- even if only for 20 minutes or so. Good luck, snomau

At least you know what is wrong and that understanding the problem and solving it makes things easier.

good to know that things got better for you :)