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
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Posted Sep 19th, 2008 at 9:01PM 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 | |
Posted Sep 20th, 2008 at 4:01PM 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! | |
Posted Nov 6th, 2008 at 1:27PM 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. Finally it got worse and worse I was tired no matter how much I slept! Even after 10-12 hours I was exhausted. 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." 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! 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! 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. | |
Posted Jan 2nd, 2009 at 5:05PM, last updated Jan 2nd, 2009 at 5:18PM 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... | |
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