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#1 Kikisu



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Posted 18 November 2013 - 09:10 AM

Hey, just joined the other day and wanted to say hi! I'm Dani, and my friend sent me a link to these forums when I told him that I was having trouble with my narcolepsy. I don't really know anyone my age who has it, so I've never found anyone to connect with and share. Everyone else in my family has sleep apnea or insomnia, so they're no help. It used to get so frustrating in school, or even at home, when I'd complain about being tired and hear someone tell me that they stayed up til 3 am and feel fine. I'd hear so many times from people that I was a teenager, and teenagers slept a lot. I used to beg my mother to feel rested, or cry myself to sleep begging whatever God was up there to just let me stop being tired for one day. Even my old doctor didn't seem to care about it; I'd been telling her I was exhausted all the time for years and all she'd tell me was to get a bedtime routine: drink warm milk, take a shower, not watch t.v. or use the computer before bed. It got so bad that I was constantly depressed (because I wanted to be able to sleep better) and tired. I had to switch doctors because there was NO way that I was going to be ignored about my problems; drinking milk was NOT going to fix me sleeping 14+ hours a day. 


My new doctor immediately ordered blood tests and other things (to see if I was anemic), and when it came up on my blood screens that I'd had mono in the past, he thought he'd found the problem and had almost given up. I eventually convinced my psychiatrist to order a sleep study, since she realized that being on strong stimulants for ADHD should not have me this tired, but then decided she wouldn't. If she did, she'd have to give them all my mental health notes and she was worried they'd write it off as depression; I got told that I was just depressed a lot too, and for sorta good reasons.


For the first 15 years of my life I lived with an extremely abusive father that pretty much screwed me up. I'd tried to kill myself, and used to cut on my thighs. I was in a really low place in my life. He didn't believe in doctors or medication. Thank whatever's in the sky that my mom did.


So I went back to my new GP, and he ordered a sleep study.


The sleep specialist immediately knew something was wrong when he started talking to me: I had deep dark circles under my eyes, I looked like I would pass out sitting in front of him, and I was on 72 mg of concerta every day and still felt that tired; so I had the overnight study done, and the nap tests the next day. Funny thing was, I had a hypnagogic hallucination (where you dream while you're awake) during one of the naps. I went back about a month later, and he confirmed it as narcolepsy. It was such a relief.


All the things that were weird about me all seemed to make a lot more sense; I even had a name for those weird dreams I had where I felt like I was awake but wasn't; I knew why my jaw felt like it would fall off, or my entire lower body went numb when I got nervous. I had always know I wasn't sleeping because I was depressed, but now I could prove it. Most people would be devastated to be diagnosed with a neurological disorder, but I was relieved, happy, excited. I can live with having a disease, but not knowing killed me every day. Everyday I woke up tired after sleeping for any amount of time made me want to cry. I've read that "there is an average 15-year delay between onset and correct diagnosis which may contribute substantially to the disabling features of the disorder" and that just astounds me. I'm 18, and I've been struggling with this for maybe 5-8 years at the most. I can't even begin to understand why anyone would put off getting checked out for being that tired.



I still take my concerta, because it really does help me when I take it. If I do, I might still be tired, but at least I can force myself awake after 8-ish hours of sleep. I also take modafinil when I need to do things, like when I was still in school (I graduated this may passed), or when I do get a job. 

Sorry for this long post, I just wanted to get my story out there and talk to other people who are going through the same thing.

#2 sleepingmonkey



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    Inspirational! https://www.youtube.com/watch?v=O8SUz0aJEpk&list=PLsRNoUx8w3rPRyXR6uDmY0zeznSQAkkd6&index=20

Posted 10 April 2014 - 10:50 AM

Hi there, Dani!


I wonder if you're still around - I see this post is old - but I wanted to respond; hope you see it!


I'm 30 now, and I can attest to the "15 year" delay! I can't pinpoint exactly when it started, but I recall being extremely tired in high school, and even middle school...so perhaps 14 to 15 years old. I went to the doctor multiple times over the course of those 15 years, and even more frequently when I was living on my own. Mostly I was told similar things to you...depressed being the most frequent "thought." Though, I NEVER felt depressed; just tired. Once I even told my doctor about the C and he told me I was probably just loosing oxygen to my brain when I was laughing (?????). The only tests my primary care physician ever did on his own were a thyroid test and a blood panel. Whenever I had other tests done, it was because I requested them specifically; first was Lyme's disease, then Lupus, hormone levels etc. I even suggested we look into MS, but he didn't think that was the case. I never, EVER felt like I was taken seriously, and my doctor (whom I've seen since I was 13), I think, thought I was a hypochondriac or something; he would always kind of smirk when I would make these suggestions for tests. I don't think ever really made too many comments to my parents about it other than the off-handed comment about being tired.


Finally last year, at 29, I had my overnight sleep study and the following day (my 30th birthday) I had the MSLT. My kind-of-new at the time boyfriend suggested I go back to the doctor. I posted this elsewhere, but just in case you haven't seen it...I was always googling "faintness/lightheaded while laughing" and then my boyfriend termed it as "muscle weakness while laughing." So I finally searched THAT, and then I came across ALL of these videos and stories and I was like OH.MY.GOD.THAT'S.ME. SO my PCP finally referred me to a neurologist/sleep specialist and I finally got the diagnosis, which turned out to be COMPLETELY obvious. I also tested positive for the HLA genes.


I felt the same way as you. FINALLY: I GET IT. IT ALL MAKES SENSE! And really, I feel more less like a crazy person, less lazy, less unmotivated...and just less of all these negative things I thought of myself. Less guilt. I could never understand why the rest of my family was so "productive" and I never felt that way. I would always tell myself that it would come with age.


There are so many things that I didn't even associate with my tiredness that are now explainable. My irritability when I am trying to sleep; I mean, full-on crazy girl! I could never well tolerate noises when I was trying to sleep. If someone would wake me up I would get really pissed and start throwing my arms around at them. Still do sometimes. Some of the things that come out of my mouth can be down right evil, and I'm a nice person. Obviously the C is now explainable too, which is probably the best blessing, because I had so much stress thinking I had some weird disease that likely someday would be the demise of me...like, always thinking maybe I had a tumor in my brain or something that was causing me to fall all the time. I was also always really curious as to why I could sleep for 10 minutes and dream. I always thought that was a "special" trait of mine, but I never knew that normal people don't hit REM sleep until 60-90 minutes in...had I known, I guess I would have seen the tie to N. I've always had a hard time concentrating, and even thought that maybe I had ADHD, but I know now that is not the case. Because of that, I always dealt with people much better via writing e-mails and texts, as opposed to talking to them in person.


I work for my parents now (much more flexible schedule), but prior to that I had an office job for 8 years. Every day on my lunch break I would park my car at a forest preserve, set a bunch of alarms on my phone and sleep. I felt so lazy. Honestly, sometimes I still do. Sometimes I still feel the guilt, and sometimes *I'm* the one that doesn't cut myself any slack, as opposed to everyone else around me. Yesterday I had a bad day with regards to the guilt. I got out of work early and instead of picking my son up from after school care, I left him there until I absolutely had to pick him up (6), and went home to take a two hour nap. It was such a beautiful day and there were so many kids outside riding bikes, playing and at the park. As it stands, my son is 7 and still doesn't know how to ride a two-wheeler because I'm always tired. He's always complaining about how I'm sleeping. It's very difficult to explain to a child.


So sounds like you get C, too. How bad is it? Like, what's a normal day like (with and without meds)? What's an average day like related to your level of sleepiness and the amount of naps you take? What is concerta and modafinil typically used for? I'm not too familiar with the drugs out there for N & C. I took Adderall for about 5 months and saw good results with regards to C (though, everyone seems to tell me it doesn't help with C, though it did for me - almost eliminated it completely). Before that I was on Nuvigil and it didn't help. The Adderall got me going in the morning and made me more alert, but it also made me wired/jittery, irritable, *BEEP*y etc. Also, I have noticed an increase in my C since I have eliminated red bull from my diet, I'm thinking because I'm not getting the B vitamins and Taurine; I'm going to start taking supplements of the two and see if that makes a difference.


I'm SO happy to hear that you got it figured out; what a HUGE relief! Keep me posted!



#3 Kikisu



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Posted 03 September 2014 - 02:04 PM

Hey! Sorry I never answered. I don't REALLY have cataplexy, I mean I get weak-ish when I laugh, or if I'm nervous, but I've never had a full on attack. A normal day WITH meds depends on when I take them. As long as I take them when I wake up, I stay  up for maybe 16 hours and fall asleep normally. I don't eat much as a side effect of my meds, and I focus really well. Without the meds, I'm foggy, drift in and out of sleep, don't get much done. I'm normally either just generally tired, even with meds, or so sleepy I just lay where ever I can and sleep. I can't nap, like ever, because when I do I sleep for a good 8 hours. Concerta is an ADHD medication, like adderall, and I was on it to help me concentrate. Modafinil is the same as nuvigil, I think, and it simply "promotes wakefulness". Its used for narcolepsy.