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The Progression Of Derp


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#1 DeathRabbit

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Posted 21 December 2012 - 04:07 PM

For those of you who've not read my other posts, the Derp is what I call narcolepsy, lol. I was noticing that it seems like so many of us have so many different syndromes, despite having the same disease. Then I got to thinking, I wonder if it's just because we are all in different stages, perhaps. Other diseases have temporal progressions that have been delineated into stages, so why not N? So maybe we should all describe our history of symptoms.

For me, it started late in high school. I was noticing I needed more like 8 hours of sleep instead of the 7 I had been used to getting all my life. I'd heard in health class that teen brains needed more sleep, so I didn't think much of it, other than it was annoying. Also, though I would deny it even to myself, I was intellectually slipping just a tad. Friends that had once come to me for help with homework, well, I started having to occasionally ask them. My once vast vocabulary was also slipping, and I found myself frequently looking for a more academic phrasing of something, but unable to find it, so instead, reverting to more regular wording.

Fast forward a few years later. I'm now finding my short term memory is kinda slipping. Whereas I could have once told you what I had eaten the past few days at each meal, I could no longer do so. If someone asked me to recount an experience or relate an idea or opinion, I had to stop and ponder, sometimes to no avail. It was at this point that I started sleeping incredibly deeply. I would sometimes turn my alarm clock off with no recollection, making me late for work. Sometimes, people would have entire conversations with me and I would fall back to sleep and have zero recollection. Also, I had really vivid and protracted HH/waking dreams. These would be very detailed and sometimes go on for hours. They weren't always visual though. Sometimes, it was just weird ideas or bizarre conversations in my head. At this point, my life was starting to be impacted, but as long as I got enough sleep, I could be ok and I still did well in school and at work, managing to swing a magna cum laude in computer engineering.

Jump forward another year or so. Now, it's gotten to the point where I have frequent headaches, sometimes lasting for weeks on end. I know wake up really easily, and most many times when I nap, I have the feelign of being conscious the whole time, though I realize I must be fading in and out. The EDS is still there, but now its mainly manifesting itself as a feeling of malaise and extreme cognition issues. Trouble with thinking, concentrating, retaining, etc is now the norm. I basically feel like a well educated moron. Also, my mood is really out of whack, even when I don't take stimulants. There's a tendency toward anger and irritability, whereas used to always be so easy going. All other emotions seem to be attenuated.

So yea, that's my story in a nutshell. I've simplified a lot, but basically, I went from slightly sleepy, to deliriously sleepy, to just feeling like a sack of crap. Does this look like what happened to any of you?

#2 SeeBee

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Posted 21 December 2012 - 05:32 PM

Honestly, mine was more a Perfect Storm of derp than a progression, haha.

In June 2003 I was mostly fine; I had just graduated 8th grade. The two B's on my report card were due to my own lack of effort and procrastination, I had randomly felt weak once or twice (which I'd later recognize as the beginnings of Cataplexy) and stayed awake until 8 PM or so without trouble. I had vivid dreams all my life, I figured they were just normal.

By August of that year, I was sleeping in later than usual, but everyone just kind of assumed it was depression (we had moved a couple towns over, away from everyone I'd known since I started school.) I was falling down if I laughed too hard, but had no idea how to explain that to anyone or what could be wrong with me, so I tried not to worry about it.

Fast forward into December, and I'm sleeping through all of my classes, failing several of them no matter how hard I try, and getting home just to sleep more. If I tried to stay awake, I'd feel really sick and people would worry over me, so it just became easier to give up and pass out. (Aside from feeling sick, there's some pretty funny stories from this timeframe that I might share someday.) The HH and sleep paralysis were just starting to show up, but I dismissed them simply as more vivid dreams, like I'd always had. I started consciously distancing myself from anything that might evoke an emotional reaction from me, out of embarrassment at my weirdness. It was at this point that Mom put me into therapy, expecting depression. (Well, there was some, but not for the reasons she'd thought!) I got my diagnosis in May 2004, and managed to get A's or B's in all but one of my classes after talking to my teachers.

That's pretty much it. There was a lot more stressful stuff going on in this timeframe that may have contributed to its progression, but it's kind of impossible to say what actually triggered it. I did have a fair amount of brain fog and moodiness back then (all the way until I started Xyrem in December 2010) but it's hard to say how much of that was N, or just being a teenage girl. I'm very curious to know how this compares to everyone else's experience...

#3 SleepyRaffie

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Posted 21 December 2012 - 10:47 PM

I am not really sure when it started for me. My parents got me therapy for my dreams around the age of seven. I could sit and watch colors dance in front of my eyes. I never mentioned it because I figured that it happened to everyone. I remember falling over from laughing at least by 5th grade. I had to laugh REALLY hard though for it to happen. Again I figured it was normal. I remember some adults complaining that I was lazy because I was sleeping a lot. In high school I would get dropped off early for school and would sleep on the bench outside and on the floor in the hall. I figured that teenagers needed more sleep. I did not sleep in class. Well I thought I did not. I could "zone out" really well and completely block out the world. I would come out of it with people waving their hands in front of my face. I have always taken naps when I was able to. I was told I was depressed, needed to take iron (I tested fine), was lazy, unmotivated etc... I often didn't know I was tired. I just knew I didn't feel well. I have had SP and HH for a long time. It probably started in elementary school. Again I thought it was normal. I was told that there was nothing wrong so often that I really believed it. A couple of years ago I began to wobble a lot and then I started falling. About that time the daytime hallucinations started. Now these things I knew were not normal. I started to work on getting an answer. A little over a year ago the EDS really began to take over. I started having memory problems as well. The EDS and cognitive issues have continued to get worse. I have to nap a lot now. I was finally diagnosed this past year. So maybe 30 years after symptom onset. That's it in a nutshell.

#4 munky

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Posted 22 December 2012 - 03:49 AM

I've had sleeping problems, among other things, all my life. Even as an infant, any time my mother could hear me playing in my crib all night, and at the age of two, she finally gave up. She'd put me to bed at 8:00. When she went to bed a few hours later, she'd check on me and find me playing in my bed, so she'd take me and my toys into her room. There, I'd sit between her bed and the wall and play until I got tired, then clean up my toys, turn off the light and put myself back to bed. She says that was usually around 5 AM. Then I'd be awake 4 or 5 hours later. She never had any problems getting me to take a nap in the afternoon, unless you count me falling asleep before she got me into my bed, but she did have to remember to wake me up, or I'd just sleep until dark. We used to joke that my biological clock was backwards, because I slept so much better during the day than at night.

When I started school, I managed to stay awake in class during the day, and I didn't generally take a nap when I got home, but no matter how tired I felt, I couldn't get to sleep before midnight or so, and 4 or 5 hours of sleep was normal for me. In my teens, I started having trouble staying awake in school, but we dismissed that as being bored. After school, I'd fall asleep on the sofa nearly every day, but I still couldn't sleep at night until very late, and couldn't sleep for any more than 4 or 5 hours.

I also, all my life, had very vivid dreams, and any "violent" dream--where I was fighting something that was chasing me, usually--I would act out. It wasn't until a really bad attack of insomnia worse-than-usual in my 20s that I got diagnosed with RBD. That attack was the worst it's ever been. I wasn't getting more than maybe 20 minutes of sleep a night for a week. I would start do doze off, wake up, and be unable to go back to sleep for a while, then briefly doze again, then wake up ... lather, rinse, repeat. Doc sent me to a sleep doctor, but my insurance wouldn't cover a sleep study, so he diagnosed me based on history as having primary ideopathic insomnia and REM behavior disorder. Gave me some clonazepam for the RBD, suggested melatonin to help me stay asleep, and that was it.

I took the clonazepam for a month, but when that bottle ran out, I decided not to refill it. I hated the side effects--the first time I'd ever experienced sleep paralysis, plus feeling muzzy-headed and incapable of doing anything whenever I woke up. Kept the melatonin, but didn't take it every night. When I had a bad night, waking up over and over again, I'd take the melatonin the next night.

Life went on that way for years. Then, earlier this year, one of the shift managers started telling me to wake up, it seemed like, every time he walked past my desk. I thought he was joking, at first, because we were having such slow nights, but then I got written up. After that, every time he'd walk past my desk and tell me to wake up, I'd get angry and tell him I wasn't sleeping--it never felt like I was. I never felt myself falling asleep, didn't feel like I was being woken up. Just seemed to me like I'd been sitting there staring at my computer screen the whole time. He insisted I was, indeed, sleeping. We argued over it several times. I got written up again. Finally, one of the times he told me to wake up and I argued with him, he walked away and one of my co-workers told me that I really had been sleeping. He was surprised to hear me say I wasn't, because I'm not known for lying to cover my butt. I was very surprised, and I called my doctor the next morning. The next night, when the shift manager was preparing to file another write-up, we talked. I explained that I really hadn't known I was sleeping, that I thought he was just ... being a butthole--though I didn't put it quite that way. Also told him I'd made an appointment with my doctor.

She sent me to a neurologist/sleep specialist, he sent me for a PSG/MSLT, and a couple of months later, I had my diagnosis and started Nuvigil. And I still count myself lucky if I manage to get 5 straight hours of uninterrupted sleep. Anything more than that, and I know I'm sick--or at least coming down with something.

A few notes: I was diagnosed with narcolepsy "w/o significant cataplexy". When I saw the neurologist the first time, I could only think of two episodes in my entire life that might have been cataplexy, but that was before I'd come here and I didn't have much understanding of what exactly it is. I'll have to talk to him more about it at my followup in March. My stumbling block on the cataplexy issue is the emotional trigger. I have never been a terribly social person--and by never, I mean my entire life. I don't generally interact with people outside my family and close friends, if I can avoid it, and I've always been somewhat emotionally detached. I very rarely experience "strong emotional stimuli." I just don't care what people think or do, as long as it doesn't interfere with my life.

And there are other neurological issues at work, in my case. I have an essential tremor in my right hand, which means that every now and then my right hand--and only my right hand--will start shaking and nobody really knows why. I have neurofibromatosis (type 1), thankfully a mild case--very few fibromas, all very small. It has caused other issues, however, such as scoliosis, and doctors think it was the cause of the grand mal seizure I had as a toddler. Never found any other cause, and I never had another. I'm also developmentally faceblind: I was born legally blind, so at the age when most babies develop the ability to learn, store, and recognize faces, I couldn't see them. As a result, I am completely incapable of recognizing people's faces. I can evntually learn to recognize people by stance, mannerisms, voice, or specific features (a beard, haircut, birthmark, etc.), but that takes time and people, especially kids, expect a person they've met previously to recognize them. This probably contributed to my preference for isolation, but so did the fact that I thought all the kids my age I ever met were idiots.

Who knows how all that crap might add up together and interact?