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- October 12, 2018 at 1:54 pm #8056
I’m new. I was diagnosed with narcolepsy over the summer shortly after being accepted to grad school. I’ve been needing to talk about my problems, but tend to downplay things when speaking with friends, teachers, family, etc. I was hoping to join this group over Christmas break, but have been struggling a lot lately with memory loss, so I’m hoping someone can tell me if this is normal to narcolepsy.
There are times I’ve done things that don’t make sense. For example, having a conversation with someone, but suddenly I’m not making any sense and when someone brings it up, I don’t remember the conversation. I’ve typed/written gibberish, spoken gibberish, and driven to unfamiliar places and gotten lost.From what I understand, these fall into “automatic behavior,” which is a symptom of narcolepsy.
However, things have gotten worse. Once I was putting together a bulletin board, and I thought I was completely aware. I remember focusing on aligning things up correctly and spelling out the months of the year. However, about half an hour later, I realized nothing on that bulletin board made sense. It looked like an attempt at words, but they didn’t actually mean anything. Some of the letters were even upside down. BUT! I actually remember doing it and doing it correctly. I was there the whole time, so this isn’t a case of someone messing with me.
Now, it’s getting more bizarre. I have to heavily edit everything I type or write because it tends to come out wrong. Sometimes it’s complete gibberish. Other times, though, I can tell what I was trying to write, but random words and letters appear where they shouldn’t. I’m usually a lot better with typing than this. Maybe automatic behavior?
Then, I had to give a presentation in class. I have no memory of giving this presentation or interacting with others in the room. I don’t remember passing out handouts. Nothing. That whole 30-40 (?) minutes is blank. At first, I panicked. I was scared I went into automatic behavior, and the presentation didn’t make any sense. Afterwards, though, I got so many compliments on it. One fellow student said it was her favorite of all of them so far. My professor even said it was good. I jokingly brought it up to another student after class (I always downplay my worries with this), and she said she experiences the same thing when she gets nervous, so I thought it was normal. I’ve had this happen before during theater performances, and I’ve always chalked it up to nerves and/or dissociation. Oddly enough, when this would happen, I’d get a lot of compliments.
Recently, though, I handed in a paper for an assignment for a different class. I have no memory of doing this paper. It was ready to be submitted on my computer, but I don’t remember actually doing it. I had to clean it up a bit (again, some random words and letters, sentences repeated, and some sentences had completely different words from what I remember typing), but otherwise, it was too well-done to be automatic behavior (I think?). It definitely wasn’t the best paper, and I realized later it didn’t fully follow the parameters of the assignment, but it was coherent, organized, and obviously the correct assignment.
I remember reading the article I had to write on. It was very dense and took a lot of focus, but I remember taking notes on key points and roughly sketching out an outline. I did lose time afterwards, which I’m assuming is when I actually did the writing. I also found some notes I took on a .pdf file of the same article that I don’t remember doing. With the reading and notes I do remember doing, it didn’t feel familiar to me at all, but sometime before that I had already read the article and taken notes on it.
This isn’t the only project this has happened with, and it’s not always related to school. I’ve brought this up to my therapist in the past before I found out I had narcolepsy, and she thought it was a mindfulness thing, but I know the experience of mindlessly performing tasks and not remembering them, like maybe not knowing if I turned the stove off or something. This feels completely different. Plus, completing a graduate level paper doesn’t seem like something someone could do mindlessly.
Has anyone else experienced this? I’ve been wondering if it’s related to narcolepsy, but in the past I used to worry it was something neurological. I have been checked for seizures more than once. The first time, I was told there was some temporal lobe activity, and was referred to a neurologist who did a follow-up overnight test, which was negative. About ten years later, my cataplexy was getting bad and my doctor worried it was seizures, so I was checked again, and the test was negative. A year or two later, I was diagnosed with narcolepsy.
I’m a bit confused. Maybe I don’t fully understand automatic behavior? Anyone else have similar experiences?
Thanks in advance, and I look forward to interacting in the group!October 12, 2018 at 2:22 pm #8058
I get the same thing happen to me. I’ve had numerous neurological exams done to see if it’s anything neurodegenerative, but I just keep getting told that I’m otherwise normal and it’s to do with the narcolepsy. But it is extremely frustrating to have someone tell you that and feel like you have some sort of early onset dementia (at least for me). There really isn’t anything I’ve found that I can do for it except deal with it, so I’m sorry if I’m bot much of a help. Maybe someone else has something they do that works.October 12, 2018 at 6:19 pm #8062
My first question to you is what meds are you taking. Something to stay awake? Something to stop the cataplexy? Something to help you get the deep restful stage of sleep at night?
Automatic behaviour usually ends up with things being done correctly and getting from point A to point B with no problems except that you don’t remember the doing or the getting.
Gibberish is what I have written when my brain is asleep but my eyes are still open and I’m still writing… looks like chicken scratches across the page. Same with typing.
So, get back to me with your meds and/or you may want to schedule a timed daily nap to give yourself a rest. N with C is not going to go away so you have to find a way to live with it that suits your schedule or around your schedule.
Oh, one more question, does this behaviour follow a particular time? Like immediately after eating or drinking something?
Hang in there!November 27, 2018 at 7:14 pm #8384
In my experience and as far as I’m aware what you are describing isn’t something that is a result of narcolepsy. I have done things while very tired in a sort of in between awake and asleep phase (more so awake) but I am aware of it and I don’t forget that it happened. It seems that whatever the cause is would have to be pretty serious to cause you to completely forget such significant time spans especially ones where you were actively doing something. I would definitely talk to your doctor about it. Also do you take anything for sleep or staying awake?November 28, 2018 at 10:16 am #8389
I have this often. Mine started about 7 years ago. When I was driving a lot, before I was diagnosed with N, I worked for a company as a regional manager and had to drive between states to different stores. There was ALWAYS a specific stretch of interstate that I wouldn’t remember driving until exit 63. Faithfully. From exit 101 in North Carolina to exit 63 in South Carolina, I just wouldn’t remember a thing. Music blasting, windows open. Nothing. And I never got in an accident, never got pulled over. I would talk to an old girlfriend of mine and she would say it was normal. I wasn’t buying that. I later found out that it was called automatic behavior. It was told to me that it was everyday behaviors that people do that we don’t control or recollect because they’re normal for us. Now that didn’t really make sense to me because I was driving and I didn’t accept such a mundane answer, so I did some reasearch on my own and this make more sense. It’s not a journal article, but it helped me understand why I was not remembering. I still don’t remember a lot, even though I am medicated I have TBI as well so I think once you are diagnosed (if you aren’t already) and you’re being treated or doing therapy to mange your symptoms, you’ll likely see some improvement.
JNovember 28, 2018 at 10:23 am #8394
I don’t know how to insert links. I tried to edit my post above because I forgot but when I pressed the link button it allowed me to enter the url but then I couldn’t figure out how to get it into my post. Sorry.
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