3 replies to this topic

[drago]

I'm posting here because my research has turned up... a lot of nothing.

 

I am DX Narcolepsy without Cataplexy. Treatment is going well.

 

Recently, though,  I have had some weird issues appear. Without any change in volume, my music or TV might suddenly become inaudible to me. At other times, it may become unbearably loud. (Like it 'smarts' my ears almost.) Agian, this is WITHOUT changing the volume or how close I am to the speakers. At first I thought it was stuff like a new song or a new scene in a movie... sometimes the sound levels change, right? But I've now noticed it mid-scenes AND mid-songs. It doesn't happen a lot, but it really bothers me when it does.

 

The other thing is hard to describe. It's like, I'll be looking at a picture, an image, or even a screen, and for a moment or two, I'll have no idea what I'm looking at. By that I mean, the shapes don't translate to anything for me. I remember a particular time when some movie had this shot of a boat in the ocean from overhead. It was this tiny boat in a sea of blue... but for the first few moments I looked at it, I couldn't see the boat. I couldn't tell it was the ocean -- like my brain thought it was some abstract art or something. If a person had asked me, "Hey, what is this an image of?" I would have no response. But that lasted for a few moments, maybe a few seconds, then I could see the boat on the ocean and everything was fine... But the experience was startling. A white boat in the ocean isn't like a murky black and white photo or sonogram or whatever, where the objects are indistinct. The objects were clear -- just not to me at first. I don't have a word to describe what this is.

 

Neither of these things happens terribly often. And while there are times that I cannot make out what is in an image (like a weird abstract photograph, or something with faded colors/distorted shapes/etc.), it's never been like this before. I wear glasses and have bad eyesight (REALLY bad eye sight).

 

I'm in my mid-twenties, and a part of me is hoping this is just me getting older. OR that it's related to be tired or something. The truth is, when I try to describe this to my doctors, or even now here in this post, it's difficult for me to find ways to explain it. My phycian didn't seem concerned over the hearing thing -- but it doesn't feel normal. Is it normal to have this kind of fluxuation at my age? And if so... is there a word for it?

 

Also, I had a head MRI done recently (my neurologist said I needed one run regular and one run with multiple sclerosis protocol to ensure my narcolepsy wasn't secondary to MS), and my brain is OK.  SUPER, even.

 

Thanks in advanced,

drago

[munky]

I don't think I've ever had an issue like that with the volume of sounds. A problem I've been having more of lately is just not being able to understand what is being said--very similar to what you've described with images. It could be the TV, the radio, or someone talking to me, but I just ... can't put the sounds they're making together into words, especially if there is any sort of distraction around--and I do mean any distraction. Doesn't have to be a noise that interferes, it could just be a person walking past, seeing something move from the corner of my eye, smelling something, or even having one of the critters jump into my lap. Sometimes, if I really concentrate, I can figure out whatever was just said, but most of the time I have to either hit the 'rewind' button on the remote or ask the person speaking to repeat themselves. It's especially frustrating because I'm used to being able to listen to something while I'm doing something entirely unrelated. In school, I'd read through my classes to stay awake--and every time a teacher tried to catch me out by asking me to repeat what they'd said or answer a question based on the lecture, I was able to do so without any problems. I used to be able to have entire conversations while reading a book, and not get the two confused! Now ... I'm lucky if I can figure out that those vague noises are actual words ...

 

I have the same problem with images. Not all the time, but sometimes. I can look at an image, and have no idea of what it is ... and then I have to think my way through it. "Oh ... that's kind of blue. And it lookes kind of wavery. Waves? Maybe that's an ocean? And that thing is relatively small. And kind of pointy. And looks like it's floating. Is that a sail? Oh, that's probably a boat. It's a boat on the ocean!" Being faceblind, I expect to have to work to figure out who a person in a picture is. I'm used to it. Anything other than a person, though, shouldn't be that difficult. And, yes, my eyesight is also very, very bad ... But it isn't that I can't see the picture, just that I can't figure out what the things in it are!

 

My guess is that it's very much related to the utter exhaustion of Narcolepsy. I mean, even if we do have drugs that make us feel more alert, that doesn't change the fact that we're sleep deprived and our brains just want to tuck themselves up in bed and take a nap. I think, at those times, my brain is doing just that.

[DeathRabbit]

I have this too. It's called agnosia. It's kind of annoying, but you learn to work around it eventually. I think a lot of times, our brains do a lot of reading between the lines that helps us out with muffled speech or abstract/blurry images, and when you're tired, the ol' noodle falls down on the job sometimes.

[Megssosleepy]

This happens to me as well, and it normally when I have over done it and am way to sleepy.  I always figured with was when I was half asleep but awake and didnt realize I had fallen asleep. Not sure if that makes sense.