55 replies to this topic

[browneyes091686]

I've noticed this a lot just in the last few months. I got diagnosed when I was 17. I'm now 21. I have always had a pretty good memory. But ever since I got diagnosed I can't remember anything. I have a few friends who have been really good friends since kindergarten and reminiscing with them isn't very fun cuz I can hardly remember anything they are talking about.

I also have a problem, sometimes, with holding conversations. I find myself saying "uhh" and "umm" a lot. I haven't seen anybody else mention this but I have a hard time forming certain letters and numbers when I'm writing. And I have good days and bad days with that one.

And probably the most bizarre one is when my meds have worn off and I'm sleepy and holding a convo and all of a sudden I start falling asleep and don't realize it. Well, I start to dream and just start talking about my dream to the person I was talking to. And then I'll wake up a couple minutes later and they are staring at me like I'm crazy. I've done it with my boyfriend before but it was just incoherent talking. And one time with my best friend when I apparently started talking about aliens and stuff! lol

[Lais02]

I am a very random person now. I will start a subject and then get side tracked and then like an hour later pick up where I left off. sometimes I will be all like "blah blah blah...." DEAD STARE INTO NOWHERE....... then back to talking again. I always have trouble with words. It seems my brain is faster than my mouth and my mouth loses track of what the brain wants to happen. It's complicated. I hate it when people ask me to repeat myself because usually I am not 100% sure of what I just said out loud, even though the concept of the conversation is very clear in my head. (which makes fighting with the boyfriend ever so pleasant... )

My sleep doctor told me one of the most commonly misdiagnosed things for Narcoleptics is ADD or ADHD. This reminds of it and yes I have been diagnosed with ADD multiple times. I don't think I have it or ever had it though... at least not since I found out I have N.

Anyways this is something I can absolutely relate to. This must be why doctors think we have ADD... it does sound similar

[Heidi L]

Hi,

My cognitive problems got so bad I couldn't do anything.

Come read what I did: http://www.lindborglabs.com/table.html

[sleepless sleeper]

Join the club. I have no idea what my IQ "was", but both my parents had genius IQ's. My mother's was 181+. I used to have almost perfect photograpic memory. I could ace tests without much preparation. Math was simple once I could learn a formula, which was not difficult for me to understand (not just memory acuity, folks). Sciences, excelled. Spelling, didn't use to be a problem. I could remember conversations that I had as a kid, from movies verbatum, I even remembered not just taking my first steps but what I was thinking when I took my first step. I remember laying in my crib and thinking about things outside my window. I'm talking about making thoughts when I was months old. Now, I can't remember to keep my cat's litterbox clean. I'm lucky when I remember my phone number. I'm proud of myself when I remember to look at my "to do" list. I NEVER had to have a to do list because I could remember everything. Every number. Every word. Never a problem. I never understood how people could get confused with school work. I always thought people lied when they said they would forget something. I never thought it was possible to forget anything. Stress does make my memory problems worse. I have worried that I was getting early symptoms of Alzheimer's because I could not remmeber a word or, worse, use a word incorrectly. I now forget faces and names. From MRI's, though, I've been told that there is nothing visibly wrong with my brain, and these problems have gotten worse since my N has gotten worse.

My sense of judgement is at its worst when I'm really sleepy also. I'll say anything thinking that it's A-okay and later realize that I've said something inappropriate.

And I feel for you as a trainer. I've always had problems with getting really sleepy, even as a small child, but when I was younger I was able to push myself. I trained as a kickboxer and was undefeated in a small community of kickboxers. I really cannot believe that I was the person that I "used" to be, but I have learned over the past few years that it's great to know that at one time I could do amazing things. I now focus on the fact that I was also a very selfish person and now chose to learn from these experiences to be more understanding and empathetic towards others. It was and somethimees still is difficult to let go of what used to be and now except what I have become. Many times I totally embarrass myself around others and now don't want people around me because most people just don't even want to understand. It's terrible forgetting what I'm talking about in mid sentence. I make a lot of pauses also, usually trying to find a word for what I'm trying to convey. This is much worse when I'm at my sleepiest, but then I'm at my sleepiest half the day.

The randomness, the stares, not being sure of what I've verbalized, ditto. Sidetracked? I'm the world's worst. I usually don't get back to what I started, even if I do remember! I have an incredibly patient husband, and I'm thankful for him everyday. I hope that you have someone similar in your life.

No wonder I have problems staying focused! I really do wish you the best of luck. I hope that I stayed on topic.

[sleepyhead84]

Hi all!
Oy I can relate completely with most of you. I have a roommate who is also my best friend and from time to time we have to discuss apartment related stuff like who's gonna buy the paper towels, etc. Well, constantly we get into fights because although we had a 30 minute conversation about paper towels and the like a week ago, I don't remember it and ask her to refresh my memory. Should I buy them or you? Who's turn is it for garbage and to clean the ferret cage? She gets mad because she feels that I don't trust her and need assurance but honestly I don't remember ever discussing it! It happens all the time. But like most of you, I can remember my early years very vividly. Now I use a to-do list and it is my lifesaver, otherwise I'd wouldn't get anything done.
Erin

[Chuck Z.]

I are a jeeneus two... last testing was 185 I.Q., but, pfft, I feel so stupid sometimes from the malaise that washes over me for no particular reason.

Proud, but embarrassed, member of Mensa -- But I am coming to grips with feeling like an impulsive, drunken idiot most of my waking hours. But, at least I have an hour or two a day when i can feel "smert" (as my kids like to put it)

[Marcianna]

I love that we are all geniuses and such but I want to remind you guys that the whole "IQ" system is seriously flawed. Anthropologist actually despise the entire concept at all. The questions and the scoring on those types of test are specifically geared towards the western culture and society. Say for example, two people take this test one is from the mountains of Peru and the other is from Nebraska. They are equally able to gain and retain knowledge and have done so over many years, yet because of the structure of these test, Nebraska dude is going to look brilliant and Peru guy is going to look like a total idiot.
You can even seperate this by class even, both people are from New York City, one was raised in a higher class home, the other raised inthe streets barely getting by.... Again, both are the same, yet "IQ" would say the person in higher society would be smarter, than the person who has taught himself to find food, avoid danger and make shelter for himself. These things are clearly more important than going and getting a library card trying to keep up with others who were more fortunate.
Do you see what I am getting at?
Im not saying that you guys are not as smart as you think you are, because the testing was made with you in mind, it works perfectly.
I'm only bring this up because IQ test are one of my many many pet peeves and I wanted to share this information with you. It's just something to think about you know? How screwed up our world is in yet another way!!! lol.....

I'm needlessly rambling again... my apologies.

[Chuck Z.]

Wow, you must be smerter than everyone if you can ramble without using your mind at all! J/K

Very good points -- I was hoping the sarcasm was shining through my earlier reply, because I too actually don't put much merit into it. Geez, I went to one gathering of brainiacs many many years ago -- most are a strange breed, and no, most, I don't think could balance a checkbook, but they could talk your ear off about metaphysics, rotfl.

But, back to point -- I have seen a trend with "our group": Artistic, Intelligent, Free Minded. One of the "perks" of the condition I guess. Having rem bleed into the wakeful state allows us to think outside the box and therefore appear to be smarter, more creative and more open to new ideas and concepts.

[Kimberly]

I stayed in Milwaukee on Sunday night and went out to dinner with a few folks from the conference.

One of my dinner companions mentioned the exact same thing -- he said that everyone he interacted with this weekend seemed to be very intelligent.

I think that we have had to struggle and adapt our lives to meet society's expectations, so we are uncannily creative. Even if not "artistically" creative with painting or music, we are able to devise innovative ways to survive and get things done -- that's quite an accomplishment, and certainly takes brains.

[Marcianna]

Wow, you must be smerter than everyone if you can ramble without using your mind at all! J/K

I actuallly rarely use it... I think it is there to keep my skull from caving in...

Very good points -- I was hoping the sarcasm was shining through my earlier reply, because I too actually don't put much merit into it. Geez, I went to one gathering of brainiacs many many years ago -- most are a strange breed, and no, most, I don't think could balance a checkbook, but they could talk your ear off about metaphysics, rotfl.

OMG that is SOOOOOO me! but still I'm not a brainiac? Hmmm maybe I am a closet brainiac.... stiil very funny!
:: joins Chuck on the floor::

[Lais02]

I wanted to say I noticed much of the same this weekend. Everyone I met was very intelligent... even if some might have been in the closet about it... they didn't fool me! I agree with you all... we seemed to be intelligent and creative. Thinking outside the box is such a wonderful thing to be able to do!!! I guess I did pick the right major... engineering... intelligent and creative... PERFECT! Although there is still the challenge of graduating lol!

[sleepless sleeper]

Well, I really am the door knob of the lot. My point was that it is all gone now. Most folks treat me like a babbling fool. I somehow lose track of words somewhere on the trail from memory storage to mouth. The doozy is forgetting everything. The past couple of weeks were very hard for me emotionally, and maybe I expressed more than I should have. Alas, another flaw of mine is the loss of judgement when it comes to "sharing." I am constantly reminded that others really don't care, which is why I joined NN. Maybe I expected a bit more thoughtfulness here; I've really needed some understanding. I can't say that I appreciate the sarcasm.

[Marcianna]

Well, I really am the door knob of the lot. My point was that it is all gone now. Most folks treat me like a babbling fool. I somehow lose track of words somewhere on the trail from memory storage to mouth. The doozy is forgetting everything. The past couple of weeks were very hard for me emotionally, and maybe I expressed more than I should have. Alas, another flaw of mine is the loss of judgement when it comes to "sharing." I am constantly reminded that others really don't care, which is why I joined NN. Maybe I expected a bit more thoughtfulness here; I've really needed some understanding. I can't say that I appreciate the sarcasm.

I can say for myself for sure that I had no malicious intent towards you. None at all. I and I seriously doubt anyone else did either. I was just just trying to express the fact that I feel IQ's are not how we should be judging people, therefore I don't feel what your IQ was before compared to what it is now, Should be anykind of judge of how smart you actually are. I'm not sure how you felt that was sarcastic, but I apologize if I came off like that. I have never sense that you were a babbling idiot! And I think it is incredibly insensitive of your parents to act like that. Perhaps they are in need of more education on how our brains work.
I completely understand how you feel with your symptoms developing how they are. It is incredibly frustrating. Really. Some times I feel so defeated when I run into a friend who was very close to me in HS and I just cant seem to remember their name. I also am incredibly frustrated that truly awesome people I met over the weekend are mere faces to me because names just dont stick anymore you know?

Please dont be upset with us, I'm not quite sure how we came off as insensitive, but apparently we did. And I sincerely apologize for that. don't be frustrated... really we are all in the same boat with this problem with our memories, and the way our mind work. Some of us just handle it diffrent than others. Myself included. I'm sorry that you are having such a hard time with it. I wish I had some kind of advice to give you, but I don't really understand the whole thing either. we are listening to you... we just don't know the answers that we are all looking for.

There is definately sympathy and compassion for you here.
You are very important to us as are all of our members..... our family.... here online.

~Marcia

[Kimberly]

Well, I really am the door knob of the lot. My point was that it is all gone now. Most folks treat me like a babbling fool. I somehow lose track of words somewhere on the trail from memory storage to mouth. The doozy is forgetting everything. The past couple of weeks were very hard for me emotionally, and maybe I expressed more than I should have. Alas, another flaw of mine is the loss of judgement when it comes to "sharing." I am constantly reminded that others really don't care, which is why I joined NN. Maybe I expected a bit more thoughtfulness here; I've really needed some understanding. I can't say that I appreciate the sarcasm.

Sleepless,

There's no such thing as expressing too much. This online community is here for you to share with your fellow pwn's -- and you have done so candidly, honestly, and genuinely. Don't sell yourself short.. your points have been made in your posts, and you've brought up subjects that cause others (me included) to think further.

I think somewhere in this thread the focus was lost. You were talking about how frustrated you feel about a cognitive decline, and somehow the comments morphed into talking about N and intelligence. The two aren't mutually exclusive -- you're definitely NOT a "doorknob" to us here -- and it seems as though many feel that when faced with obvious cognitive challenges, pwn's are able to come up with creative solutions. The way you've expressed yourself here in the forums is a real indicator that you are one of those creative thinkers, even if you are feeling challenged in some of your day-to-day interactions.

Please get us back on the right track here. What do you need from this community in the way of support about memory loss, confusion, and/or word finding? We are here for you.

[Chuck Z.]

And please don't take my sarcasm as insensitivity to your feelings either, Sleepless! My replies were my way of saying "I.Q. doens't mean anything; it's just a number". So, pfft, everyone is smart in their own way - some in pragmatic ways, some in creative ways.

I too feel EXTREMELY frustrated that yes, even though I have an extremely high I.Q., I DO feel like an idiot half the time because my memory fails me so often these days. I often wonder to myself if in fact I may not have narcolepsy at all, but rather, alzheimer's because of the memory problems, the impulse control problems and the fact that even the other day, for a brief moment, I did not even recognize my own wife!!!

I feel like my brain is being ripped apart. I have moments of lucidity where I wonder if anything is "real" anymore. But I draw myself back in the realization that I am what I am - I cannot change that - what I can change is how I deal with it. I have always been a fighter - I have always found ways to adapt - and I *will* find ways around my memory problesms: writing things down more, writing schedules, educating those around me about my condition; asking for patience and understanding, pacing myself, and so on...

Trust me - everyone here understands your original post. Take each of our replies with a grain a salt. We all have different ways of coping. Take only what you find of value to you, but please do not reject all because of a post or two!!!

[Marcianna]

I am going to add a sister Topic for this thread. The goal will be so that here is where we vent our frustrations, and do our best to console each other, but the other one is for suggestions and ideas we may have for overcoming our problems with memory. So please keep an eye out for it I hope this will be a help for all of us....

~Marcia

[Lais02]

Again I don't think any of us meant to be rude. We all are struggling with this problem. I personally don't take it as a joke. I was academically dismissed from school and spent the entire summer trying to get them to let me back in... only to feel like its going to happen again.

I think people just try to joke to deal with their frustrations. It can be a coping mechanism for many people... myself included.

I DO understand how hard this is. I went from an A student ready to graduate in mechanical engineering to being kicked out of school. I TOOK INTRO TO ART HISTORY 4 TIMES NOW!!! I need to be able to laugh about that, or I would have no way to deal with it.

Keep posting and try to understand we are all very sorry if we offended you. It was not at all the intention.

I'm so glad to have met you all... sorry I just have to keep saying that, because I can't even begin to explain just how glad I am to have met you guys!

[sleepless sleeper]

Thank you all so very much, and please forgive me for expecting the worst. I've lost almost every friend in past few years because of my sleepiness, and I think that I've just grown cynical. Everyone of you are amazing.

Marcianna, I didn't mean to say anything negative about my parents. I'm one of the few people that I know that actually thinks they had a good childhood. Warped, but good. I've made a few posts that might reflect badly on my daddy (I still say daddy), and yes, there were times that weren't great, but I am so very thankful for them being who they were and that they were mine. They've both passed away - brain tumors. I really wanted to address this because they really did mean so much to me, and I absolutely didn't want to convey anything otherwise. My father was so incredibly eccentric that I may get off on a tangent about something that he did or said, which taken out of context (easy to do w/ me) might sound harsh or bizarre. My mother was truly one of the best people that i"ve ever met.

Anyway, thanks to all.

[Mike M]

My father was so incredibly eccentric

As a dad who believes that he is fairly quirky (even without the narcolepsy factored in), I don't think higher praise could be offered. My dad certainly is bizarre in his own ways, and I know that I am wonderfully eccentric. I can't help but think that your father smiled in heaven the moment that you typed this. I also love that you are able to see all of the good things that your parents did and are also able to recognize the frustrating things too. The older I get the more I realize that I love my parents' "faults" as much (if not more) than their strengths.

[Marcianna]

Thank you all so very much, and please forgive me for expecting the worst. I've lost almost every friend in past few years because of my sleepiness, and I think that I've just grown cynical. Everyone of you are amazing.

Marcianna, I didn't mean to say anything negative about my parents. I'm one of the few people that I know that actually thinks they had a good childhood. Warped, but good. I've made a few posts that might reflect badly on my daddy (I still say daddy), and yes, there were times that weren't great, but I am so very thankful for them being who they were and that they were mine. They've both passed away - brain tumors. I really wanted to address this because they really did mean so much to me, and I absolutely didn't want to convey anything otherwise. My father was so incredibly eccentric that I may get off on a tangent about something that he did or said, which taken out of context (easy to do w/ me) might sound harsh or bizarre. My mother was truly one of the best people that i"ve ever met.

Anyway, thanks to all.

I think Narcoleptics should some how trade mark the idea of Cynical. As we have all gone through that stage... some of us longer than others. I think that is how we develop such sarcasm...

I am very glad to hear you were lucky enough to have a good childhood. The thing is if you don't know whats wrong, then people dont know how to deal with us... I'm sure they did the best they could. Most parents do.

As far as losing friends, I can understand that too, but I am blessed enough to have made new ones through this site. And they mean more to me than anything.