ltanyaperry

Memory Loss, confusion and/or word finding

57 posts in this topic

Bad thing is that is effects all of our relationships, working, and just daily living. You forget to do things, forget things youve done so you do them twice.. I'll pay my truck payment twice and then ill forget to pay it. I have no idea what im doing anymore. The woman I was with i was so happy and then she just had enough. Everything just got screwed up over me not being able to remember what i've said and not said so it makes me untrustworthy when the truth is i am very trustworthy i just cant keep track of things.. So now a days i just kinda keep to myself so there are no mis-communicaitons but I tell ya the depression is reaching levels that I cannot handle anymore. If dealing with something as easy as narcolepsy ( i mean seriously how hard is it to just give someone the benefit of the doubt its not like i have some kind of horrible illness that is taxing on others) then how can i ever be with anyone?

Sorry she didn't get it fluffybunny5000. I think I was talking the same way you were about a year or two ago, and my friend, who has witnessed not only the full on drugged up affect of narcolepsy I get where sleep doesn't come, but the full body major cataplexy too (a rare thing for me), seriously didn't get why I didn't think anyone would want to be in a relationship with me - at that time my cataplexy was not only getting worse, but was happening at what I'd call a medium level for days at a time with a day or two in between that was fine, but was filled with narcolepsy.

Now that I have most of it worked out, with a scattering of bad days here and there, I'm looking back and thinking, if someone can't handle the ups and downs as something as innocent as narcolepsy, then there's something else going on there too. I say this, because everyone has some sort of issue, physical, mental and/or emotional. I understand she might have gotten frustrated, but you two could have figured something out by getting a chalk board or something. I doesn't sound like she took the time to truly try and understand and learn how to support you, as she would have done with any issue.

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My mind has changed too. I had a photographic(?) auditory memory - I remembered anything and everything I heard, so if I talked about what I was studying I got, on average, a 98% in my classes. Then everything went to hell, I was able to help other students understand the subjects, but even talking about it didn't help me remember what I needed during an exam. My marks fell down to a C+ average. Telling a counselor "something is wrong!" didn't help. He gave me an I had an IQ test, which resulted in him saying I should be getting the grades I was getting, but all through the test, I couldn't answer half the questions, many of which I knew I knew the answers to, but in that moment of frustration, I had to say "I don't know". That was 1993. It wasn't until 1998 that I began falling asleep at work in the most severe way, and my doctor didn't hesitate in getting me an appointment with a sleep neurologist.

On a bad day I'll have a dreamy, vague recollection of knowing something, I'll just have no idea what it was. It feels like the knowledge is pushing through a 6 foot thick rubber barrier. I can feel it coming, I know it's there, but it never get's through. On a good day, as I mentioned in my post above, I have those moments of clarity where I'm just absorbing new information like a sponge, my mind feels so quick and "normal", but not on the level I had 20 years ago, there's still a thin silk veil.

I do believe there is some sort of genius there. I say this because I think narcolepsy allows us to access other parts of our brains while awake.

Despite this, I'm having trouble getting things done. Things I would have done easily, that are extra in life, ex. calling to get my appliances fixed, takes so much... effort? I don't know the word, I just feel a resistance that has fear mixed in, it's a feeling of being overwhelmed easily by the extras. Most days, I'm only able to focus on the primary parts of life.These extras... somewhere in my mind I know it will only take a moment, but for some things, it has taken me years to not do. It's not the same as procrastination. It's about what my brain can handle. And it all plays into the confusion and memory thing - it's so easy to forget.

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Dementia?

I had it so bad I could not remember how to take a shower or get dressed.

IT DISAPPEARED AFTER TWO WEEKS ON A GLUTEN FREE DIET.

AND I HAVE NOT HAD ANY NARCOLEPSY SYMPTOMS SINCE.

It has been almost five years.

And I now have dozens of reports of similar remissions from narcoleptics.

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Dementia?

I had it so bad I could not remember how to take a shower or get dressed.

IT DISAPPEARED AFTER TWO WEEKS ON A GLUTEN FREE DIET.

AND I HAVE NOT HAD ANY NARCOLEPSY SYMPTOMS SINCE.

It has been almost five years.

And I now have dozens of reports of similar remissions from narcoleptics.

Heidi,

I have been finding this to be helpful for me as well. I usually eat the Paleo diet, gluten free by design. If I cheat and have anything with gluten, I need to sleep. Otherwise, between gluten free eating and taking my meds, I've been doing extremely well.

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I am just glad that I am not the only one who has these memory issues. I have to assume it is a common thing for us Narco's to have this problem along with the high doses of medication. There are some days I cant remember anything that I did an hour ago or even the day before.

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This really affects me on the phone... I hate talking on the phone now because I don't have anything to concentrate on and will "zone out" I think even nap! If I have the TV, computer or anything on I find myself forgetting I am ON the PHONE! blink.gif It is so so so embarrassing blush.gif

I have taken to telling people to text me not to call me, because I dont zone out reading a text and I still have a photographic memory so I at least remember something when it is in a text...

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I think this is called aphasia. It is common in brain injury (which I have as well). I never thought that it could be part of narcolepsy I always just thought it was my brain injury. I've gotten really good at talking "around" the word I want. Instead of trying to think of the word I just try describing it then it usually comes to me.

Some medications can also cause this, I was on Topamax for awhile and I forgot EVERYTHING.

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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.

 

Your experience pretty much encapsulates a more pronounced version of what I'm going through. The main positive I've taken away from the 'fall from grace' is that it has made me a much more humbler, grounded and understanding person.

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