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#1 exanimo

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Posted 14 June 2013 - 06:34 AM

So I know a lot of people have mentioned cognitive impairments and memory problems due to N. 

 

Basically, I am wondering about those who might have noticed a severe decline at some point in time.I theorize that it would coincide with onset of symptoms, or at least a period of time after onset of symptoms.

 

I'm wondering because I know I've had N since childhood - I remember my first experience with HH at the age of 7. But I never really thought that my symptoms began till much later, as it wasn't until middle school that falling asleep became an issue at school. I do remember my 2nd grade teacher mentioning that I sometimes 'spaced out' though.

 

I wonder if the reason I 'don't remember' has anything to do with the fact that my onset of symptoms was much earlier (age 7 or before) than I had originally thought. I didn't even connect my HH incident until after my diagnosis. 

 

So does anyone notice a significant decline in memory at some point in time that connects to your N? Would you mind expanding on this?

 

As for me, I've always had a crappy a memory. Okay, well maybe not always. My parents used to say I had a memory like an elephant (meaning good!) until I was about 7 (shocker). 

 

I am trying to figure out whether or not my N may have been trigger/caused by a head trauma that I experienced at the age of 7. I lost consciousness for some amount of time, and it was within a year that I experienced my first HH. 

 

But I have since then, had a bad memory. I'm lucky if I remember 10 people's names from my class in middle school. High school is even worse, since I was not very social nor did I pay much attention to anything but making it to class and not falling asleep. It's continued this way; I will see people and they will say hi to me and go on about something, like they KNOW me. But I don't have any recollection of knowing THEM. It's quite embarassing. What's worse is when I see someoone I recognize, but have no idea what their name is nor how I know them. But I KNOW that I know them. Messed up! 

 

And word finding is horrible. I'm constantly trying to find the word I am looking for. Sometimes I can find it, most of the time I give up because it just never comes. And It's not like when you're looking for something, only to have it show up days later when you no longer need it. I'll totally forget about the whole thing. Not to mention conversations or movies people swear we've had/seen, and I simply have no idea what they are talking about. *sigh*



#2 DeathRabbit

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Posted 14 June 2013 - 09:50 AM

I noticed a decline following high school. But it was manageable until more recently (past few years) . I think part of the thing was that in college I could just take a nap between classes and basically sleep whenever. Or I could cut class if I was really tired. So I think I was self-medicating without knowing it. I knew something was wrong and went to the doc, but they actually blamed my schedule and of course the usual lazy doctor thing of you're fat/don't exercise/depressed. Well I can *BEEP*ing run a 5k in 27 minutes now you asshole doctors! And I feel worse than ever! But in short, I know that feel. I hate being dumb.



#3 Hank

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Posted 14 June 2013 - 10:19 AM

I noticed a decline following high school. But it was manageable until more recently (past few years) . I think part of the thing was that in college I could just take a nap between classes and basically sleep whenever. Or I could cut class if I was really tired. So I think I was self-medicating without knowing it. I knew something was wrong and went to the doc, but they actually blamed my schedule and of course the usual lazy doctor thing of you're fat/don't exercise/depressed. Well I can *BEEP*ing run a 5k in 27 minutes now you asshole doctors! And I feel worse than ever! But in short, I know that feel. I hate being dumb.


Preach it. You have a way of saying what I have lived with.

The neurologist who misdiagnosed me with PLMD just minimized my concerns. When I kept telling him I could not concentrate during the day, he told me to take more of the "wrong" medication at night, which sedated me more during the day. When I still said I could not concentrate, he told me to get more exercise. Eventually, I did a triathlon and still couldn't concentrate.

Then my sleep specialist was reluctant to diagnose me with Narcolepsy because I was not obese, had steady employment and never took naps.

3 different doctors diagnosed me with side effect- essentially the side effect were being viewed/ treated like a separate illness. So, more medication and still no better.

If I were not such a stubborn, persistent pain in the &%$, I would have 4 diagnoses and 12 medication, no relief, no job, marriage or family. Then I would be more depressed and require more medication.

I am definitely benefiting from the "less is more" approach.

#4 Bedtime Barbie

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Posted 14 June 2013 - 11:18 AM

My memory issues were actually one of my major symptoms that caused me to actually find out what was wrong. Like you, I had symptoms at a very early age, seemingly since I was born. I had a very good memory and I still have memories from as far back as two years old. I did have a very hard time concentrating and I would frequently leave fun events to go to sleep. When I was in my junior year of high school I started actually falling asleep in class, which made me feel horrible; I lost parts of my day, I had no idea what had been taught in class, and I had really strange feelings of being in different times and places. In my senior year it got to the point that I really couldn't function anymore and I had a very hard time remembering the things I was supposed to do and the things I needed to know for school. I got through the diagnosis of "normal lazy teenage behavior" both from my neurologist and my family doctor to get my real diagnosis from a sleep specialist. Since I've gotten out of school I've gotten much better, but I do feel like my memory has continued to get worse.

 

So, to answer your question in short, yes, my major onset of symptoms and my memory problems came at the same time, however during the time I had more minor symptoms, I didn't have a memory problem. I've had lots of head trauma throughout my life, so that could be a factor but I've never lost consciousness. I'm quite certain all the stress I was going through in high school is what made the symptoms so severe at that time.



#5 DeathRabbit

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Posted 14 June 2013 - 11:28 AM

Preach it. You have a way of saying what I have lived with.
 

 

Well, I don't know whether I'm coming or going half the time these days, but thanks just the same, haha



#6 Ferret

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Posted 14 June 2013 - 10:01 PM

I'm not experiencing any memory loss at all. I wish I had a "delete" button 'cuz I remember stuff that isn't even worth remembering. I worry that one day my personal "harddrive" will be full and then I'll really be in trouble.
On the flip side, I love learning new things and research all kinds of stuff...that's why my friends call me 'ferret'. Since I turned 45, I have learned to speak Spanish quite comfortably.
It's a muscle and needs exercise...ya gotta push through to the burn. Having said that, I did sit at home like a vegetable for 18 months and the biggest effort I could manage was to have a shower.
Don't give up, there's life after diagnosis, bad docs and bad meds. Keep the faith!

#7 DeathRabbit

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Posted 14 June 2013 - 10:09 PM

I am pretty jealous, I must admit, haha. I don't remember entire months very well.



#8 Ferret

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Posted 14 June 2013 - 10:25 PM

Don't be jealous. That wasn't my intention. I'm trying to say that I've been in a pretty dark place too and have come out the other side. I'm wishing the same for all of you who are struggling to live with this. You will find what works for you...with or without the help of Doctors.
I can tell you that I took my husband with me to "confirm" observation of Cataplexy. The Doctor was still doubtful...what a dip! Then the sleep studies and having a tech scream at me "Stop moving, you're moving but I can't see what you're moving"...I was sound asleep and spiralling into an out of body experience headed for the stars. She upset me so badly that, after waking me up so abruptly, I had multiple cataplectic seizures for five minutes with my head snapping back.
I'm just too darn stubborn to give in.

#9 Hank

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Posted 14 June 2013 - 11:11 PM

Well, I don't know whether I'm coming or going half the time these days, but thanks just the same, haha


Even a broken clock is right twice a day-

(one of my mottos)

#10 exanimo

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Posted 15 June 2013 - 02:14 PM

I'm not experiencing any memory loss at all. I wish I had a "delete" button 'cuz I remember stuff that isn't even worth remembering. I worry that one day my personal "harddrive" will be full and then I'll really be in trouble.On the flip side, I love learning new things and research all kinds of stuff...that's why my friends call me 'ferret'. Since I turned 45, I have learned to speak Spanish quite comfortably.It's a muscle and needs exercise...ya gotta push through to the burn. Having said that, I did sit at home like a vegetable for 18 months and the biggest effort I could manage was to have a shower.Don't give up, there's life after diagnosis, bad docs and bad meds. Keep the faith!


Well I'm glad you do not have memory loss! Do you ever experience it with brain fog? This is the biggest for me because when I am tired and the fog comes over me then I usually have a really hard time remembering what I was doing during the brain fog later.

I do a lot of learning and research on my own as well, and I do believe I remember a good portion of it. But it's the everyday things and encounters that I lose. Maybe I'm just too much in my head all of the time? Perhaps I should step out of my routine more?

I actually think that is a good suggestion for everyone - we become so used to our routines that our brain considers a lot of our day to day experiences to be irrelevent and thus does not store them as long term memory? Most of what I do remember are experiences from trips or nights out - things that I don't do all the time.

#11 Ferret

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Posted 17 June 2013 - 01:34 PM

I'm guessing that everyone's different. We all have our strengths and weaknesses. I have definitely experienced automatic behaviour with boring tasks. I can't stand the brain fog and have pretty much kept it at bay with a strictly regulated sleep/nap schedule. I don't drink alcohol for the same reason...not worth the fog and definitely not worth the few days it takes to recover from just a couple of drinks. My hubby is 73 and he doesn't have Narcolepsy. BUT, he has improved his cognition, memory and spelling ability by learning to use an iPad3. He's becoming an activist and reading all kinds of articles and sending out e-mails in support of causes he believes in. He's not going "quietly into that good night."
Boring is bad...passionate is good...IMHO.

#12 DeathRabbit

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Posted 17 June 2013 - 01:52 PM

Alcohol helps my brain fog actually. Dunno why, but if I have one low ABV beer or a shot of liquor, it clears my fog right up. I think my fog is somehow tied to my headaches though.I've almost decided I have low grade cluster headaches. I don't have the level of excruciating pain most of the sufferers of those describe. But they seem to recurr with the required frequency and also follow a schedule at times. And the pain is in the correct spot. Usually starts as a tingling pain behind one eye, then spreads. The funny thing is, when I actually get irresponsible and stay up too late, even though I'm sleepier and feel more malaise the next day, my headaches don't come and there's little brain fog. That's kinda weird to me, but I think it's because I'm essentially disrupting the cycle they operate on.



#13 Ferret

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Posted 17 June 2013 - 05:14 PM

Just a thought. Try keeping a food and beverage diary...include meds as well. I'm asking you to do this because I think something you are ingesting is a trigger for your headaches.
Before Narcolepsy,I once had a headache for three years that was worse in the morning. It turned out to be a sensitivity to MSG in Uncle Ben's dinner rices. Loved all the varieties available and made a different one every night for dinner. 12 hours later equalled major pain in the head, ache at the back of the head and stiffness down the spine to the shoulder blades.
Constipation can also cause headaches 'cuz you're not getting rid of the toxins in your colon.
Meds can also contain "fillers" that you can be sensitive too.

#14 drago

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Posted 18 June 2013 - 12:28 AM

First, memory is connected to sleep. Specifically, REM stage sleep. So it makes sense that narcoleptics might have issues with it.

Second, issues with memory can be a smokescreen for other neurological issues, such as prosopagnosia (inability to recognize faces... which is a poor description. You can see a face and all the different parts of the face, but the emotional/recognition part of your brain is limited.)

Third, memory as a neurological phenomenon can be aided by tactic. This sounds silly, but it's true. For example, I write everything down so I won't forget it. I don't write something down to remind myself later by looking at the note; the act of writing the note down makes me remember it. I could throw the note in the trash, but I will still remember the note, simply because I wrote it down.

 

Many of our outlandish, crazy dreams occur in REM-stage sleep. This is the stage where something might chase you through the woods. REM-stage sleep is a highly visual experience; and humans are highly visual creatures. Many researchers have done work that indicate REM-stage sleep allows memory shifts from short-term to long-term, along with their emotional associations, to be processed by the brain. Narcoleptics usually have problems with REM-stage sleep, so the visual end of the spectrum of memory can be frayed for us.

I had symptoms from an early age, too, though I didn't develop EDS or sleep attacks till my early twenties. I had particularly bad sleep paralysis at a young age. When I was first diagnosed with narcolepsy, I discovered that I had meticulously developed a number of tactics that circumvent issues with concentration or memory, like the writing thing. Tactile (kinetic) sensation, for me, amps up my memory, long term and short term. Visual events (such as people's physical characteristics, i.e. their height, weight) tend to be pretty fuzzy for me in memory. When I know a person it's like my brain abstracts them from all the visual memories I have of them -- I know them, their voice, their character, but if you asked me to draw them or look at new photos of them, I would score poorly to say the least.

 

One of the tactics I developed (unknowingly) was my reading. I mark up the page, touch the page, highlight or underline or take notes when I read. When I don't, I find I am less engaged and I remember less, if anything. But when I read with a pencil or highlighter and mark the page (or even if I don't mark the page, I just get ready to mark it).

So visual isn't a good memory-maker for me. Kinetic/writing/touch is a great one for me. Smell works OK; sounds works OK too.

But you might have a different tactic. Maybe sound (like background music) will increase your memory recall better than writing things down.

Memory tactics!

Good luck,
drago



#15 Ferret

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Posted 18 June 2013 - 06:42 AM

http://eveliens.hubp...ven-Deadly-Dyes

Rabbit...that grape drink you like?...contains red dye and blue dye.

#16 cmanbrazil

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Posted 24 June 2013 - 05:34 PM

I couldn't remember I joined this site months ago :( .  Now that I have found it again, I am happy.  Truly. I can't remember much, especially if it doesn't occur everyday.  I am made fun of, and it causes me problems daily at work.  I live with my google calendar and constantly check my emails over and over again.  This works until I forget to do it.  I am scared it is Alzheimer's.  However, I have been this way for too many decades for it to be that - although recently it is worse.

 

I do respect that we all deal with these issues at different levels and what works for some may not work for others. I will try things I read on here when I have the energy to do so. I think everything is worth a shot right about now.



#17 Ferret

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Posted 24 June 2013 - 09:53 PM

Don't ever give up...just do what you can when you can. I lost my mum to Alzheimer's nearly three years ago so you better believe it's very much in my thoughts.

I have two friends who have been taking Xanax for stress for about six months...they are not PWN...one is 65 and the other is 69. It's unbelievable how much they are starting to forget and I worry about them. One is mellow as can be and the other wants to fight with anyone and everyone. Neither was like this before Xanax but they were both intelligent and articulate. Makes you wonder about pills and their different effects on different people. Scares the hell out of me.



#18 Ferret

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Posted 25 June 2013 - 09:59 AM

Further on the subject of memory loss and the inability to concentrate.

This is a Catch 22 for many Narcoleptics who are on antidepressants...damned if you do and damned if you don't. I can tell you that Tofranil, the antidepressant that I WAS taking (in 1986) to control Cataplexy darn near did me in. It took me 18 months to get over the effects. As always, it is your choice...I am only a messenger.

http://www.cchrint.o...ts-can-persist/

 

This article is longer...read it when you are feeling relatively refreshed.

http://www.oprah.com...pful-or-Harmful

 

Please continue to be aware of chemical additives in food and food dyes that are interfering with your restful sleep.



#19 sk8aplexy

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Posted 25 June 2013 - 02:01 PM

I can't say I've had any severe memory loss, I would say perhaps definitely some decline over the years, although generally I am pretty on top of things.

Yet, I should mention I do not have a lot going on, nor have for years now; that is to say, I have a pretty open book schedule and don't do a lot of, or hardly any at all, social engaging.

 

In my own opinion/view, people are running around constantly and endlessly more than (perhaps) ever, at least more than I recall being common say 20 years ago; I'd guess that the technology combined with the years now of economic hysteria is behind such, in one or two part/s, not to mention the following (which is not to 'jab' at anyone. 2nd'ing -> the "messenger.")...: http://www.sfgate.co...ion-4034392.php

 

A few years back I began keeping a sort of everyday interactions/task/activities (very basic) journal or calendar.

It has helped me in ways keep a grasp on what I've done when, as well as with, perhaps what/when I may have something upcoming. 

There are definite times here and there, unfortunately, were I do feel as though the non-restorative sleep is for sure taking a toll on my mental strength and stability.



#20 Hank

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Posted 25 June 2013 - 03:35 PM

Further on the subject of memory loss and the inability to concentrate.
This is a Catch 22 for many Narcoleptics who are on antidepressants...damned if you do and damned if you don't. I can tell you that Tofranil, the antidepressant that I WAS taking (in 1986) to control Cataplexy darn near did me in. It took me 18 months to get over the effects. As always, it is your choice...I am only a messenger.
http://www.cchrint.o...ts-can-persist/

This article is longer...read it when you are feeling relatively refreshed.
http://www.oprah.com...pful-or-Harmful

Please continue to be aware of chemical additives in food and food dyes that are interfering with your restful sleep.

http://en.wikipedia....on_Human_Rights

While I agree with you about being careful with certain medications, I am equally concerned about the sources of information. The above link states that this Citizens Commission is a front group for the church of Scientology. I usually stick with medical journal articles.

Tofranil decreases delta wave sleep and it is always important for PWN to make sure medications don't interfere with sleep architecture. Your friends on Xanax should be very careful- it is a benzodiazapine. Benzos are horrible to discontinue. They are especially a problem in older folks since they can lead to falls. I was on a benzo for a misdiagnosis of Periodic Limb Movement- it has taken me some time to recover from discontinuation. I would recommend avoiding these medications like the plague.