Memory Strategies

[natalie]

LOL...my post have all been really long too..I guess we have a lot to say! LOL!

Thank you for sharing your information. I am on Topamax as well.

When I was about 9, I had an incident where I passed out on the merry-go-round and busted my four front teeth out. Then later that same year, I passed out again and fell down a very large flight of steep concrete steps. I had a very bad concussion from the fall. Both times, the doctor said that I passed out from unknown causes. This was back in 1983.

Nothing was ever done for me, but throughout school all of my teachers complained of me being daydreamy and inattentive in school...my grades were not very good. I just giggled my way through school because I was lost most of the time (but I thought everyone was...really!).

Then in 1997, I started having these episodes where I couldn't see. I saw a few doctors, they said that I was risk for stroke and told me to never ever take birth control pills. In 2003, I started having these numbing feelings on my face and down my arms. I would wake up and not know who I was, where I was or who my husband was. My husband would tell me that I would be making strange noises in my sleep and completely unresponsive to him...so in 2004...we went to the ER where I was diagnosed with a nighmare! Literally, they wrote that on the paper. I told the man that he insulted my intelligence and wasted my time. He scratched it out on my paper, but not on the one that went in my permanent record. So, in 2006, my episodes went from once every two years, to once every three months...to the point that I was waking for barely a minute and going right back into another seizure. I refused to go to the doctor though because I knew that they would diagnose me with anxiety or nightmares. My husband finally took me in and they put me in ICU. My EEG came back abnormal and I was diagnosed with epilepsy. My neurologist said that I have had it from birth, but that I have had partials and they have been undiagnosed.

I am not on a high enough dosage of topamax to help me though. I am only on 125 mg. From the research I have conducted...125 mg is what they recommend for the patients who have migrains...not seizures. So...I am going to try to get my doctor to up my meds. to see if I can gain some control as I still experience daily seizures at this point.

My memory is really bad; however, I think mine is due to the daily seizures more than the meds (at least right now). I will have to see if my memory problems increase as the meds increase. I have not tried Keppra. I am currently trying to find a new doctor.

[CQ:)]

That's amazing that you were never diagnosed until 2 years ago.

I think there may have been other people who had told simular stories like yours on here of how they had smaller seizures when they were younger but weren't actualy diagnosed until they were older.

I hope you'll be able to get your seizures under control soon

[RobinN]

A type of protein crucial for the growth of brain cells during development appears to be equally important for the formation of long-term memories, according to researchers at UC Irvine. The findings could lead to a better understanding of, and treatments for, cognitive decline associated with normal aging and diseases such as Alzheimer’s.

http://www.sciencedaily.com/releases...0905225522.htm

[hawke86]

Do memory strageries really work?

[epileric]

Do memory strageries really work?

isn't much of a strategy if it doesn't work lol

[hawke86]

Memory strategies don't work and they're a waste of time!!!!!!!!!!!!!!!!!!!!!!!!!!!

[natalie]

Memory strategies don't work and they're a waste of time!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ummm...I am not certain that memory strategies help people regain their memory capabilities. The memory strategies that I have been looking into are specific for school age children to help them remember information for test in school.

The strategies would help them retain the information so they could:

1) Retain short-term information to complete a test

2) Grasp a concept, such as a math function.

3) Academic skills such as spelling aids.

These are the memory strategies that I was researching for children with epilepsy.

There are other memory issues at hand when thinking of people with epilepsy. I do agree with you, Hawke86, in this area if you are talking on the larger scheme of memory. There are no tricks to regaining our memory! I have a 2 year old. Evidently, I taught my two-year old to walk, but I have absolutely no memory of the events at all. Nothing!!! I woke up one day and my child was walking. Everyone in the family told me that I taught him, but I cannot regain even a hint of the days. It makes me want to cry every time I think that I missed out on this very special time in his life. We have since bought a video camera so that I don't miss anymore important days in any of my children's lives.

There are no strategies to help me regain those memories, Hawke86! You are right!

[natalie]

Very interesting article, Robin! It will be interesting to see what develops from these findings! Thanks you for posting this information

[Mandy]

Hello! I understand about the side effects your having while taking topamax. I took it for 4 months. I lost over 20lbs and was very lethargic from it. I was in the hospital for a week and they took me off of the medicine because a neurologist-psych. test was given and i couldn't function properly. They put me on keppra and i haven't had any bad side effects from it. After a month of being off the topamax, i was given another neurologist-psych. test and it was amazing the difference in my responses to all the questions. It didn't take me years to answer!

[CQ:)]

Hello! I understand about the side effects your having while taking topamax. I took it for 4 months. I lost over 20lbs and was very lethargic from it. I was in the hospital for a week and they took me off of the medicine because a neuro-psych. test was given and i couldn't function properly. They put me on keppra and i haven't had any bad side effects from it. After a month of being off the topamax, i was given another neuro-psych. test and it was amazing the difference in my responses to all the questions. It didn't take me years to answer!

Hi Mandy

Over the 2 years that I have been on the Topamax I have lost approx 20 kg.
I was probably classed as a little bit overweight when I started taking the Topamax so losing the weight didn't hurt me.

I have always had a problem with getting tired easily especially when I've been out all day or had a busy day. After I started taking the Topamax I would get up early (the latest I would sleep in would be 9am) & after I started taking the Keppra I am usualy ready for bed by 9:30pm - 10pm. I have only been on Keppra for 2 months but I haven't had any bad side effects from it yet.

I also take Tegretol which I have been taking since I started taking my seizures again.

[brain]

Ummmm ...

Natalie!

Somehow my original post got vanished.
It was I who moved your thread over here
where you would be found and receive more
responses and I noticed that the PM notification
I left for you didn't go through either. But of
course I was having my own Server Difficulties
at that time, so it's possible that it didn't go
through and my apologies if it left you with
scratching your head! I can see that people
have responded and replied. Once again, I'm
sorry that the post here and the PM didn't
go through. But welcome to CWE!

[paradise survivor]

Is it me or do docs think 'a little memory loss' is like sensitivity to the sun or something? I actually got into a pretty heated argument with my neurologist over Topamax. It was ereasing my brain and he thinks I'm making too big a deal about it I bet if it was his memory he would think a whole lot diferent.memory is precious! I have enough trouble with the brain events that zap my memory but to give a med like that one and think it is ok to loose more memory...

[brain]

PS: It has a nickname of being known
as "Dopa-Max" or "Dopey Max"

*** POOF ***


Small fine print: Brain has never been on this med,
but had been on Keppra, and has experienced the
KepRAGE - the other nickname.

[brain]

Brain's side of the story:

1) Find Old Blue Eyes LP Album

2) Look for the Song:
THANKS FOR THE MEMORIES

3) Locate Record Player

4) Play Song


Humor aside, my memory since being born with
this has always fluctuated. My short term is bad,
but long term is well - in malfunction junction. I
can remember details, specifics, yadda, yadda, yadda,
but come date, time, et cetera - you'll receive a
blank response from me.

It would not matter if I was on meds or not.

But that is ... on a GOOD day from me.

You don't want to know about my 50/50 days or
my hideous days ... We'd like to keep you here in
CWE!

[LynnW]

Is it me or do docs think 'a little memory loss' is like sensitivity to the sun or something? I actually got into a pretty heated argument with my neuro over Topamax. It was ereasing my brain and he thinks I'm making too big a deal about it I bet if it was his memory he would think a whole lot diferent.memory is precious! I have enough trouble with the brain events that zap my memory but to give a med like that one and think it is ok to loose more memory...

Paradise, I am soooo glad you brought this up. I have been thinking about this a lot since I have started taking Trileptal in March. Before I was diagnosed and prescribed medication, I had memory issues mostly with finding a word during conversation. It was an annoyance, but I dealt with it.

Since starting the Trileptal, though, my short term memory has been fried, and my brain has slowed down considerably. I have trouble remembering why I walked into a room, or what I was going to say to someone, or where I put something. I will talk to my family, and can't come up with the words quickly enough so they loose interest and walk away before I finish a sentence. I will ask my daughter a question, and she tells me "Mom, you just asked that!". I have a MAJOR CPA exam next week, and I fear I will not remember enough to pass.

It is very upsetting to me (causing frequent weeping breakdowns), but my family (including my extended family - mother, sister, brother, aunts, cousins, etc), and doctor don't really seem to get it. They just think "Oh, but you're not having anymore seizures, right?" Well, my seizures were never really that bad, mostly simple partials, and not very frequent. To me, this seems like an unfair trade off.

[natalie]

Brain,

Thank you for the warm welcome! I had noticed that my thread had been moved, but I just thought that I had posted in the wrong location...

Lynn, my word retrieval is just horrible in conversations. I was trying to think of the word "steer' yesterday...and the person I was talking to kept trying to guess what word I was trying to think of...the more words she guessed, the harder it was for me to think! It was very frustrating...then she said, "oh well" and wanted to move on with the conversation, but I didn't. I wanted to think of the word because to me...the conversation was no longer an importance. If it would have been socially acceptable, I would have hung up the phone at the moment just so I could have thought of the word I needed to remember...hahahaha! Fortunately, when my friend moved on with her conversation, I stopped listening to her and thought carefully of all the words I knew that had to do with driving...and finally "steering" came to me! HA!

I was on Trileptal when I lost my memories of my baby learning to walk. I don't know if it is the Trileptal or if it is just the epilepsy because like you Brain...my memory has always been kind of vacant on me throughout my life.

Does anyone ever experience this:

I can watch movies over and over again and not remember exactly what happens in them? I have a general familiarity with most of them (especially if I have seen them more than 5 times); yet, I still will not know what will happen at the key moments in the movie! This is a positive side to memory difficulties! I always tell my husband, "ohhh...I have never seen this movie". He assures me, "we have"...and then little bits will seem familiar, but I never know the ending! Or if I do know the ending, then I won't remember the conflict...see what I mean? It is great! This cannot be from the meds because I have experienced this my entire life (but they do think I was born with epilepsy, only medicated for 2 years though).

Anyone else experience the positive side to memory?

Sorry for my long posts! I just keep coming here and finding these conversations so very interesting! Thank you all for sharing so much of yourselves with me!

[natalie]

Is it me or do docs think 'a little memory loss' is like sensitivity to the sun or something? I actually got into a pretty heated argument with my neuro over Topamax. It was ereasing my brain and he thinks I'm making too big a deal about it I bet if it was his memory he would think a whole lot diferent.memory is precious! I have enough trouble with the brain events that zap my memory but to give a med like that one and think it is ok to loose more memory...

Paradise,

This is difficult for me because I can't seem to distinguish how much of my memory difficulties are due to the meds and how are due to the epilepsy.

If you can differentiate between the two, then I can certainly understand your frustration. I would want to cling to every memory possible!

How did things resolve with your doctor? Are you on Topamax now?

Paradise, be careful of Trileptal though. My research didn't reveal anything about Trileptal really, but in my honest opinion, I think the test are designed in a way that misses the true effects of Trileptal. Trileptal literally stole a year of my life. I have no memories of one year of my life and from talking to others...this isn't unusual. However, it doesn't happen to everyone. Some people do rather well with minimal side effects from it! Every person is different...that is why I say "Be careful"...it is a caution statement and not a "don't do it" statment! LOL!

Well...I do hope that things worked out for you with your doctor. Please keep us informed (if you feel comfortable doing so...I would be interested in knowing how things are going for you).

[LynnW]

Lynn, my word retrieval is just horrible in conversations. I was trying to think of the word "steer' yesterday...and the person I was talking to kept trying to guess what word I was trying to think of...the more words she guessed, the harder it was for me to think! It was very frustrating...then she said, "oh well" and wanted to move on with the conversation, but I didn't. I wanted to think of the word because to me...the conversation was no longer an importance. If it would have been socially acceptable, I would have hung up the phone at the moment just so I could have thought of the word I needed to remember...hahahaha! Fortunately, when my friend moved on with her conversation, I stopped listening to her and thought carefully of all the words I knew that had to do with driving...and finally "steering" came to me! HA!

Word retrieval issues have come up a lot here. I used to think that maybe I was just getting old, but I know lots of people my age who don't experience this problem. For me, it seemed to coincide with the start of my seizure activity. It's such a specific memory issue, and even young people on this forum talk about it - there must be a connection with seizures. I mentioned it to my neurologist, he said that there "may be" a connection. He seemed unconcerned, like it didn't really matter - Well, it matters to ME!

I can usually find the word by describing out loud its use or characteristics (like for the word "steer" I would say "you know, that thing you do when you're driving and you want to turn"), and the word will come to me. It's like the word is waiting for me, but my brain has to take a different path to find it. The conversation sometimes seems a little weird, but the people who know me are used to it.

[paradise survivor]

Sorry I couldn't jump in earlier but I spent the morning in my room again...with the dogs in close proximity. I hate the 'new' morning schedule!! I never used to have events in the a.m. but recently this is no longer my safe time; I digress...It is amazing to me how the mere mention of Stupomax, Dopomax (Topomax) illicits such a strong common response. It may in fact work for some but personally I thought I was loosing my mind(what little is left). For me the control of seizures was minimal and the side effects maxed. My family, namely my dear hubby was the one who said enough is enough-he said watching me seize was less upsetting than losing his wife hour by hour right in front of his eyes. He also had some choice words for my doc but that is a longer story. My new doc has started me on phenobarbital with a neurontin chaser. Haven't started the neurontin yet (later this week) but there are definately changes afoot. Bad enough the brain gets sketchy but giving a drug that does the job faster....no thanks

[brain]

Brain,

Thank you for the warm welcome! I had noticed that my thread had been moved, but I just thought that I had posted in the wrong location...

Anyone else experience the positive side to memory?

Sorry for my long posts! I just keep coming here and finding these conversations so very interesting! Thank you all for sharing so much of yourselves with me!

Once again, I'm so sorry!

But as for Memories ...

I forgot where I posted this or emailed it - but believe it or not,
it was accomplished several times: I was awake; on a normal
standard EEG - they wanted me to relax and think, after I had
performed several simple neuropsych tests. So I closed my eyes,
and of all the memories, no matter what - I THINK POSITIVE,
but for some odd-ball reason, the first memory that comes to
mind is fingernails running on the chalkboard. It actually SHOWS
up on the EEG as a very mild seizure, and I do convulse!

OF all MEMORIES - I just cannot get this one out of my head.
My mind is no where near a chalkboard; however, I do have
audio-seizures (sensitivity to certain pitch, hertz, and frequencies)
and growing up most of my life "on chalkboards" may be the reason,
and possibility why I had so many headaches during the early years
before "Dry-Erase" and "Overhead Projectors" came along later on.

Since teachers often had us seated by our last names in Alpha-
betical Order, you can bet your booties I was seated up there in
the front row nearly most of my Education Life. (Never really had
the opportunity to be able to feel what it was like to be in the
"back row") ... but at least the "back row" were usually the ones
who got called to the chalkboards...



But for some odd reason - the noise, the way the kids wrote,
sends goosebumps and shivers and it would make me go blank.

============================


But for me - I had spent years, due to being dysarthric,
first with speech, then with language, then with memory;
and I was just a tyke ----> and it stayed with me throughout
my entire School life all the way up to Senior High!

My memory is like a Roller Coaster - I have good days and
I have bad, hideous days. I've been neuropsych'ed to death!
I'm not "bragging" here - but I probably had far more neurologist-
psych tests than anyone; I would have it 3-5 times in a Grade
School year, then it went down to 2-4 times during Junior High,
then 2-3 times during Senior High, and I've lost count how many
I've gone through during marriage / adult (I was married over
23+ years before being divorced for 6 years now). This doesn't
even account for the neuropsych tests in EEG's or at the
Hospital or during the 1st Wada ( 1988 ) or the 2nd half-done
one in 2006... And I had tried to undergo several neuropsych
tests in 2006 before the Wada; and the epileptologist specifically ordered
them - and they tripped seizures - my brain was fried and it
left me bewildered; and for the life of me I cannot remember
what those tests were that tripped them all. But the neurologist-
psychologist did tell me I was using both of my hands.

Well - there goes my memory.

I have a calendar on my computer - I had quit writing things down
because I forget where I put them; or I know I put it here or there
(I swear they had legs and ran off on its own), but at least on the
computer - it can't run off!



Sometimes my memory can be sharp as a tack, and sometimes
it's like "Hello Sharon? What planet are you on?"