To those with memory problems

[KathyJJ]

does this happen with you? I have had memory problems for several years now but this week it seems to be worse. I can't remember something I did jut a few hours ago but until this week I wasn't quiet that bad. My husband tells me I have times that it will be worse for several days and then it will pass. He says it happens on and off but not very often. It may be several months before it happens again. Obviously, I don't remember that either. I just know that what I "DO" remember hasn't been this "short". I have short term memory problems but it hasn't been that bad all the time. There isn't anything that triggers it, it just happens. Do you have times like this that just come and go? Thanks for your time

[Chris515]

My memory is bad just about all the time... I'm always forgetting what needs to get done, what I said I would do, etc. It doesn't really come and go for me, it's just persistent.

It is so much worse after a tonic clonic though. That wipes out my memory for days beforehand.

[Meetz1064]

a memory?? *sigh*

Yeah, sometimes my memory is like that, but most of the time, it's really pretty good. I have to do a lot of crossword & sudoku puzzles to try to keep it in shape, though. Card games seem to help, too.

Have you looked into neurofeedback? It helps with a number of things.....

[foreverdark]

This could sound sarcastic, but I honestly don't remember. The last few days it is REAL bad, not the worst it has been, but bad. As previously stated, a tonic clonic knocks me for the proverbial loop. My last one was in August '09 and I STILL don't remember most of the few days afterward. I knew I hurt, remember that OF COURSE and the girls forced into my mind something I WISH I would forget, the paramedics taking to to the ambulance in my undies and Mickey Mouse blanket *LMAO*

Anyway, sorry. I have days that are much worse than others and days that are very good considering. But if it all the sudden has gotten real bad for you I would talk to someone. Just to be safe...

[gigi]

i am addicted to word mole. My vocabulary is re-booted, not sure it helps my memory. I think that crashed years back. I can carry on one hell of a conversation, if I can just remember what I wanted to say!

[Cetacean]

Memory's bad and getting worse over the years along with the nocturnal seizures. (I'm diagnosed with left temporal lobe epilepsy.)

It has started to interfere with speech - word recall - which is my strong suit, as well as names, faces, events, and information.

Could be all the prescriptions.

Amazing thing is, it is really cool to be alive and otherwise well, and to have contact with all of you my peers in epilepsy.

I've looked into neurofeedback and it looks promising, but not sufficiently to induce my neurologist to push my insurance company into paying for it, as "it is not within the standards of practice at this institution." I'd pay for it but this disease took my career down ages ago. This is good for the pharmaceutical companies who produce the meds he prescribes in ever-increasing dosage and variety.

[PhylisFeinerJohnson]

Last night we took out the Parcheese (spelling?) board and I couldn't remember how to play. I cried. (But I still beat my husband!)

[tam bam]

All the time!!!!! It drives me insane. People think I am weird because of it. I know it is because of my epilepsy even my neurologist stated this on my last visit. I am noticing it more and more lately. I hear a lot of people with E. talk about this so it must be pretty common.

One thing I do is I leave sticky notes all over my house to remind me to do things. It works for me!

tam bam

[Elaine H]

Oh bless you all!! It is so good to know that it's not just me that is stark raving bonkers!!! (a very English expression) All joking aside, it is so frustrating isn't it? My long term memory is better than anyone I have ever known, and friends and family just cannot believe what I can recall from years ago, like tel no's, car reg plates, school teachers, long ago events etc, but the worst thing about my memory trouble is, that I cannot remember seeing The Eagles in concert at Wembley in 1996, I had no memory of it 5 minutes after coming out, but, I was kind of hoping, that as our short term memories go from the Temporal Lobe to the Frontal Lobe over a period of years, that I would be able to shut my eyes and be there again one day, watch this space Lainey!?!?

Meanwhile, I keep smiling, and just try and make people around me understand, that I'm not making it up, I have long since forgotten holidays to Egypt, Malta, Thailand, Hong Kong, but, when we get the photo albums out, ping!!! all the memories come flooding back, so guys, our memories are in there, like a filing cabinet, our brains contain the info, we just need to a) open the correct drawer, and b) pull out the right file, then "Memory Lane", here we come, thank God I have been a keen photographer all my life!! I love to push that button, and simply capture that very precious moment in time, because if we don't, it is quite simply, and sadly, gone, forever!!

Lotsalove To You All !!!!!!!

Lainey xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[PhylisFeinerJohnson]

tam bam,

What did we do before sticky notes? I have them everywhere except on my forehead!!! (And it's quickly coming to that!!!)

[Ruth]

Hi Phylis, I write everything down, too.

I use to be a great speller. Not any more. I have to look up words in the Dictionary. Then I cannot remember what the first letter is. It is frustrating.

Is it our meds or our seizures?

[tam bam]

My doctor seems to think it is my seizures and not my meds. I have read that depending on where your seizures are coming from, how controled you are and how many seizures you have, yes it can effect your memory. Of course, I have been complaining about my memory before being put on the meds.

Speaking of sticky notes that reminds me to leave myself one to remind myself to do something later!

tam bam

P.S. - Elaine: You are not stark raving bonkers by no means at all. I know what you are talking about with the memory issues.

[PhylisFeinerJohnson]

Ruth, I'm not sure. I've been a writer for over 30 years and I still can't spell for the life of me. That's why God invented "spell check"!

[Elaine H]

Hi Tam Bam

Good to hear from you. I know I'm NOT stark raving bonkers, but unfortunately, society and specifically employers, kind of make you feel that way, and after having lost 8 or 9 jobs now because of my epilepsy, I am angry, and have just about had enough of the public's perception of the word epilepsy, and how they see us, I just wrote back to someone on here about that Godawful word "epileptic" and how I so believe that we must get rid of it, and educate people that we are as intelligent and capable as anyone else, and I for one, have never had a day off work sick, because I've been on the floor, foaming at the mouth and convulsing, but that is how people think of us, and what we will do if we have a seizure.
Anyway, take care.

Cheers
Lainey xx

[tam bam]

Hi Lainey,

I am employed but my current employer has been giving me crap lately about going to the doctor. He lets me go but makes hurtful comments. I told him last week that I am going to see an epileptologist and he told me that he would like to see an end to all of this. What the HELL! It put me in tears for the rest of the day. There is no end to epilepsy! I felt like hitting him upside his head and he is a Workers' Comp attorney. He should understand. He deals with disabled and sick people all day. Also, this man has seen my seizures and knows how bad I can get. He knows I need help. People can be such jerks. I totally agree with you there. I know I am treading on thin ice but I cannot help it. What are us epileptics to do? I only stay for the insurance.

tam bam

[PhylisFeinerJohnson]

A few months ago, I testified at a forum with the EEOC about including Epilepsy under the Equal Opportunity Act. Basically that means that we would be protected under the EEOC umbrella and we could not be fired without just cause and an inquiry as to the validity of the firing.

The EEOC and the Federal Government's Department of Health and Human Services both seemed VERY receptive to the idea. In fact, we all wondered why workers with epilepsy had not been included before!

[tam bam]

Really Phylis. How can someone like me help make this into law. Should I contact my Congressman or Senator? I am not afraid to speak my opinion to either of them.

tam bam

[Ruth]

He lets me go but makes hurtful comments. I told him last week that I am going to see an epileptologist and he told me that he would like to see an end to all of this. It put me in tears for the rest of the day. he is a Workers' Comp attorney. He deals with disabled and sick people all day. Also, this man has seen my seizures and knows how bad I can get. People can be such jerks. I totally agree with you there. I know I am treading on thin ice but I cannot help it. I only stay for the insurance.tam bam

Hi, you are not treading on thin ice!! He is hoping you will quit. He cannot fire you for it. He is an attorney, so he knows he cannot.

I agree, there are a lot of jerks out there and he is one of them. Be thankful you are not like him!! You are a better person than him.

(((HUGS)))

[PhylisFeinerJohnson]

Tam bam, you alone don't have to make it a law. The EEOC is already working on that. But you CAN write to your local legislators about increased funding for epilepsy education, awareness and research.

[tam bam]

Thanks so much Phylis and Ruth and so sorry that I hijacked this thread. I didn't mean to. I will write my legislators about this and do what I can do to help us but I do know I am only one person and we must all do our fair share and speak out to help ourselves. Glad to know that the EEOC is fighting for us.

Now lets get back to those darn memory problems. I forgot how to spell a word this morning that I know how to spell. I used to be such a good speller in school.

tam bam