Memory and Cognitive Functionality and Issues

[McGill]

I have cognitive issues R/T E & the Rx for the anti-convilsants. It takes me longer to figure out the logic of something and sometimes I have difficulty following what members have posted.

However, I must warn you that I stay away from any strobe light-like games for the photosensitivity issues personally. That doesn't stop me from reading a dictionary, though, and learning the various meanings of a word! Watch out if you think my definitions are a bit twisted!!

[jbrown314]

My memory was declining over time and I had enough so I scheduled an appointment with my Dr at the Cleveland Clinic Foundation (CCF). She switched me from Mysoline to Keppra a bit over 1 year ago. I have been seizure free since surgery in 1993, but, I was unable to ween off the meds (auoras). Now that I have been seisuzure free on Keppra for more than a year my insurance company will hammer me if I want "Brand Name" - Keppra. They will pay more dollars toward the generic version than the Brand Name! My Dr. says there are not enough studies on generic and says I should stick with the Brand Name. I am the major bread winner for a beautiful wife and 5 great children ranging from 1 - 9 yrs old. I am in a conundrum - go with the generic and risk seizures or pay the large bill. Any suggestions?? Thanks

[McGill]

jbrown314, while I don't have a family to provide for, I can empathize with your situation. What the insurance companies are ALWAYS looking to do is TO MINIMIZE COSTS to themselves.

I'm wondering this, because I'm in Canada: can your neurologist write a letter to the insurance company stating that the BRAND name version of Keppra vs. the generic name be made mandatory for you? It might be to your advantage to point out to the insurance company that using the brand name has kept you productive and seizure free, thereby lowering your insurance risk in the future, assuming you have no more seizures. It's almost like presenting a legal argument to them - show them the cost-benefit analysis to giving you the brand name Rx and compare that to being at home, not providing financially for your family as well as being a drain on the welfare system in the U.S. to help you survive.

Common sense is what is needed here; and unfortunately, businesses are more profit oriented when it comes to the almighty $$ rather than to keeping people productive and as functioning, contributing taxpayers off the welfare rolls!

[bigbro]

I have problems with memory issues and also stumbling over words alot, which the problems have seemed to get worse over time. I have wondered if it is my seizures causing this or my meds as I am on 3 different meds currently along with the RNS. I really wonder though if it is my seizures as my focal point is right where my memory and speech functions are. Has anyone else ever had the same experience? My Hippocampus is one of my focal points and the other is the temporal lobe.

My sister had seizures originating in her temporal lobe I believe. I noticed in her last 7 months especially that she was taking longer pauses between sentences and not enunciating as clearly. This followed a particularly bad seizure.

But she was also taking tiagabine during that time (first time she was ever on that), along with carbamazepine which she had been on since soon after first diagnosis.

[bigbro]

I was going to ask - is it common to get worse short-term memory over time with E, even if you stay with the same drugs? This certainly seemed to be the case with my sister, her memory appeared to deteriorate while she was on the same dose of carbamazepine for a long time, and it was certainly seizure related - if she was learning something, the seizure could pretty much wipe what she had learned right out. Otherwise she would remember things.

My hypothesis is that each seizure damages the brain (I'm pretty sure this is true), and over time that damage is cumulative, resulting in more and easier memory loss, lower seizure threshold, etc. This is something that would be worth mentioning to someone young, or someone just diagnosed with E - a really risk averse attitude of avoiding most of the known risks, lower stress etc. in order to really lower the number of seizures will likely make your life better in the long run, even if you can shrug off a seizure as you presently are.

[McGill]

That's a question to ask your neurologist and/or have her tested for cognition ability. As for the length of time being on one medication, I'm not qualified to say. I do know that when I had an MRI last year, the possibility of additional seizures over the years did cause some brain damage b/c the neurologist mentioned to me that there was some "fatty tissue" on my brain inside the linings which cover the brain. Please check to be certain.

[bigbro]

Hi McGill, thanks for your reply. This is just something that has been bugging me. (My sister passed away 2 months ago.) I know my sister did not treat the seizures that seriously when she was younger, and am not sure whether she had warnings from her parents or not, or whether her neurologists gave us much warning.

I'm sure it is difficult to get a teenager to follow advice though. I can't blame her - it is really up to the parents to educate themselves as much as possible as to how to guide their kids through life. It is also difficult for parents to provide adequate support when they separate. I realize that some people are literally so horrible to be around that the other person has no choice but to divorce, but I really wish that people who are about to make a decision to break off their marriage for selfish reasons (or cause the other person to break it off by being that horrible to be around) have a good, hard look at themselves and realize that their decisions will certainly negatively impact upon their children. And ultimately, it may be the first link in a chain that ultimately ends in your child's death.

I know this went way off topic, but my suspicion is that a lot of people don't treat seizures with the respect they deserve, mainly because they don't realize the long-term consequences. I don't know if even books harp on this at all. I suspect that if my sister had known the extent of her difficulties remembering things that were essential to hold down a job, and of course, the potential for death that each seizure brings, she would have approached seizure minimization a lot more thoroughly in her youth. Or perhaps, my parents would have.

For example, with something like boxing, most people know of the risk of dementia pugilista - each blow to the head does damage, and the dementia doesn't appear until 10-15 years later. So most people at least know the risks. The same with smoking - people know that lung cancer, emphysema, heart disease etc. are all long-term results of smoking. But I know that average people don't know anything about the long term effects of seizures, and I tend to doubt that even many of those with E really consider that:
a) a person can strongly influence their rate of seizures, through the degree of risk management they apply to their situation.
b) seizures have long term negative effects, and these effects happen in the prime of your life - potentially death and more probably - debilitating memory loss.
therefore,
c) even if you can't reduce the number of seizures down to zero, both minimization of seizures and managing seizure risks is something that really pays more dividends as it will postpone the negative consequences (memory loss or the seizure with your name on it), perhaps even into old age.

Am I off base here with this?

[McGill]

I don't think your off base with this. Another thing to consider, even though I'm a man, is that you're talking about a teenaged daughter. Her menstrual periods could affect her seizure activity. There is something on the site here about "Catamenial Epilepsy", as this relates to women & their hormone fluctuations.

During the teenage years, hormones are in full swing so even the guys can be affected by their changes in hormones only during adolescence. Biology & genetics ...

One critical thing I would suggest, if your DD (daughter) has been on a regime of Rx for an extended period of time would to have the Rx reassessed by a neurologist. There can be irreversible side effects from long term use of any single drug or combination of them. I'm speaking from first-hand experience on the latter issue b/c my neurologist mentioned it to me last year. I hope this sheds a bit more light on the issue for you.

[valeriedl]

I know as someone posted above, here in PA (or it just may be my insurance company) they will give you the generic version of the meds because it is cheaper for them. If the dr states on the perscription that you must have the name brand than they have to give it to you.

As for memory loss, at first when I would have a sez stuff that would happen only a few days before hand, or even that day were gone. Now I will remember things after the sez, but my long term memory is horrible. Things that I did maybe a month ago I can't remember. If it happened over a year ago then I usually don't remember it at all.

Just about everything that happened from 11th grade till when I had my first sez 7 years ago (I'm 33 now) are just about gone. There are a few things and people that I still remember.

[lureswinger]

loopy lou
i have a great idea that we use here saves on forgetting to feed dogs
we have two big german shepherds and at night they stay in the conservatory (where my pc is)
we find it easier to have a bin up against the wall full of dried dog food and the shepherds just help themselves untill they cant reach anyfurther down into the bin, then the larger one puts his paw on the side and tips it over thus leaving a bit of a mess but also reminding us to refill the bin
ok i suppose if you have big dogs but not such a good idea for those of you that keep (rats) small dogs lol

[valeriedl]

In order to remember anything important (even to take my meds) my cell phone has an alarm on it. I set it to go off for anything that I don't want to forget to do. It's a great way to remember things for me.

[lureswinger]

likewise valeried (a blackberry does have its uses)

[lureswinger]

what i find strange and i dont know if any of you suffer the same sort of thing and that is, short term memory loss,
i can remember things that happened when i was a child long before i was diagnosed with epilepsy as if they happened yesterday so to speak but things that actually happened yesterday are a total blank

[RanMan]

In order to remember anything important (even to take my meds) my cell phone has an alarm on it. I set it to go off for anything that I don't want to forget to do. It's a great way to remember things for me.

Sounds like a good idea BUT don't you forget what the alarm is reminding you to do ?

[valeriedl]

That's funny! Acutally the phone has a calander with alarms that you can type in what the alarm is going off for. If it did't have that then I probably wouldn't know why it was beeping!

[lureswinger]

where would we all be in a life without mobile phones eh ignoring notes on calendars that we havent seen lol
anyway the reason i started this string was to find out if anyone has memory loss to the degree that they cant remember ten mins but can remember the events say thirty years ago as if it was yesterday, e.g. when i was at junior school in scotland i remember sitting at the top of a hill with a g/f watching a shackleton bomber overshoot the runway and explode into a ball of flames turned out the girl i was sat next to her dad was the radio operator on that shackleton and if you took me up to that school now i could show you exactly where we were sat when it happened

[lureswinger]

plus i find the older i get the more i remember from my chilhood it seems to be like a blanket covering the middle part of my life and as i get older so it uncovers more about my younger years

[lureswinger]

nah i think while u live alone you have noone to remind you that youve forgotten something so you never miss out on anything cos lets face it you cant miss out on something you never knew was there in the first place
i think life gets worse when you have a family and you get reminded in triplicate for every minor thing u forget, my life was pretty much stress free 6 yrs ago when i was single but since i got married and aquired 3 kids then all hells been let loose

[kyrissa]

My memory really stinks! I have the most difficult time remember much of anything. I have a degree in nursing, but I couldn't even tell you much of anything. I stumble over words and have the most difficult time just remembering names! I forget words, but I also mix them up: crum of meashroom, instead of cream of mushroom
God bless my parents, who take excellent care of me.

As odd as it seems, some things I do appreciate that I have forgotten. A lot of my ex marriage I do not remember. A lot of hurt went through that, but I don't remember a lot of our times.
It really does frustrate me that I can't remember anything.

[kyrissa]

I call my cell phone, my brain! Technology is incredible!