worried about memory loss/confusion

[Loopy Lou]

Lately my memory seems to be going down the pan. Three times in the last couple of weeks I've forgotten to go to work, I'm always getting confused with days or times, and I've even forgotten my age! I had to actually count from 1986 to find out how old I am. When I'm at work (well, at home too I forget stuff but that doesn't matter so much) I've made silly mistakes or forgotten to do vital paperwork and the bosses are catching onto it.

At home I have a calendar where I've written down absolutely everything. What bills need paying and when, what money I have, even stuff like "meeting x for lunch". Now, if only I could find it >.<

I've noticed this is getting worse over the last couple of months but I don't know if its down to meds or is this a permanent effect of uncontrolled seizures? I'm now on 3000mg Keppra and 600mg Tegretol a day. The only side effects I've noticed from the Tegretol so far are sleepiness and swollen ankles/feet, but I can't see confusion and memory issues on the leaflet.

This is making me a miserable Lou

Edit - I can't search on Google at the moment as my phone is playing up and I don't have a computer anymore, so if anyone knows a direct link I can look at, or has personal experience please could you offer some advice on what to do? I'm getting rather worried.

 

[jyearta]

Loopy Lou

I can feel for you, cause I'm havig the same problems. at 1st. I thought is was because of my age, I'm 59.

But I can look back just at the last few months, and my memory loss is really bad.

I had friends tell me that the reason I don't remember is because I choice to listen when they are talking, I thougt WELL they must be right.

Then others just give the LOOK--She has a problem, like they think I am crazy.
I have noticed some have stop asking me out to lunch.
I have try harded, but as I said eariler it has gotten worse.

I haven't had a seizure since march. I think this comes from being on Dilantin, however I been on several other medic. I could not tolerate.

But if you are haveing this problem being on other medic. then I have to guess it is the effect of the seizures for all these years.

I hope that we can find a way to help ourselfs with this.

I have excepted the E. (have no choice) but this seems to bother me alot.

 

[Loopy Lou]

Yeah I feel like I'm becoming a bit of a recluse too. I'm working my way around that by trying to get out of the house more often, and going to visit friends and they come to see me sometimes.

The thing is that since I've been on the Tegretol my partial seizures have decreased somewhat, and I really don't want to have to change meds again. But will the memory problems and confusion get worse if I stay on it? I'm still having nocturnal seizures though. Pfffft. Wish there was a wonder pill.

 

[survivor]

Well my memory is also of a lttle concern. I had Capsule Mentat and they really showed effect. Try out meditation also. It also helps. Me giving a try although can not meditate for long but atleast I have started doing it.

 

[Loopy Lou]

I'm worried that if it keeps on then I won't be able to carry on doing this job, and getting a new job is proving very difficult. I'm making a lot of silly mistakes, but mistakes that I can get into trouble for. I've also just refilled my meds containers for this week as I do every Sunday, and I've missed 4 doses this week.

I hope whatever the problem is can be reversed.

 

[jyearta]

Loopy, I am worried about the days you missed on your medic.

I do as you I fix am containers on Sun.

I have to put in places I know I will be at Pm and AM

if you have a cell phone, you can fix for it to ring at your med. times
one of my med. come every 4 hours.

That is what I had to finally do.

 

[valeriedl]

I was diagnosed about 8 years ago with epilepsy. My memory wasn't quite as bad as yours, but just about everything from my junior year of high school until I was diagnosed with epilepsy, about 15 years, was gone. There were bits and peices left but not much.

After I got out of the hospital, everytime I had a seizure I'd loose everything that had happened 5 days before, if not longer. My memories wouldn't stay up there either. After a few weeks it would all start to slip away.

I learned to write EVERYTHING down that was improtant that was do be done. I had a small calander in my purse that I would use like a little diary. I'd write down things that I had done that day so I wouldn't forget it, for example if I had gone out to dinner with someone or went to the movies or even just went grocery shopping. I'd also mark upcoming things down and highlight them so I wouldn't forget about them.

I can set my alarms on my cell phone so I have it set to make sure I take my meds on time. For any other things that I need to make sure I have to do I'd set the alarm to go off the day before or an hour before, sometimes both.

My memory has gotten better through the years. My short term is pretty good, but my long term really hasn't got much better. Now things start to fade out after around 6 months. I was talking to my friend a little while ago and we started talking about all the things that we've done and that I don't remember. After hearing some of these things, I can't believe that I had actually some how had not managed to remember them!

I don't know how often during the day that you take your meds - once, twice or more, and how much you take. I seperate mine into am and pm, I also take one in the afternoon also. I do a double check after I do my pill case just to make sure I've got everything right. And as I already said I have an alarm set to go off everytime during the day when it is time to take them.

 

[marlena23]

My memory and concentration are horrible. My long term memory is ok but short term things I forget. I have alarms set to remind me to take my meds, to pay bills, to give ky son his medication for asthma, and timers are set when I cook otherwise my food would burn. I tend to read directions several times and although I know the words comprehension just isn't there some times. I also wandered off walking out of the store with a friend and my husband and they had to stop me and direct me to the car. Thank god I don't drive.
I know people used to gossip and spread rumors I was crazy when I used to work, but it got to the point to where I just stopped caring. No one knew what I was going through and I didn't owe anyone an explanation.
I'm on Lamictal and Zonisamide which I heard does have cognitive difficulties associated with it but I have been on other meds and honestly attribute it to my seizures and head injury. My suggestion is to talk to your epileptologist or neurologist and see what they suggest.

 

[Nakamova]

Hi Lou --

Memory issues and memory loss are particularly common with Tegretol, so it's a likely culprit. I think you should check in with your doctor to let them know what you are experiencing. Perhaps you could back off on the Tegretol dose a bit.

 

[Endless]

Lou,

It could be your meds, it could be after-effects of the seizures. Call your neurologist and tell him how you are feeling, and how it is affecting your life. You need to get this fixed. Like, by yesterday.

In the meantime... I can't find a peice of paper with info on it. I lose them all. Even when I've tried a paper notebook and held onto it for a couple of days I couldn't find things in it.

Now I use a little tiny notebook computer and I put everything onto it, grouped inside "folders" whose titles make sense to me.

I have a Microsoft Outlook Calendar of what needs to be done when (it's easy to set up repeat items, like bills!) as well as appointments, etc. I also keep a current list of my meds and dosages, lists of topics and questions for my docs, copies of CD's of medical imaging (MRI's, etc.) as well as fun stuff and some work stuff. My life is on that thing so I have an appointment on my calendar to back up my hard drive once a week. If someone stole the thing they'd know way too much about me.

Speaking of which.... that notebook computer goes EVERYWHERE with me. Once I left it in a coffee shop. I was so thankful it was still there on the table when I went back about 2 hours later. Since then I have it tethered to my purse with a cable.

 

[iloveshelties]

Lou,
I am sorry you are going through this. I know how upsetting this whole memory loss thing is...I am having it too...and I am 53 and I am starting to feel like an old lady and feel like others are looking at me like one too when I forget things too.
I recently bought one of those medicine organizers that has AM/PM rows on it and I fill it up on Sunday night for the week...that's not good enough, so I back it up by making a chart with my Topamax schedule on it with dosage and times and I check it off each and every time I take my meds so I make DOUBLE sure I don't miss a dose ( believe it or not, I STILL manages to miss a dose one day last week!...lol)
I keep a note pad on my chair where I watch T.V. in my living room and find myself making constant notes these days...I have NO memory anymore.
I feel for you when you said you actually forgot to go to work a few times in the last few weeks...have you told your doctor that one? You probably should.
Well, I have ALWAYS tried to solve things with humor...we HAVE to figure out a way to laugh at ourselves, right? I'm not saying it's a funny situation, but if we don't make light of our situation, we'll lose our minds! So, come on...let's find a way to laugh at our memory loss...hmmmm...lets see, maybe we can have a weekly contest of who can come up with the funniest jokes about memory loss or something?...lol...I don't know...I'm just trying to lighten the mood here!

 

[Loopy Lou]

Well on the bright side I'm playing a computer game which I've already completed before and storyline twists still make me go "wow, I'd forgotten they happened" lol.

Called my epilepsy nurse earlier and left a message, hopefully she'll get back to me pretty quickly.

 

[Endless]

Lou,

About the work thing... that's so hard. Because that's the kind of thing that could affect employment. I'm so sorry.

Is it possible for your brother to help out and call you on work days, to help you get there and be on time???

 

[mel239]

Hi-I have same problem-I spend all day cleaning up things that I started and have no idea why I did that but Im on trileptal.They are doing studies on the type that fades your personal memory away after couple weeks or months.Its called accelerated long term forgetting if anyone would like to google.As if a tiny man erased any trace of a memory away.I also have these blips all day long that sound like what you are getting at work,Lou.It may be called transitory cognitive impairment and is related to interictal epileptiforms.I googled this too and they do have tests for this,and Im sorry I cant remember what they said about a cure but it seems fairly new.Anyway,it helped I could put a name on it even though I dont see a magic pill.

 

[Loopy Lou]

Thanks for all your replies guys. My E nurse just called back and we had a good long chat. We've decided that I'm going to give the Tegretol a bit longer and see if things improve in time. Still waiting for the neurologist to arrange those tests he said he was going to set up in April, so she's going to get onto him about them too.

Going to try it for a bit longer then. I really don't want to change medications again

 

[iloveshelties]

Sounds like you are doing what I am doing, Lou...just haning in there with meds and giving them their fair chance before going through all the pain of changing them. I too am doing that dealing with all the memory fog, memory loss, dizziness and all around feelining like crap.

As a matter of fact, I went UP to my last increase yesterday( finally) to 200mg of Topamax, which I KNOW I will regret in a few days, but I just want to get it over with already...I KNOW it will decrease in side effects EVENTUALLY over the next few weeks...hopefully. In the meantime, I will pull up a comfy pillow, get lots of note pads, and pens, not make too many plans, and be thankful for my very patient family!

I hope they get back to you soon and straighten things out for you, ir at keast give you SOME kind of answer to help you. Best of luck.

 

[Endless]

Mel, thank you so much for that info. Interesting.

http://en.wikipedia.org/wiki/Transient_epileptic_amnesia


Right now I have a killer headach so I'm going back to bed.

 

[Loopy Lou]

Don't mean to sound stupid here, but what are interictal epileptiforms?

 

[Nakamova]

Inter = between
ictal = seizures
epileptiforms = EEG patterns that are characteristic or suggestive of epilepsy.

So interictal epileptiforms = abnormal brainwaves that show up on an EEG between seizures rather than during them. They are usually different than the ones that show up during an actual seizure, but they can still indicate that something wonky is going on, and they might be blips associated with "transitory cognitive impairment" (basically senior moments, epilepsy-style).

 

[BillK]

There's some medical debate over whether repeated seizures will harm your memory, but my neurologist seems pretty convinced that they do and seeks to prevent them primarily through increasing my level of medication or switching me to new ones. I seem to get side effects pretty easily at low doses whatever I'm on.

Anyway, I do have measured short-term memory loss, primarily I think due to brain surgery in my hippocampus. But yours could be a side effect of high doses of medication (have you researched the recommended range?) or a long term result of repeated seizures. So I guess all I can recommend is seeing your neurologist. But they have their biases too!

Anyway, I'm sorry to hear about the difficulties you are facing and wish you the best in getting through them. Fortunately we have these online support groups as well as in-person groups in some places.