Writing, words, memory, and meds

[toro]

Hey all, apologies for creating a possibly repetitive post.

I'm taking 300 mg of dilantin, because 400 mg apparently slowly bumps me up to toxic levels (38 or something like that if I recall). My current dilantin levels however are around 10 (blood work taken before I took my morning meds), which is supposed to be good according to my neuro.

At any rate, I have a hell of a time remembering words properly when I'm talking sometimes. It'll come and go in incredibly predictable 4 week waves along with other auras. My doc thinks this is just related to my body's metabolic rate and we can't really do anything about it.

Now, not only are words frequently on the tip of my tongue, but as you can see from this post, my mind is incredibly disorganized in putting thoughts into words. The main difficulty of this is that I have to write for a living and I forgot how bad things have become over the last seven years since I started having symptoms. It usually takes me on the scale of a month or so to write a rough draft of a five to ten page paper.

However, a couple weeks ago after my last wave of auras, migraines, and inability to talk properly I got a fairly well written fifteen page paper put together and ready to send out in the span of about four days. Just like how I wrote when I was in college. Now though, I'm back to where I was, spending an entire day working on a single paragraph.

Does anyone else have this same problem? Has writing and speaking become disorganized and cumbersome? Is this even something I'll be able to escape? Am I going to be getting stuck editing other people's work for the rest of my life?

 

[valeriedl]

I have a good bit of problems trying to think of words. I know exactally what I'm trying to say and as you said, the word is on the tip of my tongue, but I just can't get that word to get into my brain. I can usually describe what the word is that I'm trying to say but it's like playing a guessing game when I'm talking to someone.

Some examples:
The really cold thing that you keep food in - the freezer
The thing that you cook on - the stove
The thing you cook in - the oven or microwave (there's more to that game)
The thing that we cut the grass with - the lawn mower
The furry thing that runs around the house - the cat (I've got 2 of them so we've got to figure out which one I'm talking about)

This is really fun to do when I'm on the phone with a help support line. I might be calling about the phone but can't even think of the word that I'm calling about.

I do a good bit of crossword puzzles and that helps with thinking of words.

I like to write, I'd love to put a book out but that's probably never going to happen. I'm not sure what type of writing you do. When I'll start something I'll keep track of the characters or main events that are happening in a note book so that I can just look over to see who that person or place is and how they are revelant to other things. I like to read too and if the book's got alot of characters in it I do it with that too.

Alot of times if I can't think of the word but know the descripiton I'll google what I'm thinking. You'd be supprised how many times you find that word you want.

I go back and read what I've already wrote pretty often just to make sure it's all in line with everything else, this also helps me remember what's going on with what I've written.

Sorry this is long but I want you to know you're not the only one out there and I hope some of these things might help you.

 

[Janus]

Hi, I have that problem in a bad way. It bothers me no end! Words mean so much to me and in college I was always told I had such a command of the English language, but now the words are gone or going. I hate it because we know by the basic law of physics that energy can not be created or destroyed but only converted. Yes, so what happens to the lost words? As a poet/would-be writer, words have power to me. I LOVE them. And The more I struggle to find that word the farther away it seems to go. Sometimes I give up so easily and I think the lost word gets so lost that I forget there ever was a word that is now gone. Oh, God. Crossword puzzles drive me crazy because I love them but each time I have to give up pretty quickly out of total frustration.
Someone pointed out the interesting fact that I am not surrounded any more by people with good language skills and so I forget out of lack of exposure. That could be part of it because I am now in a small town, where I bought a house and am kind of stuck. There are no universities here and it is anti-intellectual. So there! I can blame the external circumstances I guess. Great post, thank you.

 

[Nakamova]

Do you have seizure control on your current dose? If so, perhaps your medication dose can be decreased a bit more to see if that helps. When I was on Dilantin I had low blood levels (More like 4 or 5), but my seizures were still controlled.

If you neuro thinks the language difficulties are seizure-related, maybe he can prescribe some ativan to take when the problems start. If they are seizure-related, the ativan may help nip them in the bud.

You might also want to ask your neurologist about having a neuropsych evaluation done (ideally during the crucial week). The evaluation is made up of memory and cognitive tests. The neuropsychologist uses the tests to identify which areas of cognitive functioning are affected, and can recommend ways to improve or work around particular problems. The tests are also helpful to set a baseline measurement to measure any future changes against. That can be helpful if you're trying to see if a dose or medication change is making things better or worse.