I ran errands today, and forgot where I was going. Fine. But then I forgot
how to get back home. Only lasted a minute or two, but it was horrifying.
Work has stunk. My work is words, and I get paid by production, and need to
be able to just churn things out without thinking about it, which I have
done with skill and expertise for the last 6 years and suddenly I can't even
go pee anymore without stopping to think about the steps involved anymore.
The neuro did stop the Zonegran at 200 mg. But this can't keep going one. My
work, and my income, is painfully suffering. I've got to do something
different.
I am so heavy already, and am so afraid to go on another anticonvulsant and
put on weight, but I guess not as afraid as not being able to pay rent, uh?
AARRRGGHHH!!!
Why can't they just pat me on the head, say the seizure was from the Paxil
and let every thing just get back to how it was the way before. I want my
life back. I don't like it being sucky!
> I ran errands today, and forgot where I was going. Fine. But then I forgot
> how to get back home. Only lasted a minute or two, but it was horrifying.
My memory stinks, which seems to be par for the course for a lot of people on
this newsgroup. The thing about not knowing how to get home, or not knowing
where you are, has happened to me enough times that it doesn't throw me now. I
figure if I started driving on this road, I must be going in he right direction,
so I just keep driving until I know where I am. All you can do is wait it out
until it passes. I've never had it happen twice on the same trip (knock on
wood). The thing with getting lost might have something to do with spatial
cognition, which means knowing where you are in relation to place and
location.
> Work has stunk. My work is words, and I get paid by production, and need to
> be able to just churn things out without thinking about it, which I have
> done with skill and expertise for the last 6 years and suddenly I can't even
> go pee anymore without stopping to think about the steps involved anymore.
I had pretty horrific memory problems but not a lot of problems with words
particularly before I was diagnosed and placed on seizure meds. The things that
helped were getting my seizures under control, taking a very memory intensive
class in medical terminology, and then going on anti-depressants. The thing
that really seemed to help the most was the class. In that class they used a
lot of methods and tools (audio tapes, flash cards, CDs for games and
self-testing, etc), and I had to use all of those tools to learn and I can still
recall everything to this day. My doctor said, 'use it or lose it" about
memory/recall.
I was tested as part of an epilepsy study, and they found that my visual recall
is much better than other forms of recall. This means, if I see a picture of
something, I can remember things about it. If I talk to someone, I'm not likely
to remember the conversation no matter how many clues I get. The first part of
the study was four years ago and I will be returning for more tests as part of
that study this year, and I'm anxious to find if the anti-depressants make a
different in their test results. To me, those three things mentioned, the
seizure meds, the class, and the anti-depressants are the only things that made
a noticeable difference, an improvement.
> The neuro did stop the Zonegran at 200 mg. But this can't keep going one. My
> work, and my income, is painfully suffering. I've got to do something
> different.
>
> I am so heavy already, and am so afraid to go on another anticonvulsant and
> put on weight, but I guess not as afraid as not being able to pay rent, uh?
I take Dilantin and haven't had any problem with weight gain. Was on Tegretol
for a short time and no weight gain with that although I felt so good I was a
lot more active.
> AARRRGGHHH!!!
>
> Why can't they just pat me on the head, say the seizure was from the Paxil
> and let every thing just get back to how it was the way before. I want my
> life back. I don't like it being sucky!
You might need to be assessed to determine where the memory problem is coming
from because some people remember things they hear, things they see, or things
they actually participate in differently from each other. If there is any
seizure activity going on, it's probably going to play havok with your
memory/recall although this is most common with things immediately surrounding
the actual seizure.
You know, these doctors are going to tell you certain things, like make notes to
yourself, but that doesn't help when you can't find your notes. You have to do
things and find solutions that might be unique to your needs. For example, I
have to turn on the oven light every time I bake something because I won't
remember putting something in there unless I smell it. I can't let anyone but
myself put anything away because even if they tell me where they put something,
I just won't recall what they said. We now have clear crisper drawers in our
refrig because I would put food in there and then not know there was anything in
those drawers. In other words, I have to see it to remember it. Since your
memory/recall seems to be different than mine, you have to find ways to help
that fit your needs.
Oh, I should mention that my daughter, who is a speech therapist/pathologist,
was able to help me with some memory recall tasks because their training also
includes that kind of thing. You might be able to find a similar person in your
community who could help you.
Barb
Forgetting where you keep your coffee mugs, & when you find them you can't
find the coffee.
Ian
> I ran errands today, and forgot where I was going. Fine. But then I forgot
> how to get back home. Only lasted a minute or two, but it was horrifying.
[quoted text clipped - 16 lines]
> and let every thing just get back to how it was the way before. I want my
> life back. I don't like it being sucky!
Having no short term memory is a real burden sometimes. My wife is very
understanding, she reminds me (over and over) of the things I need to
remember to do and she only laughs about it a little :-)
I used to be production manager of a factory making formica benchtops, until
I was put on video monitoring at the hospital in preparation for brain
surgery.
They induced seizure activity to be monitored by EEG, by taking me off my
meds completely, but it got out of hand and I ended up spending SEVEN HOURS
in status. When I came out of it and they released me my tongue was chewed
to bits and abscessed - very painful. I lost three days - have no
recollection of them at all, which is a bugger since we spent that time at a
family reunion. Apparently couldn't eat and spent most of the time
sleeping.
When I went back to work I couldn't remember how to do my job any more. I
would try to do something as simple as ordering more materials, but I would
pick up the order book and just sit there wondering what I was supposed to
do next. Ended up having to go to the owner of the business and saying that
I could no longer remember how to do my job, so he would need to get someone
else to do it. I've now gone from $42,000 income to $14,000 invalid's
benefit. Makes a difference to your lifestyle.
I'm constantly asking my wife if we have any appointments today / tomorrow /
this week (one day I'll start writing things in a diary), always have to ask
people their names, which is embarrassing as it makes them think they aren't
important enough to me to remember them.
I've been taking medication for my epilepsy for 29 years now, but it still
isn't routine to take them. It's a constant struggle to remember to take
them, or if I've already had them. As I'm on maximum doses of tegretol and
epilim, if I double up it has a nasty effect.
I maintain a positive attitude in life. Enjoy it fully, though there are
some things I'd like to be able to do, but can't. I never let my epilepsy
stop me from doing anything right up until I stopped driving - but then I
started skydiving. (Kind of my way of saying "OK, so if I can't do that,
then I'll do this").
I bought the Kevin Treudeau "Mega Memory" course a few years ago. It's
brilliant. Extremely effective, but when you finish going through the course
you need to practice what you learned for a few weeks for it to become
second nature.
I forgot to practice.
Cheers,
Darryl.
> I ran errands today, and forgot where I was going. Fine. But then I forgot
> how to get back home. Only lasted a minute or two, but it was horrifying.
[quoted text clipped - 16 lines]
> and let every thing just get back to how it was the way before. I want my
> life back. I don't like it being sucky!
Klenow - 25 Jan 2004 22:29 GMT
> They induced seizure activity to be monitored by EEG, by taking me off my
> meds completely, but it got out of hand and I ended up spending SEVEN HOURS
[quoted text clipped - 3 lines]
> family reunion. Apparently couldn't eat and spent most of the time
> sleeping.
Seven hours of status?! Didn't they try to stop it with diazepam or
something? Was it a focal status or generalized?
Daz_n_Pat - 25 Jan 2004 22:59 GMT
> > They induced seizure activity to be monitored by EEG, by taking me off my
> > meds completely, but it got out of hand and I ended up spending SEVEN
[quoted text clipped - 8 lines]
> Seven hours of status?! Didn't they try to stop it with diazepam or
> something? Was it a focal status or generalized?
It was the most wicked tonic clonic seizures, which they EVENTUALLY managed
to stop with some suppository they stuck up me bum...valium me thinks. May
be wrong. As it was during the night, all the doctors were home asleep and
they had trouble finding someone to authorise the use of the drug. Threw
myself all over the bed I was in and also threw myself over the safety rail
of the bed, injuring my back terribly. I went to the neuro some time later
and asked (out of curiosity) to see the videos of the episode. They showed
them to me, but were careful not to show the one where I went over the rail
hurting my back.
Cheers
Darryl.
Klenow - 26 Jan 2004 00:05 GMT
> > Seven hours of status?! Didn't they try to stop it with diazepam or
> > something? Was it a focal status or generalized?
[quoted text clipped - 10 lines]
> Cheers
> Darryl.
Wow! I believe when paramedics encounter status epilepticus they're
supposed to inject diazepam (valium) intravenously in order to stop it
quickly. I can't believe that a suppository would be very fast.
Considering that prolonged status can seriously damage your brain, it seems
to me like some medical incompetence was happening here. I hope that
experience didn't make things even worse for you.
Daz_n_Pat - 26 Jan 2004 03:33 GMT
> > > Seven hours of status?! Didn't they try to stop it with diazepam or
> > > something? Was it a focal status or generalized?
[quoted text clipped - 21 lines]
> to me like some medical incompetence was happening here. I hope that
> experience didn't make things even worse for you.
Mate, you have no idea......oh - you probably do. (Nice to talk to people on
my wavelength).
It has ruined my already seriously lacking short term memory, and made it
very difficult for me to understand even the most simplistic of
instructions.
I was always quite intelligent in the past (I'm not trying to brag), but now
I feel like such a dunce. I have trouble following conversations, finding
the words I want to use to express myself, etc. I know there are a lot of
people a lot worse than I am and I sympathise with them.
Life throws a curve ball now and then and it's fun to see what will become
of them and where they take us. How we react to them and live with the
changes is a test of our character I guess.
turbinado - 03 Feb 2004 22:26 GMT
I am in the same boat as you. I used to be considered a highly intelligent
person (and was very proud of that), but in the last few years, since my
seizures increased in frequency and i had to go on meds, my IQ has been
reduced considerably. Understanding complex instructions, coming up with the
right words and phrases, etc. has become increasingly difficult, both my
long and short term memory are shot, and I fear that in a few more years
I'll be incapable of working. Test of character is a good way to look at it
I guess.
> Mate, you have no idea......oh - you probably do. (Nice to talk to people on
> my wavelength).
[quoted text clipped - 8 lines]
> of them and where they take us. How we react to them and live with the
> changes is a test of our character I guess.