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Medical Forum / Diseases and Disorders / Epilepsy / February 2005

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seizures - working or disababled

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justme - 03 Feb 2005 10:38 GMT
Dear Abby, Dear Abby,
My feet are too long, my hair's falling out and my right's are all
wrong. My Friends they all tell me there's no..................
OOOOPPPPPS!!!!!!!!!!!
OOOOOOOPPPPPSSSS!!!!!!!!!
Wrong group posting there, sorry - and darn it, no backspace or delete
button today :)!

Let's try again here   :)
I am having trouble remembering that I am having seizures (amongst
forgetting everything else!)and think that I am alright for working a
regular job thru certain days.
I read the postings on the group here and most of you seem as if you
have your seizure difficulties under control. Is it me? Are any or you
still having seizures or seizure effect problems?

How about memory problems? Anyone have problems with remembering recent
events. That is, memory problems due to the seizures themselves???

Maybe it's not the seizures at all but the medications heh? I am taking
400mg topiramate, 400mg dilantin, and I just added it up but wow, 3600
mg of gabapentin (doesn't that seem like an awful lot to anyone now that
I think about it ???)  along with a 100 mg of sertraline for my PTWS
(supposedly) daily...

Curious and not sleepy :)
~..~

owlvee

BTW - Thanks for the info on how to access while my server had no
connection to this newsgroup. One person in particular emailed me with
very helpful information - thank you - you know who you are:)
CyberCafe - 03 Feb 2005 20:23 GMT
> Dear Abby, Dear Abby,
> My feet are too long, my hair's falling out and my right's are all
[quoted text clipped - 11 lines]
> have your seizure difficulties under control. Is it me? Are any or you
> still having seizures or seizure effect problems?

I'm one of the lucky ones who has pretty good and consistent control.  Once
in a while though the control flies out the window.  The last time that
happened and I had seizures, it was thought to be due to a dose change in
another medication.  They adjusted my Dilantin dose and I've been fine
since.

> How about memory problems? Anyone have problems with remembering recent
> events. That is, memory problems due to the seizures themselves?

Oh, sure.  I think it's pretty common to have memory problems when you're
having seizures.  Except why do we remember the seizure and not the daily
things we want to remember?

> Maybe it's not the seizures at all but the medications heh? I am taking
> 400mg topiramate, 400mg dilantin, and I just added it up but wow, 3600
> mg of gabapentin (doesn't that seem like an awful lot to anyone now that
> I think about it ???)  along with a 100 mg of sertraline for my PTWS
> (supposedly) daily...

My memory/recall improved somewhat after going on meds.  I was diagnosed 15
years ago and my memory has improved over time.  There are only three things
that I can attribute to that memory/recall improvement and that is the
Dilantin, taking a course that required memorizing a lot of words and
spellings, and taking an antidepressant.

Barb

> Curious and not sleepy :)
> ~..~
[quoted text clipped - 4 lines]
> connection to this newsgroup. One person in particular emailed me with
> very helpful information - thank you - you know who you are:)
kompressor - 03 Feb 2005 21:17 GMT
Owlvee

What amazes me is that you can walk, let alone work, on that high dosage -
well done. Yes, it most certainly does seem like an awful lot. Dilantin is
a real killer with the insomnia - love your sign-off. Do you have an
appetite at all? My doc has me on the scales the minute I walk into her
office these days and shakes her head each time as the needle steadily
goes down.

No, my seizures are not controlled (intractable) like your's and I don't
work a regular job - haven't done for over a year now. Before that, it was
very much part-time in a family business for several years.

Memory - what's that? I've forgotten ;-) Between seizures, meds and a
lobectomy, my memory is very frail these days.

Keep up the fight! It's not likely to happen in our lifetime, but it's
people like us who give the scientists the data they require to keep
working on finding a cure.

Cheers
Fran
Dave ???? - 03 Feb 2005 21:58 GMT
Howdy Owlvee!

I think that short term memory problems are standard equipment that comes
with just about every epilepsy package!

I can't work due to insurance issues and sleep schedule issues. Today, for
example, I got to sleep at 7:30 AM and woke up at 3:00 pm.

Since I live by myself I don't even know when (or if) I have CP seizures.

In addition to all of the crap I'm taking for OTHER medical conditions I'm
currently taking 1500 mg of Trileptal and 2500 mg of Keppra every day.

Let me see...
What was the question again???

Signature

Dave ????

http://www.howdydave.com

> Dear Abby, Dear Abby,
> My feet are too long, my hair's falling out and my right's are all
[quoted text clipped - 29 lines]
> connection to this newsgroup. One person in particular emailed me with
> very helpful information - thank you - you know who you are:)
Mary Fisher - 05 Feb 2005 15:42 GMT
> Howdy Owlvee!

That rhymes!

> I think that short term memory problems are standard equipment that comes
> with just about every epilepsy package!

It comes with being human. And it gets worse with age ...

> Let me see...
> What was the question again???

I've forgotten. Was there a question?

I do remember you though - some things are unforgettable!

Mary
Malcolm Thomas - 08 Feb 2005 17:22 GMT
>> Howdy Owlvee!
>
[quoted text clipped - 4 lines]
>
>It comes with being human.

Not my problem than !  :-)

>And it gets worse with age ...

(cough)

>> Let me see...
>> What was the question again???
>
>I've forgotten. Was there a question?
>
>I do remember you though - some things are unforgettable!

Yes, but you've just got to leave them behind, Mary. You'll get over me
eventually.

Having great fun with the good old DVLA ATM, because I refused to sign
away my medical freedom so they've refused to issue me with a licence
now (last one has expired) so I have to be a naughty boy again. Doesn't
it ever end and can't they treat me as normal? I feel like I've been
branded like a bull or tattooed like a PoW.

Grumpy about the above problem, but having a fun life,

Signature

Malcolm      

Mary Fisher - 08 Feb 2005 20:02 GMT
>>> Howdy Owlvee!
>>
[quoted text clipped - 21 lines]
> Yes, but you've just got to leave them behind, Mary. You'll get over me
> eventually.

Oh, leave me the one thing I can remember!

> Having great fun with the good old DVLA ATM, because I refused to sign
> away my medical freedom so they've refused to issue me with a licence
> now (last one has expired) so I have to be a naughty boy again. Doesn't
> it ever end and can't they treat me as normal? I feel like I've been
> branded like a bull or tattooed like a PoW.

This is where we came in isn't it?

:-)
>
> Grumpy about the above problem, but having a fun life,

It's being so miserable as keeps you going ...

Mary
turbinado - 04 Feb 2005 00:30 GMT
(snip)

> Let's try again here   :)
> I am having trouble remembering that I am having seizures (amongst
[quoted text clipped - 17 lines]
>
> owlvee

I am getting regular CP seizures (intractable) and my memory is like a
sieve... some things stay in there, some don't, and I have yet to discern a
pattern. Like you, I'm not sure if the memory problems are due to the meds
or the seizures, or probably both - but I'm taking WAY less meds than you
(1000 mg/day Tegretol).

To the person in another thread who thinks a lobectomy is too extreme for
CPs: I thought that too, until I had a CP during my last job interview.
Sure, my husband and I can live with and laugh at them, but trying to
function in the world and make a living while they're uncontrolled is a
different matter. My performance in my last job was significantly hampered
from the memory problems too, and I can foresee a time when I'll no longer
be able to work due to these problems (assuming I can get a job). So, I've
just been given a date for right temporal lobe resection - March 3 is the
big day! Thanks for everyone's input on this issue. I'm scared, but
hopeful...

Wish me luck!

Hilary
Theo - 06 Feb 2005 06:12 GMT
> I am getting regular CP seizures (intractable) and my memory is like a
> sieve... some things stay in there, some don't, and I have yet to
> discern a pattern. Like you, I'm not sure if the memory problems are
> due to the meds or the seizures, or probably both - but I'm taking WAY
> less meds than you (1000 mg/day Tegretol).

It may have to do with how important it is... meaning that the really
important stuff tends to roll around in your mind over and over. While the
day-to-day stuff are forgotten all the time by most people.... a friend
says thats especially true for males :P  The key might be repetition so it
becomes imprinted better... if that makes sense. At least thats what I had
to do to remember readings and such for school.
turbinado - 06 Feb 2005 23:20 GMT
> > I am getting regular CP seizures (intractable) and my memory is like a
> > sieve... some things stay in there, some don't, and I have yet to
[quoted text clipped - 8 lines]
> becomes imprinted better... if that makes sense. At least thats what I had
> to do to remember readings and such for school.

Yes, I have noticed that stuff that I have thought about or recollected
often tends to stay in there.
Mary Fisher - 07 Feb 2005 11:54 GMT
>> > I am getting regular CP seizures (intractable) and my memory is like a
>> > sieve... some things stay in there, some don't, and I have yet to
[quoted text clipped - 14 lines]
> Yes, I have noticed that stuff that I have thought about or recollected
> often tends to stay in there.

So does mine.

Getting it out is a real problem!

Mary
Theo - 07 Feb 2005 19:48 GMT
>>> > I am getting regular CP seizures (intractable) and my memory is
>>> > like a sieve... some things stay in there, some don't, and I have
[quoted text clipped - 20 lines]
>
> Mary

Very true... for everyone. Thats why there is such a thing as reviewing
old material. Of course its harder for us because we have to do more
reviewing than the norm. But of course (again) those with ADD can have it
just as hard. But those that I know who have it are not even able to
concentrate on reviewing, let alone remember it. So while our short term
retention can be poor... its not for lack of trying :o)
turbinado - 08 Feb 2005 01:25 GMT
> >> It may have to do with how important it is... meaning that the really
> >> important stuff tends to roll around in your mind over and over. While
[quoted text clipped - 14 lines]
>
> Mary

Aye, there's the rub! The "files" aren't really deleted, they're just not
accessible at the time you want them...
Theo - 08 Feb 2005 16:49 GMT
>> >> It may have to do with how important it is... meaning that the
>> >> really important stuff tends to roll around in your mind over and
[quoted text clipped - 17 lines]
> Aye, there's the rub! The "files" aren't really deleted, they're just
> not accessible at the time you want them...

sounds like XP
Chris Lesurf - 17 Feb 2005 17:51 GMT
I find that I have to learn things to be able to remember them.* If I feel
I know something I'm trying to remember but cannot it to the surface, I
leave it for the moment. Later on I'll try again and sometimes it comes.
The other day I was trying to think what the groups of football teams were
called, found it the next day and now I've lost it again. It's not
important, because I don't want to talk to anyone else about it, just
frustrating. I think it begins with d . . . .

Chris L.

*rather like learning to play the piano - after a lot of practice one's
hands know what to do without the instructions having being made at the
surface being aware of the decisions.

In article <420756db$0$2654$4c56ba96@master.news.zetnet.net>,

> > Yes, I have noticed that stuff that I have thought about or recollected
> > often tends to stay in there.

> So does mine.

> Getting it out is a real problem!

> Mary
Mary Fisher - 18 Feb 2005 08:44 GMT
>I find that I have to learn things to be able to remember them.* If I feel
> I know something I'm trying to remember but cannot it to the surface, I
[quoted text clipped - 3 lines]
> important, because I don't want to talk to anyone else about it, just
> frustrating. I think it begins with d . . . .

Occasional dysphasia is a problem. When I do public speaking I take spouse
along as my prompt. If a word escapes me I turn my head very slightly
towards him and he says it, knowing my subject thoroughly. Why doens't he do
the talking? He's not as fluent as I am and not as articulate. He's heard
what I've said many times after 45 years ...

> Chris L.
>
> *rather like learning to play the piano - after a lot of practice one's
> hands know what to do without the instructions having being made at the
> surface being aware of the decisions.

Oh Chris, yes! My fingers will remember a piece even when I can't think of
the melody! In the same way, I touch type but sometimes have to look at a
keyboard to see where a particular letter is.

Mary
turbinado - 18 Feb 2005 21:05 GMT
> >I find that I have to learn things to be able to remember them.* If I feel
> > I know something I'm trying to remember but cannot it to the surface, I
[quoted text clipped - 21 lines]
>
> Mary

I'm the same way - I can touch type at quite a good speed, but damned if I
can remember what key goes where... Same for computer apps - I can use it
perfectly well, but if someone asks me how, I'm stumped...
Mary Fisher - 18 Feb 2005 21:26 GMT
> I'm the same way - I can touch type at quite a good speed, but damned if I
> can remember what key goes where... Same for computer apps - I can use it
> perfectly well, but if someone asks me how, I'm stumped...

What's a computer app?

Mary
turbinado - 20 Feb 2005 03:11 GMT
> > I'm the same way - I can touch type at quite a good speed, but damned if I
> > can remember what key goes where... Same for computer apps - I can use it
[quoted text clipped - 3 lines]
>
> Mary

A computer program.
Mary Fisher - 20 Feb 2005 11:08 GMT
>> > I'm the same way - I can touch type at quite a good speed, but damned
>> > if
[quoted text clipped - 8 lines]
>>
> A computer program.

Oh - an application?

Thanks.

Mary
turbinado - 21 Feb 2005 03:37 GMT
> >> > I'm the same way - I can touch type at quite a good speed, but damned
> >> > if
[quoted text clipped - 14 lines]
>
> Mary

Sorry for getting jargon-y on you! My hubby is a computer technician.
:)
Mary Fisher - 21 Feb 2005 10:05 GMT
> Sorry for getting jargon-y on you! My hubby is a computer technician.

I don't mind at all, I'm always keen to learn (even though it might not
stick).

There's a genuine need for jargon, all areas of knowledge have it. I dare
say I could use a lot of words which would leave you wondering ... I
certainly wasn't being critical.

If you want to know something you have to ask!

Mary
Sofia - 06 Feb 2005 23:36 GMT
> It may have to do with how important it is... meaning that the really
> important stuff tends to roll around in your mind over and over.

This isn't always true - I once woke up not knowing who hubby was, when he
was lying in the bed right next to me. I have to admit though, I did have
about 5-6 fits the day before, as I am prone to multiple seizures.

This also brings me to ask - do any of you ever get funny turns with your
memory loss, as if your senses are playing a different stupid game with
your mind each time, like seeing and hearing things that aren't really
there, thinking doctors and nurses are trying to kill you, and sometimes
complete loss of co-ordination where you can't even walk a few steps
without falling over?  

Sofie
kompressor - 07 Feb 2005 01:00 GMT
Sofie

Agree with you on that! The significance of the person, place or thing
means absolutely nothing after multiple seizures or a status episode. I've
often regained consciousness and not known my own house or family members.

Yes, just like you, I've thought that the doctors were going to kill me.
One time I looked at the doctor's wrist ID and told my daughter that his
name was Kilme and that meant he was going to kill me!

I believe that behaviour is referred to as 'post-ictal psychosis'. It sure
gives the family something to laugh about at family gatherings.

Fran
Theo - 07 Feb 2005 08:46 GMT
> Sofie
>
[quoted text clipped - 9 lines]
> I believe that behaviour is referred to as 'post-ictal psychosis'. It
> sure gives the family something to laugh about at family gatherings.

I havent had seizure where I lost consciousness for a few years now. But,
every time I did it took me time to know what my name was, where I was,
who was there talking to me (they were familiar but didnt know who they
were), or where things were. And after I regained some of my senses, I
would be overwhelmed with a huge sense of dread that basically my world
had collapsed. Cant say I ever had the feeling of people out to get me.
Mary Fisher - 07 Feb 2005 11:55 GMT
>> It may have to do with how important it is... meaning that the really
>> important stuff tends to roll around in your mind over and over.
>
> This isn't always true - I once woke up not knowing who hubby was, when he
> was lying in the bed right next to me.

That happened to me once. He'd shaved off his big beard without telling me.
After 17 years I didn't recognise him and wondered who the youth next to me
was ... and why ...

Mary
Theo - 07 Feb 2005 19:49 GMT
> That happened to me once. He'd shaved off his big beard without
> telling me. After 17 years I didn't recognise him and wondered who the
> youth next to me was ... and why ...
>
> Mary

Dont tempt me. I did that once and everyone was shocked. But then I started
missing it so it didnt take long for it to grow back :P
CyberCafe - 09 Feb 2005 06:31 GMT
> >> It may have to do with how important it is... meaning that the really
> >> important stuff tends to roll around in your mind over and over.
[quoted text clipped - 5 lines]
> After 17 years I didn't recognise him and wondered who the youth next to me
> was ... and why ...

I was at a family funeral and this good-looking guy came up to me and kind of
teased me.  Don't you know me, he said.  No, I didn't.  I looked at this
handsome young man for a long time and still didn't know who he was.  It was my
little brother.  He had grown a full beard, his hair was much longer, and he had
lost some weight.  Boy, I was embarrassed.

Barb

> Mary
Theo - 09 Feb 2005 19:52 GMT
> I was at a family funeral and this good-looking guy came up to me and
> kind of teased me.  Don't you know me, he said.  No, I didn't.  I
[quoted text clipped - 4 lines]
>
> Barb

especially if you had, shall we say, unsibling-like thoughts?
CyberCafe - 09 Feb 2005 06:27 GMT
> > It may have to do with how important it is... meaning that the really
> > important stuff tends to roll around in your mind over and over.
[quoted text clipped - 9 lines]
> complete loss of co-ordination where you can't even walk a few steps
> without falling over?

The thing you said about the doctor and nurses trying to kill you is familiar
to me because it's, at least for me, part of the fear component of my complex
partial seizures.  I was real leery of almost all people because I thought
they were drugging me, poisoning me, or something because there was no other
explanation in my mind for how I felt.  It was so bad I feel I was a danger to
myself and potentially to others because I was terrified so often.  That was
before I knew I had epilepsy, before medication, and before I knew more about
it.  If I do start to have seizures again, that particular symptom is much
milder (thank you Dilantin!), and I can basically talk to myself for comfort
because now I know what's happening and what's causing it.

One thing I don't like is when I've told others about this and they don't
think it is as bad as I described.  They try to minimize it and make it less
serious, less important, less intense than it really was.  That's so
aggravating.

Barb

> Sofie
Mary Fisher - 09 Feb 2005 14:48 GMT
>> > It may have to do with how important it is... meaning that the really
>> > important stuff tends to roll around in your mind over and over.
[quoted text clipped - 34 lines]
> serious, less important, less intense than it really was.  That's so
> aggravating.

To me, their attitude would be worse than aggravating. But they're not worth
bothering about, they know nothing and should be ignored. One day it might
happen to them and they'll get their come-uppance, until them take the
superior attitude!

Mary

> Barb
>
>> Sofie
G.Ross - 09 Feb 2005 14:51 GMT
>> > It may have to do with how important it is... meaning that the really
>> > important stuff tends to roll around in your mind over and over.
[quoted text clipped - 28 lines]
> comfort
> because now I know what's happening and what's causing it.

> One thing I don't like is when I've told others about this and they don't
**************************************
> think it is as bad as I described.  They try to minimize it and make it
> less
[quoted text clipped - 3 lines]
>>
>> Sofie

 One of the things I had that first made 'taking control' more difficult
was a feeling of guilt that it was somehow 'my fault', and I should just
learn to 'snap out of it'.
 Even if they described things I had done during a Complex Partial that I
had no memory of afterwards,  they somehow thought I "should" remember what
I did, or what happened.    I had just come to expect that waking up on the
floor, in Emerg. or somewhere I didn't know how I got there, as the 'new
normal'.
  Thank Heavens for my Neuro !  He was the first (at that time *only)
person who didn't suggest it was 'my fault' these were happening.   No
wonder, 200 years ago they used to lock up people they didn't understand or
thought were 'possessed'.  Sometimes we Are 'possessed',  but it's possessed
by a Seizure before it generalizes.

That's why I usually point new people to Julie's Idaho 'First Aid Chart'
for symptoms that are Normal for each seizure type or the whole Site, or
Howdy Dave's Site.

 While I first had a Fear about these apparently random Losses of
'Control',  there was also fear of potential injury or harm (to me) since if
I went into 'the Twilight Zone',  my sense of Fear or Self-Safety seemed to
go on Vacation.  This Medic Alert Bracelet paid for itself within the first
4-6 months I got it, before I reached full control.
   I had been told at the time that these were the New Normal and I should
expect I *might have them 2-3 times a month.   Last one was June 1998, but I
still take the same pill regimen I was using from about 1995. Brain Fog
still comes around, but the stronger Auras, which produced panic back then,
seem to have subsided.  But that took Pill changes, tests, and adjustments
up and down from 1993 to 96.
  Memory Loss is still there, but that preceded the seizures by 14 years
(same brain area -- Rt. Temporal Lobe in my case).  G./
Mary Fisher - 09 Feb 2005 16:41 GMT
>> One thing I don't like is when I've told others about this and they don't
> **************************************
[quoted text clipped - 9 lines]
> was a feeling of guilt that it was somehow 'my fault', and I should just
> learn to 'snap out of it'.

I've had that feeling, it's worse than others telling you to do it.

Unless those others are very close to you and you want them to love you and
not discount your lack of control :-(

Mary
turbinado - 10 Feb 2005 01:09 GMT
> >> One thing I don't like is when I've told others about this and they don't
> > **************************************
[quoted text clipped - 16 lines]
>
> Mary

That's the first thing I do when I come out of a seizure - start apologizing
to whoever's around me. They usually tell me not to apologize, but I can't
help it - I feel so guilty for putting them through the ordeal of witnessing
it. :(
Mary Fisher - 10 Feb 2005 10:42 GMT
>> >  One of the things I had that first made 'taking control' more
>> > difficult
[quoted text clipped - 16 lines]
> witnessing
> it. :(

Hey! You're not "putting them through" anything! you're not doing it
consciously!!

Would you expect someone who had a fit which you witnessed to feel guilty?
Of course you wouldn't.

It's  privilege to be there for people.

Hugs,

Mary
Chris Lesurf - 17 Feb 2005 18:08 GMT
I try to make sure that people have understood what has happened as I used
to be worried that a friend who had it before me was going to have a fit.
Yesterday I felt a fit coming on while in a shop. I tried to cover up my
aura and escape before the actual fit. I thought I had but went back to
the shop to ask today. I was told that the young lady who had been serving
me realised something was wrong but thought I was well enough to go out on
my own. That's what suits me because during the 33yrs I've had epilepsy I
have occasionally had little accidents but haven't done anything dangerous.

Chris L.

> > That's the first thing I do when I come out of a seizure - start
> > apologizing
> > to whoever's around me. They usually tell me not to apologize, but I can't
> > help it - I feel so guilty for putting them through the ordeal of
> > witnessing
> > it. :(

> Hey! You're not "putting them through" anything! you're not doing it
> consciously!!

> Would you expect someone who had a fit which you witnessed to feel guilty?
> Of course you wouldn't.

> It's  privilege to be there for people.

> Hugs,

> Mary
G.Ross - 10 Feb 2005 15:24 GMT
>> >> One thing I don't like is when I've told others about this and they
>> >> don't
[quoted text clipped - 26 lines]
> witnessing
> it. :(

 I agree (already) with what Mary posted below this post of your's.
We've just Educated someone on what a Seizure looks like.   One person in
30?  (3%?) have some type of seizure disorder, and it's Important they know
what these look like and  many (I found) decide they'd like to know what to
do *next time, and how to tell that it's not a Heart Attack or Stroke that
might need an Ambulance.

 You gave them a 'free' CPR-101a   lesson.  How many things are Free any
longer?

 A couple of times I was able to show the Security Guards (near where I
live)  instructions on what I 'likely do' while Away, how to tell it's a
seizure, about checking if someone wears a Medic Alert bracelet (even if
it's not a seizure), and how they could help best when I come 'back', so
they don't need to call an Ambulance.
  I was surprised how many were in charge of a fairly large Centre's
'Security', but had never been taught about Medic Alert or above 'CPR 101'.
(That's Cardio-Pulmonary Resusitation in case it's not called CPR
elsewhere..)    /G.
Mary Fisher - 10 Feb 2005 16:09 GMT
> We've just Educated someone on what a Seizure looks like.   One person in
> 30?  (3%?) have some type of seizure disorder, and it's Important they
[quoted text clipped - 4 lines]
>  You gave them a 'free' CPR-101a   lesson.  How many things are Free any
> longer?

Great stuff :-)

>  A couple of times I was able to show the Security Guards (near where I
> live)  instructions on what I 'likely do' while Away, how to tell it's a
> seizure, about checking if someone wears a Medic Alert bracelet (even if
> it's not a seizure), and how they could help best when I come 'back', so
> they don't need to call an Ambulance.

Clever!

>   I was surprised how many were in charge of a fairly large Centre's
> 'Security', but had never been taught about Medic Alert or above 'CPR
> 101'.
> (That's Cardio-Pulmonary Resusitation in case it's not called CPR
> elsewhere..)    /G.

Goodness knows what it's called. They seem to have different names according
to fashion, age and what's recently been thought of :-(

The last time I had a general anaesthetic I drew a large permanent black
ring round my leg where I didn't want an injection (there's internal scar
tissue from an ancient wound which doesn't show on the surface and it's very
painful when a needle's stuck in it but it's a favourite place for them to
do it as I know from experience). I also wrote the words "No Needles" on the
back of my right hand because that arm is prone to lymphoedema.

A nurse scoffed and asked why I'd done that and that the nursing staff knew
more than I did about it and blah blah ...

I explained why to the anaesthetist and she said it was a jolly good idea to
let them know.

So sucks to clever dicks.

It's a very good idea for us to explain even to 'professionals' what's
special about us and how we want to be managed. They can't know everything.

Mary
Chris Lesurf - 17 Feb 2005 17:59 GMT
For nearly 30yrs, I was able to live with my epilepsy then I began to get
panic attacks etc and it took about 3 yrs to persuade doctors that there
was anything else wrong with me. Eventually, bi-polar syndrome (manic
depression) was diagnosed and I was prescribed an anti-depressant. Some
drugs are used for both epilepsy and bi-polar syndrome. They include
carbamazepine and .. er .. I can't remember the other one I have known.

Chris L.

> The thing you said about the doctor and nurses trying to kill you is familiar
> to me because it's, at least for me, part of the fear component of my complex
[quoted text clipped - 6 lines]
> milder (thank you Dilantin!), and I can basically talk to myself for comfort
> because now I know what's happening and what's causing it.

> One thing I don't like is when I've told others about this and they don't
> think it is as bad as I described.  They try to minimize it and make it less
> serious, less important, less intense than it really was.  That's so
> aggravating.

> Barb

> > Sofie
G.Ross - 06 Feb 2005 17:36 GMT
> I am having trouble remembering that I am having seizures (amongst
> forgetting everything else!)and think that I am alright for working a
[quoted text clipped - 5 lines]
> How about memory problems? Anyone have problems with remembering recent
> events. That is, memory problems due to the seizures themselves???

**G* That might depend on the area where your seizures seem to start (the
seizure focus on some med. sites).     I found (years later) that the
Temporal Lobes (just behind cheeks above the mouth on any pictures you
find), are the Short Term Memory buffers, where new learning and things you
hear or read get put first.
   Then if something's 'worth remembering' over a long period, it gets
shuffled off to another area for long term storage.   Some of us, like me
and possibly you, who either have damage in one of those T.Lobes, or a
disruption in their functioning, can have problems with learning new things
and recall.
  If I want to remember something it will need to be filed into a folder
(on this computer) or written down, and that's why I keep a written 'log' of
times I take medications, a pill case that reduces risk of taking 2 doses by
mistkae, and any side effects. (I used to see my Neuro each 4-6 weeks when I
was first diagnosed in 1993).

  The only medication below I recognize (and used) is Dilantin, and I was
only able to use it about 6-8 months before we phased it out and replaced it
with Tegretol CR, and later - about 2 years- reduced the Tegretol but added
Frisium (Clobazam) with it for Complex Partial (T.Lobe) control.    /

> Maybe it's not the seizures at all but the medications heh? I am taking
> 400mg topiramate, 400mg dilantin, and I just added it up but wow, 3600 mg
> of gabapentin (doesn't that seem like an awful lot to anyone now that I
> think about it ???)  along with a 100 mg of sertraline for my PTWS
> (supposedly) daily...

**G* If you want to look through the http://efa.org site it has a
medications glossary with info. on various anti-ep meds. Or your Pharmacist
might have some e-links on the medications you're using if you ask them.
There are others around here you've probably chatted with who have used some
of the other meds.
 (I got a one page printout with first prescription filling of my pills,
listing what to use with them and what to avoid or be careful with.  Many
suggest care with alcohol until we know how it interacts with our pills, and
some over the counter cold or upset stomach 'cures'.  Tegretol now has an
advisory that Grapefruit juice can interfere with its full control.)

 As for the 'milligrams' of one med. versus another, 80 milligrams of e.g.
topiramate, are not directly comparable to 80 milligrams of the gabapentin.
Each one has different levels of effect depending where it targets, and any
interactions, when you get beyond 1 or 2 of them, can affect how the others
function.   That's where the Pharmacists and Doctors come in.   It's also
where I had hoped some others would have come in here, if they recognized
some of the meds. or had used a similar combination to what you were put on.
/G.

> Curious and not sleepy :)
> ~..~
> owlvee

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