Well I did it. I had my first big one. I don't like it. I don't want another one.

Thread view:

Enable EMail Alerts

Start New Thread

Thread rating:

montynaa@hotmail.com - 14 Dec 2003 03:12 GMT

I don't want to be part of this group. I want my brain back under my
control again.

Three days ago I came to awareness with my three boys crying and
hysterical. There was an ambulance on the way. I had bit through my
tongue and was frothing and choking on blood. It was horrible. Every
muscle in my body hurt like you wouldn't believe. I didn't know a body
could hurt that much. It still hurts. My tongue still has a dime-sized
numb spot on it that is driving me nuts.

And my poor babies (16, 15 and 10) were so scared. That was the worst
of all, that this happened in front of them. My oldest came in to wake
me up in the morning and this all started then.

I've been having simple partials for the last 14 years and was in the
midst of a cluster of those, hadn't slept well, was under horrible
stress with a sick parent, period had just started AND had just been
on Paxil for three weeks. I'm hoping that all those together put me
over the top just one time only, and I'll never-ever-ever have another
one like that. It was beyond horrible. Everything still feels unreal
around the edges.

Do you have any idea how complicated life gets as a single mom with
three active boys in the middle of
basketball/choir/orchestra/Christmas season when you all-of-a-sudden
can't drive? Please tell me there is an easy fix for this!

I had another waste-of-time EEG. Who knows, maybe this one will
actually show something. They started me on Topamax 25 mg, and I'll
see the neurologist next week.

The worst part is not feeling like me. I think I can deal with
everything else, but I don't feel like me anymore. This goes away,
right? And I'll never have another one, right?

Reply to this Message

M - 14 Dec 2003 07:55 GMT

>I don't want to be part of this group. I want my brain back under my
>control again.

<..snip..>

I am lucky (so far) and 25 years of partials/complex seizures have never
mutated into anything worse despite missed nights, missed meds etc. But
your post shows that things can go wrong at anytime and I feel for you
as I realise it must have been one hell of a shock. Probably equal to
the original diagnosis.

I can relate very much to your post, as I know what turmoil it would
cause to me - at least I know the post-seizure "I'm not me" feeling. I
wish you all the best in adapting to things, and hope that it is your
one and only GM. I think when epilepsy or a change in seizure strikes
when life is 'sorted' it is more difficult to cope with than having it
from childhood. I may be wrong, but best wishes anyway - you have my
sympathy.

Signature

Malcolm

Reply to this Message

montynaa@hotmail.com - 14 Dec 2003 16:56 GMT

I've never been on meds before, so this is my first experience. So far
I've been getting a little dizzy, but I'm not sure if that's the
Topamax or still a bit of post-ictal crap.

The unrealness after this one was uncomparable to that after the
partials. A whole 'nother ball game. I am grasping at every statistic
I can find supporting the belief that it will never ever happen again.

Today, it finally starts to feel like things are coming back to normal
around the edges at least.

Reply to this Message

Mary Fisher - 14 Dec 2003 17:34 GMT

> I am grasping at every statistic
> I can find supporting the belief that it will never ever happen again.

I'm not sure that's a good idea. If you believe that and it does happen
again you could be in an even worse state.

I'll illustrate that from my personal experience. I have breeast cancer.
When I went for my check up in June the doctor, thinking to please me, used
the C word, he said that I was cured.

That's a cruel thing to say to anyone who's already had the bad news of
their diagnosis. He wouldn't have been able to guarantee that I'd never have
a recurrence, that I wouldn't develop secondaries, that I'd never need to
see an oncologist again. I was angry and told him that he shouldn't say
that. I'm tought but not all women are, when they get their initial
diagnosis they feel that it's the end of the world. Gradually they learn
that it isn't but most accept that they can't hope for a 100% cure. To be
told by a medic that they are cured could raise their hopes only to be
dashed. We have a saying that you can never say you're cured of cancer until
you die of something else.

I hope that's clear, sorry if it isn't.

Why not accept that it might happen again and learn to accept and cope? Many
people with epilepsy do, you won't be the first. It could be that the best
you can expect, probably, is that the gaps between are far longer than the
events themselves. The gap could last for the rest of your life, but no-one
can guarantee it.

> Today, it finally starts to feel like things are coming back to normal
> around the edges at least.

I'm pleased for you. Make the most of it. Life is sweet.

Mary

Reply to this Message

Ann - 14 Dec 2003 21:17 GMT

I DON'T HAVE SEIZURES, BUT MY THREE SONS DO. MY OLDEST SON IS 20 AND I HAVE WATCHED HIM BEFORE, DURING AND AFTER A GM. I CAN TELL YOU THAT ACCORDING TO HIM, THINGS WILL RETURN TO NORMAL, WHATEVER NORMAL IS. I ALSO KNOW THAT A LOT OF HOW YOU FEEL MAY BE FROM THE MEDICATION, YOUR BODY NEEDS TO ADJUST TO TAKING IT. I WISH YOU ALL THE BEST AND WISH THAT THERE WAS MORE THAT I COULD DO FOR YOU. YOUR CHILDREN WILL BE YOUR STRENGTH AS YOU GET THROUGH THIS. MY PRAYERS ARE WITH YOU.

ANN

Reply to this Message

CyberCafe - 15 Dec 2003 01:27 GMT

> I don't want to be part of this group. I want my brain back under my
> control again.

Boy, that's understandable!

> Three days ago I came to awareness with my three boys crying and
> hysterical. There was an ambulance on the way. I had bit through my
[quoted text clipped - 14 lines]
> one like that. It was beyond horrible. Everything still feels unreal
> around the edges.

Were you taking meds for the partials? I'm not sure which
anti-depressants, but some of them are not recommended for people with
seizures. Check with your doctor or pharmacy about that anti-depressant.
If you are on epilepsy meds, when was the last time you had a blood level?

Hey, now I've got to scold because it sounds like you are forgetting that
you have epilepsy. Just because you think your epilepsy is under control,
it is still there. You still have to abide by some of the rules, which
includes getting enough sleep, alcohol control and all that other good
stuff. Have you been a good girl about these things? Of course, I
realize that even if you did have enough sleep and abided by the rules,
this big seizure still might have happened. I mean, for example, if
hormones are involved, there isn't a lot you can do about that.

> Do you have any idea how complicated life gets as a single mom with
> three active boys in the middle of
> basketball/choir/orchestra/Christmas season when you all-of-a-sudden
> can't drive? Please tell me there is an easy fix for this!

Find out if you can get a limited license to drive. I know one person
with grand mals whose license allows her to drive back and forth from
work.

> I had another waste-of-time EEG. Who knows, maybe this one will
> actually show something. They started me on Topamax 25 mg, and I'll
[quoted text clipped - 3 lines]
> everything else, but I don't feel like me anymore. This goes away,
> right?

Yeah, it's possible to return to feeling normal again although I think a
person gets spooked and a little leery.

> And I'll never have another one, right?

You gotta be kidding! Heaven only knows.

Barb

Reply to this Message

Form@C - 15 Dec 2003 22:58 GMT

On Sat, 13 Dec 2003 19:12:34 -0800, montyna wrote:

> I don't want to be part of this group. I want my brain back under my
> control again.

yeah - I know that one!

> Three days ago I came to awareness with my three boys crying and
> hysterical. There was an ambulance on the way. I had bit through my
[quoted text clipped - 6 lines]
> of all, that this happened in front of them. My oldest came in to wake
> me up in the morning and this all started then.

being woken up, or forcing myself awake, tends to trigger me too. Its not
nice, but you learn to live with it rather than fight it. You arn't alone
- there are a hell of a lot of us around...

> I've been having simple partials for the last 14 years and was in the
> midst of a cluster of those, hadn't slept well, was under horrible
[quoted text clipped - 3 lines]
> one like that. It was beyond horrible. Everything still feels unreal
> around the edges.

You have to face it, you have had a GM and it is very possible that you
will have another sometime. It isn't the end of the world (if it was I
would be in a right state by now!). The "unnatural" feeling will fade. It
usually takes me the best part of a week to get back to "almost" normal,
and it probably takes about another week to really get back, but I don't
really notice. Of course, all this is providing that I haven't dislocated
my shoulder again while I'm out... The local A&E is getting to know me
quite well now. :-)

Dunno. I've never been able to have a licence. I qualify for a "disabled"
bus pass now though! :-)

You *will* recover. You may not notice the transition though. You will
probably just get back into your normal routine and the whole episode will
be just a vague memory... It's a horrible feeling, I know, but it is only
temporary. It is just your brain getting back into gear! :-)

I'm not going to attempt to reassure you that you'll never have another.
It wouldn't be fair on you and it wouldn't be truthful. You *may* not have
another, you *may* have another that is less of a problem because of your
medication.

Avoid alchohol (even "just a bit" if possible). Try to let yourself wake
before getting up. Forcing yourself is not good. Don't attempt anything
"fiddly" or difficult for the first hour or so after getting up - that
really ties in with letting yourself wake up. Don't forget to take your
medication - and make sure that you order repeat prescriptions in time!

Signature

Mick
http://www.nascom.info for Nascom & Gemini information
Also at http://www.mixtel.co.uk where the collection started.
Currently deserting M$ for linux... :-)

Reply to this Message

Dona - 15 Dec 2003 23:49 GMT

Thank you all. I am going to be keeping my fingers crossed that the GM was
just from the Paxil. The thought of possibly having another one is past the
point of scary and my brain just won't go there.

I really hate the partials, and hopefully being on the Topamax will get rid
of them once and for all too. Hopefully I, and those who have to live with
me, will be able to life with the side effects.

Right now I'm not sure if all this yuck is post-ictal or from the measly
25-mg of Topamax. I can't imagine such a tiny dose would wreck such havoc.
Good Lord! How bad will it be up in the 100s? Do the side effects go away?

AND WHEN WILL MY TONGUE UN-NUMB!?!? I have always thought people with
peirced tongues were strange, but now I believe they must be downright
deranged. How/Why on earth would you willingly put yourself through that
much pain?

Reply to this Message

SimonP - 16 Dec 2003 09:34 GMT

montynaa@hotmail.com wrote in article
<82d6d934.0312131912.7bc94035@posting.google.com>...

> I don't want to be part of this group.

Which group?
This NG? Why not? You are in a situation, best to look for the best
support possible. Not saying this is the best support you'll get, it
isn't, that'll come from your nearest and dearest, but this is a good
surrogate when the others for 1 reason or another aren't about. I've
only been reading this NG for a couple of weeks and have found it very
useful.
Epileptics? Tough, I'm afraid. Some people grown out of it, some can
be operated on to get rid of it, some are fully controlled with drugs,
some partially and some not at all. It took me about 5 years (16-21)
to come to terms with it and get on with my life, others it must have
taken longer and others less. I think you see what I'm saying we
are all different in causes, symptoms, attacks, control and how we
deal with it. But in all the things I have tried, I've found the best
thing is to meet it head on. Find out what does and what does not
trigger fits; what drugs work, what don't; then play by the rules.
This way you can then concentrate on living.

>I want my brain back under my
> control again.

Yep, don't we all. Trouble is it does some things we don't ask it to
like blinking, breathing, keeping the heart pumping, walking,
writing and talking without having to think about it. Trouble is our
brains also seem to want to go the extra mile and that's when the
trouble starts.

> Three days ago I came to awareness with my three boys crying and
> hysterical. There was an ambulance on the way.

Had the boys called it? Shocking and frightening as it was for them
at least they were able to remember to do this. Your kids are old
enough to at least understand what is happening and what to do, the
older 2 especially my 2 are 5 years old we have taught them to speed
dial my mother if my wife isn't about, or to get someone to get my
mobile and call my wife if we are out. Had you told your kids about
your epilepsy and what to do should you have a fit? They NEED to
know.

> I had bit through my
> tongue and was frothing and choking on blood. It was horrible. Every
> muscle in my body hurt like you wouldn't believe.

Actually I think you're probably wrong, a lot of us could believe how
much your muscles hurt I'm wiped out for at least 24 hours, up to a
week sometimes, after a tonic clonic (grand mal? Still getting used to
the terminology 19 years later ;-). Initially I find it hard to even
walk or lift a drink. If we could find a way to give our muscles a
regular work out like they get during a fit we would be the fittest,
strongest people on the planet.

> I didn't know a body
> could hurt that much. It still hurts.

It will for a while, but everything will settle down soon.

> My tongue still has a dime-sized
> numb spot on it that is driving me nuts.

Arrrgggghhh!! The 2 signs I've had a fit are 1 I come to feeling
groggy and not sure where I am the other is quick feel of my tongue.
I bite mine the complete length of both sides (and once all the way
round the tip too!). People that know me know me know I won't swallow
it while I'm biting it (though I've been told it is medically
impossible to do so anyway). It is a nightmare for at least a week,
by then it is still tender but I can eat pretty much what I want. Try
a dab of MarmiteNO DON'T I was only joking, I love the stuff but
that is the last thing I can eat again :-(

> And my poor babies (16, 15 and 10) were so scared. That was the worst
> of all, that this happened in front of them. My oldest came in to wake
> me up in the morning and this all started then.

Your babies aren't too young to understand or help in the situation,
make sure they understand what is happening, why and what to do. If
need be get them on a 1st aid course, that'll help them anywhere.
Your oldest may be blaming himself ensure that he knows it isn't his
fault and that you in no way blame him at all.

Stress is not a good thing for epilepsy, not always avoidable but
where possible focus on what the stress will actually help you with.
That's right nothing. Then think what the worst will be if you are
late for this or don't do that on time or can't arrange the other.
Anything that doesn't matter can wait, this gives you extra time,
money, concentration or whatever to devote to things that truly need
to be done. I know this is very easy to say but just trying to
prioritise like this can help.
As others have said, being woken suddenly can have a bad affect. I
will lie in bed for a couple of minutes before swinging my legs over
the edge. I'll sit there for a couple more minutes before going to
the loo then downstairs for a cigarette. Coming back in, I'll switch
on the kettle and the next moves depend on whether I'm going to work
or not. If I'm late getting up? Then blow it I'll try and make up a
little time by not having a full cup of coffee or a 2nd cigarette or
something, but if this isn't enough I'll be late and if that's not
acceptable well, tough!

No experience as a single Mum ;-) But, yes I can see where you are
coming from and I find the loss of my license just about the most
difficult thing. Everything else is over in a matter of minutes,
hours, days or weeks, in the UK we cannot drive for at least a year.
AIUI the US has different laws so I can't help there, other than speak
to the doctors and the licensing department and find out what can be
done and what has to be done. If you don't have a car I'm sure there
are other ways around. Basketball, choir and orchestra are all group
activities can someone else in these help? At Christmas again there
tends to be several people go to a single location can any of these
help? What is the public transport like? What are the cabs like? Can
you get an allowance or passes due to your disability (if you have to
stop driving you have been disabled)? Is your oldest old enough to
drive? There are ways and means, just not necessarily the easiest,
cheapest or most convenient. Just remember, your car is a guided
missile, it's fine while you're guiding it but stop guiding it and how
many people will you affect?

> I had another waste-of-time EEG. Who knows, maybe this one will
> actually show something. They started me on Topamax 25 mg, and I'll
> see the neurologist next week.

It seems, from what I've read in the last couple of weeks, it is rare
for an EEG to actually show anything, but you never know. See if
they'll do any other tests Cat scan (brain X-ray), MRI scan (very
detailed scan of the brain). I had both and neither showed anything,
though unlike a lot of people I know I know I've got a brain, I've
seen the pictures :-)

> The worst part is not feeling like me. I think I can deal with
> everything else, but I don't feel like me anymore. This goes away,
> right?

Yes, it does. You are still a little dazed from the whole episode,
you body doesn't feel like your own, your tongue likewise. Slowly
everything will come back together and you probably won't be able to
put your finger on the exact time it does.

> And I'll never have another one, right?

What do you want to hear? I think you know the answer to this one
already, your conscious mind is just struggling to accept it. We all
want to believe the last one was "The Last One" and for some that will
be the case. You can improve the odds, there has been plenty of good
advice, follow it. Play by the rules and remain positive that this is
your condition but it ain't going to beat you.
Dave ©¿© (Howdy Dave?) posted a list of famous people that had/have
epilepsy in the "Introduction and a question" thread, have a read of
that and see what has been achieved by them.
HTH, best of luck with everything.
--
Simon
Also in the UK

Reply to this Message

Dona - 16 Dec 2003 13:41 GMT

Thank you. Simon. Thank you all. Being able to come here has helped
immeasurably.

I do live in a incredibly supportive, one could even say somewhat intrusive
community and will be able to find ways around.

And the stress...well the stress is just going to just get worse. My
wonderful, don't-worry-baby-I'll-always-fix-everything-daddy is dying at 83
of multiple myeloma. Not a fixable stress. But also not a stress I'm willing
to add to for the family, so I'm getting a handle on this myself so no one
else has to.

And of course I can come here and whine regularly.

Reply to this Message

M - 16 Dec 2003 16:36 GMT

>Thank you. Simon. Thank you all. Being able to come here has helped
>immeasurably.
[quoted text clipped - 9 lines]
>
>And of course I can come here and whine regularly.

We all come here and whine regularly, so you would be amongst
understanding friends.

You will always be welcome. Stay awhile to let us know how things are
going?

Signature

Malcolm

Reply to this Message

Don - 05 Jan 2004 18:53 GMT

I know the feeling exactly. 2 1/2 years after a fairly severe TBI, I
had my first grand mal seizure in the middle of the night. I have
four kids - one 10 year old and three 8 year olds - and they had two
friends sleeping overnight. Quite a traumatic event for all.
Gratefully, my wife(who has always been my hero!) was there and got me
into the hospital - had to have stitches in my tongue it was cut so
badly! Now they put me on Dilantin and I'm getting used to it. I
really hate this feeling, though, of not knowing if or when I might
have another seizure. And it really ticks me off that my family had
to go through that and might again! Sure takes a chunk out of your
confidence and self-trust. I was glad to find this group. Thank
you... Don

> >Thank you. Simon. Thank you all. Being able to come here has helped
> >immeasurably.
[quoted text clipped - 15 lines]
> You will always be welcome. Stay awhile to let us know how things are
> going?

Reply to this Message