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Dr. Rev. Chuck, M.D. P.A. - 26 Oct 2003 21:28 GMT

Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
of 1 per month.

From those numbers alone, what are my chances of permanent remission?

Reply to this Message

CyberCafe - 27 Oct 2003 15:51 GMT

> Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> of 1 per month.
>
> From those numbers alone, what are my chances of permanent remission?

Gee, I don't think anyone could give you a reliable answer on that one.

Additional info at:
http://www.update-software.com/abstracts/AB001902.htm
http://www.epilepsy.org.uk/news/archive/2000/20001218.html
http://www.medscape.com/viewarticle/459412_8

Above links found using the keywords "epilepsy remission" on the google
search engine.

Barb

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Bob - 27 Oct 2003 19:04 GMT

> Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> of 1 per month.
>
> From those numbers alone, what are my chances of permanent remission?

Please do me a favor and describe what your "aura" is. Does it involve
any motor activity or anything physical? or is it just a strange
feeling?

Thanks

Bob

Reply to this Message

Dr. Rev. Chuck, M.D. P.A. - 28 Oct 2003 07:12 GMT

> > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > of 1 per month.
[quoted text clipped - 8 lines]
>
> Bob

Deja vu and taste of 9v battery terminals and garlic. No motor activity.

Reply to this Message

Bob - 28 Oct 2003 05:36 GMT

> > > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > > of 1 per month.
[quoted text clipped - 10 lines]
>
> Deja vu and taste of 9v battery terminals and garlic. No motor activity.

Thanks much! That fits in with what I thought an "aura" is. In my own case, I
don't get the tastes & odors, but get "feelings" and memory flashbacks of
previous times that I've had those feelings or "that feeling". That memory
flashback would be somewhat like the deja vu. "That feeling" is totally
mental and impossible to describe to the average person or doctor, but I've
always assumed that anyone else with epilepsy would know what I was talking
about.

Thanks again!

Bob

Reply to this Message

Rick - 29 Oct 2003 23:39 GMT

> > > > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > > > of 1 per month.
[quoted text clipped - 22 lines]
>
> Bob

Hi Bob,

As another sufferer I'm interested in your "aura" as I have had occurences
of my own that I have not been able to explain to other people or doctors.
They appear to listen but look at you as if you are off your trolley so to
speak. My 'auras' have taken the form of either the feeling of being watched
by something sinister (sort of the effect people get from 'scary' movies
only for real), or the senasation of watching oneself a sort of out of body
experience.

Have you heard of this before or has anyone else experienced anything
similar?

Cheers
Rick

p.s. To Dr. Rev. Chuck, I sincerely hope that you have got remission, but I
wouldn't give up on any medication because from experience it's a big risk.
Even though I hate taking the things I wouldn't try and stop again. Good
luck :-)

Reply to this Message

K.B. - 30 Oct 2003 06:16 GMT

>> As another sufferer I'm interested in your "aura" as I have had

occurences

> of my own that I have not been able to explain to other people or doctors.
> They appear to listen but look at you as if you are off your trolley so to
[quoted text clipped - 7 lines]
>
> Cheers

I get the out of body type of experience. I feel like I see myself with a
ponytail. it's hard to explain. I told a dr. once but he thought I had
emotional problems. glad to hear it from you.
Kris

Reply to this Message

gaross - 30 Oct 2003 17:12 GMT

Comments about Aura link at ***s near end.

> > > > > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > > > > of 1 per month.
> > > > > From those numbers alone, what are my chances of permanent

remission?

> > > > Please do me a favor and describe what your "aura" is. Does it

involve

> > > > any motor activity or anything physical? or is it just a strange

feeling?

> > > > Thanks
> > > > Bob
> > >
> > > Deja vu and taste of 9v battery terminals and garlic. No motor

activity.

> > Thanks much! That fits in with what I thought an "aura" is. In my own

case, I

> > don't get the tastes & odors, but get "feelings" and memory flashbacks of
> > previous times that I've had those feelings or "that feeling". That

memory

> > flashback would be somewhat like the deja vu. "That feeling" is totally
> > mental and impossible to describe to the average person or doctor, but

I've

> > always assumed that anyone else with epilepsy would know what I was

talking

> > about.
> > Thanks again!
[quoted text clipped - 8 lines]
> only for real), or the senasation of watching oneself a sort of out of body
> experience.

**** G. If you might class your aura as a feeling of 'fear or foreboding' it
might be grouped under one of the Temporal Lobes (new sites might call them
Complex Partial seizures). One of Julie's Posts is still up on my server.
At end she includes her Idaho Website address. If you click to that, then
find a link to 'First aid for seizures' -- under the ~5 types it includes a
description of any sensations or auras that might present as part of a
seizure onset of each type. There are about 5 types- for Right Temporal
Lobe or Left Temporal Lobe the sensations can be taste or odour that's Sour
or lemony (Rt.), or Acrid or Eggy (Left). Also a feeling of Deja Vu (Rt.)
or Jamais Vu (Left) -- where your own place might seem strange, are standard
Auras that might present.

**IF YOU have a DOCTOR who's looking at you strange when you describe those
auras, perhaps it's time to ask for a Referral to someone who's **trained in
handling Seizures and Seizure conditions.
The Auras are Standard Markers of various seizure types, and if the
Doctor isn't aware of that, you won't likely get much help wrt Medications
OR treatments from them. It's something they're not able to handle or
prescribe for.
That's Unless they were reacting as recognizing that it Was one of the
seizure types. Did they prescribe any Medications for you? Perhaps if you
listed any here, someone who's used that type will know which seizure type
it's for, or if it's for one of the types I mentioned above. (Dilantin,
Tegretol and Frisium are ones I've used for C.P. Seizures, for example, but
which might not work for some Other seizure type in another area of the
brain.) //

> Have you heard of this before or has anyone else experienced anything
> similar?
[quoted text clipped - 5 lines]
> Even though I hate taking the things I wouldn't try and stop again. Good
> luck :-)

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Bob - 30 Oct 2003 17:16 GMT

> <snip>
> > > >
[quoted text clipped - 27 lines]
> They appear to listen but look at you as if you are off your trolley so to
> speak.

Hi Rick

Isn't it amazing? You would expect a doctor (specialist type) to have seen &
heard the full gamut of symptoms as reported from many patients and immediately
know what you were talking about. But instead there is that blank look on their
faces.

> My 'auras' have taken the form of either the feeling of being watched
> by something sinister (sort of the effect people get from 'scary' movies
[quoted text clipped - 3 lines]
> Have you heard of this before or has anyone else experienced anything
> similar?

Mine aren't currently like that. They're more of a very strange indescribable
feeling/sensation for a few seconds that is only in the head and doesn't effect
any other part of the body. They do, though, have a mental & emotional component
and I can understand what you are talking about.

Bob

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Rick - 30 Oct 2003 21:53 GMT

Hi,

It's nice to hear that I'm not the only one experiencing these 'auras' or
the only one getting the "he's off his trolley" response. Perhaps I should
give them the benefit of the doubt and assume that they are recognizing the
symtoms I'm describing - at least I won't feel so bad describing them.

For anyone that's interested I take Phenytoin Sodium 350mg per day - I
actually take the Epanutin form in capsules because I had problems (skin
rashes etc..) a few years back with the Phenytoin tablets.

Rick

Reply to this Message

Mike - 07 Nov 2003 15:27 GMT

hi everyone,
seems we all have this aura thing in common. haven't had one for several
months, and even then, it was very minor.
I had a chat with my doc the other day as I was/am concerned about the side
effects my epanutin (phenytoin) might be having on my system. As I am on
400mg per day, I asked if I could stop taking this "muti". He said I could
give it a try.
Have any of you stopped on this kind of dosage and what were the
consequences? I have only ever suffered weird auras....no black-outs or
convulsions.
cheers
Mike

> > > > > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > > > > of 1 per month.
[quoted text clipped - 50 lines]
> Even though I hate taking the things I wouldn't try and stop again. Good
> luck :-)

Reply to this Message

Bob - 07 Nov 2003 18:28 GMT

> hi everyone,
> seems we all have this aura thing in common. haven't had one for several
[quoted text clipped - 8 lines]
> cheers
> Mike

There are 2 considerations in withdrawing any medication:
1) Your body may require the current dosage to eliminate your symptoms Reducing
the dosage may cause your symptoms to reappear. Of course, that's what you want
to test out.
2) *Withdrawal symptoms* Even if a healthy person had been taking that dose and
suddenly stopped, they would get some undesirable withdrawal symptoms. So reduce
the dose gradually to avoid those.

I don't know offhand what pill sizes are available in that drug, but first go
down to 350 or 300 depending on your options for a week. Then down to 300 for
the second week and so forth. By going down gradually, you can be reasonably be
assured that anything that happens is not due to withdrawal and is caused by a
need of the drug in order to control your condition.

I take different drugs, but when I tried to reduce the Neurontin, I immediately
had an increase in my symptoms. Increasing the dose had a similar effect, so I
feel sort of trapped right now because I don't have total control.

I hope that all made sense.

Bob

> > > > > > Last grand mal 6 years ago. Last aura 1 year ago, from a
> frequency
[quoted text clipped - 56 lines]
> > Even though I hate taking the things I wouldn't try and stop again. Good
> > luck :-)

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Mike - 07 Nov 2003 21:36 GMT

Thanks Bob.
It does makes sense but I'll have to make a conscious decision to take that
step.
Anyone with loss in libido or ED whilst on this medication? (Dilantin is the
propriety brand of Pheytoin)
Mike

> > hi everyone,
> > seems we all have this aura thing in common. haven't had one for several
[quoted text clipped - 91 lines]
> > > Even though I hate taking the things I wouldn't try and stop again. Good
> > > luck :-)

Reply to this Message

Bob - 09 Nov 2003 00:48 GMT

> Thanks Bob.
> It does makes sense but I'll have to make a conscious decision to take that
> step.
> Anyone with loss in libido or ED

Yes! in spades!

> whilst on this medication? (Dilantin is the
> propriety brand of Pheytoin)

I take different medications, but I have a hunch that they are all the same in
that regard.

Bob

> Mike
>
[quoted text clipped - 116 lines]
> Good
> > > > luck :-)

Reply to this Message

Dave ???? - 10 Nov 2003 20:17 GMT

Howdy!

If you are having libido problems, take Lamictal.

Quite a few of us have found that Lamictal not only improves the libido, but
it can make you out and out horney!

This can also lead to problems...

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> > Thanks Bob.
> > It does makes sense but I'll have to make a conscious decision to take that
[quoted text clipped - 131 lines]
> > Good
> > > > > luck :-)

Reply to this Message

Mike - 13 Nov 2003 19:50 GMT

Hullo there Dave and all,
Thanks for that info........
However, I dinnae like the negative reviews this Lamictal stuff seems to be
getting from members of our NG. I suppose all meds have their down-sides.

Mike

> Howdy!
>
[quoted text clipped - 172 lines]
> > > Good
> > > > > > luck :-)

Reply to this Message

Dave ???? - 13 Nov 2003 21:52 GMT

Howdy Mike!

Basing conclusions on the experiences of participants in this NG is not
statistically sound. The sampling size isn't really big enough and I don't
think that it is really a random cross section of the entire population of
people taking any particular drug.

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> Hullo there Dave and all,
> Thanks for that info........
[quoted text clipped - 194 lines]
> > > > Good
> > > > > > > luck :-)

Reply to this Message

Pablo - 15 Nov 2003 20:51 GMT

> Hullo there Dave and all,
> Thanks for that info........
> However, I dinnae like the negative reviews this Lamictal stuff seems to be
> getting from members of our NG. I suppose all meds have their down-sides.
>
> Mike

g'day mike,
i have had great success with lamictal, and very minor if at all noticeable
side-effects.
pablo

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turbinado - 17 Nov 2003 03:01 GMT

> Hi Bob,
>
[quoted text clipped - 8 lines]
> Have you heard of this before or has anyone else experienced anything
> similar?

Lately I've had several episodes of a feeling like you describe - the
feeling of watching yourself, being removed from your body. This has
preceded absences a few times. I also get a sort of deja vu where I feel
like whatever situation I'm in has occurred before, but in a dream.
Unfortunately it looks like the Tegretol's effectiveness is wearing thin
after a year and a half. No grand mals, thank God, but several absences and
a couple of complex partials. I see my neuro next month and we'll see if he
wants to increase the dose or add something else to it.

Reply to this Message

Dave ???? - 17 Nov 2003 03:54 GMT

Howdy!

Why THANKS!!!

I've been trying to explain that very same feeling for years now. That's the
best description that I've heard to date.

"Watching yourself from out of body"

Couldn't have said it better myself!

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> > Hi Bob,
> >
[quoted text clipped - 19 lines]
> a couple of complex partials. I see my neuro next month and we'll see if he
> wants to increase the dose or add something else to it.

Reply to this Message

M - 17 Nov 2003 16:53 GMT

Dave ©¿©¬ <dave@_nospam_howdydave.com> wrote

>Howdy!
>
[quoted text clipped - 6 lines]
>
>Couldn't have said it better myself!

A detachment from reality, like watching the world unplugged.

I'm going to fight it this time, I'm not going under.
I WILL NOT LET IT WIN!
The world is so big and I am so tiny. Why?
This isn't me.

Please, let me out.

I don'b ab ongar yakka shan msicdom ejfhfun fdqf fqwjfeuhhiwef

It will soon be ten years since my last CP seizure, yet I remember every
second of the aura up to loss of awareness, even though I can't remember
my phone number.

Signature

Malcolm

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Clean your room - 02 Nov 2003 01:08 GMT

Bob,

The most recognizable part of your description is that it's impossible to
describe. Doctors always act like they have no idea what I'm talking about,
when they should be giving me some kind of reassurance.

Deja vu is one description I've used a lot and it's great that there's
someone out there who knows what I'm talking about.

Being a programmer, another way I describe it is that it feels like
everything from moment to moment is a big IF, THEN, ELSE statement, that is,
everything happening is the result of different forks taken, one after the
other.

I'm not sure if mine are an aura preceding a seizure or if they're
controlled seizures.

Another "aura" I get is a set of symptoms: a fear, a feeling like I want to
go home, together with an unsettled stomach, a distinct tingling in the
right arm like cold air, plus mental confusion. Usually I feel that I need
to go to sleep after one of those, and often I do.

Jack

> > > > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > > > of 1 per month.
[quoted text clipped - 22 lines]
>
> Bob

Reply to this Message

Bob - 02 Nov 2003 17:05 GMT

Hi Jack

> Bob,
>
[quoted text clipped - 9 lines]
> everything happening is the result of different forks taken, one after the
> other.

or a series of nested CASE statements? :-)

> I'm not sure if mine are an aura preceding a seizure or if they're
> controlled seizures.
[quoted text clipped - 3 lines]
> right arm like cold air, plus mental confusion. Usually I feel that I need
> to go to sleep after one of those, and often I do.

Thanks much for the feedback!

Bob

> > > > > Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> > > > > of 1 per month.
[quoted text clipped - 29 lines]
> >
> > Bob

Reply to this Message

Dave ???? - 02 Nov 2003 20:18 GMT

Howdy!

How about crossing loops?

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> Hi Jack
>
> > Bob,

> > Deja vu is one description I've used a lot and it's great that there's
> > someone out there who knows what I'm talking about.
[quoted text clipped - 5 lines]
>
> or a series of nested CASE statements? :-)

Reply to this Message

Pablo - 04 Nov 2003 20:13 GMT

g'day,
i've always felt that an aura is like the feeling of someone walking over
your grave but more intense. when i do have an aura i don't have any change
to motor function and i don't have any change to my conscious state.
pablo

> Bob,
>
[quoted text clipped - 53 lines]
> >
> > Bob

Reply to this Message

Dave ???? - 06 Nov 2003 01:46 GMT

Howdy Pablo!

GOOD DESCRIPTION!!

I'm gonna' hafta' remember that one!

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> g'day,
> i've always felt that an aura is like the feeling of someone walking over
> your grave but more intense. when i do have an aura i don't have any change
> to motor function and i don't have any change to my conscious state.
> pablo

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Pablo - 28 Oct 2003 21:14 GMT

> Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> of 1 per month.
>
> From those numbers alone, what are my chances of permanent remission?

G'day
i had a remission period of five years but it came back bigger and better,
but my epilepsy was caused by scarring on the brain. if your epilepsy is not
caused by trauma you may be lucky, but i'd be surprised. hope i didn't rain
on your parade.
pablo

Reply to this Message

Dave ???? - 30 Oct 2003 05:48 GMT

Howdy Chuck!

That one's easy!

Since we are only talking about you and not a group, the chances are 50/50.

Either it will happen or it won't!

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> Last grand mal 6 years ago. Last aura 1 year ago, from a frequency
> of 1 per month.
>
> From those numbers alone, what are my chances of permanent remission?

Reply to this Message

M - 31 Oct 2003 08:10 GMT

>Howdy Chuck!
>
[quoted text clipped - 3 lines]
>
>Either it will happen or it won't!

Hi,

Warped reasoning again. If I wink at the cashier in the foodstore will I
end up with a good night out?

"Since we are only talking about you and not a group, the chances are
50/50.

Either it will happen or it won't!"

It's a pity life's never simple :-(

Signature

Malcolm

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Dave ???? - 31 Oct 2003 21:50 GMT

Howdy Malcom!

Awww... c'mon....

I must admit that my memory sucks but I thought that you used to be as much
of a provocatour as I am!

I still stand by my reasoning on a one time/one shot incident! Odds have to
do with how often something will happen in a number of encounters.

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> >Howdy Chuck!
> >
[quoted text clipped - 15 lines]
>
> It's a pity life's never simple :-(

Reply to this Message

Dave ???? - 31 Oct 2003 21:55 GMT

Sorry...

I should have said a one time/one shot incident with only 2 possible
outcomes.

Not like a horserace where it's what are the chances that horse #1 will beat
horses #2 AND #3 AND #4 etc.

If it's a 2 horse race, on any particular day any particular horse can win.

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> Howdy Malcom!
>
[quoted text clipped - 26 lines]
> >
> > It's a pity life's never simple :-(

Reply to this Message

M - 01 Nov 2003 09:23 GMT

>Howdy Malcom!
>
>Awww... c'mon....

OK, just this once.

>I must admit that my memory sucks but I thought that you used to be as much
>of a provocatour as I am!

I am. But I spell it provocateur. I go round provoking people into
saying what they don't mean to say :-)

>I still stand by my reasoning on a one time/one shot incident! Odds have to
>do with how often something will happen in a number of encounters.

If such a situation had never been encountered before, then a "maybe you
will, maybe you won't" approach would be valid. But (apparently despite
many doctors being unaware of it) many people have had epilepsy before
and been in such a position, and our experience shows us that for adult
epileptics remission is never 100% complete. Our epilepsy is as much
part of us as our fingerprints, and it will always be ticking away in
the background, waiting for just the right moment.

The chances of being completely and permanently cured are zilch.
We will never be cured.

Yours, Eeyore

Signature

Malcolm

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Dave ???? - 02 Nov 2003 02:24 GMT

Howdy Malcom!

You're using one of those words again...

(remission is "never" 100% complete)

I'll agree with your last sentence due to semantics, not statistics. i.e.: I
can't be "cured" of a condition.

Geez... sayin' that and gettin' on MY case about my stats!

As for the spelling... you guys over there in England always spelld things
kinda' funny!

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> >Howdy Malcom!
> >
[quoted text clipped - 23 lines]
>
> Yours, Eeyore

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