Grrrrr.....I'm fed up !

[TeeTees]

Well, I was doing soooo well about a week and a half ago, as I'd gone 3 1/2 weeks without a seizure.

Since a couple of Thursday nights ago, I've had a seizure literally every day/night !

On Monday I went all clear, no probs day or night, plus no problems when I've awoken on Tuesday all day. I've gone to the gym and done my Legs, and Back workout on Tuesday night, and then onto the bike ride for 30 minutes. Then, I got into the Steam Room for 5 minutes, and then relaxed in the spa bath for about 40 minutes.

I got in the shower last night down the gym after the relaxing, and hey presto - I had a f...ing seizure !! I kinda was 'there', but 'wasn't' if you know what I mean. It lasted only about 20 seconds max ?

Everything was working so bloody well, and then it has to kick me when I'm not expecting it !!

I went to work Today, hoping that that's it.....let's ignore the past, and concentrate on a 'new' day.

All was okay, until 4ish in work when I got the 'feeling' that something was gonna happen. I started walking to the loo in work, when it came across that I'm about to be 'attacked' by the seizure....which I did when I reached the loo. I had another seizure about 10 minutes when trying to type this out, and am feeling shattered right now.

I just feel so gloomy at the moment.

I know, my condition isn't half as bad as some people, but it still doesn't help me from feeling sorry for myself, and asking 'WHY ME ?'

Damn, I'm on a real downer.

Sorry to have a vent guys, but life sucks at the moment.
:soap:

 

[kris1230]

I totally know how you feel. IT DOES SUCK!! You can be doing just fine and then it just happens and you have no control over it. I think it'll make us all stronger people though. 3 1/2 weeks without a seizure is still progress though and that's awesome!!! Hang in there and vent anytime, it's good therapy.

 

[CQ:)]

Hi Tees

It does get annoying to start having seizures again after thinking that you have them under control.

Do you write your seizures down in a seizure diary? Also do you have to make an appt to go see your GP or neurologist? Even though you may not think the seizures aren't that bad you are having them reguarly so maybe the Neuro might have to alter your meds.

 

[RobinN]

Knowing again today exactly how you are feeling. I was all smug about thinking I had "this" figured out and BAM got a call Rebecca had another seizure today.
I'm thinking it is the increase in Trileptal. Happened a lot the last time we increased, then quiet...

Thinkin, thinkin, thinkin.. what is different.
Hang in there Tees.

 

[Bernard]

Since a couple of Thursday nights ago, I've had a seizure literally every day/night !

Any ideas as to why? Any difference in your routine? You might get your blood checked to make sure your med levels are still right.

Everything was working so bloody well, and then it has to kick me when I'm not expecting it !!

I hope that brought you a smile.

 

[brain]

I kinda was 'there', but 'wasn't' if you know what I mean. It lasted only about 20 seconds max ?

TT?

I know exactly the feeling of being there but
not there .. it's called "depersonalization" or
some Epileptologists call it "dissociation". But
I call it 100% annoying as HECK!

It's common with TLE / FLE and Complex
Partials and personally I'd love to depersonalize
and dissociate them all!

And here's some links that would help you
understand it better:

(Note: Simple Partials fall into this field too)

eMed - TLE

eMed - FLE


I'm curious ... I have a question for you:

Do you ever feel like you're separating from
your body and you feel like you have to go
and "get yourself" to keep yourself attached?
(Maybe I'm not explaining this very well) It's
really super-weird; it's different from being
there but not there, nor is it "rising experience"
either (I get those too). I just feel like my body
is separating from myself and I have to keep
myself together - almost like the movie "Peter
Pan" - where Peter is having so sew his shadow
back on so he doesn't loose it? (Maybe that's
a horrible way to describe it)

I'm not good with explaining this one and I have
a difficult time trying to tell my Neuro and Epi
this one. But I've had this one all in my life.
It's too eerie, strange, but eerie.


((((((((( HUGS )))))))))))

TALK TO YOUR DOCTOR and schedule for a
follow-up appointment and go over everything
with the Doctor.

 

[Zoe]

Knowing again today exactly how you are feeling. I was all smug about thinking I had "this" figured out and BAM got a call Rebecca had another seizure today.
I'm thinking it is the increase in Trileptal. Happened a lot the last time we increased, then quiet...

Thinkin, thinkin, thinkin.. what is different.
Hang in there Tees.

Hi Robin,
I just did a google on trileptal side effects and you may want to check it out.
"Hyponatremia, or "water poisoning", is a side effect of anti-convulsant and commonly used bipolarity drug Trileptal. The condition, in which excess blood plasma dilutes the salt content of blood, can decrease organ function and endanger the lives of patients taking Trileptal."

http://trileptal.legalview.com/58817/

That came up early in the search. Here's some info on hyponatremia:
Postgraduate Medicine: Hyponatremia and hypernatremiaEarly manifestations of hyponatremia include anorexia, nausea, lethargy, and apathy. More advanced symptoms include disorientation, agitation, seizures, ...
www.postgradmed.com/issues/2000/05_00/fall.htm

This article above discusses what testing can help determine if this is a problem for her.

 

[brain]

Robin:

You may want to check this out too,
Scroll about half way down and the next
one is the FDA's Website on Trileptal.

TRILEPTAL

FDA - MED SAFETY WATCH on TRILEPTAL

Updated FDA on TRILEPTAL

 

[RobinN]

Thank you Zoe and Sharon

 

[angel]

Brain,

WOW! what you said= (Do you ever feel like you're separating from
your body and you feel like you have to go
and "get yourself" to keep yourself attached?
(Maybe I'm not explaining this very well) It's
really super-weird; it's different from being
there but not there, nor is it "rising experience"
either (I get those too). I just feel like my body
is separating from myself and I have to keep
myself together - almost like the movie "Peter
Pan" - where Peter is having so sew his shadow
back on so he doesn't loose it? (Maybe that's
a horrible way to describe it)

I'm not good with explaining this one and I have
a difficult time trying to tell my Neuro and Epi
this one. But I've had this one all in my life.
It's too eerie, strange, but eerie.)

thats pretty much how i explained my seizures to my neuro.... one time i was at the pc and i felt like spirit(sounds weird i know) rushing out of the top of my head and everything went white it was really scary i felt like i was going to black out big time.....that time i cant say for sure but it lasted more than a min..
i had to try and calm myself breathing very slowly helped a little... i rember when it happened extream fear and panic set in it freaked me out....

 

[angel]

hang in there Tee Tees

we are all here for you

keppra seems to be helping me...
if you can get through the first few months of hell on it

love and hugs
angel

 

[TeeTees]

Thanks for all the kind responses AGAIN guys. You really are a bunch of diamonds that I feel soooo lucky to have hooked up with.

I was still a li'l weary when I awoke this morning, and am feeling 'slightly' tired at the mo, but went to work anyhow (I find if I stayed home and sat around doing nothing, that I'd probably have had another seizure by now - my mind kinda needs to be active at all times).

Sorry for the rant last night, I just felt soooo low, I woulda been happy if my life had ended - at least I wouldn't have been having to put up with all this crap......however, having started a 'new' day I'm soooo glad it hasn't ended.

Brain : as per the 'separation from body' experience. I can't really say that I've had that (yet!). I just get a strong aura with an electrical taste (like the bottom of a battery), which then makes me aware that I MAY have a sz, which in turn gives me time to prepare myself for the storm ahead. Thanks for the links though - they really do help me understand what's going on a bit more, and also help me realise that I'm not such a 'freak' as I may believe at times. xx

I'm currently sitting here in work at the moment, in what I call 'screen-saver' mode.....it's where I 'appear' to be working hard, but really I'm just chillin' out giving myself a chance to recover.

Tonight is another usual night where I go down the gym, but I think I'm gonna have to sit out on this workout. Recovery first, workout second, in my priorities of life I think.

I think the cause of my bad fortnight is the rubbish I've been going through lately in my job. I work in Accounts, and am responsible for getting Suppliers paid on time. I was told AFTER I had ran a payment proposal that we are NOT to pay anyone until Jan 2008 !!! So, I went mad at my boss telling him it was completely unethical, and against company policies, blah, blah, blah......so I've been going through a bit of a stressful time at the moment. The funny thing is though - when I'm going THROUGH a stressful period, the sz's are controlled....it's when I've gone PAST the stressful period (and recovering) that the sz's usually rear their ugly heads.

Thanks again Guys - you're all amazing people, and if anyone tells you any different....send 'em over to me !!!.....I'll get Benji to lick 'em to death !! (haha)

 

[RobinN]

I am glad that you chose "The New Day" option button too. Nothing like a new perspective to make a little more sense.

Thinking about your stressful periods being seizure free, and not when the storm is over.
Have you ever noticed how you are well during the busy times, and when your body has some down time you tend to get sick. That happens to me. I think the body is a marvelous machine that when it functions properly is incredible. The immune system charges into gear when it is necessary to withstand quite a lot of demands. Then there is a healing period that when there are no reserves I believe you see a malfunction. Seems to me the ideal would be to not run the well empty.

You have quite a challenge ahead with your boss. Take time out when you need to. There are a lot of reasons to believe that you are not a "freak"

 

[brain]

Brain,

WOW! what you said

I'm not good with explaining this one and I have
a difficult time trying to tell my Neuro and Epi
this one. But I've had this one all in my life.
It's too eerie, strange, but eerie.)

thats pretty much how i explained my seizures to my neuro.... one time i was at the pc and i felt like spirit(sounds weird i know) rushing out of the top of my head and everything went white it was really scary i felt like i was going to black out big
time.....that time i cant say for sure but it lasted more than a min..
i had to try and calm myself breathing very slowly helped a little... i rember when it happened extream fear and panic set in it freaked me out....

No - that's not it.

No blackouts or anything like that, no panic,
anxiety, or anything. It's like you're drifting
away from your body (for want of better
description). It only lasts maybe 3-5 seconds,
and then it's gone. It does not last long at all.
But it's just too freaking friggin' downright flat-
out EERIE!

I just have a hard time explaining it or describing
it. The last Epi I saw associated it with the rising
experience. But I know what the rising experiences
are. And that isn't it.

My son and ex a couple of times caught me in
this type of mode would state my eyes would be
in a "wild look" fully dilated for just a few seconds
and my expression would be blank but I would be
alert and aware of what's going on, but after it
was over. I just had to go to sleep immediately
and would sleep for a extreme long period of time.

It's hard to state if it was a seizure or an aura,
because it happened so quick, so fast, bang,
bang, bang, and it was over.

These USED to be isolated and sporadic but I've
been getting them more frequent since 1995? I
used to get a lot of them when I was a child and
teen then waned off, then it would happen like
once every 2-4 years; and out of nowhere, it
seemed to happen 2-3 times a month. By 2000,
I was getting them like 11 or so times a month,
but it was so quick.

Today, there's no way of knowing, but the 1st
Epi I saw caught it, not once, but several times.
His Nurse caught it and his Receptionist caught
it. The Hospital EEG Tech caught it. My son and
his Buddies have caught it several times and it
seems to have gotten worse. Instead of the "wild
look" in the eyes only, they now rock violently.
But I don't know it. I only sense what I'm trying
to state. But everyone else sees it all differently
and my behavior is fine, except I do stagger if
I am walking during that brief few seconds. But
the urge to sleep - I have to sleep and of course
I get the headache.

But is it or was it a seizure? Or an aura? Like I said
the last Epi (the 2nd one) said it was an aura.
I just don't know. Auras don't make me sleep or
give me headaches like after having a seizures.

That's why I get so frustrated that I'm not
clarifying myself clearly.

 

[brain]

Thanks for all the kind responses AGAIN guys. You really are a bunch of diamonds that I feel soooo lucky to have hooked up with.

Brain : as per the 'separation from body' experience. I can't really say that I've had that (yet!). I just get a strong aura with an electrical taste (like the bottom of a battery), which then makes me aware that I MAY have a sz, which in turn gives me time to prepare myself for the storm ahead. Thanks for the links though - they really do help me understand what's going on a bit more, and also help me realise that I'm not such a 'freak' as I may believe at times. xx


Thanks again Guys - you're all amazing people, and if anyone tells you any different....send 'em over to me !!!.....I'll get Benji to lick 'em to death !! (haha)

(((((((((((((((( TT ))))))))))))))))))

No problem! That's what we're here for!
I experience taste issues too - but not battery
acid though: just really odd taste - and mostly
it's sour - and I HATE PICKLES! I also SMELL IT!
*GAG* My sense of taste becomes really
distorted, but primarily it's pickles. But as
for Smell - it's weird - depending on what the
seizure is going to come it's either electrical
burning or pickles (*gag again*), or even worse,
gasoline / kerosene - and why those chemicals,
I have no earthly idea! Of all the things I have
to "smell" in an aura - I wish we could have an
"multiple option selection" or a "choice" - and
we get stuck with the hideous gunk!

Glad it's all a NEW DAY FOR YOU!

:tup:

And let's hope it continues this way!

:clap:

 

[TeeTees]

I am glad that you chose "The New Day" option button too. Nothing like a new perspective to make a little more sense.

Thinking about your stressful periods being seizure free, and not when the storm is over.
Have you ever noticed how you are well during the busy times, and when your body has some down time you tend to get sick. That happens to me. I think the body is a marvelous machine that when it functions properly is incredible. The immune system charges into gear when it is necessary to withstand quite a lot of demands. Then there is a healing period that when there are no reserves I believe you see a malfunction. Seems to me the ideal would be to not run the well empty.

You have quite a challenge ahead with your boss. Take time out when you need to. There are a lot of reasons to believe that you are not a "freak"

Robin : it seems like we're on exactly the same wave-length Today.....I've booked Monday off, and the First and Second Monday&Tuesday in December too.

I've always had that "I'm ready for a fight" seizure free period, and then the "oh bugger, here we go" after the storm effect.

I also find that silence is a killer for me too...I need to have something 'happening' around me, even if it's just the radio playing, to keep me away from the 'silent zone', cuz as soon as I'm in it - zap !...I'm off again !!

My life is kinda based around board games....every toss off the dice relates to where I go next, but as soon as I hit a sz it's back to square one. So a New Day it is....at least I can deal with it that way :tup:

 

[TeeTees]

http://www.youtube.com/watch?v=3ZQI0Xm29To

I hope that brought you a smile.

Mwaaahahahaha :roflmao:....Thanks Bernard, I needed that. It's been a looooong day

 

[KimP]

Hi All,
It sounds like a tough week for all of us. Thanks for the info on Trileptal Zoe and Sharon. Everything helps right now. Steph is still recovering from her seizure on Tuesday. We too had to press the "New Day" button. I'm a little nervous about her medication increase but what else can we do? Two seizures in one week was a little much for her. Second b-ball game tonight she is missing but she just told me that she was dressing anyway even if she had to sit this one out on the bench. I feel she is so much better at this than I am. It is breaking my heart. Hang in there TeeTees! We are praying for you! Robin, I hope Rebecca is feeling better today. Hugs and prayers for everyone!

Take Care,
Kim

 

[angel]

Brain,

is it like an out of body experience for a few sec's ?

 

[brain]

Brain,

is it like an out of body experience for a few sec's ?

NO. The Neuros and an Epi said it wasn't,
because of what I was describing it. They
did ask me additional questions and when I
answered them "NO", it wasn't an "Out of
Body" experience. So they didn't know what
it was. But the 2nd Epi I saw simply was
very blunt like he's heard it before; and called
it "rising", an aura. But I have my reservations
about that, unless it was a very fast aura,
and a very fast seizure - like someone put
something on "super-mega speed fast forward".