>I look forward to getting to know everyone and I hope I can encourage,
> support and maybe even pass on some info.
[quoted text clipped - 19 lines]
> http://www.talkaboutsupport.com/group/alt.support.epilepsy/
> More information at http://www.talkaboutsupport.com/faq.html
I usually talk, babble, actually, when in seizure. Not talking seems
reasonable, but for four hours? How do you define "unconscious?"
Rev21-4 - 12 Feb 2008 00:19 GMT
No, this isn't that kind of "babbling." Unconscious is when I've lost
time, well...unconscious.
This is being completely aware, hearing, seeing, and just wanting to open
your mouth and talk and everything's jumbled...like you're having a
stroke.
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David Ruether - 12 Feb 2008 16:57 GMT
> No, this isn't that kind of "babbling." Unconscious is when I've lost
> time, well...unconscious.
>
> This is being completely aware, hearing, seeing, and just wanting to open
> your mouth and talk and everything's jumbled...like you're having a
> stroke.
I often lose control of speech (sounds and words jumble) and
then very soon after, I cannot speak. If It passes in a short time
(from a few seconds to a couple of minutes), I will be OK, but
if not, I become completely limp and unable to move or respond
(or even think - I've "joked" that my I.Q. suddenly drops to
about 40...). Vision is moderately disturbed during the event,
but I can hear and usually remember what happened. I may
(now rarely) then get "trapped" in repetitions of a sound or
syllable. After either, I usually fall immediately "dead" asleep for
a couple of hours and wake up with unbelievable gas. I have
twice been diagnosed with complex partial epilepsy, though the
symptoms do not fit the usual definitions (and some neurologists
have not agreed with this diagnosis). Ah, well.
Good luck in putting a meaningful name to what you have.
--DR
> I look forward to getting to know everyone and I hope I can encourage,
> support and maybe even pass on some info.
[quoted text clipped - 17 lines]
> Message posted using http://www.talkaboutsupport.com/group/alt.support.epilepsy/
> More information at http://www.talkaboutsupport.com/faq.html
There are so many different kinds of seizures. I have heard of people
not being able to speek.
I haven't personally had that problem. My seizures have been better
since I went on Keppra and got off phenobarbital.
BTW like your username. Rev21:4 is one of my fav scriptures.
Julie
Rev21-4 - 12 Feb 2008 00:49 GMT
I want to get off of Phenobarbitol. I've been on it for ages. I tried to
go off it years ago; my doctor slowly weaned me off it and I got down to
the last day and had a seizure in my apartment. Woke-up all stiff and
sore. YUCK!!
You're a Christian!!! I'm HOLDING ON to that scripture with my
fingernails!! I can't wait!! :)
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Julie - 12 Feb 2008 15:24 GMT
> I want to get off of Phenobarbitol. I've been on it for ages. I tried to
> go off it years ago; my doctor slowly weaned me off it and I got down to
[quoted text clipped - 7 lines]
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It took me about 1 1/2 years to get off phenobarbital. My doctor (he is
the Director of the Idaho Comprehensive Epilepsy Center) told me that it
would take a very long time because I had been on phenobarbital for over
30 years. We started by putting me on keppra first, then I slowly took
away a very small amount of phenobarbital. I did go through withdrawal
symptoms. I just knew that I was going to devote a year to this.
Because of how it was effecting me, we went even slower. Instead of
decreasing every 4 weeks, I decreased every 6 weeks, also I changed the
amount I was decreasing to an even smaller amount. My friends and
family knew what I was going through and they were encouraging and
supportive.
I tried this once before, but the doctor I had then took me off way too
quickly. I thought the severe side effects I was having was from the
new drug I was taking, but now we realize that the problem probably
wasn't the new drug, but the fact that I went off phenobarbital too
quickly. I was miserable, and had seizures. This time I had a doctor
who knew what he was doing.
Take care,
Julie
Rev21-4 - 12 Feb 2008 16:52 GMT
That's probably why I had a seizure the last (and only) time my doctor
weaned me off it. I probably came off of it too quickly.
I'm planning on going to an Epilepsy specialist as I'm not sure my
neurologist knows what she's doing and she's such a COLD person. She
never smiles and she makes me feel terribly uncomfortable. I'd like a
neurologist who was supportive.
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> I look forward to getting to know everyone and I hope I can encourage,
> support and maybe even pass on some info.
> I have a question. I've had temporal lobe seizures since I was 21 (am now
> 56) and a little more than a year ago I developed what my neurologist calls
> "complex partial seizures".
*** Temporal Lobe Seizures describe the area of the brain where the
seizures start (the seizure focus), and is an older term that was
replaced by Complex Partial Seizures (name) which includes the former
T.Lobe seizures.. It didn't change, the name did.
When it first happened I thought I was going
> to have my usual unconscious seizure because I couldn't talk - form words
> - everything jumbled even though I knew what I wanted to say. But it
> lasted for four hours and I didn't become unconscious.
**** Usually if you're conscious or aware of what you do during a
seizure, it is included under Simple Partial seizures? as that's the
only one where we're aware what we do while 'we're away'..
I was taken to the
> hospital and they ran a bunch of tests (because they thought I might be
> having a stroke) but I was diagnosed with complex partial seizures.
***** Those often stand out on an Electro Encephalograph (EEG), or
Magnetic Resonance Image (MRI) since they have a distinctive
'signature' that's different from other seizure types. /
My
> concern is: I've NEVER read about anyone else having that symptom!! Does
> anyone here have that happen or know anyone who's had that happen?
> I lost my job as an Inside Sales Rep because I had to talk on the phone
> all day long and all of a sudden I couldn't talk because I knew sounds
> that didn't make sense would come out of my mouth.
**** Did you have Disability Insurance thru your employer or on your
own? Many Employers (from postings here over last 10 years), may**
not tell the employee they're eligible for long term income subsidies
where they are. Insurance companies (I found) are the worst for
trying to move 'away' from someone who's paid premiums for 8, 10, 20
years if it means they might actually avoid PAYING something back...
I have *1 company who helped me, insurance I had thru my
employment.
The Private insurance I had paid for over 12 years, *most of it
(60%) disappeared into a well and the Government Insurance **Licencing
office had to help them find where they had 'lost it'. I just mailed
the **26th** "Continuance of ongoing Disability" form to them
yesterday. Since *1980, they've sent those forms once or *twice a
year to be completed by ME or my Doctor, to keep the Policy in force
that they say they'll pay out, after I die (that's how I got to the
*26th time above).
I've been Tempted once or twice to write "Deceased" in large Red
Felt Pen across the Form and Mail it back, but thought that might mess
up the coverage I already have, just to get one of their Agents out of
his "Dilbert Seat" to make a Phone Call..... //
*Group Insurance, thru an Employer, Club or Group is easier to
qualify for, or buy, but usually there's a period (12-18 months)
before you can then apply for waiver of premiums or other coverage?
And many ask up front "if you have been treated for heart, stroke,
seizures, illness 1, illness 2 or any other things that might affect
insurability..."
That's why it would be best to be able to reactivate insurance
that you had before the onset period. /
I'm much better know,
> besides Phenobarbital I take Trileptal.
> Any info, please!
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>I look forward to getting to know everyone and I hope I can encourage,
> support and maybe even pass on some info.
[quoted text clipped - 19 lines]
> http://www.talkaboutsupport.com/group/alt.support.epilepsy/
> More information at http://www.talkaboutsupport.com/faq.html
My wife had Complex Partial Seizures, and after a while, some of her worse
'Petit Mals' (I can obviously only use her descriptions) often left he
thinking that she was going to go into a Grand Mal, but stopped just short.
After these, she often was left unable to speak. She would talk, and then
look at me in a very questioning way as if to see if I could understand the
gibberish that was coming out of her mouth. She later described this as a
time when she struggled to find words, but that what came out of her mouth
was not what she was intending to say, if that makes any sense.
Anyway , this is second hand, so possibly not much use to you, except to
know that others seem to have had similar symptoms to those you describe.
Patrick