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Old 05-12-2008, 05:01 AM   #1
nanavic
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I hope I am posting to the right place. My name is vicki I am 54 years old. I started having seizures when I was three months old. then had polio at 15 months old and first diagnosed with post polio in 1985.

I am currently looking for information on seizures. I am having an EEG in a couple of hours and seeing a new neurologist the end of the month. For the first time in my life I am ready to learn about seizures so I really do not know much right now. My grand mal seizures have been very sparadic. I had lots of them from 3 months till 3 or 4 years old. then did not have another till I was in my late 20's and then did not have more till three years ago. I have now had 6 or 7 in the past three years.

From what I am starting to learn I think I have had partial (or I am not sure of what type yet all my life). Not sure if it was normal with seizures back in the late 50's and 60's but doctors always looked at me like I was making things up when I tried to explain what went on in my head and I learned very young just not to discuss certain things. I did alright with this till three years ago when things have become more constant.

Things get complicated when you add the post polio because many things could be symptoms of pps.

The information on seizures on the internet is quiet involved. So if anyone has any ideas where I can start to get some more generalized information I would be greatful

vicki
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Old 05-12-2008, 08:31 AM   #2
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Hi Vicki and welcome to NeuroTalk! I've posted the link to our Epilepsy and Seizure Disorder forum. I'm sure there will be some members there who can offer you support and information. Please feel free, however, to join in on any forum you'd like. Happy that you found the site and let us know if you have any questions!!

http://neurotalk.psychcentral.com/forum11.html



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Old 05-12-2008, 11:57 AM   #3
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Vicki!
Vickivickivicki!

One big, warm, tight, hug, handshake and howdy, moose size official type welcome to the site. This place is amazing!

I'm sorry to hear what you are going through. I have MS and had a mild form of epilepsy that cleared up. Never had seizures but would 'zone out' from time to time.

Tons of information out there in doctors' offices and on the web. I ask that you take it in slowly and with a grain of salt. (I reseached MS extensively and found that even the experts contradict themselves.)

Really hope you have a good doc and you can get the answers you need. And we have several forums here with lots of good people with information to share as well. So keep in mind;

You are not alone.
You are one of us.
And we are here to help.
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Old 05-12-2008, 01:17 PM   #4
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Quote:
Originally Posted by nanavic View Post
I hope I am posting to the right place. My name is vicki I am 54 years old. I started having seizures when I was three months old. then had polio at 15 months old and first diagnosed with post polio in 1985.

I am currently looking for information on seizures. I am having an EEG in a couple of hours and seeing a new neurologist the end of the month. For the first time in my life I am ready to learn about seizures so I really do not know much right now. My grand mal seizures have been very sparadic. I had lots of them from 3 months till 3 or 4 years old. then did not have another till I was in my late 20's and then did not have more till three years ago. I have now had 6 or 7 in the past three years.

From what I am starting to learn I think I have had partial (or I am not sure of what type yet all my life). Not sure if it was normal with seizures back in the late 50's and 60's but doctors always looked at me like I was making things up when I tried to explain what went on in my head and I learned very young just not to discuss certain things. I did alright with this till three years ago when things have become more constant.

Things get complicated when you add the post polio because many things could be symptoms of pps.

The information on seizures on the internet is quiet involved. So if anyone has any ideas where I can start to get some more generalized information I would be greatful

vicki
Welcome to the group, i'm sure you'll find lots of people glade to help any way they can.
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Old 05-12-2008, 03:01 PM   #5
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Quote:
Originally Posted by nanavic View Post
I hope I am posting to the right place. My name is vicki I am 54 years old. I started having seizures when I was three months old. then had polio at 15 months old and first diagnosed with post polio in 1985.

I am currently looking for information on seizures. I am having an EEG in a couple of hours and seeing a new neurologist the end of the month. For the first time in my life I am ready to learn about seizures so I really do not know much right now. My grand mal seizures have been very sparadic. I had lots of them from 3 months till 3 or 4 years old. then did not have another till I was in my late 20's and then did not have more till three years ago. I have now had 6 or 7 in the past three years.

From what I am starting to learn I think I have had partial (or I am not sure of what type yet all my life). Not sure if it was normal with seizures back in the late 50's and 60's but doctors always looked at me like I was making things up when I tried to explain what went on in my head and I learned very young just not to discuss certain things. I did alright with this till three years ago when things have become more constant.

Things get complicated when you add the post polio because many things could be symptoms of pps.

The information on seizures on the internet is quiet involved. So if anyone has any ideas where I can start to get some more generalized information I would be greatful

vicki
Hi thee Vicki:

Please allow me to also say Welcome.

I have an 85 year old Aunt (spoke to her last night on Mothers Day).

She has been diagnosed with seizure disorder, well, for most of her life. She also had her thyroid gland removed (which doctors attribute to her losing her hearing entirely). Her thyroid was removed. She was put on Synthroid, which she still takes.

She was never diagnosed with epilepsy. She would just, for no apparent reason, FALL and bang her head all the time.

She has been given every test in the book, every MRI of the brain, etc. And they found NOTHING!!!!

But they gave her dilantin, and then neurontin. They have cut back on her neurontin quite a bit. Her last seizure was about 6 years ago.

They never found out why.

I wonder if her thyroid condition ever caused the seizures. She never could find a reason.

But last night she did tell me (she uses one of those TTY machines for the deaf. I speak, and she reads the machine. And she said "the doctor told me I lost my hearing, it's called Nerve deafness, and as soon as they took out my thyroid, I lost all ability to hear any tunes or melodies.

So we have had to communicate though the machine. She speaks perfectly normally, wears two hearing aids, but can't hear a thing.

But thankfully her seizures have abated. And she made it to 85. And she feels fine.

So you take care of yourself.

Melody
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Old 05-12-2008, 11:35 PM   #6
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Hi there Vicki. It's always nice to meet another young lady around my own vintage

Welcome to NeuroTalk, you're about to meet some wonderful people!

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Old 05-13-2008, 08:38 AM   #7
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Hi, Vicki! Welcome to NeuroTalk!

Please do take a look at the link provided by Kelly and let us know if we can assist you in navigating the forums.
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Old 05-14-2008, 01:05 AM   #8
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Vicki,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

The are a good number of members in the Epilepsy there to help you out. I myself have epilepsy if you have any question feel free to ask.

Again welcome, looking forward to seeing you around.

Darlene
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