Sitting down and getting comfy

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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swimmy

swimmy

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Hi everyone,

Just wanted to introduce myself.
I found this forum via Facebook. It's always nice to find new forums and areas of support for those of us dealing with epilepsy in one form or the other.

I have had epilepsy since 1985, most likely started from a head injury I sustained 4 months prior to my first seizure. My tonic clonics are controlled with medication (at the moment Lamictal and Pheno, but I have tried them ALL), but my simple partials continue unabated.
I just completed a Video EEG to see if I am a candidate for sugery. They didn't see enough spikes to make any determinations, even with having two generalized seizures and some auras. They recommended surgically implanting the electrodes, but I am getting off the crazy bus here.
I lead a relatively normal life...I can drive, be a supportive wife and mother, and volunteer. I will probably never work again, but that's fine with me.

I look forward to getting to know you all here.

Anita
 
Hi, welcome. I think you have found the best place around! I got diagnosed last year and started searching on the web...I found a few other places, but this place seems like home. It's a friendly group and there are people on here with all different kind of seizures. It very comforting to just know I am not the only one with certain symptoms,etc.
I really love this place!
 
:hello: Anita

Welcome to CWE, and make yourself a home.
I can understand why you are feeling the way
you are, with one being controlled and the other
or others not. I am in the same boat.

However, I can understand the invasive methods
of tracking down seizures, and yet, you are having
second thoughts here and wanting to get off the
"crazy bus". The main purpose of the invasive method
is to narrow down to the core area; for your chances
of becoming seizure free or a great reduction of seizures
are far greater --- the sooner they can deal with it,
the better your chances!

But consider this factor here if this brings any assurance:
Neurosurgeons takes their jobs very seriously. They are
not haphazard people! They actually look for everything
else possible before even considering the thought for
surgery for a patient that has been bought to them (unless
of course, it is a major medical emergency, that itself is
a different story). They are really impressive people!

One other thing is, they have their reputation and stake
on the line and will not put their own patients and their
own selves in jeopardy. They are that good! Totally different
from all other Surgeons!

Because for one thing - Neurosurgeons have to perform
surgery most of the time in an unusual mode - when the
patient is awake and alert! You are having to deal with a
patient that is awake, talking, and alert ... all other Surgeons
have their patients "knocked out cold" and perform surgeries!

This takes the utmost skill of the highest caliber for someone
to accomplish this feat!

:tup:

Been through Wada twice, and a couple other minor ones...
I see it as "Health Channel LIVE" ... *laughing*

Make yourself a home here!

PS: That beanbag
chair over there is
mine! *grins*
 
Hi Anita! Welcome to CWE. :) I'm nearby in Hemet. Good to see another SoCal person here. :) Feel free to ask questions, vent in the padded room, or just chime in.
 
Thank you for the welcome, jgb, skillefer and brain!

Brain--you are so right, neurosurgeons are pretty amazing to be able to do what they do, on an organ that much is still not known about.

Now the WADA...I wouldn't mind doing that. Like you said, it would be like watching a science video with me as the main character! Very cool indeed.

Brain, you may have that beanbag chair. I'm opting for that plush, red chaise lounge over there...
 
Hi Anita - you might consider looking into Neurofeedback. My daughter has been doing it. What it does is take a brain that is out of sync and trains it to be in better balance, and also use more of it effectively. I do know that they work with injured brains with great results. I would prefer you consider checking into this , before dealing with surgery.
 
Hi Anita :hello: Welcome to CWE!!!

I second RobinN's suggestion. I'd look into Neurofeedback and other natural alternatives before resorting to surgery. We're able to control my son's complex partials(caused by brain damage left behind from a stroke) through nutrition, cranial therapy, and other natural methods.

There's a lot of information and support here in the forums. Make yourself at home and have a look around :)
 
Thank you Living Fruity and RobiN! I have heard of neurofeedback and have kept it in the back of my mind to consider after this initial VEEG.
I have decided (thus far) that surgery is not for me, so I will be reading more about neurofeedback here at CWE.
My issue with this is cost--we have been deeply affected by the current financial crisis and have been for the past year (my husband owns his own company). Getting our insurance to pay for anything (even traditional methods) is a struggle, so currently we are struggling to eat. Taking on anything else is being put on the back burner.
 
welcome to the group.

Yep the economy sucks. We take everyday hubby has a job as a successful one. It really is tough.
 
Hi Anita and Welcome! :)

Glad you found us. This is a great site with lots of supportive people and information.

Because of this site, I am now trying alternative health stratagies. I have learned so much here.

Join in, kick back, make yourself at home!

I wish you well and look forward to getting to know you. :agree:

Wishing you a seizure free day,
Julie

P.S. Sharon...you can have the beanbag...I wouldn't be able to get out the dang thing. I'd look like a bug flipped on its back! :roflmao:
 
Hi and welcome * You will enjoy it here and it is very informative.

joan*
 
Thank you Bernard and Joan!
Bernard, your Proactive list is excellent. We have, over the years, addressed each one, with my husband's assistance with observation. I have made changes in all areas and have found many things that have helped. The only thing left is Neurofeedback. One day...
 
Hi There....

Welcome to CWE! This site was my saving grace when I went through tough times. Actually, even though life has stabilized, it's still my saving grace. Not only do I learn something new every day but I also love speaking to the people.

I agree with Robin and Fruity---nutrition and neurofeedback have helped me tremendously! Think about that before surgery!---LMT
 
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