Finally!! I've found what i've been looking for!!!!!

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Rynunez
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/20/2005 12:11 PM (GMT -7)   
Hello all~
 
As you can see, i'm new! I'm Ryan and have complex partial sz. i'm 33 and was diagnosed when i was 10, but i remember having szs as early as 2nd grade. I'm currently on 4 meds. Dilantin, lamictal, depecote & gabitral (excuse the spelling). My doc has told me that i'm running out of options and it look like it's time to take the next step "surgery"! That idea scares the...out of me. I've read the post that Kylee posted and the response from Glenda. I'm schedule to go up UCSF in January to get all the test done to see if i even qualify to have it.
 
In the 23 years it was diagnosed, the longest iv'e gone sz free is 1 year. Other than that, I average 1-2 time(s) a month that i have a bunch of aura's and 2-3 full sz. My Seizures are no where near as bad as others i've heard, read or seen (which i'm grateful for). But those days I just can't function correctly on those days. I spend most of the days trying to act normal when i have that awful feeling in waht seems like my chest area all day long.
 
Those Auras that Parksboss was talking about is what i think i have also.The best way to describe them is imagine having the feelings - butterflies, chills & fear - all bundle into a ball and then thrown at you and you instintly have to deal with no options. As a kid, that always scared me so bad that after the sz, i's sleep for 3-4hrs. Now as an adult, it doesn't scare me so bad, but it wares me down to the point that I can't deal with anything around me. It's sad when your 3 year old daughter (my pride & joy) come up to you and asks "are you sick daddy?" on a regular basis.
 
The last 3 months have been the worst. Every day i spend hrs on hrs with auras, top off with a dash of sz from time to time. The full sz, don't have every day but the rest...Yuck! And as all of you know on top of that, the side effects of the meds...lets just say i don't recomend 4 meds.
 
One of me questions for you all is: Have any of you used the VNS, Vagas Nerve Stimulator? I read some stuff about it and just wondering how it's working.
 
Well, didn't mean to make this a novel, i'm just happy to find some one who understands & relates. Thanks!!
 
Rynunez

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 11/20/2005 9:09 PM (GMT -7)   

I'm surprised that you've been told you're running out of meds already.  Have you been on Trileptal, Tegretal, Zorontin, Zonegran, Keppra, or the others that exist?  Or is there some reason they won't work for you?

I hope you can find some less scary options.

Uhura

 

 


Rynunez
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/23/2005 11:11 PM (GMT -7)   
I've tried all those except for Zorontin. I've also been on nuerontin (major depression), and a few others that i can't think of the name right now. There was one that i was taking that had real bad side affects. But it was doing good seizure free. By the time I got used to the side affects, they recalled it (sol). So yeah, iv'e tried a few.

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 11/24/2005 11:53 AM (GMT -7)   

What was the one they recalled?  I've had my own experiences with depression so  know some meds can work for different things.

Uhura


Rynunez
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/26/2005 11:42 PM (GMT -7)   
I think it was Phelbartol (sorry about the spelling, english was not my favorite subject)

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 11/27/2005 7:49 PM (GMT -7)   

Hi Ryan, I can completely understand what you're going through.  I did elect to have the surgery.  I actually had it twice.  The first they removed part of my Temporal Lobe.  When the sz's returned they went in and removed all of the Temporal Lobe.  I still have sz's but the majority of people who have this surgery remain sz free.  I feel that if you're a candidate for the surgery then it's definitely an option to consider.  Brain sugery isn't what it used to be.  I was in the hospital only two days.  That's not to say it was easy but it isn't like it was in the old days.  The med that you were talking about being recalled is Felbatol.  It's associated with Aplastic Anemia and it's fatal in some cases.  Too bad too because alot of people had sz control on it. 

Christine


Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 11/27/2005 8:16 PM (GMT -7)   

Christine, isn't it still available in contries outside the US?

Uhura

 


dinger57
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 9/11/2006 1:41 PM (GMT -7)   
I had my surgery about 2 months ago. I haven't had one seizure since my surgery and I am down to one kind of meds. I am so glad that I had it done. I am no longer tried all the time, like I was before the surgery. And yes I was scared I will not lie to you. It's like I have a new life. I did have aura's at first ofter it, but they have gone alway. I was on three kinds of meds before the surgery, but know I am only on one. I just don't know how to act not having to take all those meds. I had thought about the VNS, but being that my seizures were getting worse it was best that I choose the surgery and had the part of my brain that was causing my seizures removed. It didn't effect my memory and I still am able to think just as it didn't happen, if not better. I hope everything works out for you.

Ken
Had My Brain surgery, and I was so scared, but the doctors made me feel good and and I did. They kidded with me before the surgery and before I knew it I was in recovery Thanks for helping me. Mine is on the  left temporal lobe. They say it is deep it my brain.


maggie28
New Member


Date Joined Sep 2006
Total Posts : 14
   Posted 9/18/2006 6:40 AM (GMT -7)   
Rynunez
I have also have Temporal Lobe Surgery! My surgeries were July 21 & July 28, 2005. My first op was when they inserted a grid on the surface of my brain, & they proceeded to record my brainwaves for a week (mapping my brain) while I was in hospital, & the 2nd op was the removal of a benign tumour & a small piece of brain, during which surgery I had to be awake so that I could respond to their questions & commands!! It was a bit frightening, but my alternative was not attractive either!! I lived with my seizures for most of my life & finally took the step to do something about it!! Now I am almost off my meds(now only 2 tablets/day), whereas before I was taking up to 14 tablets/day!! Life for me has changed incredibly!
If you are even considering surgery, think carefully, weigh up the pros & cons, the risks & consequences, & the affect on your family & friends too, but most of all remember you have to live with your decision, so don't make it lightly!!!! I pray you make the right choice, & most of all GOOD LUCK!!
My op worked out well for me, & I hope whatever you decide works out well for you!! maggie28
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