I HAVE EPILEPSY

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rick4122
New Member


Date Joined Feb 2006
Total Posts : 8
   Posted 2/18/2006 8:06 PM (GMT -7)   
I have epilepsy and I'm trying to find people with the same condition and see if I can find new or more information about it.

Uhura
Regular Member


Date Joined Nov 2005
Total Posts : 166
   Posted 2/25/2006 9:00 AM (GMT -7)   

By now, I'm sure you feel you've found info about it.

Uhura


PositivePerson
Regular Member


Date Joined Feb 2006
Total Posts : 84
   Posted 2/25/2006 8:12 PM (GMT -7)   
What kind of seizures do you have? What are your meds? How long have you had epilepsy?
What kind of info are you looking for? We need info to compare our life experience to yours,to see if we can help. Seizures vary from person to person.

Positive Person
ps: welcome to the forum

rick4122
New Member


Date Joined Feb 2006
Total Posts : 8
   Posted 2/25/2006 10:07 PM (GMT -7)   
I have Partial Seizuresand I'm taking KEPPRA,LAMICTAL, AND TEGRETOL XR. I've had seizures since I was 3 years old. It started when I had a little accident. I fell from a swing and landed on my head then later that night was when I had my first epesode. The type of information that I'm trying to fine is like new treatments that I have'nt tried of info that I have'nt heard of. For instant I know about EEG'S, MRI'S, CT SCANS, AND SURGERY. I have'nt tried surgery because I think it's kind of risky and I've heared from all the doctors that I've seen for the seizures that I have they don't recommend it. As for medications I've taken KEPPRA,LAMICTAL,TEGRETOL,TEGRETOL XR,DILANTIN, AND one more medication I forgot the name of but any ways that's the type of info I'm looking for.
 
PositivePerson said...
What kind of seizures do you have? What are your meds? How long have you had epilepsy?
What kind of info are you looking for? We need info to compare our life experience to yours,to see if we can help. Seizures vary from person to person.

Positive Person
ps: welcome to the forum

PositivePerson
Regular Member


Date Joined Feb 2006
Total Posts : 84
   Posted 2/27/2006 9:07 AM (GMT -7)   
I have epilepsy also ,I got it when I hit my head when I was 10 yrs old.I think I had absence szs before,but it went undectected. I now have epilepsy 39 yrs. Its been a long road. I now take mysoline and lycria. My main meds for a long time were zarontion and mesantion.I tried depekene,that almost killed me but I was sz free. Than it was mysoline and tegretol. Than I went on the expirment of felbetol and mysoline. After that I tried alot of differnet meds and my body rejected them. I had a vns inplant put in ,that was a super success .The Dr ruined that
by hoping to get me off all meds and I broke the wires in mhy neck . I never had that fixed, I have lost all confidence in the the medical field. I know my meds , and my body so I am trying alternative ways. It can;t be any worse than the medical field.

I have absence, absence cluster and grand mal.
the true medical problem is the absence,without the absence cluster theirs no grand mal for me.

Positive Person

rick4122
New Member


Date Joined Feb 2006
Total Posts : 8
   Posted 2/28/2006 1:27 AM (GMT -7)   
Well I have never tried none of the medications that you've have taken. But like I told you all the meds I've taken and out of all of them the one's that have done the trick are the KEPPRA,LAMICTAL, and TEGRETOL XR. about the DEPEKENE how or in what way was it killing you if it was able to keep you seizure free? I also had the VNS inplanted I've had it for 2 or 3 years now and I think its doing ok. The reason I say it is ok is because I can't quite tell if it's the meds or the VNS thats doing the trick. But ever since I had the VNS inplanted I'm doing much better than I was, before I was only taken my medications. So you said that the wires from your VNS got disconnected? Was it because the doctor did a bad job inplanting the device or cause you did something that made it disconnet? By alternative way you mean going back to just medications? How are absence clusters what are the reactions to it.

Rick 4122

PositivePerson
Regular Member


Date Joined Feb 2006
Total Posts : 84
   Posted 2/28/2006 8:01 AM (GMT -7)   
My vns disconnected because I was all meds and had a violent sz in the bathroom and broke the
leeds in the bathroom. That was 4 yrs ago I have never had the leeds fixed. I have been undecided
about having the vns fixed.

wishing you the best of health
PositivePerson
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