Mayo Clinic Connect
Am yeye2020my son has been battling with seizure for 22 years and he was under carbamazepin -Tegretol.please, is there total cure for seizure
HI My Name is Br Jude Vo. I am 39. I have had seizures since I was 7. I am on topamax 200, Keppra xr 750, & Tegretol xr 400. I have been on this combination now for almost 6 years. It has stopped my seizures but the side affect is that I have really bad memory. I would like to go back to college But I am hoping I can have the surgery & get off of the meds so I can go back to school. any suggestions? Help!!! does the Vagus Nerve Stimulator work in place of meds?
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Every person I have talked to either in person or on a forum whether here in the USA or abroad with Epilepsy, ALL have complained about memory problems whether caused by seizures or meds. Mine are quite severe, I have no memory of my first 15 years caused by Retrograde Amnesia as a result of Convulsive Status Epilepticus. So unfortunately In my unprofessional opinion your memory issues are very likely here to stay. I use to be a very active Scrabble player which I hope helped and try to do other word games and memory exercises as well. Wishing you the best of health and memory.
Liked by Colleen Young, Connect Director
The Vagus Nerve Stimulator in my opinion has to many side effects. I have known many people who had it and over the years turned it off due to side effects or not helping their seizures. I had a very dear friend who who had one and he felt it helped although he continued to have seizures. He died of Convulsive Status Epilepticus. There is a lot of information on the “VNS message Board” although not very active now there is much information there including death, malfunctions, injures, removal and failure to remove and personal experiences both good and bad. I knew the lady who started the VNS Board and have the utmost respect for her for her diligence in exposing both the good and bad. Please do very thorough research on this and any product being offered.
Best of luck to you.
Liked by Leonard
First, seizures are very individualized and what works for one may not work on another. There are at least 49 types of Epileptic Seizures, some controllable some not.
The Vagus Nerve Stimulator in my opinion has to many side effects. I refused having it implanted primarily because I wasn’t comfortable having a wire wrapped around a vital nerve and the time not being able to remove it. Even today there are risks to its removal if it can be removed at all. I have known many people who had it and over the years turned it off due to side effects or not helping their seizures. I had a very dear friend who who had one and he felt it helped it helped although he continued to have seizures. He died of Convulsive Status Epilepticus. Obviously didn’t him as much as he thought. There is a lot of information on the “VNS message Board” although not very active now there is much information there including death, malfunctions, injures, removal and failure to remove and personal experiences both good and bad
I knew the lady who started the VNS Board and have the greatest respect for her diligence in obtaining the truth about it, both good and bad. Be sure to throughly research any implant before going forward with any device.
Best of luck to you.
I've had seizures from the left temporal lobe that were complex partial since age 2 that we know of. A neurologist said I was born with them from a lesion I got when my mom was sick and had a fever when she was pregnant with me. It depends on what type it is, where it comes from, meds taken, surgeries done. I don't recommend Tegretol because it can hurt your liver is what a neurologist once told me, but everyone is different
It's not just the meds that can influence your memory. Mine came from the left temporal lobe as a result of a lesion formed during my mom's pregnancy when she was sick from a fever. The left temporal lobe handles short term memory, reasoning, and sequencing, After I had several thousand seizures I had a lobotomy in 2011that removed the lesion and the entire left hippocampus both handle short term memory, reasoning, and sequencing. I don't think I would be able to do it now but in 1998 I got a bachelor's with a concentration in social studies to teach elementary school. However, you can take classes online to individualize lessons you want to take. Good luck and let Jesus take the wheel
VNS works for some people not everyone. My seizures it would not work said my dr. I friend I have where seizures are coming from brain stem it does, but everyone is different
@Brjudevo First of you all I can’t understand why you’d ever consider something as invasive and dangerous as brain surgery if your seizures are controlled. You may come out of surgery with a worse memory than you have now. I’ve known lots of people who went to college and did very well while on meds.
Speaking of the VNS studies show approximately a 50% seizure reduction in 20 to 55% in some patients with some people with no improvement in others. In addition most people have side effects. Poor odds in my opinion.
I hope you're not talking to me b/c you don't know my seizure history. I did go to college and have a BS in elem ed. with concentration in history. Meds were not working so my seizures were not controlled. I've had several 1000 seizures in my life and I'm in my 40's. VNS wouldn't work either is what we were told so I decided to try the surgery. I never taught except in my Church but seizures are being controlled. I am now taking 4 meds and I now have a son. God has had the wheel in my life
Yes I was talking to you but was speaking in generalities. How many seizures and what type did you have prior to your operation?? Congratulations on your education.
mostly complex partial coming from the left temporal lobe. One time before the surgery I came to the hospital because of the seizures and their frequency to be monitored by machines and tests. I had 181 seizures in a 10 day period with 2 heart attacks, but God wasn't ready for me. The drs induced me into a coma to get the seizures to stop. I woke up I don't know how many days later but I decided that something had to be done. We knew from the testing where the seizures were coming from and what had to be done so I decided to improve our lives by going through the left temporal lobe lobotomy and removal of left hippocampus that I found out was smaller than it should be. I had to go through a lot of therapies as a result-ot,st, pt and be at a nursing home to have it done, but this year I've had 2 seizures. I'm going to see a speech therapist for anomic aphasia on July 3rd
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