Hello -- 2 questions

[Cathy]

Hello, my name is Cathy and I recently stumbled on this site and have been reading the postings and information with much interest. I am in my 40's, and have had simple partial seizures for the past three years (no idea how or why they started). They are all cognitive in nature, and I average about 20-25 a month. I have tried quite a few anti-seizure medications, and am currently on Zonegran. This is the one that seems to have the least amount of side effects concurrent with the least amount of seizures. My neurologist is a specialist in epilepsy out of Columbia Presbyterian in New York City.

The reason I am going into all of this is that my neurologist and her team believe that my seizures are causing me progressive and permanent memory loss. We are currently trying to quantify that, but it is not that easy to do. My team of doctors want me to seriously consider surgery, and to start looking at the feasibility of surgery. I have just undergone extensive neuropsychological testing, and the next test they want to schedule in the next week or so is a Wada test, which I understand looks at what side of your brain your cognitive and speech functions are located.

Two initial questions: has anyone undergone a Wada test and if yes, have any comments or feedback?

And second, surgery scares the crap out of me, but so does the thought of progressive and permanent memory loss. Any suggestions for perhaps how to try and quantify this some more? Or suggestions for alternative therapies?

I really appreciate any feedback anyone can provide. It's nice to know you are not alone.

Cathy

 

[Meetz1064]

There are

several on here who have gone through the WADA, and several more who have had brain surgery, too. Be patient, they will eventually show up. There's at least 5 that I can think of.

I will say that my memory, after almost 45 years of seizures, is not the best, either. I work on it by dionog crosswords, Sudoku puzzles, and similar things.I still have issues, that's true, but it's not as bad as it was..

Welcome to CWE. Feel free to check out all the nooks and crannies here. There's plenty of good information to be had here, and friends to make.

I wish you luck.

Meetz
:rock:

 

[Bernard]

Hi Cathy, welcome to the forum. :hello:

The reason I am going into all of this is that my neurologist and her team believe that my seizures are causing me progressive and permanent memory loss.

My wife has experienced tremendous problems with memory loss before. There was a point in time when she was experiencing very heavy seizure activity - TCs 1-2 times/week, atonic and cp seizures daily, etc. She was basically a zombie/vegetable - napping on the couch all day long and unable to speak in complete, coherent sentences or remember what she ate a few hours ago or even the names of our children. It was a really scary time.

The good news is that once we finally got he seizure activity under control, her memory recall started improving/returning. If you met her today, you would never suspect she ever had any problems with memory. Although her memory has never returned 100%, it's quite amazing how she has been able to re-establish recall from past events.

Two initial questions: has anyone undergone a Wada test and if yes, have any comments or feedback?

You might check/ask in The Laboratory.

... suggestions for alternative therapies?

EEG neurofeedback, a pseudo-LGIT diet and a 9/hour night sleep regimen have all helped my wife tremendously. Have a look here:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Nakamova]

Hi Cathy --

I was on Zonegran for about 6 months, and I found that it affected my memory and my thought processes. It sounds like the Zonegran is working better for you than other meds have, but is it possible that it is contributing to your memory issues?

Best,
Nakamova