Video EEG second one why? not surgery?

[Teeger671]

Ok so my Epilpsy began at age 12 the same day I had my colon removed. That surgery was the worse one so far left me with brain dammage and in a coma for 3 days. People told me if I had had that seizure anywhere else in the world I would be dead.

so that was like 19 years ago now. Since than I ahve tried multiple meds and about 10 years ago had my first video EEG where they determined that seizures move in my brain so removing seizure brain wasn't an option but I was a canditate for the VNS. I won't get into much detail but with the VNS and the meds I am on I am still not seizure free and my doctor wants me to have a video EEG again......and I don't want the few surgery options that didn't exists 10 years ago so I realize brains change with time....but I so would like some reasurance from someone not trying to make money off me having any surery or test that something they learn by doing the video EEG again will effect treatment in some way.

Currently very frustrated and stress about this and dealing with a lot of illnesses besides epilepsy.

[Bernard]

Hi Teeger671, welcome to the forum.

Why did you have the colon removed at age 12? The first thing I thought of when reading your post was Zoe's post about the "gut brain".

I'm wondering if you might respond well to the GARD diet. It was designed to help folks who are having problems with the gut/intestines.

At any rate, make yourself at home here.

[RobinN]

Hi Teeger - Welcome to CWE.
I hope some of the frustration can be released after reading a bit here on the forum. I just googled seizure / colon and found some interesting reading. I believe my daughters begins in the intestinal area, so this is of interest to me too.

I agree we all need to be aware of the money making side of medicine and peoples health. It is so easy to be drawn toward those magic potions, as we want so much for some type of answer.

Hang in there. Let us know how we can help.

[Teeger671]

Thank you very much for the replies.
I had my colon removed because of severe Ulcerative Colitis...it could have killed me with the amount of blood loss I having.

Although I will look at the diet I am so many diets right now that avoiding more foods is not a good idea for me since I am already under weight.

I am currently signed up for April 14-19 in Milwaukee for the video EEG. I have some time to decide if this is the right path to take but currently need a lot of questions answered esp. if the real point is to consider another surgery for my Epilepsy.


I am curious if anyone here has had any success with herbs for Epilepsy?

Thanks again!

[Bernard]

Although I will look at the diet I am so many diets right now ...

Would you mind sharing what diets you are following?

[Teeger671]

It isn't really that simple. I am avoiding a huge amount of food that I can't tollerate because of one condition or another....mainly severe IBS/ibd...my jpouch is pretty sick....and Interstitial Cystitis. That maans avoiding acidic food, fats, any high amount of insoluble fiber, than just trying to avoid feeding yeast. I already don't know how to eat and avoid all things all of the time. Especially this time of year when fatigue is high it is especially hard to get myself to eat as it is since I have had too much experience with eating anything leading to severe pain.

Why do you feel I specifically would respond to the GARD diet and is there anyone that knows the answer to weather there is really something to learn from a second video EEG that can help treatment that is not surgical?

[Bernard]

Did you read Dogtor J's site about the GARD? It is based upon the GFCF diet commonly used for Celiac disease (for people whose guts are sensitive to certain foods/compounds).

Seizure patterns can change. My wife's has changed dramatically several times over the last decade.

A second video EEG can help diagnose what is happening in your brain now (as opposed to whenever the first one was done). It may offer an indication as to focal points for the seizures and suggest appropriate treatments (surgical or otherwise). That's my undertsanding anyway.