It seems my VEEG didn't yield much brain information but brought a potential heart problem to their attention. Now I have to go on the 13th for some testing along with a tilt table eeg. She mentioned some possible adrenal gland tumor. She's sending me to this cardiologist for dysautonomic syncope and said something about neuropathy something or another.

I had a "big word overload".

Not much else to say, she's going to change my meds again but is waiting until I have these other tests done first. I'm going to go Google everything else now.

Thanks for being a survivor. You are an inspriation. Your story made my day.
Someday, your son will be very proud of his mom.

Hi Ellie,

You are a great writer and take my word I can relate to a lot of what you have been through. I started having sz. when I was 10 yrs. old in the beginning it was just migraine headaches and then that led into absence sz. for me when I was in the 6th grade. My neuro at the time had me taking zarontin, tegretol, mysoline, dilantin, and phenobarbital all at the same time because they couldn't control my sz. I was half asleep for most of the day because they had me taking 106 pills a week. By the age of 12 the complex partial sz. began and I would see colors flashing back and forth in my eyes, hear wierd sounds, or sometimes just hear one word repeated over and over again. I was having over 300 sz. a yr. and my neuro found out that I had a scar on the right temporal lobe that was triggering my sz. and when I went through my monthly cycle with the hormones changing that's when the sz. would really fire up one right after another.
Years went by and I finally looked into having brain surgery done. I had to a video e.e.g. done but they had to do surgery and put the electrodes directly on my brain. My neurosurgeon drilled 7 holes in my skull 4 on the right and 3 on the left and they put the electrodes directly on my brain this is when they were able to find the scar tissue that was triggering sz. along with finding out that anything with nutra sweet (aspartame) was causing me to have sz. after sz. Later on on had ultra sound brain surgery and my surgeon removed 75% of the right temporal lobe and all of my right hippocampus this helped reduce my sz. greatly to the point where I went as low as 68 sz. in one yr. compared to 300 before the surgery. I've learned taking vitamin B12 once a day helps reduce my sz. along with putting a cold washcloth on my face and neck 3 times a day or more helps calm the neurons down in the brain and stops or reduces sz. for people I was in a medical study about this last yr. and they found each time I had any sz. my body temp. was higher even before the sz. so they told me to put a cold washcloth on my face and I was amazed to see that it helped reduce my sz. even more. When it comes to having sz. during your monthly cycle start eating peanuts or almonds because they have progesterone in them and progesterone helps calm the nerves down. What's happening is when a woman goes through her cycle the estrogen level increases which causes more excitment in the brain and the progesterone level decreases and there's less calming of the nerves and this is what triggers sz. for some women. They have also found out that keppra can increase sz. for some people I know keppra caused me to have drop attacks and myoclonic sz. which I never had in my life until I went on that. Also neurontin can be dangerous for some people the last I knew the drug co. making neurontin had $240 million in lawsuits because the drug was causing people to start having sz. that never had them before. I know the drug messed me up terribly.
Just keep your chin up and have faith because there's a reason why all of you have gone through the epilepsy and all that goes with it. I know it's made me stronger in life. Here's wishing You Well and May God Bless You!

Sue

Ellie,

Your story is an inspiration. And you are truly a beautiful person inside and out. i hope that now things have gotten better for you since this post by you was in 2006.

i have some things in common, i have trigeminal neuralgia on the right side of my face and have nueropathy so I so know what those electric shocks feel like. I have FMS too and have had electric shocks all over my body for hours where i was curled up in a ball from the pain.

Porkette is right about B12 helping for this type of thing, although I didn't realize it helped with seizures but it makes sense. I take 5000mcg, well; just looked at the spray I use for it and it is 1.2mgs. i don't think that is as much as I was taking. anyway, using a spray from or a sublingual form where it disolves under your tongue is the best way to take this vitamin for most of it to actually get into you. If you take a pill that you swallow not as much is being used by the body and gets peed out if you will. this has helped my restless legs syndrom and my trigeminal neuralgia as well as the neuropathy. I am also on neurontin which helps with all of the nerve pain too.

Porkette you mentioned a big lawsuit by neurontin users could you tell me a little more about that?

thanks and stay strong Ellie!

Sara