We can help each other... - Epilepsy Message Board

Beth's Mom · 05-11-2002, 01:50 PM

I just started on this message board this last week but am already getting to know a few of you. If you read my other posts our daughter Beth is 23 yrs. old, was born with brain damage and resulting seizure activity. She is only 3.5 mental years but we think she is street smart in the way she gets her needs met!
Her current meds are Felbatol and Neurontin to control grand mal seizures, which she still has once or twice a week during the school year. In the summer, when we have a less restrictive schedule (my husband and I are school teachers) she has fewer seizures.
If we continue to stay with this board we will find answers in the smallest things we say, so just checking in should help.
I will be gone for three months this summer, but am hoping to have a computer working ...will check in as much as possible as feel those in "the field" experiencing various degrees of seizure activity may be the best way to combat the lack of information.
Will attempt to relay anything I find out and welcome any of your thoughts even if they are just some ideas you yourself have as to things that could be feeding into seizures happening in your life.
Lets learn through each other. Like you, I am desperate for answers that are not coming from the medical community at the moment.
Keep Talking! God Speed.
Beth's Mom

natasiatarot · 05-11-2002, 03:57 PM

hi beths mom
my mom is the one who first posted anything on the message board. i have been having seizures since i was five and am just now starting again. We are both scared with many answers. I'm just looking for anyone to help.
Please!!!
I hope beth gets better,
god bless

Gary L · 05-14-2002, 07:22 PM

Hi Beth's Mom,
You are so right. We all learn together. It is so much easier to get though anything when you have friends. I have been on this message board for a couple weeks but have been on other epilepsy message boards for quiet a while.
It really helps knowing there are others out there with the same trouble. Just reading their posts helps a lot.
I have had epilepsy since 10 months. Now 47. It has been very hard. I had surgery on the left side which has helped about 80% but still have scare tissue on the right frontal lobe, which so far, has been quiet.
Helping others really helps me mentally. I have a lot of confusion and other things, but people like you really help throughout the day.
It has to be really hard for you and your husband.
Tell Beth we hope for the best.
Have a great summer. My prayers are with you all.
Gary L

Beth's Mom · 05-14-2002, 08:46 PM

Natasia, Gary L, and All...
A couple of years ago I tried an AOL message board concerning seizures and two woman were constantly battling. I wrote to one of them asking why she hated the other woman so much...she wrote back accusing me of being in "cahoots" with the other she evidently thought was trying to sabatoge the board by giving incorrect info (hard for me to believe anyone would waste time doing that, but the world has all kinds).
So thank your mother, Natasia, for being your advocate and pioneering the writing on this site.
We are a think tank more than we know. We have more first hand knowledge and second hand knowledge than most doctors. We don't have their education, but we have "street smarts" and you can go a long way with that.
Gary L...I admire that you went through surgery...you said you are 80% cured...what kind and how often do you have seizures...what meds are you on?
Natasia, same question if I missed it in what you wrote.

My current search is in the area of nutrition as Beth is a picky eater. I know the brain damage will continue to cause the seizure activity, but because her eating habits are so horrendous, want to start with that to see if we can lessen the severity of her seizing and the frequency. Have been looking at this page on Autism and eating for some answers as Beth often acts somewhat autistic, in her own world and though she connects with us, not always affectionate, etc.... [url="http://www.autisminfo.com/diet.htm"]http://www.autisminfo.com/diet.htm[/url]

I trust in miracles in this life, but am currently looking for solutions to live with seizures. It's easy to sense the pain and frustration in all your "voices"...I know you would all like to wake up tomorrow and have the seizures be a thing of the past, but realistically we have to deal with the now.

Good luck to all. Keep checking in your thoughts and ideas and we can feed off each other.
God Bless,
Beth's Mom

Gary L · 05-23-2002, 08:49 PM

hi beth's mom,
Everything seems to be doing pretty good here, thanks to friends.
The surgery was fairly easy even though it was five hours and I had to be awake for many tests.
It was the tests before and afterward that was bad. I will not go into it, but they lost me for 18 seconds durning one test called the Wadda test. They said at least I was in a hospital. They said they kept slapping me till I came around. [think of it, I never did get that doctor back for the sore face.] Ha, Ha.
Afterwards I had so much tension and anxiety it drove me crazy. I was listening to relax tapes and talking to everyone for help. That lasted about a month.
But I go day to day. It is hard, but with message boards, what a relief.
The doctor has me on Dilantin. It was the first medicine to be tried, and helped quiet a bit.
The sezures are complex and partial. Seem to hit when I am very tired and run down. But, being like is just drains you of everything.
I know someone in California who I first wrote to and became good friends. He also has epilepsy. We made a pack that each day, through the internet, we would help others, no matter what the disability.
Need a friend, we are always here.
Just started on this board a few weeks ago.
Well I better go, I'm starved. Forgot to eat dinner. Do all of us a favor, tell beth were thinking of her.
All of you be strong, love can do that. You all are in my prayers.
Gary L