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.
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.
I hope beth gets better,
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.
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.
I hang out with lots of people. I love to help.
The doctor said he was just trying to bring he back. Fortunately though, I don't have any more of those test, so I have not seen him simce. That was 12\28\95.
Have a good day, my friend, God Bless.