hey im 24/female and i have had these seizers all my life. and i cant drive, i cant be by myself and im scared to be alone. i have to have somebody take me somewhere if i want to go. i cant work cause what if i have one at work and hurt someone. Im takin trileptal 300mg 3xs a day. i get the mostly around my period time about 4 or 5 of them. i just hate not being able to do things for my self. i have no friends cause it is hard to make them if u cant do anything. so i thought i could talk to ppl on here and make somefriends.

Well first off... Welcome, welcome, welcome.. you will find lots of buddies here. And feel free to ask any questions you have, generally someone has experienced something similiar!

I have learned many things about myself since my first seizure almost three years ago...(bare with me) :rolleyes: ... and one of the most important things is not to let this rule your life. Maybe I'm mistaken, but just from the paragragh you typed it sounded like you let E rule it. Am I correct? How frequent are your seizures?

I do not mean to lecture... its just... yes E is a challenge, but life is worth that challenge!! Hang in there sweetie and welcome to the board yet again!!

Lisa

Hi Julie Ann & Welcome!

Lisa T is a wonderful board member to look up to! Our daughter is 16 and has had E since she was diagnosed at the age of 9 months.

One thing I have always taught her is to keep her head up and we'll do the best that we can to take care of her. Sure, we had our ups and downs, but she never looked at E as being the end of a "normal" life. Everyone's "normal" is different. She has also had exposure to other children over the years, in our neuro clinic, that had more serious issues to deal with. People with Cerebral Palsey, dibilitating migraines, Muscular Distrophy, Craniofacial, etc. That always helped her keep things in perspective and not have a distorted view of life.

We never allowed Katie to be treated any differently either. She took swim lessons, was on a swim team, is working on her 2nd Degree Black Belt in Tae Twon Do (had her Black Belt at the age of 12), played softball from 3rd grade through 8th grade (and was a very good pitcher and second baseperson), has ridden roller coasters at Six Flags (ones that I must say I didn't care for, but she went on them with dad, and they are coaster freaks) and Disney World, been to water parks, has driven a ton of go-carts, and even went on a class trip to Rome for 13 days in 2003...talk about letting go, alot of meds to send for that long! The first trip couldn't have been to Florida or something! Never any different than anyone else. Many people didn't even realize she had E until we were in a situation where we had to share the info, which is the right thing to do. And at some of these times she was taking meds three times a day as well.

I'm just making the point that life is what you make it. You are a young woman with a lot of life to live yet. Are you able to volunteer? Many places can send someone to pick you up. Or are you near a bus stop? Bus drivers are trained to deal with these type of situations because many people with disabilities or the lack of being able to have a license, have to use the public transportation. You may find great satisfaction in doing volunteer work. At a hospital, nursing home, animal shelter, medical clinic, library, Red Cross, Blood Center etc. Just make some calls, they would love your help!

Do you exercise or get out for a walk in the sunshine? :cool: Fresh air and sunshine do wonders. Listen to relaxing music, not music that is full of garbage. That only adds more stress. Music that is uplifting to you.

What type of seizures do you have? Have you looked into asking about the Depro Provera shots that some women on the boards here are taking, with great success. Read some of the info on the last few pages of the thread titled "Seizures Around Your Period...", it is showing now on this first page.

Come back anytime and keep your chin up, ;)

Vicki

Welcome to the board, Julie Ann. Call me Polyanna, but I'm thinking that if you have 4-5 seizures a month, and they're around your period, how about the other 3 weeks of your life every month? Please don't let something like this define you.

Living with seizures is hard. Taking medicine every day is hard. I take topomax and tegretol xr. My seizures are controlled thank goodness.
You just have to live your life the best you can.

Hi Julie Ann... I was just checking back in on you... you haven't posted, I hope we didn't scare you away! We in NO way meant to do that or give lectures ( :rolleyes: okay maybe a little) but please stick around.

Hope to hear from you soon.... been thinking of you!!

Lisa

PS Thanks Vicki.. that was sweet! :D

Hi Lisa and welcome to the boards!

You said that most of your seizures are focused around your cycle. You may want to read the thread "Seizures happen around your period? Good News for you". There is some good information there.
I too had most of my seizures around my period and have since started taking Progesterone lozenges and get a Depot Lupron shot once a month. The Lupron ceased my period and hence, my seizures have been reduced by 80%! The Lupron has been a miracle drug for me! I was having tc seizures approx. every 10-12 days and now I can go over a month or more! In fact, right now I have not had ANY seizures since June 6th!
I am also taking Dilantin (460 mg) which honestly I do not like at all! It causes allot of problems cognitively but for now, there is no other choice since none of the other AED's have worked for me.
You may read that Lupron has all these "horrible" side affects, I did! However, I was willing to give it a chance and yes, the first two months were terrible! I went status and ended up in ICU for a week but, since that time as I stated "a miracle".
Good luck to you Lisa and please, if you have any questions about the Lupron and/or the Progesterone lozenges do not hesitate to ask me! I wish you the best!!

R

Welcome to the board Julie,
I can honestly say I know where your coming from. I am 26 and have had Epilepsy since I was 12 months old. I will tell you now, don't let it win and don't settle for what you have keep striving for that little bit better. My mother was told I would never be controled as I was having about 50 siezures a day. No joke. She was told I would need to be in special school my whole life and I would be on a pension. I have over come the odds and others can. I am down to about 2-3 siezures a year. And recently I did get a drivers license with "conditions" attached. I have a striving career as a customer service supervisor and 2 part time jobs which is horse riding instructor and graphic designing once again they are something you can do if you take little precautions. I have had siezures at work and there have been no problems. The reason I say this because it is possibile to live life with E. "Instead of running the normal mile we just become better athletes by jumping the hurdels in our way". (Something my mum told me). Are you able to tell when your siezures are coming? This can help immensly. As for work there are loads of things you can do. As for making friends, yes it is tougher because alot of people dont understand and are therefore cautious. However I know once they get the run down they are generaly pretty cool about it. There are plenty of clubs or groups that you could join to meet new people. As for the living alone part, I have found a compromise with my "watcher" I live in a duplex and my support if and when I need it lives next door. This way I still have my independance sort of. The thing is to find ways of getting around the E, once you do that you get less upset less depressed and in turn have less siezure activity. It can be done, people who tell you otherwise need to be taught some sign language as they don't listen to what your saying. I find a vertical middle finger does the trick...............lol.
Sorry if that is ofensive to anyone. Serious though if you need to chat about it there are plenty of people who can give good advice herre.
Lori

Lori - just have to say that you're an inspiration!

WOOOOOOOOOOOW! A breath of fresh air Lori! Your parents must be so proud of you! You have an awesome outlook, don't let E take life from you! I'll definately make sure Katie reads this post.

KUDOS and you continue to go girl! :)

Vicki

Lori
You are so awesome,Thanks for encouraging everyone so! I will have Bonnie read this also.

Debbie

Awwww shucks guys I didn't think I left that big of an impression. Thanks, but honestly it can be done and yes my parents are proud of me. :) If anyone needs any pointers or tips or a chat I am open to any. I know what it is like to try and talk to someone who has no idea.......lol. But being serious it can be done and there are ways of getting around what seems to be impossibile things.
Take care Lori