I'm so sick and tired of having epilepsy. It's starting to get on my nerves. I'm 18 and have had it since I was six.

Over the years, i've been through everything, on every medication, had the brain surgery etc. Nothing seems to completly help me. I've gained weight, damadged my eyes and lost some memory all thanks to this disordre.

People are still stuck with the stereotype that epilepsy means that you swallow your tongue or collapse on the floor. I find that people are so uneducated about this disordre. Yet it effects so many of us.

I hate that i can't drive, it's finally starting to get on my nerve. I hate that I have to take 10 pills a day, not knowing the long term effects they have on my system.

I hate how there is no cure!

Anyway, that's my rant for today...just needed to vent and I figured this was a good place to do it.

thanks for listening!

I understand your frustration. I had epilepsy as a teen. I know how angry and depressed it can make you. Finally, one day I just decided that I was tired of feeling angry and depressed all the time and became determined to be just a normal teen like everyone else. I decided I wasn't just going to spend so much time worrying about when the next seizure would come that I was missing out on the fun of being a teen. I found that when I stopped worrying about the next seizure so much and put my mind on school and making friendships and keeping active ... I actually started to feel better physically. I just recently read an article that stated that studies show that people with Epilepsy that stay active and busy tend to have fewer seizures. I'm not saying this will stop your seizures. All I'm saying is I found that when I tried to make the best of what I felt was a terrible curse, things began to turn around for me and I ended up having a pretty normal teen age life. My heart goes out to you. The frustration in your message is loud & clear. I've felt the same way and am here to tell you that some times you can help yourself just as much as any doctor or medication can. I hope this helps in some small way. Take care.

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Dee
: )

http://www.geocities.com/Hollywood/Hills/2844/mso_charlie.html

i don't quite know how to word this,but i dated an abusive man for over a year who had epilepsy.
he was twice my age,he's 55.
he was very hot and cold the whole time.he'd be my friend,then he'd turn a 180 on me.things would go smooth for months,or weeks,then he'd become a tyrant!i mean it!
can someone tell me if they think this could be due to his condition and/or meds?
i don't want to excuse his behaviour; however i'd like some answers,as he has given me none.
he is very secretive in general.
his verbal anger and hostility has had me spiritually shattered at times.
just wondering.thanks.

Originally posted by pert:
i don't quite know how to word this,but i dated an abusive man for over a year who had epilepsy.
he was twice my age,he's 55.
he was very hot and cold the whole time.he'd be my friend,then he'd turn a 180 on me.things would go smooth for months,or weeks,then he'd become a tyrant!i mean it!
can someone tell me if they think this could be due to his condition and/or meds?
i don't want to excuse his behaviour; however i'd like some answers,as he has given me none.
he is very secretive in general.
his verbal anger and hostility has had me spiritually shattered at times.
just wondering.thanks.

Is he on depakote? My brother who is 50 began to show these mood swings after his medication was changed to depakote. After six months on the drug, symptoms became much worse - hallucinations, psychosis, compulsive behavior, loss of short term memory, loss of reality. Please consider his meds, my sister-in-law didn't, and she left my brother http://www.healthboards.com/ubb/frown.gif

hey guess what! it's been awhile and the epilepsy is still annoying! lol

Hi Megster - I'm the mom of an annoyed teenager with epilepsy. I have no advice,just sympathy. It must feel like your life-kite keeps getting stuck in the tree instead of soaring and that sucks. About 20 years ago a book was written by some rabbi about bad things happening to good people. That was supposed to give us inspiration, I guess. I didn't read it at the time because there was no need. My mom brought the subject up the other day when I was down in the dumps over how our daughter's seizures have affected our family. Yes dear rabbi, bad things happen to good people, but the problem is that it is VERY hard to be philosophical about it - as your postings show. Epilepsy is a hidden condition - no one knows about it until you have a seizure and then the whole darn mall, beach, party, school (whereever) knows. You want your privacy to your own disease but might also want to tatoo "epileptic" on your forhead so others won't freak out if you have a seizure. It really irritates my daughter when I have to orient any of her new friends on what to do if she has a seizure when she is with them, but jeez I wouldn't want them to wreck the car by freaking out. Megster, if you don't have a therapist specifically trained in helping people (especially teens) with life altering medical conditions, please get help finding one - there you can rant, rave, swear,cry, grieve the fact that you have this condition that truly sucks and work through the saddness you have. Believe me, it is a sad thing and you deserve comfort and help. The mom in me is afraid that if you don't then you will get stuck in this science fiction kind of LOOP and won't move on to adulthood and "acceptance" (I used that in quotes because it is such an overused term and can picture you rolling your eyes at me :-)) Did you ever see the Bill Murray movie "GroundHog Day" where he kept waking up and having to relive that day until he finally got it right. That is what happens to people who have "issues" (oops another psychobabble word) and can't work through them. Keep on working on it and feel free to post your frustration and anger here. I'll check in periodically and see how you are doing. - JBC

I have to agree with megster, I was diagnosed about 7 years ago and I still find it annoying. I also take 10 pills a day which I hate and can't drive. I hate having to rely on people to take me everywhere. We also have a transit strike right now (which has been going on for over 3 months)and that just makes it worse. I can't even have someone babysit and take the bus if I need to do something. No, someone has to drive me. What really bugs me is the fact that I need to tell people half the time that I have epilepsy just in case I have a seizure. This was at my job etc. It is really embarrasing when you have a grand mal in public. I was in the middle of a hair cut once when I had one. My husband called the next day to speak with the hairdresser as we hadn't paid and she said to come in and she'll finish. I was embarassed but decided to go anyway. Of course when I went in all the hairdressers were staring at me and whispering behind my back. People can be so rude. I guess that's also my rant for the day.

I understand how annoying epilpsy can be I have had it since I was nine I am now going on twentythree,what I have to say is do your best not to let the epilepsy get you down.I hope you improve

Megster-Don't let it get you down. With medication I am seizure free and able to drive.The side effects are nothing compared to the potential of not taking medication. We never know sometimes why God allows things like this to happen, but rest asured, He has a reason. I was about 60 years old when I developed epilepsy, and had no knowledge of it ever being in my family, so one never knows when it will strike. Learn to live with it like I have.

Megster: I was 48 when I had my 1st seizure
Couldn't drive, had to take meds I had no
family history of epilepsy. What might help
is if you find some kind of support group in your
area. I don't like it either and I am a Police
officer / E.M.T.

Originally posted by DfromGA:
I understand your frustration. I had epilepsy as a teen. I know how angry and depressed it can make you. Finally, one day I just decided that I was tired of feeling angry and depressed all the time and became determined to be just a normal teen like everyone else. I decided I wasn't just going to spend so much time worrying about when the next seizure would come that I was missing out on the fun of being a teen. I found that when I stopped worrying about the next seizure so much and put my mind on school and making friendships and keeping active ... I actually started to feel better physically. I just recently read an article that stated that studies show that people with Epilepsy that stay active and busy tend to have fewer seizures. I'm not saying this will stop your seizures. All I'm saying is I found that when I tried to make the best of what I felt was a terrible curse, things began to turn around for me and I ended up having a pretty normal teen age life. My heart goes out to you. The frustration in your message is loud & clear. I've felt the same way and am here to tell you that some times you can help yourself just as much as any doctor or medication can. I hope this helps in some small way. Take care.




I know exactly what you mean. I was having petit mal seizures for years, and no one knew what it was... but anyway, it was soo annoying., i hated spazzing out all the time and not feeling well. and then when I had a grand mal seizure back in Janurary, for months I just lived in complete fear. I was so afraid it was going to happen again, and i got so depressed because I was afraid I was never going to have a normal life again because I didn't know what would happen next. I'm finally starting to be able to almost forget about it. I'm taking control of my life, and not letting myself dwell on what could happen. I just noticed that I'm enjoying my life so much better now that I've been thinking more positively. and on the days that I don't feel good, I'm learning to put it all out of my mind and ignore it. I tell myself that it's not going to happen. it's not easy to do at first, but it really does help.

~Krista
:o)

you need to chill out little girl! Having epelispy from 6-18 is pretty good. I was born with it. I have also lived with alot more. I also cant drive big deal one thing less. epelispy is part of my life. And its part of everyone life on this board so live with it and whether you know it or not ITS A GIFT.

I know how you feel. I had epilepsy for 27 years before I had brain surgery. I felt the same way as you. Luckily, I have been seizure free since.

Have you asked about the Vagus Nerve Stimulator? That might help.

hey baby girl -
i have had seizures for 26 years. had brain surgery in 95. helped - only have 2/3/4 a year. okay with me! i've seen worse. i feel blessed. when i had my first grand-mal seizure at 17. i was sooo depressed. i tried to commit suicide at 18. i thought i was the biggest freak. i hated taking med's everyday. the DMV envoked my license, had to sell my car. :-( .. i have 2 children. in perfect health. after brain surgery i didn't have a seizure for 2 years. DMV returned my license, needless to say i had a grand-mal, now i don't drive and NEVER will again. however, i am all good. take care and good luck. it's NOT all that bad.
elleigh

I'm 30 yrs. old and have had to deal with seizures for 20 years, so I know how you feal. But when ever I get frustrated about these seizures, I remind myself of a few things. One is that a lot of famous people in history had epilepsy, the ones I always think of are St. Paul, Julius Seazer, Sr. Isaac Newton, and
James Madison. I always say to myself that if they were able to get on in life, dealing with seizures, then so can I.
When it comes to society, and its fear of epilepsy, I always remind myself of something a
6th grade teacher told me. She said that when ever someone acted afraid of me,or you, to remember that they were just afraid of the seizures and not me,or of you. I've also considered this a way of finding out who my REAL friends were. You should keep that in mind.
I was just thinking, I've had neuro-surgery done in the past and it didn't totally get rid of my seizures either. My doctors are eventually going to have me tested again to see if I'm a candidate for a second operation. I know one man who had to have two operations before his seizures were under control. Maybe you should ask your doctor about that.

Hi to all in the Epilepsy world!
Living in hospitals was part of my 30 some odd year life. Not being able to remember much of my growing up years, all just a fog, and can't recall many memories of bringing up my 5 grown children. Drs. would think I was deaf, what really was were the short memory span. An operation on my inner ear was scheduled. Ha ha .. I didn't go through with it. The not being able to drive business, depression, people talking (or at least you thought they were) behind you, just living a life of 'I'm no good for anything' was all there.
I now have a part time job, as caregiver with the mentally and physically challenged, and am able to have my own business I run from my home. Drs. were able to cut my drugs in half, although said I would never be off them completely. All of this because I was introduced to a great multivitamin supplement program which I take faithfully. The seizures have more or less stopped, and within a couple of weeks of starting this program it was like a fog lifted and all of a sudden I was back on earth from some outer planet.
Drs. would always ask 'are you on a good diet'? All I knew was to say yes, but no help was offered. It was what my brain was crying for a little food I guess.
Both our one daughter and her young son also have epilepsy, so it is all a bunch of bull too when they say it is not hereditry.
If you don't get satisfaction from one specialist, please go to another. I spent years with the same one. I would go in, he would give me a different drug send me home and tell me to come back in a year. Said EEGs were A O K and nothing wrong. Finally went to another one and when files were asked for, our first Dr. said again 'nothing wrong, she is one good actress, the tests show nothing!'. Try another one, get a second opinion. Drs. can be wrong.
Take care
Julie

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Hey megster! My name is Megan I have had epilepsy since birth I couldn't agree with you more about how annoying having this disorder is or how stupid people can be about it! The problem is you hear tons on other disorders but not epilepsy some people when I have told them I have it have asked I thought only mental disabled people have it! The worst for me is they can't find a med that works and they are putting me on so much of it that it is a wonder I am still here. My depakote is causing cists in my body and hair thinning it may not be noticable to others but I know and it stinks. I know that the med is going to have a long term effect on my liver and other parts of my body and it sucks! I can't remember my childhood. I had a child of my own and almost lost her from seizures and the medication! At only 22 I was told I can't have anouther child ever and I got lucky having this one and had to tie my tubes! I worry about the effect all of this will have on my daughter. The worst part of it all it was my mother's drug abuse while pregnate with me that caused this and I have to suffer not her!
Thanks for letting me vent too! Good luck and I hope things go better for you!

Normally I'm pretty upbeat but today I'm bummed. I was 3.5 months into a 6 month not being able to drive and I had a partial complex and now I start all over. I can't even drive around to decorate my house for Christmas like I want it and I have 20 guests who will be over for Christmas. They are getting more frequent and more frustrating. I can't say they've hurt my life only that they are an annoyance and the timing for Christmas is bad. It also puts the Tegretol in question. I had taken it 2 hours before the event. I was really hoping Tegretol was the one. But I will be strong, remember the positive, and work for the future. Best to everyone.

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Sarah

Labs-R-4 Me :
Sorry to he about you seizure around
Christmas time. I think most people on this board
are there for you ! Are you able to go to any
support group in your area ? That might give you
some encouragement! Take care If I can be of
any help contact me at steve5730@email.com
Peace
Steve

Having epilepsy really does suck. Not being able to drive (or drink), popping pills every 2 seconds, seizures in public. But I think it has made me stronger in a way. I go out of my way to educate other people about my disorder - I just did a big project in my neuroscience class and I really think I educated a lot of college students about epilepsy. Maybe it's only the strongest people who get presented with adversity - someone out there knows we'll be able to cope with it. Also, I feel more grateful for everything that I DO have - I can still walk and talk, my memory is not the best (from Topamax) but I can still manage to get decent grades, I have loving family and friends. Life can be tough, but it's all about attitude. I will survive! -TMBGfan

I am also sorry to hear about your seizer around Christmas time.. I often feel down about my epilepsy everyone has thier day feeling down in the dumps about having epilepsy.. The other day something happened to me that really made me stop and think.. I got told I have cancer in my uterus lucky for me my doctor caught it in time and I will be okay. I realized now that I don't have it so bad.. we are all still able to live a some what normal life when others can't they are fighting hard just to live one more day. I don't feel so bad having epilepsy now because atleast I can be here for Christmas to watch my little girl open her Christmas presents on her second Christmas! Try to think possitive I know I don't always either but think atleast you get to be here for Christmas! I wish all the best and happy holidays!

i think that all of us have very different experiences with epilepsy don't we.

back to the original subject, i find that as i get older people become much more accepting of my epilepsy. (duh!)

anyway, there's another of my two cents.

There is some good info in this old post and I decided to bring it back to life hope it help someone

Yolos Hubby
Gerry

Wow, thanks Garry these are wonderful. I want Jenny to read them.

Your wifes a lucky lady to have such great support.

Lisa and kids

i wonder where all these people went??? all these names, and I dont recognize any of them. I hope they are doing well. I know when i first found this board it was kind of slow, so maybe thats what happened???

Hi All,
I have asked myself the same question (where all the old board members went) over and over. I've been a member since 4/02, and I don't think I recognize anyone that was a regular back then. I think many members come here to get some information....some for support. Once their goals have been reached they bow out. I have to admit that I've taken breaks off and on myself. I think the key is to work together to keep posting interesting topics, then to keep tabs on one another to make sure we are feeling supported. We also need to respect each other. I think we all do a great job with all of the above. I hope we continue to remain "E" E-friends for a long time. Be well, Kathy