Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. The condition is named from the Greek epileps...
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16 years old =[ need advice.
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okay well when i turned thirteen , after i would wake up i noticed i would get little jerks of my arms and legs if i got up out of bed to fast or in a rush . i never told anyone because i was scared what people would think. It was scary to go through alone but i became so used of it it never really bothered me. then one day when i was about 14 i was getting ready for school and i fell down in front of my mom. i was jerking uncontrollaby however i was fully concious. she called 911 and 2 days later i was in childrens hospital in boston getting a sleep deprived EEG. soon after that they diagnosed me with JME(juvenile myoclonic epilepsy). i was devistated. however they put me on Depakote and i started gaining weigght and never had energy. I know it was stupid but i secretly wasnt taking the depakote because i was gaining so much weight. Finally i told my mom wasnt taking it, but i went for about 4 months with no jerks , i was so happy! then 3 weeks ago i got up at 3 am to use the br and wen i got back to bed the jerks were uncontrolable , and the next thing i remembered was waking up in the morning and i had wet the bed and bit my toungue. thats wen i decided to go back to Boston. They put me on Lamictal and Ativan for anxiety. I was doing great for about 2 weeks. until last saturday. i slept at my boyfriends house , ad i woke up in the morn. fell down started geeting jerks and the next thing i knew i was in an ambulance. i was so scared , and still am very paranoid. i cant sleep at night because i am so aafraid of having another. My self esteem is shot down bc all i can think about is not driving , possibly not having kids , and i dont want to be different than all my friends. i just need some advice , if possible. Thank you for reading my story. =]
Posted on 03/07/08, 10:03 am |
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You're not different from everyone. There are plenty of us out there. Like you, I was devastated when I was diagnosed and the idea of not driving really tore me up. Strangely enough, I have it's not so bad. I get around well enough.
You are young enough that you have plenty of time for them to find the right meds and live a "normal" life. But, finding those meds is a journey. Be patient with the doctors and yourself. 
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First--we understand this is hard, we are living it too. I'm sorry you are having a rough time.
second--stick around--support is good, and we can give it too you. It is always good to have those who understand what you're going through to talk to and ask questions of. third--remember--you can still live a normal life--get married, have kids, work, find the meds that control your seizures and maybe drive some day.
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Until you know for sure about the seizure type,You should hold off on driving.I did b/c the insurance rates are very high.Also, think this through,"If I had a seizure while driving and killed someone,Could I live with that on my conscience??"
I am 47 and never had a drivers license.
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We all really do know how you feel. Getting this diagnosis is not only hard to hear but at times it is hard to live with. AT TIMES.
The others here are telling you the truth. Listen. Also, I'm sure you've heard this before, but you are very young. This is to your advantage. You may grow out of this. You may not. But it is a fact. And being scared to go to sleep sometimes is also normal. Especially if that is all your mind is focusing on. I guess you found out the hard way that going off your meds on your own was a terrible decision. But life is not over because you have Epilepsy. Sometimes the more you know about something, then the less you are afraid. Research...Research...Research! But don't consume your every waking moment with this. Force yourself to go out with friends, participate in the social life your friends have. I agree with HYPER2U on all he said, read his message again. And one day you will be able to have children just like any other woman. Right now just concentrate on being 16. Children are so far off in your future that it's today you need to live. YOU ARE NOT DIFFERENT THAN YOUR FRIENDS. (take this opportunity and educate them). Good luck and let us know how your doing from time to time. We are in this with you.
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ahh hon... both my son and i have epilepsy...i am 42 will never drive because i have intractable epilepsy...my son is 15..sigh...was recently dx...his biggest fear is the drivers license as well...he is on slow release tregatol...(sp)..he has complex partial and absance seziures...sigh..
he seems to think that since day one of taking the med that was it he was cured...grin...but he does not realize his eegs are giving him away..smile...here he has to be one year seziure free before he can ever write the drivers test...sigh.. like you have already been told...if having your drivers test worth possibly killing someone??..a small child perhaps?? as for the medication...not taking it can do alot of damage as well as you are fully aware hon...sigh... my son has tried that as well..and now takes it regullary... i know its hard for someone your age and around that age to be dx..and be honest it sucks hon...you know it..my son knows it...sigh... you have to adjust to it..then accept it.. life does not end with being diagnosed hon... you are still the same person you were before being dx...you are no different... sure you will have certain boundries...and will have to adjust to them...but you are still you inside...that has not changed at all..smile my son still does everything he used to do...the only thing that has changed is two things that i can think of...he absoultly has to wear his bike helmet..no excuses...wear his medical i.d. bracelet...oops three..grin... and even though he is a strong swimmer...he has to be with someone now..which works out okay for me..if he is not with friends and feels like swimming because i need someone with me and i love swimming..grin.. mind you if that was well thought out...we most likely dont make the ideal swimming buddies...rofl... but we take saftey measures...grin and we go canoeing and kayacking together in the summer etc... and your seziures may possibly get controlled hon...mine are not..will never be...but i also have MS..that is why..but they have come a long way in controlling them...i no longer have them daily or weekly....so who says you can never have kids and do all those things??? they also have surgery available when you get older depending on which area your seziures are comming from.. there are so many options out there hon...dont give up yet..smile... hugs heather
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i got a boy of 14 with epilepsy and having no sllep will not help you ,if my son doesnt get at least 8 or 9 hours sleep he has a fit so try asking yr doc for something to help yr sleeping pattern,my son takes manatoinin
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My heart really goes out to you. Even though I'm 51 I can remember 16 like it was yesterday and what was important to me. Me preaching to you about driving is just going to go in one ear and right out the other. But what I will say is I think now you know the importance and need for taking your meds. Driving will come, even if it may not be now. I know that's hard, but if you don't take your meds you are putting yourself at risk at not ever being able to drive. Unfortunately with this condition it chips away at your neuro little by little. Every seizure you have your risking your neuro being chipped away a little more. You don't want to risk that driving. Being different? Some of us are very different and the rest of us are what we make it. Again, you need to take your meds. I tested a extreamly high IQ, but I can't drive at this time. We hope I'll be back behind the wheel within the year. My intelegence is no more than those I work with. They just have to drive when we go out to lunch, for now. Keep a positive attitude and you'll really do OK.
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Hey gurlie! I am so sorry about all these emotions and fears you are experiencing, but I am right there with you. I really recommend you remain a memeber here, you will make amazing friends that unlike many others know what you are going through.
I always tell myself things could be worse. I could have way more seizures than I do, and am thankful for the wonderful fiancee I have and the support I get from my family. Not driving is tough, especially because you just turned 16...I can imagine. I drove for about a year and a half...and that was it, I could never live with myself if I put anyone in danger or killed someone, especially if it was a selfish decision to drive. It is hard NOT to think about the future, no matter what your age is. I am 22, and so the kids/job stuff is always on my mind. Having kids is still possible, I am told this all of the time and I am on four meds...each increases the possibility of birth defects...but I will deal with each of the events when the time comes...thinking of the future will just overwhelm you. Try to focus as much as you can on the here and now...and the things in your life you got going for you. Self esteem could always be a struggle, but try not to see yourself as different from your friends...we are all different, and everyone faces their own challenges in life. Take the strength you will build from this and harness that....I got through college and looking back I know even though I am slower in classes/taking tests, I did it!!! Every accomplishment will just mean that much more. I really hope I helped a little. I get nightime seizures too...and it is frustrating because when you mostly get them in sleep you wonder why you can't drive, etc... I am here for you if you ever need to talk, wish you the best!
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If your concerned about weight, you could try the Ketogenic Diet for Epilepsy.. you WILL lose weight on that.
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hi
i also start my ep. at the age of 14yrs i had the same trouble if i got out of bed to quick i would feel jerky and sometimes i would fall. and now i stay awake in bed for 30mins and then get up as my sz are normally in the morning. when i seen all of my friends driving going out to clubs having a drink, i always thought why me. i couldnt do those sorts of things if i had a drink i would have a sz 99% and esp with flashing lights strobe lights which are bad for me i am photosencitive and have grand mal sz. i did have a licence for around 2yrs till 1 day just leaving my friends house i had a sz lucky i was only going slow i ran into a light pole and that was it for me i cut it up so i wouldnt drive again. since i had been 19 i have used public transport i am 42 now. and i love to go swimming i go twice per week at the local pools, all of the life savers know that i have .E. and they keep a special look out for me all of the time. dont be ashame of it you cant help it and the best thing i see is to tell all of your friends about it and tell them what to do because maybe 1 day you might have a sz around them so they dont freak out. and if you stay at your b/f's alot leave some medication there so you always have some there. you might end up having a sz if you miss a night or day time. i have been taking medication for 27yrs and if i forget to take mine at night i feel really funny and twitchy in the morning. but everyone is different ok bye bye take care in what ever you decide
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