Hello Everyone

[Tiara]

Hi i am Tiara. i am 18 years old and have only been diagnosed for a year. i have had a hard time dealing with this. the first time that my family and i know i had one was when i was up camping. it took over an hour to wake me up. and that was with an oxygen mask on. my seizures come in pairs of two. after my fun trip to the hospital i slept for the next two days.
when i got home we went to see a nuerologist that didnt tell us anything. he put me on three different medicines in less than a month. he didnt listen or care about anything i had to say. i got extremely sick off two of them the onlyone i have been able to stay on for more than three months is keppra.
i then gave up on him because we werent getting any results. i was having two to six seizures a week. i then went to see the third ranked neurologist. he had me go in for my second and third eeg and in my last eeg i had a seizure and through more research we found out that there is an abnormality on my brain. my neurologist thinks its like a birth mark. this is causing seizures up and down my left side only.
having these seizures to me has stolen my senior year. i lost last summer not being able to drive and quitting my job. but now having friends look at me diferently and making fun of me. along with this i have been very sick and out for over a month of school. my neurologist thinks i have been having seizures in my stomach. i am slowly getting use to my new life and dragging my boyfriend and family with me. im not sure what to do. i have put everyone i love into stress and anger.

[brain]

Tiara!

Welcome to CWE and so sorry you had
experienced seizures. As for the anger
and stress and you mentioned being on
Keppra - it's possible that Keppra could
be the issue; have you ever discussed
it with your Neurologist?

I can understand your frustrations of
having other kids making fun of you,
people can be cruel sometimes, as well
as adults and it's often out of ignorance
or just plain being mean. And it hurts
deep inside of you, been there many
times.

Here at CWE we have other teens at
your age who are in the same boat as
you are! And they'll be GLAD to be yakking
up a storm with you!

(Trust me on this!)

[alivenwell]

People can be so cruel and ignorant about epilepsy. It's great that your boyfriend is still there for you. He must have some strong feelings for you. I've deliberately dumped guys simply by telling about my epilepsy. It's a true test of loyalty there.

One thing I learned a few years ago is that once one seizure starts (especially a major one), several smaller ones will follow it until everything is settled down again. I did not know that one and presumed the subsequent seizures were due to my lack of medication, poor stress management, diet or something I was unable to figure out.

And, the total change in your lifestyle is one that very few normal people go through until they might become really old. Let's look at in another perspective. Today, kids are obese. People who do not drive have to walk everywhere. If you do a lot more walking, you are starting a really healthy lifestyle. Because I did not drive for 20 years, even though I could have started doing it a few times, I walked a lot. I still walk a lot and I personally find it is a great stress buster. Stress is a big factor in epilepsy. So, a good workout or a long walk will not only improve your health, but it will also help your stress level. I'm back to driving again, but I still walk 2 miles every night with my really active dog. We also play a lot and have fun.

[skillefer]

Welcome to the group! I'm sorry to hear that you're having a rough spot. You'll find a lot of people, and several teens here that are more than willing to answer any questions that they can. The thing is, to try to stay positive. I'm 36, having my first seizure at the age of 4. Today, I have a master's degree, driver's license, and wonderful husband. Yes, it's depressing at times, especially when you're a teen and it seems like you're the only person with this particular problem. I remember. But you've got to do your best to keep your chin up. Life is so short. When I was growing up, my mom kind of hovered over me, and wouldn't let me do anything that would over exert me. That included swimming. The only time I could swim was if my much younger brother went with me. I remember feeling guilty when I woke up from a seizure and saw the fear and anxiety in my mom's eyes. I remember kids at school being stupid and mean and making jokes about me. You know what? (Some teens are like that. And unfortunately this is when you're going to find out who your friends really are. ) But I decided a long time ago that I was not my epilepsy. I was me. With all the strengths and imperfections that I have. And I decided, that I was not going to let this one thing keep me down. I was going to go and be everything that I was meant to be. Get a neurologist that will listen to you and take the time to answer your questions. After all, it's your brain and your life. If they prescribe meds, ask about side effects. Ask whether or not it's safe to get pregnant on. You may not want kids now, but you may in the future. Be kind to yourself. Take care of yourself, physically, mentally, and emotionally. Talk to your parents about the seizures. It probably scares them more than it does you. And sometimes, just talking about it can help ease their fears. You can always tell them to come to this site. They might not feel comfortable talking about the seizures with you..whereas here, there's a degree of anonimity and they might feel safer asking questions and expressing fears. But whatever you do, hold onto your dreams. I always wanted to be a school teacher. And now, I am. I teach high school. I've had several seizures in the classroom (and I have the big scary grand mals ) But my bosses and students have been fantastic. So Tiara, welcome. Check out the library, do a bit of reading, and ask questions.

[skillefer]

Oh man! Did I get chatty or what?

[Birdbomb]

Welcome Tiara

It's hard adjusting to a new lifestyle we didn't plan on. But it will get easier. You have been given excellent advice and I'd like to add my

Learn everything you can about your condition. If you are not happy with your doctor and not getting answers, get another doctor. You will need to take an active part of your treatment to get your seizures under control. Education is the key.

[Bernard]

Hi Tiara, welcome to the forum.

It sucks when life doesn't go according to plan.



I'd recommend that you focus on the good things in life ... like Conan says:

[Tiara]

Oh man! Did I get chatty or what?

no but thank you i have been wanting to come on here for a long time but finally decided it was time. my mom is the one that suggested it actually. but thank you i feel a lot better knowing that im not the only one. i am the only one at my school and it is scary not knowing the reactions you will get from people

[alivenwell]

Bernard, that was sickeningly funny! I had a good laugh.

Tiara, you might be the only one who can't hide the epilepsy. I would bet there are other kids there who are afraid to tell they have it because of the harsh treatment.
I played piano while all my 16 year old friends were driving around in their cars. Now, one of my strongest interests is music. Art is one of my other passions. Both art and music have really helped me combat stress. I wished adults as well as little kids would get that set of crayons at restaurants. I know I'd use them! I love to draw.

Ironically, one of the top students in my class used to ride a bike to school as a way to fight pollution even when he was over 16 and able to drive. I'm now beginning to think he was right. Pennsylvania Amish also do not drive. They have some of the most beautiful country land properties and they can pay for that property with cold cash.

Hopefully, guidance counselors are assisting you in choosing a career. I encountered one that told me I'd never make it through college prep. I fought her attitude and won. I now hold several technical degrees and could be a math teacher.

I'm not sure where you live, but in the USA, there are state run vocational rehabilitation programs for people with disabilities. My first degree was paid for by a program like this. I had to go through a physical exam with a neurologist to verify I had epilepsy and a series of IQ tests. There are on line colleges available all over the country. Our local community college has on line accredited courses that apply toward a degree. This type of program could help you plan your future while your epilepsy becomes more controlled.

This will really tell you who your true friends are. For practically my entire life, I had dogs. I now have a smart border collie mix who really needs a lot of attention and exercise. In the 5 years that I've had her (6 years this month), I walked with her every night. That walk gave me a fresh perspective of any issues that were bothering me. And, I would come home and quickly solve hard math problems, computer bugs, etc. that seemed really difficult before I'd get outside with her. Ironically, I did not drive when I first got her. Now, I do have a license. I think the dog helped me.

[skillefer]

Trust me, Tiara, I understand. I always found that my really close friends handled it better than I thought they would. Most of the time, they were curious, but were afraid to ask me questions. They thought the questions would hurt my feelings, or that I didn't want to talk about it. But, once they knew what to expect, and how to help me, and they saw that the rest of the time I was the same as I was before the seizures, they were cool with it.

[RobinN]

Tiara - you are exactly where my daughter Rebecca is at. Except she had her first seizures the summer before starting HS. This was her first introduction and boy has it been a ride. She just had a tonic clonic today in Math, and one last Tues in home room. It is her TOM and they tend to like that time for some reason. She is the only one in her school that is having them, and it is curious, scary, frightening for everyone.

Rebecca was thanked the other day by a boy that goes to a different school. He said that someone at his school had a seizure and he was able to help him, just because of what Rebecca had taught him. When she is with new friends we have suggested that they be told how to handle a seizure in the event it occurs. That way they will be less frightened.

Another girl at school, asked her questions on Facebook. The girl was embarrassed and kept saying that if Rebecca didn't want to talk about it, she understood. But Rebecca of course was very gracious and said she would be happy to explain. It seems that the girl's dog had a seizure and she wanted to know what it felt like, and if he was hurting at all. This made Rebecca quite proud to be helpful to someone she didn't know very well.

You are lucky to have a boyfriend that is helping you through this. Rebecca had one, but his parents thought she was Psycho so they forbade him from being near her. They even instructed the campus police officer to give them reports. Lovely people in this world aren't there?

I have to say... I spoil Rebecca with pretty things just so that she feels pretty on the days that are rough. I also believe in a gratitude journal.

Hang in there...

[Tiara]

i am with you. i live in idaho. i have always loved to draw and do different things. and as for the college i am definetly going to look into that. thank you. i now have three classes this semester because i cant handle the stress from school and work soon. its really hard going down to three classes because i have had a lot of people ask whats wrong and why im doing it. it would be nice if anyone at my school would tell me about it. i now have four dogs at my house. i have a black, yellow, and now chocolate labs along with a yorkee. they for me have done so much. they are what calms me down a lot of the time.

[Tiara]

Trust me, Tiara, I understand. I always found that my really close friends handled it better than I thought they would. Most of the time, they were curious, but were afraid to ask me questions. They thought the questions would hurt my feelings, or that I didn't want to talk about it. But, once they knew what to expect, and how to help me, and they saw that the rest of the time I was the same as I was before the seizures, they were cool with it.

i wish all my friends were like that. one of my best friends or so i thought started talking about how i was going to die and how i cant do anything. i have very few friends that seem like they are ok with me being epileptic.

[Tiara]

Robin- i have started telling everyone that is with me what to do if i have one. my boyfriend luckily did some research and nowhe knows a lot more about it. he has been so great about it all. that is horrible that they treated your daughter like that. i would have been so mad. i hope you all got through that okay.

[Bee91]

Hi Tiara! I'm Brandi. I'm 16 and I've been having seizures for about a year and a half now. I understand completely what you're going through, with the doctors, and your friends...everything. I started having seizures one month before I was supposed to get my driver's permit...so I've never been able to drive a car. Today, like every day this week, I have about 6 seizures at school...and they're pretty embarrasing (I don't usually have tonic-clonic seizures...mostly, I have complex partial) Most of my friends are afraid to do anything with me without an adult being within 5 feet away, and most of my doctors were told me that I was faking seizures for attention because for a while they couldn't find anything on the EEGs...
Epilepsy sucks...

[tinasmom]

I am so sorry that you are going through this. You have found new friends here that understand and accept you for who you are. Unfortunately, there is still such a horrible stigma attached to Epilepsy. You don't have to think that because you have Epilepsy your whole life has to change. It is so hard to understand why people are afraid of Epilepsy and seizures. I think it has to do with the fact that when someone is having a seizure, people don't know what to do and feel helpless. The key to ignorance is education. I would suggest that you get in contact with your local Epilepsy foundation as they should be able to help you understand things better. We will be seeing our third doctor for our granddaughter as we were unhappy with the first two. Not all Neurologists focus on Epilepsy or seizures. You can research doctors on the internet and keep trying until you find one that you like. Just remember to live your life to the fullest and always be happy!!

[Meetz1064]

I just wanted to say HI. And to say that yeah, I do remember the days of having ep as a teenager. And they sucked. My mom always hovering, the school nurse always bugging me for one reason or another thanks to Mom, always having to have SOMEONE with me ALL the time........yeah, I remember. But, you learn to adapt. I do have pretty good control over my szs, but I've also lived with this for close to 43 years, too.

Take things one day at a time, Tiara. Live your life to the fullest, and enjoy yourself, no matter what. DON'T let the ep stop you. I didn't. I played in bands, sang in choirs, musicals, plays, went to college, got a degree, started 2 more, got married, had 3 kids, worked various jobs (usually 2 at a time), and currently write mystery novels as well as teach and work in a deli.

Trust me, I've had plenty of my t/c's over the years. But, I'm stubborn enough that I've picked myself up and gone on. I WON'T let ep rule me. So don't let ep rule you, either, OK? You'll learn to balance things eventually. I promise. You may need to change your diet....that's OK. We ep people tend to have probems with our diets.......some of us tend to be gluten and lactose intolerant......who on earth really knows why, but we are.

I wish you luck, happiness, peace and NO SZS!!!

Meetz