Looking For Teen friends

Re: Looking For Teen friends

Submitted by MindelaBB on Wed, 2010-11-03 - 04:27

Hello Guys and Girls, I WAS a teen with Epilepsy, though I am now a young adult with Epilepsy. At age 11 I had my first seizure, though no one knew what it was at the time. I went six months before I had another; they then came fast and furious. By the time that I was 14, I had been through too many tests to count, two medicines and had about 80 grand mal seizures. Epilepsy dominated my entire life. I had to give up sports, which were my passion, isolated myself from my friends and lost my sense of self. Developing epilepsy as an adolescent was devastating and I didn't handle it well at all. So many things in life changed very quickly. I went from being an outgoing, popular and athletic girl to someone I didn't even recognize. I wasn't "normal" like everyone else, when that was my deepest desire; my friends didn't understand the epilepsy and were treating me differently. I was missing school practically every other day. I wasn't doing activities that I liked and I became depressed, anxious and isolated. Every night when I went to sleep I feared the next morning and what it would bring. It turned out that my specific type of epilepsy was originally misdiagnosed. I am one of the lucky ones in that I found Dr. Devinsky. He diagnosed me over the phone with my mother's description of what my seizures look like; I had a different type of epilepsy than was originally diagnosed. Faster than you can imagine, I had changed medicines and doctors. I went eleven years taking Depakote for my seizures; for the last three that I took it, he was trying to convince me to try a different med that might have less side effects. I made it through college without any major incidents. Dr. Devinsky helped me to lead a normal lifestyle. My seizure triggers are/were exhaustion and stress, which come in abundance when in college. My medicine worked hard for me so that I could lead a normal life and do all the fun things that college kids do. It was my chance to start over and have a clean slate. I always told my friends about the epilepsy for my safety, but I learned through therapy, which I highly recommend to everyone, that although I was unlucky in developing epilepsy, I then made bad decisions in my life that made things more difficult for myself. Once I took responsibility for the bad decisions that I had made that exacerbated a bad situation, I was able to see my life much more clearly. A "grown up" friend of my psychologist who has epilepsy, a good job and a lovely family once told me that although at the moment the epilepsy is a huge problem to contend with and seems like a black hole that I will fall into, that in the grand scheme of things, epilepsy does not define her and it has ended up being just a blip on her radar. It really gave me perspective about my disorder. I judge/d myself harder than anyone else ever had or ever would due to the epilepsy. It is just a small part of the whole person that I truly am inside. It is still a learning process for me, I am my own harshest critic and I don't give myself enough credit for who and what I am. Therapy was and is a godsend to me. I have learned a lot about myself through the process. Usually epilepsy is a small part of who I am, other times it stands out like a zit on my nose! That being said, I went to parties in college, stayed out late and lived the dream. I had the college experience that I wanted safely. I recommend talking to your own physician before experimenting with alcohol or drugs; kick your parents out of the office if you have to, but the only way to be safe is to be informed with critical information. Now, all that being said, after 11 years on Depakote, I switched meds and ended up having a breakthrough seizure a year later. I thought my life would be over and that I wouldn't be able to get through it. Thanks to some really great therapy, an amazing doctor and a supportive family, I came through the devastating incident with flying colors. Depending on your point of view, I was lucky/unlucky in that I had my seizure at work. I felt like cycles were repeating themselves; this was not my first public seizure, nor would it be my last. I had learned, though it practically had to be beaten into me because I am pretty stubborn, that since I can't control my epilepsy, I just have to let things happen as they will and not worry about it so much. A much more difficult way to live than one would expect; for years I had felt SO out of control due to my seizures and was a control freak in every other area of my life. You can only imagine how many times my psychologist and I discussed control/lack of control in life. I also have to tell you that at different periods from the time that I was 14 years old on I was seeing a psychologist, but also took anti-depressants. Depression and anxiety are not uncommon in us Epileptics; whoopeee, lucky me, a double whammy. My thoughts and experiences with meds for depression and anxiety rely on the old adage if at first you don't succeed, try try again. Neither the first medicine or the first therapist might be right for you, but be open to trying something different. I hated my first therapist and had a bad reaction to my first depression meds. I then went shopping for a new therapist and interviewed a few before selecting one; after a boatload of talk therapy, depression meds were introduced to give me a boost in my mood. The tale doesn't end here. I had been in MD for college and then work, my breakthrough seizure made my decision to move back to NJ near my family. Over an 18 month period, I changed seizure meds about five times to no avail. I had another seizure at work in NY and went back on Depakote. Six months later I moved back to MD; six months after that, I had to add in a new medicine because I was having symptoms of medicine failure. The new meds made me sick, but eventually after a lot of adjustments, my body has begun to steady out. I have bad side effects from all of the meds including: depression, anxiety, insomnia, chronic fatigue, etc., but I am not having grand mal seizures. That is not to say that I don't continue to have seizure activity, but I can live with it. I don't deny that having epilepsy effects my life in major ways. It can be very frustrating. I have often felt that no one understands. I have bouts with bad depression. The beauty of getting older is realizing that everyone has baggage. It may not be the same as yours or mine, but it can be way worse. I am 29 now. I have had epilepsy for nineteen years. I had an eleven year period in which I was seizure free before a breakthrough. I am now working on my third year of being seizure free. I have an amazing neurologist and a great support system. I am lucky. All my best, Mindy PS. If you made it this far, you are a trooper! If you want to talk, feel free to contact me at mindelabb@gmail.com

Re: Looking For Teen friends

Submitted by yankfan2009 on Thu, 2010-11-11 - 15:05

Well I have a long life story-

I was born Autstic, but with the help of my mom the diagnosis was changed to high functioning Asperger's syndrome.

When I was 12, I had my first seizure. It was a grandmal. I had several of those. I was taken to the ER and put on Tegretol XR. Depakote was added. I later changed to Zonegran.  My seizures are now partial, once every other week, but I have had one every week for the past two weeks. I have missed out on driving and partying.

I have also battled OCD and PTSD. This summer I started to take Prozac 40 MG daily. My Mom passed away when 2 years ago and my grandmother this October.

I see the doctor Wednesday so we will see what happens.

Oh- and my name is Alax too!
Email Me- Alaxmartin@yahoo.com