new and optimistic.

[slayersophie]

*phew* Am I glad I found you! I feel like I am boring those around me with my constant talking about how I feel about this new diagnosis of epilepsy! I am sure this isnt the case,I am surrounded by constant support and love but none the less its how I feel. I feel alone although I am surrounded. simply because I feel that no one can truely understand no matter how much they try to. How wonderful to have a community of people who will understand. I am 29 years old and had my first grand mal on Dec.22. I went to the e.r. but i already knew what happened to me as soon as I came to and realized that my tongue was bitten. I work with adults with disabilities. (autism, Downs syndrome, etc.) and seizures are often seen. I knew what happened but I couldnt grasp the idea that it happened to me. The confirmation that it was a tonic clonic, shocked me of course, but it didnt upset me in the way it did those who love me. I believe this is because I have been educated,trained, and exposed to seizures whereas this is their first experience.I completely understand their view. I remember the first seizure I ever saw and it impacted me greatly.
I went to the neurologist and discussed the seizure. There werent any witnesses. My Dad found me on the floor unconcious. The seizure was over and I was just laying on the floor passed out, probably sleeping. However, that post ictal phase is awful! I explained to my doctor my "aura" and how I felt after my seizure. Then i told her about other strange things I was experiencing for a few months before the tonic clonic. Turns out those were partial seizures. I was shocked and couldnt believe what I heard. She ordered an EEG and gave me a prescription for Keppra and told me to start them the next day. On the way home I had another aura but couldnt tell my boyfriend what was about to happen and I had another grand mal. Needless to say, it scared him pretty badly. However, he remembered the things I told him to do and he acted perfectly. It lasted 4 minutes and he did call an ambulance. Long story short, here I am. I had my MRI today and my neurologist called me a few hours later and said my brain looks "phenominal". Looks like we are going to have to look into this a little further to try and see why this is happening. I know most people with epilepsy never find out why and I am okay with that. Personally, I would rather have the cause be unknown than have a tumor or an infection. ;P
I do have a lot of questions and thats just a part of it. I have been writing my symptoms down and keeping track of everything as best as I can. I hope this will help answer some of my questions that I have for my Doctor when I go back for my next appointment. I am very grateful for this forum. I look forward to learning from and helping along side people who understand.
Amy

[epileric]

You are so lucky to be working in the medical field like you do.

There is someone else here whose job is very similar to what you described.

Please make yourself at home, look around and accept a complimentary cup of coffee (or tea)

[slayersophie]

Why thank you! *sips coffee* I am very lucky to have a job that understands epilepsy and to work with people who accept it and know how to react when it goes down. I am very blessed and always will be....epilepsy and all.

[CathyAnn31]

Just wanted to say hello and welcome to the group.

[Eli]

Hi and welcome aboard!

[Screamy]

Saying Hi and glad you found CWE!

[Cint]

Welcome to the world of epilepsy, Amy,

So many of us cannot believe it is happening to us when the seizures began, but unfortunately that is reality. Glad you found CWE.

[tkopi]

Welcome to CWE Amy
This site has been a god send for me and I know alot of other people on here. It's nice to chat and exchange info. with people that are in the same boat as you.

Again welcome and may you have the best of luck.
TKOPI

[momof3boys]

Welcome to CWE Amy! There are alot of wonderful people here to help everyone!

[Electra]

Welcome SlayerSophie,
Your post sounds similar to mine and I work in the health care field. I found that until you experience a seizure it is hard to describe the sensations, memory loss, soreness etc that people who have seizures experience. I still find it amazing how the brain/body functions and why it just unplugs sometimes. This site gives you back your dignity... knowing that you are not alone, even if you have all the support in the world from family and friends. It's great to read posts from others that are experiencing the same issues. I had so many questions...at first when I started having biggies and there were so many topics that I wondered about; answers that I couldn't find online or just didn't want to ask my doctor. Many times when I was having seizures, I was just told I had anxiety, as no tests were done. And this anxiety was only a few minutes at a time...lol. The sensations and feelings the seizures caused were getting me down because I thought I had a brain tumor or something. It wasn't until I spoke to the neurologist that I felt better because he understands how the brain works. I had a biggie back in August in my sleep and I knew after that something just wasn't right and it was confirmed. I had memory loss for two weeks later, felt sick, laughed my head off when I starting taking the meds lol and felt like throwing up at the same time. It was an adjustment and I lost my license. Hopefully, if I stay controlled I will get them back soon but on the other hand I am not sure if it's a good idea or not to drive again...I feel good now but still feel symptoms that don't lead to a biggie which is great. But I never know if it can...After being diagnosed and a doctor recording it happen along with my husband seeing it, I was sort of received that I wasn't losing my mind after all. I realized I have had some of these auras and symptoms for a long time but now they are stronger and worse but the meds are helping to control the seizures which is great. However my memory is not the greatest and I get tired easily but I still work and manage to perform well. At first, I became addicted to researching everything I could about seizures and learning what others experience. And once I accepted that I can have one any day, I just try to pay attention more and understand what is happening to me before, during, and after the seizure. I just stay calm as I can and deal with it. Although I have had most biggies in my sleep and partials during the day. But I have to say, I love coming to this site reading and responding to posts. So anytime you need to talk just message me here. And that goes out to everyone!

[valeriedl]

I know this site is great, I'm glad I found it too.

It's nice to be around a large group of people who understand what your going through with out trying your best to describe it and still have them not understand. On here you usually just have to say a few words and they know exactally what your talking about.

If I'm having problems with things my husband will tell me "Get on that web site and see what they have to say about it". I guess you could say he even he gets alot of help on here too.