making an attempt

[workingwithfate]

Hi everyone,

I joined a few weeks ago but this is the first time I have posted anything. I've been a little nervous still trying to admit I have epilepsy so posting has been difficult... I will say it has been a help reading that I am not the only person in the world.
I was always the class clown, the one on the dance floor, the one my friends came to when they had a problem, the traveller, going places and always running into someone. I never was sick. Rarely a cold. I worked with kids and the germs never seemed affect me.
2 1/2 years ago I was diagnosed with Epilepsy but I am still working on accepting it. It completely changed me. I was 21.
Feb--I found a new job.
March--My mom had found a new job so she was home on the weekends. I was in charge then of helping my 16 year old sister keep it straight. My dad was a support in all this too but he worked during the week as well and we all know 16 year olds don't listen to dad.
May- I graduated college!
July-I was already up for a promotion at work.
August 29th- I met an awesome guy one night out with the girls.
August 31th- My mom was home for the weekend. It was my first day in charge just to see if I could do it before my promotion. Came home to see my mom for the first time. She was cooking one of my favorite meals (I stole a few pieces of chicken). Woke up to paramedics, my mom's finger bleeding (i bit her when she tried to get the chicken out of my mouth), blood all over me, and a horrible headache.
I had fallen against the dishwasher. My shoulder hit first, so I was pretty bruised for a couple days. We went to the hospital. They said they weren't sure and gave me some asprine and sent me home. No tests. I had another grand mal about 4 hours later. They did a few tests and put me on dilatin.
It all just went downhill from there. I lost my license for 6 months. I lost my promotion. I lost my independence. What did I do? I was always nice to people. Always helpful. Where did I go wrong? Where did my friends go? I lost so many friends. People I thought would help me...
I was also terrified. My aunt died of Epilepsy. She was in a car accident and she had seizures after that. She was at home cleaning one day, had a seizure, and hit her head. What if that happens to me? Am I going to me ok?

I went to the first doctor but only went one time. He barely spoke English. The second doctor was at a university. Great neurology clinic but I was young and healthy. He wanted some testing done and had his own motives. He wouldn't talk to my mom. She would ask a question and he ignored her. He kept just asking me how I was feeling and if I was willing for this test and that test. I didn't say much. I was put on Keppra for that year (the dilatin made me suicidal). I apparently was not very nice that year. They tried some other meds, but all of them had some kind of side effect. Rashes, throwing up, rashes and throwing up, sleep deprivation which they didn't believe was from the med so I had to go take multiple sleep tests, weakness, moody (and OH was I moody). My doctor however just kept telling me my moodiness was PMS and I need to get over that. It was not the med. He basically made me feel crazy. I had epilepsy and was nuts.
Because I tried multiple meds they didn't want me to drive. This was the hardest thing for me. I LOVE MY CAR! Nov. of that year I had another grand mal. Jan- I had 6 grand mals in 2 weeks. Even one at work.
I now am going to the Mayo clinic. It is such an incredible hospital. My doctor is amazing. The first time I met him he asked what meds I was on. I said Keppra and was feeling some side affects. "Let me guess. Cranky, moody, not very nice to your mom." We all just started laughing. I WASN'T NUTS! So far this doctor has been great. He listens! I am now taking Trileptal (generic). 900mg morning. 600 afternoon. 900mg night. The only side effects I have are random panic or anxiety attacks. Once in a while I will scream and yell and cry. I do take a pill rarely when this happens but it turns out it is a side affect. Not me.
This hospital was the first hospital that even got a test back with results. Every other EEG or MRI I had done came back completely normal. They finally did a sleep deprived EEG and I got results in my left frontal lobe.
I haven't gotten my license back because I keep having "spells" A couple times a week. They last about a minute. It was keeping my grand mals under control though. Last week, I had 2 grand mals. I thought I was making progress. I thought I was finally going to get my car back...
Now I have to go to the doctor again next week. Hopefully we can get it straight this time.
I'm not all being negative. I'm now 24. my mom, dad, sister, and a couple true friends that have stuck by me have been incredible. That guy from the bar. We've been together 2 1/2 years. He has been with me the entire time. We are living together and even talking of marriage. He always uses the word "we". He has kept me from deep depression. Reminding me its not my fault. We will figure it out. It will happen one day. He was the one who encouraged me to find this site to help me finally accept it.
I have seizures.
Its not my fault.
I have Epilepsy.

Wow, I'm sorry that was so long. I will tell you it feels good to get some of that out. Thanks for listening.

 

[Nakamova]

Hey wwf, welcome to CWE!

Unfortunately a lot of the lumps and bumps you've had to deal with -- radical life adjustment, unhelpful doctors, side effects, dismissal of side effects, med allergies, medication merry-go-round -- seem to be the norm for people with seizure disorders. It's terrific to hear that you've got a great support system of family and friends, and a doctor that knows what he's doing.

Best,
Nakamova

 

[stephk]

First... that wasn't too long. second.. WELCOME!!!!
I look forward to getting to know you a little better. It is wonderful that you have a guy that is willing to stick by your side. I have a firm belief that when illnesses, accidents happen... we as people find out who our true friends are.

Some of us definetly have a problem accepting our *ahem* condition. Sounds like you are getting there. :clap:

 

[ColmanMac]

Hiya workingwithfate & good to meet you - I agree with all that the others say - you truly do find who your friends are in situs like ours - and you've got all the friends you'll ever need right here - Trust me, I'm Irish!!!
Col

 

[epileric]

Welcome.....

I know that feeling of neurologists making you feel like you're crazy. The only thing about is that I've always had seizures & supportive parents so if a neuro started pulling that stunt I'd be more likely to leave (or talk back when I was younger) than question myself.

The people here really are great, make yourself at home.

 

[Endless]

Workingwithfate,

Welcome to the forum. I'm so glad you found us!

I'm VERY glad you found a good doctor. That is so important.

You've been through so much. Those bad docs drive me nuts. The first neuro I saw said that my problem was menopause. Right. (note sarcastic tone) I see two neuros now, one epi (seizure specialist) and one headache specialist, and they are both great. They didn't dismiss my symptoms, make me feel like I'm crazy, or give up until they get to the bottom of it and get me feeling better. I feel pretty lucky.

Yes, you have epilepsy. No, it's not your fault. One out of 24 people has epilepsy, so you have some good company.

Know you have a whole lot of friends here.

 

[valeriedl]

My situation is similar to yours Workingwithfate.

A little over 7 years ago I had my first seizure out of no where. I was admitted to the hospital where they had to put me into a coma inorder to stop the seizures. A little over a month later I was released. They did all sorts of tests but still have no idea why I started having seizures and got epilepsy.

I had a great job, a car and had moved out and was living on my own. I was finally out there living my own life and was dating a great guy. I could't wait to get mairred and have kids.

Because of the seizures I had to move home, quit my job and sell the car because I wasn't able to drive. The relationship sort of dwindled off because he lived a good hour away and it we didn't get to see each other that often. Most of my friends live about an hour away too so it's really hard to get together. They try to drive down here to see me at least once a month. Since most of them have kids and are mairred it's hard to do. The children thing really didn't bother me too much because I wasn't sure if I actually wanted to have them.

I had several different dr's. Most of them very good. The only one that I hated was a dr assistant (I'm not sure what her actual "term" is though, but that's basically what she is). I would see her every other visit. She accused me of not taking my meds and that's why I was having as many seizures and as frequent. I have an alarm in my cell phone that goes off when it is med time and I always have my cell on me. Everyone knows about it so they know that I'm always my meds and on time.

I finally got fed up with her. I was having problems one time and called to see if I could get an earlier appt with my neuro. His secretary said that I would beable to get in with her in a few days or I'd have to wait a few days longer to see the neuro. I told my neuro's secretary that "I DID NOT WANT TO SEE HIS ASSISTANT EVER AGAIN" and that "I'D RATHER SEE HER (his secretry) INSTEAD!" She knows now that I won't see his asst and always trys to get me in with the neuro as soon as she can if I need to see him before my appt.

I would go with a family member to all my appts. I have really bad memory problems so if my neuro has a question that I'm not really able to answer there is someone there to help. I also keep a seizure diary that I take a copy of with me to the visits and that helps alot with his questions. I also write any questions that I need to ask him on it so that nothing is forgotten.

I have very bad long term and short term memory loss too.

I also have problems with being moody. There have been times that I'm ready to punch someone in the face. I've told many people off. We've even had to leave parties because of my temper. There have been many posts on here lately about Keprage and I'm almost positive that I have it. I see my neuro in a few weeks and I'm going to talk to him about it. We have to go out when the grocery store doesn't have many people in it go out to eat at odd times when we know that it won't be busy too. Luckily I don't have suidal thoughts on any of the meds that I've been on.

I've just learned to deal with it. I too was always the life of the party. So as long as I'm not ready to punch someone in the face I have a good time.

I went out with my friend this weekend. At the resturant we went to I'm suprised that we didn't get thrown out of because we laughed and joked about everything the entire time. I'm not sure if we even ate our food! My friends know about the memory loss and when they tell me things that we did together that I don't remember we joke all about it. My friend wants to go see a concert and dress goofy for it and asked me if I'd go with her because I'm the only one she knows that would do it. I said "Heck yea, I think we'd have more fun with everyone pointing and laughing at us!"

Luckily I met a great man, by prying into a conversation (which I'm good at too) and just started talking to him out of no where. I never thought I'd find someone that could deal with the seizures and the other things that go along with it, but he does. We've been together about six years now (give or take, I can't remember!)

As you said it's not you, it's the epilepsy.

Sorry this is long too. If you ever need someone to talk to this is a very good place to do it. I know what you went through.

 

[workingwithfate]

Thanks everyone for the help. Its been a long road and I appreciate all your replies. With all your support I'm hoping to get myself back in order and helping others too. Thanks!

 

[workingwithfate]

Valeriedl-- I've been having some issues with memory too. I've been writing a keeping notes more and more. I figured it did have something to do with my new med. Maybe I should look more into that.
Its great to hear that something told you go for it. that little extra confidence always turns out positive! Congrats! Its good to hear its working out again.