I have posted before, but don't really come to the site regularly. I have apparently had temporal lobe epilepsy all my life. When I was young, just starring seizures and deja vu. My mom always said it was just me trying to get attention. Everyone else said I was just weird.

They started to get progressively worse five years ago. I have them all the time. Not a day goes by without having several. The fear, confusion, deja vu, starring and panic.

I went to the neurologist five years ago. My MRI was normal, my EEG was normal. Neuro said it was seizures and that we could try Tegratol. I hated the tegratol and took myself off of it and did not return to the neurologist again. I just dealt with the seizures on my own.

The seizures have really been bad, so I went to a new neurologist where I live now. He prescribed Topomax and then Zonogran. Both were horrible so I quit the meds. This was while waiting for test results.

My MRI was normal, my EEG had "sharps" - not sure what that means, but not sure I want to either.

Neurologist says I have epilepsy. Trying to be honest here. I broke down crying in his office. I asked him if he was sure. Maybe I'm a hypochondriac or have mental problems and need a psychiatrist. I asked him to run more tests and refused to take the meds anymore.

Neurologist threatened to have my driver's license suspended and then we had a long talk about the consequences of continuing without meds. And I spoke with my husband.

I called the neuro today and got a new med. I said that I'd give it a try - an honest, whole hearted try. He prescribed Keppra. The neuro says I'm in denial and that I need to contact a support group and come to terms with having epilepsy and what it means.

There are no groups close to me, so you guys are it. Not sure that you can help but I'm honest enough to admit that I don't believe (or okay don't want to believe) that I have epilepsy.

I can live with being weird. Everyone has always said I was, nothing new there. But epilepsy, how often are people misdiagnosed? Maybe the doctor made a mistake? Could this be a mental problem?

One minute I think I'm okay with having Epilepsy, you know, ready to admit it, but then that thought in my head pops up and says "It's just stress, or a plea for attention, or whatever but the meds aren't going to help me - only hurt me. Because I DON'T HAVE EPILEPSY."

ashnan
hey i hope things are going better for you.im not sure how old you are but you did say you were married so im assuming you are over 18.im now 22 i was diagnosed with epilepsy when i was 15 i have grand mal seizures. let me tell you a little story.i remember the day i was diagnosed with epilepsy very clearly that is one thing i will never forget it was january 8,1997 i had been at a friends house and had been up all night she was much older than me she being 30 something and i was 15 she had a little girl and also babysat a little boy i was holding both children when i had my first grandmal seizure from what i was told i almost threw both babies she just happen to come down her stairs and see me going into the seizure and grabbed both kids. my mom was called and i was taken in to the hospital and spent the day there while they ran tests of all sorts and came back with the diagnoses seizure disorder. i thought to myself no way i cant be one of those "freaks"(No offense anyone) so i was put on depakote took it for about a week and then stopped. everything was fine i thought ha a dr misdiagnosed me no big deal really and i went on with my life moved out at 16 because i thought i knew everything and my parents knew nothing i thought i could do anything. i meet a guy moved in with him became pregnant and had a little girl in nov.98 still everything was going fine.my little girl was about months old and i had my 2nd grand mal seizure i ended up in the hospital again but this time things were worse i was diagnosed with epilepsy put on meds again but refused to take them because i refused to believe that i had epilepsy. some time went on and i had another and then another and now im up to 14 grandmals. and ya know what i have been on every med there is and nothing has controlled them so here i am 22 years old a mother of 3 a wife and all the other talents i have come to learn as being a mother and ive learned that ya know big deal i have epilepsy that doesnt mean that im not the same person i was 7 years ago when i was first diagnosed i went through the denial thing too i did that for about 3 years before i finally came to terms with it and decided that for the sake of my families safety i had to do something right now im awaiting the vns. im not sure if this helps you or not but know that you are not alone in this journey there are many of us out here from the very young like little jake to the very old im not sure who that would be but its someone lol and even though we have this we are still mothers and fathers sons and daughters sisters and brothers we are jsut the same as anyone else http://www.healthboards.com/ubb/smile.gif take care jessie

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mother of 3
ages 4,3,and 1
my pride and joy

diagnosed with epilepsy jan. of 97

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

perhaps because u were told by your mother that u were making it up for attention, thats why its stuck in your head. I am going to be honest here, alot of people try the meds and give it up in a week because it makes them feel bad so oviously the meds arent for them. the meds are going to make u feel bad for about 4 weeks i have noticed. u just have to accecpt it. but it will get better, your body will adjust to the meds. this is just your lot in life, something that u are going to have to deal with. it sucks big time, trust me. having epilepsy has changed my life forever, and it always hasnt been positive. but being on the meds has helped me have a better quality of life after i got used to the meds. why- because my seizures(i ahve grand mal) just seem to muddle up my brain, my mind. so I wanted to give u lots of hugs(((((((((((((()))))))))) we can be your support group, I need it too, and u can get thru this.

When my daughter had her first "noticeable" seizure, the word "epilepsy" didn't even enter my mind. But after a while, with her development delays, it sure made sense.

So here we are. It will be 3 years in November. Yes, i have had my cry. (that took a while too) and I do have times when I want to scream..."why my daughter!"

But most of the time, I try to look at this a different way. Epilepsy is something you CAN live with. If you choose. You can either let it get you down, or you can become stronger because of it.
I have chosen to become a stronger person, and that is what I will teach my daughter. She just turned 7.

You see, I can let her disability be a challenge, or I can TEACH her to CHALLENGE the disability. I will teach her to challenge it.

Yes, "e" sucks, and yes you will be reminded of it EVERYDAY....but it could be worse!

The last poster is right. Being my dd was only 4, the medicines scared the crap out of me! But you have to take them for a little while and let your body get used to them. You won't feel awful forever. Give the meds time to level out.

good luck and I am in the same boat as you. My nearest support group is 300 miles away. So this is a GREAT PLACE to get advice, help, and all the support you could ever want!

Lindy

Ashnan,

Taking medication and then NOT taking medication will make your seizures worse. It will also make you feel WORSE when you do start taking your medication. I know because I did the same thing when I first found out I had "E". I didn't deny it but I did think that the meds made me feel 10x worse than the seizures. It does feel that way but if you give the meds 4-6 weeks to get going then you will find that they will "even out" and you will feel much better because the side effects will have worn off. I believe that you just get used to them while they are wearing off.

I hope you find coping with this easier as time goes by. We have all had a time with getting used to this. It is hard but it is not the end of the world I promise. I will keep you in my thoughts and prayers.

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Good morning Ashnan....

I can understand where you are coming from, I had a grand mal seizure when I was 15, and then also had complex partial seizures, but at the time I had NO idea what they were. I tried to explain them to my neurologist, and his response was "Well, it's probably just being a teenager", and so I thought "Well, I guess it's just me". When they got worse (many years later) is when I went to see a neurologist (starting 6 years ago) and I was diagnosed with epilepsy and complex partial seizures (temporal lobe epilepsy). I was thinking "Well why didn't think neurologist figure this out years ago and not make me think it was just me!!!!" (This was in 1987).

It is very hard to accept that you have something "wrong" with you. I remember thinking "Okay, I can accept this, I'll just take medicine and I'll be fine". That was before alot of trial and error with medications.

Trust me, it does get better, and it is wonderful to have this support system. You had mentioned a drug or two that I was on. One thing too is some of the seizure drugs make you feel almost worse than the seizures because you feel bad 24/7. And, different drugs work for different people. Topamax works great for some people, but when I was on it, literally I was a zombie all the time, it was hard for me to take a shower in the mornings because I had zero energy. One thing you might do is look into another medication. I am taking Lamictal currently, and honestly it is wonderful, I can't even tell I'm taking it.

I will keep my fingers crossed for you, but keep writing anytime you feel like it, and hang in there, you have found a great place and can talk to people who understand what you are going through!

Hugs,
Amy http://www.healthboards.com/ubb/smile.gif

Hi Ashnan,

This is long, sorry... But a bit of history of my past couple of years and how E has taken over every little corner! But we deal with it!

In March of 01 my daughters peditrician told me that she thought Jenny was having "staring spells" or absent seizures. Jenny was 12 at the time. I went to the local Epilepsy foundation and received a huge package of information that I read from cover to cover - every word. We did the tests, everything came back normal. We continued to treat for ADD and life was sweet. In May the same year I found out I was expecting another child... SHOCK is the closet word that discribes what I felt - lets just say that not every thing that happens in Vegas stays in Vegas http://www.healthboards.com/ubb/wink.gif

Flash forward to Oct 02:

The baby, Jake is 10 mths old. He's a bit slow on a few of his milestones... But hey, he's got 2 teenage siblings and a full time stay at home Daddy. The child didn't have to do more then blink and frawn and someone was right there. I put his sluggish development down to planty of love and just a bit of spoiling. And again life was sweet!

On Oct 26. I went to pick him up and put him down for a nap (he had fallen asleep on the floor - or so I thought). He was blue, stiff and not breathing. Laid him on the dinning room table to check his air ways and his mouth is full of drool, his eyes where rolled up and his head turned toward the right... He gasps and starts breathing again, when he started breathing he also started to smack his lips.

I knew, deep in my heart that he had been seizing. I had read about it the year before. And I'd had a friend in HS who had E and he smacked after a seizer. I started counting and taking mental notes as we headed for the ER. Jake had 3 more seizures that day - they were all grand mals.

He had one in his room right after they admitted him. He was hooked to an EKG machine and he flat lined. It was like living a slow motion medical drama. A code blue was called to his room, crash carts, paddles... His heart started again before they had to shock him - Thank God...

The past year, meds, meds and more meds. At one point he was on 4 different anticonvalsants at the same time taken in co cktails 5 times a day. We are just now getting some relief with him.

Fast forward again to May 03... Jake was in the hospital again and Jenny was getting herself up and off to school, she had been staying up late with us at the hospital, I knew she was tired and not eating well and she was so worried about Jake. We are bringing the baby home, signing discharge papers and the phone rings. It's the school and the nurse is in a panic. Jenny has had a seizure at school, the EMTs are on the way where do I want them to take her.

I asked if they could check her over and wait until I got there. Jenny was very shacken up of course, but knew that it wasn't life threatening and wouldn't go to the hospital...

We decided to wait until she returned from her Dads for the summer before going to the Dr. and starting meds. Aug. 8 she was diagnosed with Epilepsy as well.

As we walked out of the neuros office she made the statement that she was the same person who walked in an hour before. She didn't feel different, she just had answers. For her the diagnoses answered more then it brought up.

She decided that she would speak to her teachers. Tell them just in case she had one generalize again. She didn't want to go to the hospital or have them think she was on drugs or something. She has not stepped away from her classes and she's loven life. She still wants to study law at FSU, only now she wants to be an advacate for children and people with disabilities.

I am a mother of 2 Epileptic children. One of which we aren't sure how badly damaged he may be from all the seizures and meds. He is Globally Delayed and no one will really give a long term out look for his future. Jenny, is doing well on her meds. It took about a month for her to adjust - but she said last week that she feels so much better. She's not "going away" like she had been. She does say she's got some problems with word recall but she can deal with that better then checking out all the time.

I guess what I'm trying to get at by sharing my story is that I did not decide to make this Journey. I was drug down this path kicking and screaming just like everyone else on this board. It's hard! I hate the thoughts of my children having to live with E for the rest of their lives. In our case it looks like it's genetic and I hate to think that my kids and grandchildren may have to make this Journey as well...

BUT, we do it, every day... We are a stronger family for having made it this far. We have each other, it's opened up communication levels that we would never have reached without it. It's brought my husband and me closer.

I don't know what tomorrow will bring! Does anyone? We have a crazy life I know. What would I do with one day that did not involve questions of meds, sz activity or therapy for Jake. My brain wont even go there.

This board is my support as well. I have no place else that I go to vent or get answeres. Everyone has been so great at giving my Lil' Guy a voice. Make yourself at home. Spill when you have to, ask questions, or reach out to others. We are all in it together and no one here is crazy or looking for attention or going to judge you.

So welcome! Keep us posted on how you are doing. Life is Sweet even with E as a focus, it sure beats the alternitive http://www.healthboards.com/ubb/wink.gif

Take care, be well!

Love and light

Lisa and Kids

Not quite sure about what to say to this post because since I was diagnosed five years ago I decided that my JME wouldn't run my life. I've done EVERYTHING I wanted to, exactly how I would have done it. Yes there are sidesteps, like when I have myoclonic jerks in the AM and have to miss classes, appointments or whatnot. The sideaffects of medication. Because ones epilepsy is only what you LET it make of you. I'm sorry it made your life.

You have to understand you aren't alone first of all. And plenty of epileptics live totally NORMAL lives(view quote in my signature). There are times you'll get really PO'd at yourself. I know I got really mad monday. But you let it go or else it'll run your life.

I'm 20, I'm a junior in college. I moved 1000 miles away from home all by myself to go to school. I'm going onto grad school, I'm going to get a Ph D in psychology. You will be okay too!

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Mandi
"there's no such thing as normal, just a lot of weird people with things in common."

ashnan
I know exactly how you feel! I've had E since I was 4, but was only recently diagnosed. When I was little, people said I was trying to get attention or trying to get out of doing something, when i got older people said it was stress, anxiety attacks,,, so since I was diagnosed a few months ago, I keep saying, no, really, I think I'm just a hypochondriac or something, I think I just have mental problems. I went to therapy for about 5 years and the therapist kept telling me to go back to the dr.s because she couldn't find an emotional link to my "episodes". I think I would rather have it be emotional. That way I guess I could have some control over it and there would be some hope that it would go away some day. (I always thought maybe someday it would just go away and never come back) Unfortunately, the truth I don't want to accept is that it's epilipsy and I'm stuck with it.... the only thing I can do is take my meds..... It is kind of cool though to read other people's symptoms and say.... Oh My God - That happens to me!! So that's what that was!!!
I just wanted to let you know you're not alone - there are others out here that understand and know how you feel. Others that would rather be crazy than have E. Take care and know that you will get through.