Newbie Here!

[Haley]

Hey guys, I'm Haley.I'm new to CWE, but not to the condition itself.
Anyways, I'd really love to speak with you all and get to know some of your stories. They always inspire me
Side note: Okay, so I've been tonic-clonic seizure free for two years now. What's the likelyhood of them coming back? Just curious...and kind of concerned.
Thanks! :e:

 

[CQ:)]

Hi Haley,
Welcome to CWE, you'll meet some really nice people here & get some great feedback & support.

I consider epilepsy a really unpredictable medical condition because we don't always know how often we will have seizures or what kinds of seizures we will have.

I had my 1st seizure when I was 9 months old & had grandmals (now called Tonic Clonics) until I was approx 3 years old. I went 21 years seizure free until 2002 at the age of 24 I started having seizures again. After my seizures returned I was diagnosed with left front temporal lobe epilepsy which was caused from scarring on my left front temporal lobe (possibly from the seizures I had as a baby.)
After the seizures returned I mainly took auras (simple partials) & complex partial seizures. My neurologist tried me on 5 different anti epilepsy meds, none of which would completely control my seizures so at the end of 2009 he suggested I look into having brain surgery & referred me to an epitiologist.
I met the epitiologist in 2010 then had a series of tests to see if I was able to have surgery. In March last year I had left front temporal lobe surgery (the surgeons removed the scarring on my brain).
I am currently 18 months seizure free & aiming to now go 2 years seizure free

 

[Fedup]

Hello Haley

Like CQ said epilepsy is really unpredictable and you do not know when or where a seizure will happen.

My story is simple, I have had epilepsy since I was a child. I have Grand mal and been on so many medications I do not remember most of them. In a way I am luckier than you and most others here as I do not remember not having it. I still have my regular cheek ups and all that goes with it. The people here at C.W.E are always here for you, they know what you go through and feel. Like CQ for one who put in jokes and there are others others. In short the people of C.W.E are the best, they tell you straight out.

 

[huskymom]

Hi Haley! Welcome to the party! I did not start to have seizures until I was in my 40's (several years ago now, I am sorry to say). Mine are complex partial and most occur during my sleep. I too have been on several different medications and none really do the trick for full control. Now I am at a level that I can deal with. I have a seizure once every few months. You will find a lot of people here to support you and listen whenever you need. Glad to have you!

 

[SAF]

Hi Haley,

That is awesome you have been seizure free for 2 years

I am 40 and have a general seizure dissorder. All my life my I was "passing out" from time to time, but my doctors never did any test.
In May I had a severe gran mal seizure and was hospitalized for 3 days. After 4 EEGs the neurologist diagnosed me w/ a generalized seizure dissorder. This means it is my entire brain. Flashing lights and lack of sleep seem to be the biggest triggers.

 

[Chris515]

Hi Haley, welcome to the site!

My epilepsy was caused from birth trauma, so i've always had to deal with it. I had complex partials often until I was 11, but I didn't know what they were and I guess my parents thought I was being silly when describing them.

When I was 11 I had my first tc, brought on by puberty apparently. That's when I was diagnosed with temporal lobe epilepsy.

Since then I've had sp's and tc's, and lots of auras. I've had periods where I only have tc's for years, and then only sp's for years. It's unpredictable. I had a two year span where I had no activity from 24-26, it was awesome. I made sure I made the most of it in case it came back, which it did. Lots of partying and I did my post grad.

Then the sp's and tc's came back. Now I have auras almost daily, infrequent full on sp's and tc's about once a month.

Glad that you've joined, everyone here is great and willing to help!

 

[Nakamova]

Hi Haley, welcome to CWE!

I first started having tonic-clonics 12 years ago I've been seizure-free (on meds) for 4 years now. Are your seizures controlled by meds, or are you med-free? That can make a difference in what the chances are for having any more seizures. Generally speaking, if you can hit the 5-year mark, the odds are on your side. Making things less clear is that seizure triggers do change over time. As an example: If you were sensitive to shifts in estrogen, then becoming pregnant or hitting menopause might lower your seizure threshold, and you might have seizures as a result.

Best,
Nakamova

 

[nana1]

Hi Haley

I have had mine since borth. Am not under controll medcine wise, do not know when they come on either but after i come to i know i have had one. I am in my late fiftys and still trying to find the exact meds.

 

[LisaBee]

Hi! Welcome! My daughter has Nocturnal Epilepsy. Just diagnosed this month but having seizures and tests since April. Glad you are here

 

[MuayThaiFighter]

Welcome Haley!

I am glad you have been seizure free, that is awesome! I know the fear of relapsing but many positive stories are sometimes forgotten.

My grandfather had convulsions as a child, which was overlooked as "fits" during that time. He doesn't really remember because he was so young. But he outgrew them and never had a single issue his entire life. The brain is a unusual thing.

 

[Haley]

Thanks everyone!

Thank you all so much for the replies! They made my day
I really wish to stay seizure free, but I know it's like most of you said: Epilepsy is super unpredictable.
Just gotta hope for the best and prepare for the worst, right?
I'll be checking out other forum posts to help others out just as you all have done for me.
Thanks again! :e: