How long have you had Epilepsy?

[CQ:)]

I had it since birth, and I was told that they were grand mals until i was 3 or 4 and when i was 7 I was taken off the meds because I outgrew it. but it came back when i was high school but i didn't know til i this yr when i was diagnosed with focal partial and sleep seizures. My mom told me she believes that if the dr didn't take me off I wouldn't have had they seizures in my sleep in high school, which makes me wonder if she knew and didn't help me when I needed her.

Hi Momof5kids,

My story is similar, I had my 1st tonic clonic when I was 9 months & took tonic clonics on a regular basis until I was about 3. I was taken of the meds when I was 7 & the drs told my parents I outgrew the epilepsy.

I went 21 years seizure free & I started taking seizures again in 2002 when I was 24. I was sent t hospital because I wasn't acting normal & had a tonic clonic at the hospital, I spent the night in hospital & saw a neuro he next day.
After going through my history of epilepsy with my Mum & I he put me on Tegretol. After that I mainly had simple/complex partial seizures & tried 5 meds between 2002 - 2009.

In 2009 after my neuro put me on my 5th med Neurontin he said there wasnt much more he could do so suggested I look into surgery. I met a epiologist in 2010, went through pre surgery tests & near the end of 2010 I was told I was a candidate to have surgery. I had my surgery on March 2011 & have been going well since with no seizures but I know there is always a chance the seizures can come back.

I was born in the late 1970s so Im in my mid 30s & from what I understand back when I had epilepsy as a baby epilepsy wasn't as researched as it is now & not a lot of people knew much about it.

 

[momof5kids]

I've been trying to find out why they return but can't find anything. I was thinking bout asking my neurologist when I go see him in a couple of weeks.

 

[CQ:)]

I've been trying to find out why they return but can't find anything. I was thinking bout asking my neurologist when I go see him in a couple of weeks.

Sometimes it can be hard to know why the seizures return.
Just after my seizures returned my neurologist did an MRI which showed scarring on my left temporal lobe. I have had a few MRIs over the years (before my surgery) & they all showed the scarring.

The epiologists & neurosurgeon I met when I was going through my pre surgery tests all said they believe the scarring on my brain was from the bad tonic clonics I had as a baby/toddler but no one knows why I went so long seizure free. Its just one of those things.

 

[cadsgj]

CQ
epiologists, I have seen it used in many comments and have never asked just what it is, so I thought I might as well seeing as I never know what one is when I'm reading a post and it is used. So, CQ what exactly is a epiologists? Me I am in Canada, am from the US, and in near 20 years I do not remember it being stated. I may have been to one, just not knowing so...

Or if anyone else has an answer that would get me out of left field there

 

[CQ:)]

CQ
epiologists, I have seen it used in many comments and have never asked just what it is, so I thought I might as well seeing as I never know what one is when I'm reading a post and it is used. So, CQ what exactly is a epiologists? Me I am in Canada, am from the US, and in near 20 years I do not remember it being stated. I may have been to one, just not knowing so...

Or if anyone else has an answer that would get me out of left field there

Cadsgji,
I can never spell it right fft: but an Epileptologist is similar to a neurologist but they just focus on seizure disorders.

An epileptologist is a neurologist who specializes in the treatment of epilepsy. Epileptologists are experts in epileptic seizures and seizure disorders, anticonvulsants, and special situations involving seizures, such as cases in which all treatment intended to stop seizures has failed and epilepsy (especially poorly controlled epilepsy) in pregnant women.

http://en.wikipedia.org/wiki/Epileptologist

The neurologist I used to see in my home town is a regular neurologist who treats all neurological conditions (eg Parkinsons) & not just epilepsy.
When we tried the 5th med he referred me to an epileptiologist who is 1 of the best adult epileptiologists in Australia & the head of the epilepsy department at the hospital where I had my surgery. I also saw another epileptiologist from the hospital which was when I had my VEEG & I was under his care then.

 

[cadsgj]

Goodness, I want to go see an epileptologist. I have dealt with too much and still have a rough outcome... Wonder what my neurologist would say if I asks to see one. Hmmm... and I will seeing him again soon. Now I'm thinking. Thanks to the info CQ I do appreciate it.

 

[CQ:)]

Thanks to the info CQ I do appreciate it.

No problems

I only saw the epileptologists a few times which was when we discussed surgery, when I was going though the pre surgery tests then when I was recovering in hospital just after I had the surgery.

I still go back to the epilepsy clinic at the hospital where I had my surgery for follow up appts where I see 1 of the neurologists but the neurologist I see is very good, is really nice & always listens to what I have to say.

 

[Dmills241]

Would they be able to tell if mine is genetic since I am the only person we know who has epilepsy that is alive and that we know has seizures? I am assuming they are telling me they are genetic because they haven't found any other cause.

 

[MAB]

Would they be able to tell if mine is genetic since I am the only person we know who has epilepsy that is alive and that we know has seizures? I am assuming they are telling me they are genetic because they haven't found any other cause.

I think there must be a reason they are saying they are genetic. If they couldn't find a reason they would probably say they are idiopathic. Ask them why they think they are genetic.

 

[BlueCat]

12 yrs since diagnosis but they think since birth, just no known symptoms.

 

[joey]

To dmills241. If no one else you can think of had siezures in your family I think your answer is there. Most of the time drs. Don't have a specific reason to give you unless youu had some sort of trauma that would explain it. And that might not even be accurate.

 

[Belinda5000]

I was diagnosed 50 yrs ago not hereditary I have a cousin who got hers from her fathers.
I had a cousin who grew out of it.

 

[momof5kids]

I was born with it. Then when I was bout 4 or 5 they stop and when I was 7 the doctor stops my meds. So when I was 29th they returned which ed sucks. Cuz now I have ups and downs and nobody seems to to understand me when I try tell them I'm feelin.

 

[KatieCoy83]

5 years and 4 months.

 

[qtowngirl]

april was 20 years.

 

[Zolt]

It will be 8 yrs in August. Seizures started after my brain tumor was taken out. The first grand mall i ever had was the day they discovered my tumor. 2 days later the tumor was out, then the seizures started on a regular basis. But I'll except seizure over being asleep 6 feet underground, anyday.

iano: op:

 

[Ruth]

Mine is hereditary. I was 6 years old. It is 65 years this year. I do not remember the month. It was warm weather, I remember that.

 

[Shelley]

Mine is hereditary. I was 6 years old. It is 65 years this year. I do not remember the month. It was warm weather, I remember that.

Me too. In a stuffy church, surrounded by tall adults.

 

[N Sperlo]

I was diagnosed at 16, but probably had it since birth, so we're rolling with that one.

 

[Mflint]

I had my 1st seizures in 2008 at the age of 48.


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