no epilepsy

[seetseet]

Hello fellow CWE members, followers &contributers!

I was wondering (just as general curiousity) enquiry that:
In YOUR part of the world/country what are the standards that you have to get to no longer be classed "epileptic"?
Eg where I am on the Gold Coast in Australia it is 3yrs (with meds) + 2 yrs without!

Just a general enq! Thx for all the responses

 

[Cint]

I was wondering (just as general curiousity) enquiry that:
In YOUR part of the world/country what are the standards that you have to get to no longer be classed "epileptic"?
Eg where I am on the Gold Coast in Australia it is 3yrs (with meds) + 2 yrs without!

First of all, I don't think a person with E should ever be classified as an "epileptic". And 2nd, I didn't think that once one had seizures/epilepsy, they could be cured, if that is what you're asking. Maybe they can go seizure-free for a year or two, but there is always gonna be a chance for the seizures to return. Some folks go for years without seizures, then BANG!, they're back!!

http://www.epilepsy.com/learn/epilepsy-101/facts-about-seizures-and-epilepsy

Even with today's medication, epilepsy CANNOT be cured. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure.

 

[masterjen]

Just because someone has been fortunate enough to have their seizures fully controlled for 3 years while on medication (or for 2 years without medication) does not mean the epilepsy has gone away, because as cint says the seizures can always come back. Being seizure-free for a number of months or even more than a year has unfortunately been the case members here. Two (of many) examples of why this would happen are those who have in-operable structural or progressive neurological conditions causing their epilepsy: they may reach a point where a medication or other medical procedure is presently controlling their seizures, but they will still be considered to have epilepsy.

 

[CQ:)]

Seetseet I am also Australian but live near the Vic/NSW border.

In my opinion you will always have epilepsy (or be epileptic) but some people are lucky enough to find the right treatment for them to be seizure free or control seizures better. At the moment there is no cure for epilepsy & it was on this site that I learnt that you can go in remission with epilepsy.

I was 1st diagnosed with epilepsy as a baby & took tonic clonic seizures from 9 months - 3 years. My parents were told I had out grown the epilepsy & was taken of meds when i was 7, being the late 1970s & early 1980s there wasn't as much research about epilepsy as there is now.

I spent my childhood/ teens being seizure free & went 21 years seizure free (17 of those med free) but in 2002 when I was 24 I started taking seizures again. I mainly took auras simple/complex partials with the odd tonic clonic. Meds weren't completely controlling the partial seizures so in late 2009 my old neurologist suggested I look into brain surgery & referred me to a specialist in Melbourne.

I had my surgery March 2011 & went 2 years seizure free, even able to come of one of the 2 meds I was. I started having funny feelings again in 2013 which were eventually confirmed to be focal seizures (simple partials).
I am now back on the same meds I was on pre surgery & still having the odd seizure (funny feeling).


One thing the epiologist/surgeons told me when I was having my surgery was that the surgery was no way a cure for my epilepsy but a treatment & I would always be on meds but the quantity depended on how well controlled I was.

 

[AlohaBird]

In YOUR part of the world/country what are the standards that you have to get to no longer be classed "epileptic"?
Eg where I am on the Gold Coast in Australia it is 3yrs (with meds) + 2 yrs without!

Hmmm. Interesting question. I have never heard any "official" definition of seizure free beyond what is required by the DMV for getting your license back which can range from 6 month to 2 years.

I do firmly believe that epilepsy is curable. Not in every case obviously but many more than most neurology textbooks would have you believe.

The definition that would matter most to me would be when I can get off all my meds, remain seizure free and go more than a week without thinking about it.

So far one med down, one to go.

 

[Cint]

I do firmly believe that epilepsy is curable. Not in every case obviously but many more than most neurology textbooks would have you believe.

onder: I'm sure that when you find the cure, you will make sure the world knows about it. And if it is curable, why wouldn't the neurology world let us know what really works? By trial and error? What trials have you been put thru?

The definition that would matter most to me would be when I can get off all my meds, remain seizure free and go more than a week without thinking about it

We ALL want that!

 

[AlohaBird]

onder: I'm sure that when you find the cure, you will make sure the world knows about it. And if it is curable, why wouldn't the neurology world let us know what really works? By trial and error? What trials have you been put thru?

I'm not one of those , "The government is conspiring to KEEP the cure from us because they are evil and want us to be sick" type of wing nuts.

I think there is a much more prosaic explanation for why potential treatments are ignored and ancient medicinal wisdom is discounted by mainstream medicine.

It's called following the money. Who is going to pay for a gold standard trial of something like turmeric when you can buy it at any Indian bodega?

 

[Hunter Dave]

Well I think that is easy , if you no longer have seizures and take no anti seizure meds than you are cleared by your Neurologist you should be fine .

 

[seetseet]

Thanks for all your replies and answers I really appreciate it

And I am sorry for using the word"epileptic" I didn't realise it was a rude/degrading word term Cint (amd anyone else who was offended by it!)

I was going off what my neurologist had said to me, (hehe well I never thought of it till your replies, but it might be just some be some bs info he is giving me) but it has certainly helped to "keep seeing the light at the end of the tunnel".
Hehe all will be good, or great

thanks again for all the feedback and again I apologize if I caused any offense!

 

[seagull]

Please don't call yourself epileptic people see that and not the person..
Mybe different countries have different rules you need enquire with licence office and back it up with doc letters eeg I would thought Australia similar rules to uk e.u.

 

[seetseet]

I don't really tell anyone I don't have to that "I have epilepsy"
As far as I know, you can't drive for six months after you have a TC seizure (here in the states of New South Wales and Queensland, Australia)
But I have never really understood how the law can police that, because it's not like you're legally obliged to tell your doctor that you've had a tc seizure.
In fact I actually know someone personally know a lady (and yes I promise it wasn't me!) who totalled her car on a tree because she had a tonic clonic seizure, and she still managed to purchase a new one and keep driving guilt free. Now there's a scary thought.. I remember asking her if she was scared of totalling her car next time and killing a family etc, but it sort of got into the "discriminating-against-people-with - epilepsy" conversation. Sort of missed the point. Kinda scary for me

 

[CQ:)]

I don't really tell anyone I don't have to that "I have epilepsy"
As far as I know, you can't drive for six months after you have a TC seizure (here in the states of New South Wales and Queensland, Australia)
But I have never really understood how the law can police that, because it's not like you're legally obliged to tell your doctor that you've had a tc seizure.
In fact I actually know someone personally know a lady (and yes I promise it wasn't me!) who totalled her car on a tree because she had a tonic clonic seizure, and she still managed to purchase a new one and keep driving guilt free. Now there's a scary thought.. I remember asking her if she was scared of totalling her car next time and killing a family etc, but it sort of got into the "discriminating-against-people-with - epilepsy" conversation. Sort of missed the point. Kinda scary for me

Seetseet

I live in N.S.W & I am pretty sure it is more then 6 months to get your licence back after a tonic clonic, it may be more like 12 months.

I've never had a licence or had any interest in driving. But when my seizures weren't controlled my old neuro told me he wanted me to wait approx 2 years with no seizures at all (even auras) before I thought about getting a licence.

I had brain surgery in 2011 & had to wait until I went 12 months seizure free before I could discuss with my neuro about getting a licence & lowering my meds. When I did go 12 months my neuro asked if I wanted to get my licence, I said no thanks.

From my understanding if you have seizure while driving eg tonic clonic YOU ARE supposed to be signed off by your neuro to say you are fit to drive.

I started having focal seizures again in 2013, they are only small seizures compared to what I had pre surgery as I am still alert but no way would I drive while I am having them because I never know when the aura will come & after I have the aura I can sometimes feel like crap for hours & trouble concentrating. Because I am back to having focal seizures Ive been told no driving which Im fine with.

 

[Nakamova]

Here's the most recent official verbiage from the scientific community:

"Epilepsy is considered to be resolved for individuals who either had an age-dependent epilepsy syndrome but are now past the applicable age or who have remained seizure-free for the last 10 years and off antiseizure medicines for at least the last 5 years. "Resolved" is not necessarily identical to the conventional view of "remission or "cure."

So I think that right now for someone with epilepsy, remission is possible, but an actual cure may be a bit farther off. Hopefully available treatments will improve in terms of efficacy and side effects. There's a lot of very interesting research being done on all sorts of angles of attack. Folks might be interested in checking out this site: http://www.cureepilepsy.org/home.asp