How often and How Long?

[AndrewIrish]

I saw this in another thread and well... here's my question....

I've gone about a year between Grand Mal seizures... I have JME and only have myoclonic jerks and Grand Mals... I've gone a year between Grand Mal seizures twice and am 9 months removed now from my last seizure... I've had periods of time where they 'group' together though and are nearly a monthly thing... I've done all of this off of meds 90% of the time... i've had no meds in 9 months... no seizures...

what's the longest someone has gone without a grand mal and still had one sneak back in? Is there a 'benchmark' where reoccurence is very imporbable? I 've heard stories of twenty years after, they come back... but anyone know any hard data on how long a period of 'remission' I guess... can last? Is there gonna be a point where I've stopped having them and no longer worry about having another?

I mean, I'm growing bold... lol... I'm almost to the point of TRYING to induce one just to see if my threshold can stay in check....

 

[valeriedl]

I've had epilepsy for about 10 years and I usually have at least one grand mal a year and they seem to occur duing the spring/summer. I have around 4 partial seizures a month.

However over the last few months it seems alot of the seizures that I'm having might be grand mals because I'm doing a good bit of shaking during them. I'm still having partials too.

 

[RunningGirl85]

My last grand mal was last April, before I was on any medications ever. That was the one that got me diagnosed. My first one was in February of 2010, and I wasn't on any medications since my EEG results came back normal. They attributed it to some pills I was taking with really high caffeine (I've learned since that anything with really high concentrations of stimulants is a huge trigger for me)0. After that I didn't really have ANY types of seizure activity for awhile for almost a year after that first one, then I started getting more and more partials until I had that one in April. Now I get partials regularly while on medication (though interestingly enough, I've had a lot less since my video EEG last week - even though I had to stop medications and sleep deprive myself). My partials usually cluster into couple of days out of every week to two weeks.

 

[RunningGirl85]

One more thing, I've read something that you're likely to have another seizure within two years of a first one if you're unmedicated... I don't remember where I heard it (maybe here?) but I know for me that's about the time it took.

 

[Nakamova]

Because there are so many different kinds of epilepsy, there is no hard predictive data out there about remission. Seizure prognosis can be affected by primary cause (if known), secondary triggers, treatment history, genetics, environmental factors, metabolic changes related to aging, etc. Plus, once someone becomes seizure-free they may no longer be followed by the medical system, so that information can be lost in the shuffle.

Is there gonna be a point where I've stopped having them and no longer worry about having another?

In some ways, that point is up to you. Some people might worry their entire lives, even after 20 years of being seizure-free. Some might stop worrying after 6 months without a grand mal.