Getting to be seizure free

[dfwtexas]

I was wondering how long it takes to get to the point that you can say you are seizure free.
I got diagnosed 2 years ago and the longest I have been seizure free is 6 months. I have been on Keppra since my diagnosis and have had my level increased on several occasions. Currently, my last seizure was on Oct 7th. I am getting nervous now that I am at the period of time that a seizure can hit me out of the blue. (It seems once I go 4-6 months, I will get one out of the blue.)
I know I met a lady at a epilepsy focus group and she said it was 2 years before her meds got to the point that she could say her E was under control. My neurologist says it varies greatly from person to person.

[flinnigan]

I kinda look at it like being in recovery. You know "Hi, I'm Paula and I'm an Epileptic I have't had a seizure in 9 months", Then and I get my 9 month seizure free coin. While I'm seizure free I'll always be at risk.

[Bernard]

Seizure free is always a relative thing once you have a history of them IMO. You can start having them again after years or decades of full control (with or without meds).

[PhylisFeinerJohnson]

I went without seizures for 22 years after having had them for 20 years. I was told I had "ougrown them." And perhaps that was true. But a year and a half ago, I had a doozy which was caused by a drug intereaction. However, that was an islated event, although I'm back on meds and still suffer from some of the "after shocks." (Memory, agility, etc.)

[dfwtexas]

Thanks ya'll for your replies. I down deep know I can never been seizure free, I have just been feeling down this week. It is 2 years since I got diagnosed and had hoped when I got to this point, I would have a hold on this whole E thing. I am frustrated that my keppra has been adjusted several times. On top of that all, my record of seizures have been that I can go without seizures for 4-6 months with no seizures and wham...I get one out of the blue, none of my typical triggers are tied to them. Today is 4 months since my last seizure so I am feeling on edge...is there a seizure around the corner?
Something happened this week. I have really been relying on my faith and praying to God about this anixety and to show me a sign. I located an old friend on facebook that I had lost contact this week. I havent' talked with her in about 10 years. I had told her about my arm trauma and then diagnosis of E. She told me that she had contracted mennigitis and it went thru her blood and she had to have both legs amputated above the knees and lost 6 fingers. She has new legs and is so excited about walking down the aisle when her son gets married. She is driving, swimming and so upbeat.
It reminded of the saying that I was sad because I had no shoes until I met a man that had no legs.

[RobinN]

Wow - great story!

I do view it a bit differently. I believe "growing out of it" is an old idea. I like to see it as a threshold, body burden, or cup-runneth-over view. You might be able to tame the beast for years if you are successful in creating an environment that body can cope. However, where you run the risk is when you don't take care of yourself and it slowly builds drip by drip until, BAM! Sometimes it is a slippery slope to find your footing again.

Healing the body does not happen overnight. It takes focus, loving yourself, and treating your body as the temple that it was intended to be. That way we are stronger when we are hit by challenges that are out of our control. I admire your friend.

[Zoofemme]

I don't know if I look at it differently than other folks or not; I've never been around many people with E and I've not participated in E forums very much (the last one was just too nasty). When my seizures first started I would have them several times a week if not a couple a day. I have gone status twice. It was terrifying and emotion-charged and it changed me. It took 2 years to get control to the point where I would average about 1 a month... my husband and I accepted that and were quite happy to live with that forever if need be. I'm thankful when I can go longer and considered it a miracle when I was able to go 18 mos. As long as it doesn't get as bad as it was in the beginning then I know I can live with it Of course, I'll get angry and rant and rave about it but I always do that, lol.

[Cint]

I agree with what Bernard stated, "seizure free" is a relative thing, at least it is for most of us who post regularly here. It took me years, meds, surgery, VNS also to have my seizures somewhat controlled and now the doctors tell me I am a refractory patient, meaning I will always be at risk of having seizures. Nothing works for me. I still have nocturnal seizures, I had 2 simple partial seizures the night before last, but for me, that is life. That was a seizure in over a year, so of course I am frustrated, but I know it could be much worse-- the seizures were not tonic clonic seizures, I was not injured this time, no hospital visit....
Life is what I make of it now.

[Inaara]

hehe, most I have gone without a seizure at this point is three days. I'd probably be ecstatic if I went 6 months!

[alivenwell]

There are days when I feel like I can't slip up or I'll pay the price. I can't tell you how many times I've double or triple checked whether or not I took meds. This hasn't always worked in the past. Being seizure free for at least 7 years is surreal. I think lack of illness such as a flu has drastically helped me.
Lamictal has caused a great seizure control I never experienced in the past.

[carlos.fonke]

My neurologist says you don't become seizure free, ever. Three years used to be the threshold but you can see that's not valid, as others here have said.

[RobinN]

Seizures are a symptom... so if the cause is not addressed then you can't say for sure you will ever be seizure free.

[Cint]

hehe, most I have gone without a seizure at this point is three days. I'd probably be ecstatic if I went 6 months!

Before I had brain surgery, the longest I went without a seizure was several weeks, then I would have 4-5 complex partial's a day for 5-6 days in a row. After my lobectomy, in addition to complex partial's, I started having tonic clonic's every 2 weeks. And then we tried every med available at the time. Nothing helped. The VNS was a last resort, so for me, going a year without a seizure is a BIG DEAL! It has taken me years to get to this point. And I know it can be taken away again.

Seizures are a symptom... so if the cause is not addressed then you can't say for sure you will ever be seizure free.
Yesterday 08:32 PM

Seizures certainly are a symptom of epilepsy..... It's probably not that the cause isn't addressed, for some, it isn't known, or they're difficult to treat.

[knothing]

My first Neurologist was average but he did have one statement that will stay with me forever and it relates to this thread. He said, " I am not worried about your last seizure. I am worried about your next one." This may appear bad at first but his intent was to worry about something that would not occur.I kept focusing on the seizure and not what I needed to do. Like making changes in my life (if possible) to prevent this from occuring.

[dfwtexas]

My father had two seizures in his late forties...one was grande mal that was so violent he broke seven vertabras and one tonic clonic. They thought it was related to change in his meds and he was on seizure meds for 2 years and then they weaned him off. He will be 77 this years and has never had another one.
My neurologist said my seizures are in left partiel lobe and that I will never be able to go off seizure meds. He said partiel lobe seizures tend to have seizures develope in other parts of brain and he worries if I had two seizures in 2 different parts of my brain at same time, it would kill me. At first I thought he was scaring me into not forgetting meds...but I have found a little about partiel lobe that justified what he told me. Apparently this is rare part of brain to have seizures.

[Inaara]

My first Neurologist was average but he did have one statement that will stay with me forever and it relates to this thread. He said, " I am not worried about your last seizure. I am worried about your next one." This may appear bad at first but his intent was to worry about something that would not occur.I kept focusing on the seizure and not what I needed to do. Like making changes in my life (if possible) to prevent this from occuring.

Good point. I know that the changes I've made in diet and lighting and all have been the only reason I've gotten to where I can now go as long as three days without a seizure (I was having several a day before). So I figure if I keep doing what I've been doing and keep learning more of what I need to do, I can eventually extend that. As a side note, I had a bad weekend, but that was my own fault for eating pizza on Friday night - I knew it would give me problems, at least on Saturday, but I wanted pizza! :P