how many years seizure free?

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seetseet

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Heya there fellow forumeers 😊
I wss just wondering you could please share the longest time you have gone inbetween seizures (and the type you get) and also average time between seizures?
I am just curious because my neuro told me that if I make it to 3 years seizure free he can start weaning me off keppra (but he said the chances of adult epilepsy disappearing is 5% or less) but he has said a lot of things 😊
But I am also just curious because my personal record is almost two years, and i seem to read a lot of 2 year stories, ..perhaps it's some sort of average human bodily resistance time limit like we have with other meds, food, alcohol etc?..
 
I was seizure free for 13 years before the head injury that gave me E, but since then the longest I have gone is 14 months without a seizure.
 
*checks logs*

K. I've been seizure free for about 22 minutes now. Go me!

Oh, I've gone a few days here and there with no seizures, the longest stretch was 2 days, but typically I have (lately) about 10-15 seizures a day. It was much less when I was on a lower dose of Lamictal.
 
Hi seetseet,

The longest I've gone seizure free is 1 month and that happened this past Jan. and it's the first time it ever happened in 44 yrs.

Wishing you only the best and May God Bless You,

Sue
 
The longest I went was 21 years as I was diagnosed as a baby & took seizures until I was 3 (taken of meds when I was 7). Back when I was a baby/toddler I took tonic clonics.

I was 24 when my seizures returned, started taking auras, simple/complex partials.
I was having seizures every couple of weeks & my old neuro tried me on a variety of meds, none that controlled the epilepsy.

I had brain surgery in March 2011 when I was 33. I was on 3 meds before surgery (Tegrteol, Keppra & Neurontin but the epiologist took me of the Neuontin before my surgery because of it's side effects). I went 2 years seizure free & was able to come of Tegretol which we did slowly.

I started having seizures again in 2013 & now have focal seizures which are pretty much more like simple partials. My neurologists at the epilepsy clinic I go to & I have adjusted my meds a few times & this past year I've been going approx 6 weeks seizure free most months. I have been having more seizures last 2 months but I have added stress so expected it.
 
I developed my epilepsy as an adult. I experience tonic-clonics (generalized seizures). I think I'm up to seven years seizure-free now -- I'm lucky enough to be medication-responsive. But prior to that last seizure seven years ago I tried twice to wean off the meds after a decent seizure-free interval, with no success. So I think I'll be on meds for the foreseeable future.
 
Well my first seizure occurred when I was around 2/3 yrs. I was in a hospital being treated for pneumonia. Something I was given cause me to have a tonic clonic (gran-mal)
seizure. Don't know what it was, and will never know. That hospital closed a long time ago.

I was about 9-10 years seizure free.

When I started (1992) Jr High School is when I started to have CPS. I'd have them a various times of the day, several times a week. I was placed on AEDs. But I was "lucky" then because I would have auras before them. Those would continue into high school. After a few neurologist changes, I was eventually taken off AEDs. I went to a community college for two years. The CPS continued, but the auras slowly went away.

'01 Is when I had two unprovoked tonic clonic (gran-mal) seizures a couple days apart.
I got an emergency appt. with a new neurologist who put me back on AEDs. IMHO this was the best neurologist I've seen, including my current one. If this neurologist didn't move, I'd still be their patient. Between '01-'13 I've had many CPS. Estimate of at least 4-6 CPS a month. While I only had only 5 tonic clonic (gran-mal) seizures. Two unprovoked, and three provoked in the Epilepsy Monitoring Unit (EMU).

Since my RTLS in '14 to now, I've been seizure free. :) Knocking on 2yrs 5ths 10/13
 
6 years was my longest, and during that time being unmedicated I thought they were gone. However, I've recently found I have some damage to my occipital lobe and thus these random flashes of lights I've been seeing for the past 11 years are probably occipital lobe seizureally. I don't really class them as such as in they don't affect me apart from being an annoyance.

As for the six years, I was free from TC and petit mal seizures. Had a TC last year and since then I seem to have a petit meal every two months.
 
seetseet said:
Heya there fellow forumeers ��
I wss just wondering you could please share the longest time you have gone inbetween seizures (and the type you get) and also average time between seizures?
I am just curious because my neuro told me that if I make it to 3 years seizure free he can start weaning me off keppra (but he said the chances of adult epilepsy disappearing is 5% or less) but he has said a lot of things ��
But I am also just curious because my personal record is almost two years, and i seem to read a lot of 2 year stories, ..perhaps it's some sort of average human bodily resistance time limit like we have with other meds, food, alcohol etc?..
Click to expand...


Hi seetseet,

July made 18 years for me being seizure free. I had a full temporal lobectomy for my seizures in 1988 that failed. I used diet, behavior modification, supplements, and lifestyle changes to stop the seizures. I had mostly complex partials, but also had drop attacks and gran mal.



I hope you meet your goal and can eventually wean from the keppra.
 
Last edited:
Doc always asks but if not with it and having pat males how mould you know
 
The longest I've gone seizure free has been about 2 1/2 weeks. I usually have about 4 seizures a month. They might be spread out throughout the month or they can happen close together. I could be having more though because I usually don't know that I've had a seizure unless there is someone there to see me have it.

When I was first diagnosed with epilepsy in 2003 I was having about a seizure a day. My dr had lessened the number of seizures that I was having with meds. I got a VNS in 2007 and the number of seizures I'm having went down to where they are now. He was also able to decrease some of my meds since I've gotten it but I am still taking them.
 
I'm more like Nakamova, I guess. Have to stay medicated. My history, since about age 13 is if I stay medicated I'm ok. If I'm off meds, I go anywhere from 3 months to 2 years then have another t/c. I've lost track, but it's been probably 25 years since I've had a seizure. Before that, because my dr. suggested someone as stable as me should be able to go unmedicated, I did that for 2 years before having a seizure. Back on meds. Not fooling around with it any more. I recognize the pattern, and I'm not going there again.
 
As far as I can tell, perhaps just over 3 months with this new med I'm on since I've never been aware of having had one, which is amazing because of all the different meds I've had over the years and the unsuccessful surgery that I did.
 
Sorry I never answered the other 2 questions, I have TLE with simple partial and complex partial seizures. There is no average time between seizures, very random and unpredictable.
 
Zoe said:
Hi seetseet,

July made 18 years for me being seizure free. I had a full temporal lobectomy for my seizures in 1988 that failed. I used diet, behavior modification, supplements, and lifestyle changes to stop the seizures. I had mostly complex partials, but also had drop attacks and gran mal.



I hope you meet your goal and can eventually wean from the keppra.
Click to expand...


Inspiring Zoe.

Congratulations.
:clap:
 
My god just re-read my post,this blasted iPad changes what I type between type box and screen totally arsed about.Unless I having peti mal.All I know is when first went on lac my head felt clear memory was better no head aches or awful aura but I gone backwards now eeg is spiking temporal lobe e not being controlled but also got some brain scarring so some memory problems could be associated with that....I am back on the lac dose originally prescribed I take it but see no point if eeg abnormal.
I don't understand if e is what you believe be controlled why would eeg still show temporal lobe.Would this not apply to all e people Meds controlling then eeg should look normal maybe nak you know
 
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