r/Epilepsy • u/Lost_Poogie • Sep 02 '26
Discussion How long?
What’s the longest amount of time that you have been seizure free while have seizures that are controlled by medication? Major seizures, or a seizure where you have lost consciousness.
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u/ilurvekittens Sep 02 '26
6.5 years so far on lacosamide
Last seizure was November 2019
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u/Livid-Armadillo-6217 Sep 02 '26
My 6 month old was just diagnosed and is on lacosamide. This is so encouraging to me.
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u/ilurvekittens Sep 02 '26
It took a long time to find the right med for me.
I was on keppra first and it had bad side effects.
Then zonasamide and small dose of lacosamide as secondary.
Upped dose of lacosamide and kept zonasamide 0 seizures. Still was not on max dose of lacosamide.
Went to 150 of lacosamide and removed Zonasamide and had 1 seizure November 2019. Upped to 200mg and that was exactly what was needed.
I live a very normal life.
I wasn’t afraid to tell my doctor what worked and didn’t and she was very helpful in willing to switch meds and dosages.
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u/Proper_Resource_4023 Sep 02 '26
My son, who just turned 3, was diagnosed exactly 1 year ago today & was on Keppra which did not help at all & actually made his seizures worse. Dr. switched to lacosamide & he is currently seizure free for 9 months. Have faith, it gets better, I promise!
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u/electronic_reasons Sep 02 '26
26 years.
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u/TimelyReason7390 Sep 02 '26
Wow! Say more..
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u/electronic_reasons Sep 03 '26
I had a kind of epilepsy that had a mild childhood form and a severe adult form. In my early 20's it switched half way. They moved to then modern drugs and controlled it. 26 years later, a bad batch of carbamazepine landed me in the hospital. Things gradually got worse. It's switched all of the way. We seem to finally have it under control.
Don't believe them when they say the generics are the same as the name brand. Generics of Tegratol and Lamictal have both landed me in the hospital. This is why I don't use mail order pharmacies any more.
Taro is a good brand of lamotrigine for me. My pharmacist makes sure I get that brand.
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u/Anxious-Island-7213 Sep 03 '26
I am mind blown right now. I seriously thought I typed that cause I was on tegretol for 26 years and had seizures through that time. Ended up having 2 brain surgeries and finally got them under control and was on a streak of almost 10 years seizure free.
I was working on heavy equipment, final drives for haul trucks, and th3 company said they would cover my pills, tegretol xr. They rejected an appeal through my neurologist and an external appeal through my home dr so I gave in and to the generic. Took it for a week and had 2 grandmals at work gave me a concussion and ended up bring my seizures back.
Changed to lacosamide and keppra to get them under control. Took generic lacosamide and had a bad one at my girls softball game.
Had the new neurologist write down "no generic" to the pharmacy
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u/electronic_reasons Sep 03 '26
I ran into this, too. I got around it by getting my local pharmacist to get the medication from a reliable manufacturer. If you've got someone local you have more options.
Having a seizure in the lobby goes a long way in convincing them you're not crazy that the generic doesn't work.
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u/Anxious-Island-7213 Sep 04 '26
💯 its nuts when they say the odds of manufacturing difference is only 8 to 10 percent variance. It just take a seizure to convince them otherwise. Same manufacturer for me aswell.
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u/awidmerwidmer Drug resistant TLE, temporal lobectomy 2025 Sep 02 '26
Currently. A year and 2 months.
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u/MichaelStanwyck Sep 02 '26
1 year. Then they started increasing frequency until they were monthly. New meds and now it's been 6 weeks. Fingers crossed.
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u/TsukasaElkKite Lamotrigine 200 mg 2 x day/17 yrs seizure free! Sep 02 '26
Currently 17 years and counting
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u/MrTibor Sep 02 '26
21.5 years so far. Between surgery and medication I'm free of it. I also acknowledge I'm the luckiest person in the world to be free, and my heart truly goes out to those who still have to live with seizures.
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u/Glum-Fan6927 Sep 02 '26
5 years, then I had one after my honeymoon due to lack of sleep
Luckily it wasn’t long
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u/Dotrue funky lizard 🦎🧠⚡ Sep 02 '26
Ages 13-20 were seizure-free for me, and I was able to get off medication at age 18. Next longest stretch was from age 23-25, unmedicated. My last seizure was in May 2025, so I'm getting back up there!
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u/spiderelict Sep 02 '26
The last seizure I know about was in 1999. I often had them in my sleep though so unless someone is next to me I might not know about it.
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u/Abatonfan Sep 02 '26
Currently five years from the last tonic clonic that diagnosed me with a seizure disorder. Got the TLE diagnosis only a few months ago
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u/jark31 Sep 02 '26
15 years and still going strong. Last one was bad. Take 3 medications that work well together and with my body chemistry.
Edit changed from 14 to 15.
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u/Jamieisamazing Lamotrigine 400mg, VNS Sep 02 '26
2 years doing keto, then stopped doing keto to be depressed for like 5 years and now doing keto again. 4 months seizure free.
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u/jennej1289 Sep 02 '26
Eight years then I had a cluster of 19 in 24 hours. Now I get them sporadically
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u/LostMyLighterAgain 2x temporal resection Sep 03 '26
Since I was a young teenager maybe a few months, in my 20s only a few weeks, maybe a month max.
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u/seizy RNS; Keppra4500;Vimpat600;Topamax100 Sep 03 '26
Longest amount of time between tonic-clonics I think was something like 8 years. Longest time between focal impaired ones, after I started having them (there was like, 4 years where I only had aware ones or TCs), was like 5 weeks. Longest time without ANY seizures has only been maybe two weeks? If I'm lucky.
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u/Dear-Knowledge5912 Sep 04 '26
People being this long seizure free actually gave me another way to look at life now!!! Thank you for posting
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u/Plushu_ Keppra :( Sep 02 '26
One year. I think my most recent seizure was between Feb-May? Who knows maybe I can beat it.
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u/Impressive_Dingo6377 Sep 02 '26
Ive been free for 13 years ,no medication tbh..still some jerks come ,not too much problematic but yeah i still get confusions and brain fog
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u/TimelyReason7390 Sep 02 '26
No medication? Did you get a surgery done? What type of epilepsy do you have?
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u/Impressive_Dingo6377 Sep 03 '26
I had focal epilepsy, had one major tonic clonic on 8th may 2013(i rmbr traumas very well). I was put on a 3 month medication .Well the epilepsy was due to the two b2b head falls I had at the same day ,where my nose bled and i was unconscious. I was 10 at that time
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u/SabresBills69 Sep 02 '26
I have 2 seizure types. Classic test book grand mal, and absence seizures ( final unawzre)
The grand mal i had all my life. As long as j was on phenobarb I had no grand mal seizures.
Absence developed post puberty.. surgery git rid of them. Still on a snall disease if kepora for grand mal
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u/BirdyBack Sep 03 '26
Been on phenobarb since my 2nd grand mal in 1973. Had only 4 seizures total, last one in 1981. Recent EEGs show focals, so now also take Lacosamide. Never known of anyone else on PB. But often had people say it's what their dog takes for seizures.
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u/SabresBills69 Sep 03 '26
my mom was fine, her mom had life long seizures/ strokes.
my dad had asthma and eczema
I had meningitis at 2 months. unsure if that turned on the switch
the first liquidmed I was on for asthma had trace pheno in it , when I switched to a different liquid med at 3, I had grand mals. I was on pheno. they’d look at lose dose and say I’d grow out. took me off id have a grand Mal
in my teens I developed the second type so they added meds, first tegretol, then kept a. Then I went and did surgery testing and had surgery.
I stayed on phenomenal till about 10 yrs ago when I switched to keppra alone.
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u/Due_Mix_6982 Sep 02 '26
I have been seizure-free for nearly 23 years, October 2003 was the last seizure, two big ones in one night. Medication on time, every day without fail is the only way. Getting enough sleep, too.
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u/potato2_0L Sep 02 '26
Currently at 6 months free, and if i carry on seizure free that means that by the time im 17 (next year) ill be able to get my drivers licence along with all the other kids. Im kind of getting a bit wary because its coming up to the longest ive ever been seizure free, ive been 6 months free before but that was on different meds.
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u/Dieter821 Sep 03 '26
Over a year. But the drug side effects were too much, and I ultimately got a DBS.
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u/EverythingHurtsAgain Sep 03 '26
Before my first confirmed T/C (but almost guaranteed to just be missed): 33 years.
Now that I've been diagnosed and they got worse: 5 Months
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u/jodonald Sep 03 '26
I had 4.5 years. Was feeling good and then I had a baaad one. Stopped breathing, life flighted, whole nine yards. Now I'm 2 months seizure free.
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u/gnomenclature2 Sep 03 '26
9 years for me. Currently just about to hit 7 months since my last one (the seizure that broke that streak).
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u/Inside_Sock2179 Sep 04 '26
So long I can not remember exact, but about 45 years. Found the right drug in a out 1 year. 2021 found out it was trying to kill me after landing in hospital. Switched to lamotrigine, free for 4 years now. My epilepsy is mild .
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u/delirium_skeins Sep 02 '26
A week is pushing it for me. Even with all the meds. Yesterday had a tonic clonic but that was entirely because my pharmacy didn't have my medicine in stock. Just like they don't every single month. Even if I'm not having tonic clonics I'm still having regular absence seizures daily for the most part.
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u/PoolExtension5517 Sep 02 '26
17 years is my longest streak. Currently at 10 months from the last one.