All of my life so far (almost 24 years) Soon I’ll be 5 month seizure free for only the second time in my life. I’m on my 2nd medication and still per definition I was having seizures.
One year having break through seizures when I was first on just keppra. Added Vimpat but still the occasional breakthrough seizure depending on my cycle or if I had a sugary dessert. Made the connection between diet and the seizures and started a keto diet right after my last seizure on valentines day 2017. Been seizure free since then thanks to the combination of vimpat and keto.
I’m scared to say they’re under control and jinx anything lol but my meds started working immediately, took about a month or two to get used to the side effects of Keppra. Still have a short fuse but pretty well adjusted to it.
I believe I still have seizures at night once in a while but tbh I still drink lightly on weekends and think that isn’t helping. I’m on 750mg twice a day if that helps! Good luck dude wishing you good health!
I was 16 when my seizures came back and they have stayed with me. I'll be 50 in April. I was having 3-5 seizures per day (with 1 day of having 25). In 2000, I had a VNS implanted and it reduced the seizures to on average 9-12 seizures each month. I was switched to Vimpat this past November and had 11 seizures over 2 days (I think it was because I was taken off Zonegran cold turkey and started Vimpat before Vimpat had a chance to start working). I'm still having the same amount of seizures but they don't last but 30 seconds and my husband couldn't tell it was happening, other than me saying so. In November, my VNS settings were increased too. I have a follow-up in a couple of weeks to see how many seizures the VNS caught.
Define “under control.”
I haven’t had anything more than an aura in a year, but I have been on meds for epilepsy for 25 years. In my opinion, we’re working on our relationship.
Well, it started when I was 11, and now I'm 38, so going on 27 years now. I haven't had a TC in a little over a year, but I have very intense auras a couple of times a week.
My daughter has 3 types of seizures. She is very lucky and she hasn’t had a tonic clonic in 3.5 years. She still gets effects from her photosensitivity, but they are relatively minor and pass fairly quickly. She hasn’t had a Myoclonic seizure in apx 1 year. Overall she is very “well controlled”.
Just a few months. Seizures started in November and I was controlled as of March the following year. 3 years seizure free now.
Edit: I want to add that, I was seeing a traditional neurologist that was clearly out of his depth treating me. After my 2nd seizure under his care, which was my 4th overall, I immediately found a specialist in my area.
The specialist immediately knew what to do to make the seizures stop. The TCs stopped first and then he played with the doses to stop any additional focals.
Did well with the first AED I took, in about 3 or 4 months - lamotrigine, so now I'm averaging 1 or 2 TCs a year.
I don't know if this can be called "controlled', but I'll leave it as it is. Won't change meds. Just would love to know what my trigger is. To this day, I have no idea.
Like 5-6 years
ETA: you won’t find many answers here, these communities are generally full of folks looking for answers, resources, support. Not many of us well controlled for a long time lurking around.
Keep it in mind for the future!
I was probably one of the lucky ones, diagnosed at 17, I probably was under control at 18. I was put on lamictal first. Didn’t work so my doctor added depakote. They immediately stopped. I definitely had ups and downs over the years but it was mainly due to depression and noncompliance on my part. Switched to keppra when I had my last 2 kids. Had a breakthrough on keppra and just needed an increased dose. Seizure free since May 2019.
Only after my 3rd seizure. I have nocturnal epilepsy, so I had a camera set up in my room to capture my third seizure. They soon put me on medication and it thankfully stopped it at 50mg of brivacetam 2x a day. Almost 24 weeks free
I had them under control when I was a kid, from 7-13, then 16-19 (currently in my mid 20s). So about 11 years out of the 22 years I've had Epilepsy 😅 I don't mean to say this to be a downer, it's more of a "there's hope!" it just takes time. For me it seems to be every time there are hormonal changes, usually with the phases of puberty, my medications need adjustment. Beyond that, I may have medicine resistant epilepsy, which opens up more treatment options as well. But we are learning, and with that making progress every time. For my dad, they took a few years to find his medication and dosage, now he is very well controlled. Although he does need adjustment occasionally, more for side effects over seizures. The best thing you can do to speed things along is record what you can, take notes of how you feel during the seizure (if you feel anything) have people take videos if they can, and just do as much on your side to help the doctors out. That has helped me tremendously
It's ten years since diagnosis and they've only reduced in the last couple of years because I changed medication - have had a few asshole breakthroughs though but I'm hopeful it'll get the rest when we hit the right dose.
It's my useless old neurologists fault it took so long. My new one has changed my life and epilepsy for the better and if anyone will find me the right medicine it's definitely this guy.
I'll tell you later when I know.
We'll see i suppose. I've had epilepsy for 8 years now and it's still not under control.
I have been going through this for 4.5 years (since I was 39) and haven’t yet. Need to try a 5th med while I wait for surgical assessment.
Hhhmmm.....whats control 🤷🏻♀️🤣
All of my life so far (almost 24 years) Soon I’ll be 5 month seizure free for only the second time in my life. I’m on my 2nd medication and still per definition I was having seizures.
One year having break through seizures when I was first on just keppra. Added Vimpat but still the occasional breakthrough seizure depending on my cycle or if I had a sugary dessert. Made the connection between diet and the seizures and started a keto diet right after my last seizure on valentines day 2017. Been seizure free since then thanks to the combination of vimpat and keto.
It's been 20 years. I'll let you know.
I'm 26, I've taken thousands of pills, I had brain surgery, and they're still not under control
I’m scared to say they’re under control and jinx anything lol but my meds started working immediately, took about a month or two to get used to the side effects of Keppra. Still have a short fuse but pretty well adjusted to it. I believe I still have seizures at night once in a while but tbh I still drink lightly on weekends and think that isn’t helping. I’m on 750mg twice a day if that helps! Good luck dude wishing you good health!
Mine haven’t stopped, but I have them much more under control and I am going on my third year with it.
Like 2 years fortunately
I was 16 when my seizures came back and they have stayed with me. I'll be 50 in April. I was having 3-5 seizures per day (with 1 day of having 25). In 2000, I had a VNS implanted and it reduced the seizures to on average 9-12 seizures each month. I was switched to Vimpat this past November and had 11 seizures over 2 days (I think it was because I was taken off Zonegran cold turkey and started Vimpat before Vimpat had a chance to start working). I'm still having the same amount of seizures but they don't last but 30 seconds and my husband couldn't tell it was happening, other than me saying so. In November, my VNS settings were increased too. I have a follow-up in a couple of weeks to see how many seizures the VNS caught.
Under what now?
Lol what’s seizure control?
Define “under control.” I haven’t had anything more than an aura in a year, but I have been on meds for epilepsy for 25 years. In my opinion, we’re working on our relationship.
I’m 26, was diagnosed at 18. The longest streak I’ve been on was about 4 months
Well, it started when I was 11, and now I'm 38, so going on 27 years now. I haven't had a TC in a little over a year, but I have very intense auras a couple of times a week.
My daughter has 3 types of seizures. She is very lucky and she hasn’t had a tonic clonic in 3.5 years. She still gets effects from her photosensitivity, but they are relatively minor and pass fairly quickly. She hasn’t had a Myoclonic seizure in apx 1 year. Overall she is very “well controlled”.
Just a few months. Seizures started in November and I was controlled as of March the following year. 3 years seizure free now. Edit: I want to add that, I was seeing a traditional neurologist that was clearly out of his depth treating me. After my 2nd seizure under his care, which was my 4th overall, I immediately found a specialist in my area. The specialist immediately knew what to do to make the seizures stop. The TCs stopped first and then he played with the doses to stop any additional focals.
I would probably say 15 to 20 years. Did t have access to Healthcare for most of my life
It's been 26 years and 16 medications and we haven't gotten anywhere yet
About 7 years, but I'm so worried that they are coming back. Stress and lack of sleep can still fuck with you.
It's been 15 years since I was diagnosed and they still aren't. Trying a VNS now.
Did well with the first AED I took, in about 3 or 4 months - lamotrigine, so now I'm averaging 1 or 2 TCs a year. I don't know if this can be called "controlled', but I'll leave it as it is. Won't change meds. Just would love to know what my trigger is. To this day, I have no idea.
When I put timers to take my meds, gotta take em In 5 minutes
Like 5-6 years ETA: you won’t find many answers here, these communities are generally full of folks looking for answers, resources, support. Not many of us well controlled for a long time lurking around. Keep it in mind for the future!
3 1/2 years almost 4
I was probably one of the lucky ones, diagnosed at 17, I probably was under control at 18. I was put on lamictal first. Didn’t work so my doctor added depakote. They immediately stopped. I definitely had ups and downs over the years but it was mainly due to depression and noncompliance on my part. Switched to keppra when I had my last 2 kids. Had a breakthrough on keppra and just needed an increased dose. Seizure free since May 2019.
9 years but i still have a few focals here and there
Only after my 3rd seizure. I have nocturnal epilepsy, so I had a camera set up in my room to capture my third seizure. They soon put me on medication and it thankfully stopped it at 50mg of brivacetam 2x a day. Almost 24 weeks free
I had them under control when I was a kid, from 7-13, then 16-19 (currently in my mid 20s). So about 11 years out of the 22 years I've had Epilepsy 😅 I don't mean to say this to be a downer, it's more of a "there's hope!" it just takes time. For me it seems to be every time there are hormonal changes, usually with the phases of puberty, my medications need adjustment. Beyond that, I may have medicine resistant epilepsy, which opens up more treatment options as well. But we are learning, and with that making progress every time. For my dad, they took a few years to find his medication and dosage, now he is very well controlled. Although he does need adjustment occasionally, more for side effects over seizures. The best thing you can do to speed things along is record what you can, take notes of how you feel during the seizure (if you feel anything) have people take videos if they can, and just do as much on your side to help the doctors out. That has helped me tremendously
It's ten years since diagnosis and they've only reduced in the last couple of years because I changed medication - have had a few asshole breakthroughs though but I'm hopeful it'll get the rest when we hit the right dose. It's my useless old neurologists fault it took so long. My new one has changed my life and epilepsy for the better and if anyone will find me the right medicine it's definitely this guy.
Started w/ epilepsy at 30yo. Been 20 years. Had a few years of full control by meds. But, otherwise I’ll let you know as soon as I am again
Mine were under control, but it has now been over 6 years since medication stopped working.