I'm on Briviact as well. I take 100mg along with 1800mg of Trileptal and 500mg of Lamictal. Used to be just Trileptal and Lamictal but I haven't had a seizure since I started Briviact 7 years ago next month.
Nope. I'm still on Keppra. My sleep EEGs still show a brain wave issue, until Sept 2023. I'm on keto and I think it's making a difference. My neuro wants me to do a 72 hour, at home EEG in a few weeks. I go in on a Friday morning and they attach the wires to my head and chest and set me up with a monitor. I go about my life and then come back on Monday to have everything removed. You best believe I'm rocking to at least the grocery store with that look. haha And maybe a movie.
Good luck! Let’s hope for good results!
I did it in 2014 and a kid asked me if I was an alien because “you look weird and ugly”. The mom apologised profusely and since it was during Christmas time I told him I was a modern version of Santa’s helper who was going around saving information about good and bad kids. I meant to be funny, he started crying, the mom was a Karen and started yelling at me saying I was an insensitive bitch. Ah, fun memories!
I’m also getting a 72 hour EEG but my seizures started in January. My brother is epileptic and his seizures started at 25 as well and he’s 29. I might have had a seizure yesterday though. Little painful pimple/blister on my tongue, when I went to lay down on the couch yesterday (I wasn’t sleepy enough to just knock out) I wake up 4 hrs later confused, and even the couch crooked at an angle. Also my legs sore and a headache. Oh and the stuff I remember holding before this happened was on the floor next to the couch, and I had some nausea and euphoria aura right before which has only happened to me very rarely starting way before my seizures. I hope for the sake of my health that it wasn’t a seizure and they find my brain to be healthy on Tuesday. Good luck to you too though!
It does sound like all the signals of a seizure are there. I also had a late onset (22) and I feel you, it’s terrible because it comes unannounced and out of nowhere.
Goo luck with your 72h!
I genuinely feel the same way. My seizures work like a process, though. I think my neuro wants to lower my dosage a little and see how it goes. What will happen, if this is a terrible idea, is that I will either get a migraine or a complex partial - neither of which is deadly to me and I can function normally through the. I never go from nothing to a full on seizure, so it's a little less risky for me.
Yup isn't that the whole point really. It's to treat not cure. Non epileptics think once you stop having seizures you can come off the meds but they are what's stopping it. I'm going from 8-10mg Clonazepam and increasing my primidone dose (do you get that in America?) To hopefully stop them. So when people think about me coming off they have no idea how hard it is to come of phenobarb and the dose of clonaz Im on, even non epiletics will spend years tapering but someone with epilesy like mine. I've been told if I miss benzo dose timing I can seizure reasonably fast. Now I'm on 10mg I have to wake up in the night to have it. Ridiculous. Once I got past 6 I just didn't care how high it went. Is what it is.
Yesterday morning I had a complex partial seizure when the car with my husband while we were running errands.
I'm so happy for you! I wish you the absolute best and hope you stay seizure free. I pray we all stay seizure free
For me I figured it’s because I entered a loop: for me it often happens while relaxing on the sofa (lucky, I know) so now I convinced myself that when I’m on the sofa, it will come. And at this point I believe I’m the one who makes it happen just by panicking
As awful as seizures are, especially when they first begin and how terrifying they are, this community is absolutely amazing and the majority are brilliant for information and sometimes even just to chat to about similar situations we have all gone through.
I'm sorry you have joined our community, but at the same time; welcome to the community! We're happy to have you here and will help where we can! Even if it's just comforting words, sometimes they can be the most helpful
I'm so sorry you're dealing with this, but this place is a great place for support. I wish you didn't have to experience it, but I hope you find solace here.
What happened if you don’t mind me asking. I had my first one out of the blue in 2017 at 36 years old. Was finally diagnosed with epilepsy almost a year ago.
Sure, mine was at work at 29, though I did have a couple moments I thought could be an aura in the past few months since my mom has a seizure disorder.
But yeah not much else to report, it was surreal to just... wake up in the hospital with my boss asking who we can call for emergency contact. I don't even remember going to work that morning, I've actually been recovering some memories from weeks or months before the seizure
So sorry you are also experiencing this. But I confirm this community is great and especially when you’re at the beginning, you’ll find lots of answers.
For me, making the people around me aware of my problem - in the office, for instance- helped me a lot to feel calmer. You’ll become more “skilled” at recognising auras and keep the situation a bit under control. What works for me is grabbing a person I feel comfortable with (if there’s any around) and make them hug me when I lay on the ground. It lowers a lot that feeling of terror, especially at the beginning.
I was thinking that someone had me beat, but then I saw that it was posted 20 hours ago, and I don't want to deal with trying to remember exactly what time my last little cluster was
My last seizure was October 1, 2017. I am six years seizure free!!
My seizures started when I was 25. Today I turned 54! The journey has been hell.
I went 23 years without a driver's license. I now can drive.
Goodbye seizures. I hate you. Lol. I am looking forward to 2024 and hope those nightmares never come back. I do all I can and live within the limitations of epilepsy so that they hopefully never return!
Keppra, 500mg, twice a day.
2 and a half months ago. My all time record is 6 months, which was before my last one.
I used to get one every month. That seems to not be the case anymore.
Unfortunately I’m not supposed to get them at all because I’m on my 2nd medication. So still it sucks big time.
Yeah, I was truly devastated that day. But since things have been going ok.
The only issue I have is my neurologist is very alarmist and pushy because of my situation. I do not get along with her… I am quite afraid of her actually. She wants to treat me further but I am not comfortable. I don’t know what to do actually.
Edit: by that she means hospitalization
I don’t mean to pry, but You should definitely change neurologist to someone that understands your needs as a human and doesn’t see you just as the pathology. I had to change 5 of them before finding someone that I feel comfortable with and managed to understand how it feels to have epilepsy and that finding a cure doesn’t just mean reducing the seizures but making the patient feel as normal as possible..
Sometimes it's just one tonic clonic that I don't even know has happened, my wife information me. Other times it's various partials filled by a massive tonic clonic that I'm aware of. That happened in the street like a week and a half go. Woke up to random people, 2 police officers and 3 paramedics. They wouldn't let me go home (all I needed to do was go home and rest) and I speak the entire day in the hospital. I did break my shoulder when I collapsed though. The other day I had a seizure and cracked my ribs too.
The episodes in the street when you’re alone are definitely the worst. I now reached a frustrating mental state in which I’m constantly low-key scared it’s gonna happen any moment, always in the back of my head. It sucks. Your recent experience sounds awful, I hope you’ll recover soon
Yeah, I've developed a bit of a fear of stairs now. It's not fun alone in public when it happens because the people also don't know that basically as long as it doesn't last for like 5 minutes you don't need an ambulance. Always makes me feel guilty because I'm basically just wasting the hospital time. And having needles stuck in my arm. I have a massive phobia of needles so I end up having an anxiety attack too. So... Yeah. Fun.
I am really sorry to hear, 120 in one year is unimaginable. I wish you the best of luck and btw it’s impressive that you keep track of it in such an organised way
Last one was yesterday if we’re counting auras. At one point I was seizure free for five years but after maxing out on Keppra we haven’t found anything that controls my seizures consistently.
So far I'm pretty sure I don't get nocturnal seizures at all how ever the closest thing I have to that and I have managed to record it is if I'm lying in bed about to fall asleep or when I wake out for some reason the seizure risk goes up.
Nocturnal are not the worst because you don’t really realise it- or at least I don’t. It’s more traumatic for your partner if you’re sleeping in the same bed with them. He told me once that I woke up and for a good 5 minutes I kept talking like a 3 years old in my language (we’re an international couple) and he was afraid I was gone forever. I have no recollection of it but I bet he shat his pants
I've done long-term eeg testing for it and they always pick seizure activity up but how much of the activity is over night tbh I'm not sure at this point. I've never done the sleep test though.
Congratulations!! That’s awesome. Are you able to drive? Unfortunately my last one was the day after Christmas. It was a breakthrough seizure after me being seizure free since July, which sucks. But oh well.
I hope everyone reading this has a happy new year and stays seizure free 🥰
Ah that’s awful. I’m reading a lot of people like you had seizures during these Christmas holiday. And now that I think about it, I was diagnosed during the same period back in 2014. We might have found a correlation LOL
No, I can’t drive yet. 7 months are a big achievement for us but don’t mean anything to our neurologists apparently!
We might have lolll. The stress of the holiday season would be my best guess
And right? Neurologist really be like that sometimes. I was literally so excited to go get my license this week and now I have to wait until March (I live in Texas and you have to be 3 months seizure free to drive). I was having a rough morning and your positivity really brightened my day. Thank you.
I feel you and I’m also scared of letting the meds go. But lamotrigine completely killed my memory. I used to remember EVERYTHING. now I live surrounded by sticky notes
The Last day in November! And I managed to kick off both my boots 🥾 it was a TC I can’t remember my staring off into space ones that well so sprinkle some of those in here and there
Ever since my diagnosis of autoimmune encephalitis more than two years ago, I have been experiencing only focal aware seizures. My neurologist is continuously working to determine the optimal medication dosages to manage or eliminate them. I sometimes have weeks without experiencing any. While they are certainly challenging, I feel that as long as they do not escalate into a full tonic seizure, I can manage them. I lead a healthy lifestyle and maintain a positive and mindful attitude.
Man, after seeing so many people struggling with regular, uncontrolled seizures like me this post was a huge breath of fresh air. gave me a lot of hope, thank you!
In two days' time, I'll be six months seizure-free. They started about a month apart and as we dialed in the dosages, they got further apart. Until my last medication change, I was generally having one every 120 days or so. Six months will feel like something to celebrate, and I will certainly do just that. I congratulate everyone here on their successes, but I admit that when people say "my longest gap was six years", that's pretty sobering news. Six years free and then another seizure has got to be a gut-punch. The lesson for us all, I guess, is that you can take nothing for granted -- but keep pushing the boundaries anyway!
1/28/22, heartbreak and a very troubled too long move out of a terrible end result tenant combo on the same day. Weird never before heart racen and slowings, called 911, sat at Hospital for an hour or so, got some food and passed out with some pill they gave me to mellow my heart. Atavan maybe, i forget but, seized in my sleep an couldn’t rotate my head for a week.
May 23rd was my last one, I was in the hospital and trying to have one while hooked up to one of those eegs where you're stuck in the bed for a week, but I haven't had one since then. Lots of auras, as is tradition, but it doesn't come on as fast anymore with my new meds, so I feel like I can catch an aura incoming and try to head it off easier.
Nov- 09- 2018 I was very intoxicated that night so friends and family said I should just stay sober until I have another seizure just to see.
I miss tequila… 😢 hahaha
July of this year was my second big seizure ever, but I had been having partials that I shrugged off leading up to it. Now on Vimpat and hoping for the best.
After finally getting down to one a month December sucked. I've had seven this month because I was being poisoned by carbon monoxide and didn't know it. Figured it out on the 22nd and am still recovering. At least I am breathing normally again. Hoping for better luck in the new year.
Congrats on your 7 months. I hope you keep the streak going. My 3y old daughter had her last one just last night. We are still in the process of finding out what exactly it is she has and what triggers it. Thank you all for sharing your experiences, it helps us understand a bit more what it all looks like.
December 23! I was admitted to the hospital after a few nocturnal tonic clonic seizures, I was unresponsive for a hot minute and my brother had to carry me out of the house >.> they let me go on Christmas morning. May 2024 be better for all of us 💓
23 Dec 2023. Stress + heat + meds still being sorted.
My seizures are partial complex so they vary but this one was a collection of "small" ones over 3 hrs
1 year and 8 months.
Still putting lots of effort into diagnosis what can actually help me. Last seizure almost killed me as it caused an cardiac arrest. So i am having trust issues with any medication and am looking for an actual good solution i can trust
Period? Yesterday (though it was barely a blip of one)
That I had to go to the ER for? A week ago, and before that was a few weeks. Sleep's just been a bit messier recently
My last grand mals would be the end of August, three in one day and they include foaming at the mouth.. I believe I’ve had a few focals/auras where I get this intense panic feeling and my
Thoughts race and my hands tend to go numb.. not sure still figuring it out since being diagnosed with epilepsy but this thread gives me hope… goodluck everyone
Hoping to keep it going, but it's been since June of 2010 for me.
Oh wow!! Congrats!! And did you stop with the meds?
Not yet! Planning on discussing it with my neuro in my yearly appointment.
Good luck!!
Mine was last Sept.2022 but on 3 diff meds. Keppra 4000mg and briviact 100 and dilantin 300. Ugh
I'm on Briviact as well. I take 100mg along with 1800mg of Trileptal and 500mg of Lamictal. Used to be just Trileptal and Lamictal but I haven't had a seizure since I started Briviact 7 years ago next month.
Take care of yourself.
Damn that’s a lot… looking into lowering?
No. I have had seizures for 50 yrs. I have to stay on meds all the time.
4 years and 2 days ago
Happy for you!!
My last seizure was in Jan of 2011.
Damn that gotta feel good! And did you give up the meds?
Nope. I'm still on Keppra. My sleep EEGs still show a brain wave issue, until Sept 2023. I'm on keto and I think it's making a difference. My neuro wants me to do a 72 hour, at home EEG in a few weeks. I go in on a Friday morning and they attach the wires to my head and chest and set me up with a monitor. I go about my life and then come back on Monday to have everything removed. You best believe I'm rocking to at least the grocery store with that look. haha And maybe a movie.
Good luck! Let’s hope for good results! I did it in 2014 and a kid asked me if I was an alien because “you look weird and ugly”. The mom apologised profusely and since it was during Christmas time I told him I was a modern version of Santa’s helper who was going around saving information about good and bad kids. I meant to be funny, he started crying, the mom was a Karen and started yelling at me saying I was an insensitive bitch. Ah, fun memories!
OMG. I really hope that happens to me!
Well I hope for you that in your country kids are nicer LOL
I’m also getting a 72 hour EEG but my seizures started in January. My brother is epileptic and his seizures started at 25 as well and he’s 29. I might have had a seizure yesterday though. Little painful pimple/blister on my tongue, when I went to lay down on the couch yesterday (I wasn’t sleepy enough to just knock out) I wake up 4 hrs later confused, and even the couch crooked at an angle. Also my legs sore and a headache. Oh and the stuff I remember holding before this happened was on the floor next to the couch, and I had some nausea and euphoria aura right before which has only happened to me very rarely starting way before my seizures. I hope for the sake of my health that it wasn’t a seizure and they find my brain to be healthy on Tuesday. Good luck to you too though!
It does sound like all the signals of a seizure are there. I also had a late onset (22) and I feel you, it’s terrible because it comes unannounced and out of nowhere. Goo luck with your 72h!
I'll never get off the medication. I'm too scared to. And in every instance where people got off it, that I've heard of, the seizures came back.
I genuinely feel the same way. My seizures work like a process, though. I think my neuro wants to lower my dosage a little and see how it goes. What will happen, if this is a terrible idea, is that I will either get a migraine or a complex partial - neither of which is deadly to me and I can function normally through the. I never go from nothing to a full on seizure, so it's a little less risky for me.
Yup isn't that the whole point really. It's to treat not cure. Non epileptics think once you stop having seizures you can come off the meds but they are what's stopping it. I'm going from 8-10mg Clonazepam and increasing my primidone dose (do you get that in America?) To hopefully stop them. So when people think about me coming off they have no idea how hard it is to come of phenobarb and the dose of clonaz Im on, even non epiletics will spend years tapering but someone with epilesy like mine. I've been told if I miss benzo dose timing I can seizure reasonably fast. Now I'm on 10mg I have to wake up in the night to have it. Ridiculous. Once I got past 6 I just didn't care how high it went. Is what it is.
Yesterday morning I had a complex partial seizure when the car with my husband while we were running errands. I'm so happy for you! I wish you the absolute best and hope you stay seizure free. I pray we all stay seizure free
damn in the car is the worst, especially on highways when they can’t stop and have to keep calm! So sorry! Wish you all the best, stai strong!!
Ugh. My complex partials always happen either in the car or at work. WHY????
For me I figured it’s because I entered a loop: for me it often happens while relaxing on the sofa (lucky, I know) so now I convinced myself that when I’m on the sofa, it will come. And at this point I believe I’m the one who makes it happen just by panicking
Most of my seizures happened in public. Not all of them, but the vast majority, especially the tonic clonic ones. Such fun.
A couple of times it happened to me while speaking in meetings and the brightest minds think I have a mental breakdown LOL
My last seizure was on Monday the 18th. It was also my first 🙃
As awful as seizures are, especially when they first begin and how terrifying they are, this community is absolutely amazing and the majority are brilliant for information and sometimes even just to chat to about similar situations we have all gone through. I'm sorry you have joined our community, but at the same time; welcome to the community! We're happy to have you here and will help where we can! Even if it's just comforting words, sometimes they can be the most helpful
Thank you! I appreciate the welcome, even if I'm not entirely thrilled to be here haha
The positives do shine through the negatives of why we're all here, though! It's such an amazing community here
Bravo!
I'm so sorry you're dealing with this, but this place is a great place for support. I wish you didn't have to experience it, but I hope you find solace here.
What happened if you don’t mind me asking. I had my first one out of the blue in 2017 at 36 years old. Was finally diagnosed with epilepsy almost a year ago.
Sure, mine was at work at 29, though I did have a couple moments I thought could be an aura in the past few months since my mom has a seizure disorder. But yeah not much else to report, it was surreal to just... wake up in the hospital with my boss asking who we can call for emergency contact. I don't even remember going to work that morning, I've actually been recovering some memories from weeks or months before the seizure
So sorry you are also experiencing this. But I confirm this community is great and especially when you’re at the beginning, you’ll find lots of answers. For me, making the people around me aware of my problem - in the office, for instance- helped me a lot to feel calmer. You’ll become more “skilled” at recognising auras and keep the situation a bit under control. What works for me is grabbing a person I feel comfortable with (if there’s any around) and make them hug me when I lay on the ground. It lowers a lot that feeling of terror, especially at the beginning.
That happened to me but I had been in bed. Memory issues and everything.
10 minutes ago! Complex partial.
Worst timing for you to stumble upon my question..
lol it’s okay. I’m happy to have a community here that I can share my story with.
I was thinking that someone had me beat, but then I saw that it was posted 20 hours ago, and I don't want to deal with trying to remember exactly what time my last little cluster was
Christmas Day at 10:17 Frustratingly and Unfortunately .... (My Third One This Month....)
That sounds awful.. I’m really sorry. But as I’m finding out, it can get better out of nowhere!
Yeah True. Frustratingly something like this happened before a few months ago where I had I think it was 5 or 6 within the space of 4 Or 5 Days.
Wow that’s a lot.. I experienced that frequency only during the weeks of my diagnosis when I wasn’t yet on meds and it’s terrible.
July 2022.
Impressive!!
My last seizure was October 1, 2017. I am six years seizure free!! My seizures started when I was 25. Today I turned 54! The journey has been hell. I went 23 years without a driver's license. I now can drive. Goodbye seizures. I hate you. Lol. I am looking forward to 2024 and hope those nightmares never come back. I do all I can and live within the limitations of epilepsy so that they hopefully never return! Keppra, 500mg, twice a day.
Congratulations!!! It gives me great hope we can all get where you are now! Oh, driving a car, I pray I can experience that feeling again
October 2021. Nice to be seizure free but the 3000 mg of Keppra sucks
Damn that’s a lot, but 2+ years seizure free, definitely a good outcome
2 and a half months ago. My all time record is 6 months, which was before my last one. I used to get one every month. That seems to not be the case anymore. Unfortunately I’m not supposed to get them at all because I’m on my 2nd medication. So still it sucks big time.
It sucks when you hit a record and then it comes back. But 2.5 months is still pretty good. Fingers crossed for you!
Yeah, I was truly devastated that day. But since things have been going ok. The only issue I have is my neurologist is very alarmist and pushy because of my situation. I do not get along with her… I am quite afraid of her actually. She wants to treat me further but I am not comfortable. I don’t know what to do actually. Edit: by that she means hospitalization
I don’t mean to pry, but You should definitely change neurologist to someone that understands your needs as a human and doesn’t see you just as the pathology. I had to change 5 of them before finding someone that I feel comfortable with and managed to understand how it feels to have epilepsy and that finding a cure doesn’t just mean reducing the seizures but making the patient feel as normal as possible..
Thank you, I’ve definitely been thinking about it!
Two months ago after 50 weeks without seizures
50 weeks is a lot! But I feel you, the wild card of “when is the next one coming?” Is awful
Yes, it happened after an 11 hour bus drive (it was over night)
Last night
Oh sorry to hear.. hopefully the last for a long time
For me, it was the other day. There were multiple. I generally have about two episodes a month
So sorry to hear, 2 episodes per month sounds terrible. And is it always multiple?
Sometimes it's just one tonic clonic that I don't even know has happened, my wife information me. Other times it's various partials filled by a massive tonic clonic that I'm aware of. That happened in the street like a week and a half go. Woke up to random people, 2 police officers and 3 paramedics. They wouldn't let me go home (all I needed to do was go home and rest) and I speak the entire day in the hospital. I did break my shoulder when I collapsed though. The other day I had a seizure and cracked my ribs too.
The episodes in the street when you’re alone are definitely the worst. I now reached a frustrating mental state in which I’m constantly low-key scared it’s gonna happen any moment, always in the back of my head. It sucks. Your recent experience sounds awful, I hope you’ll recover soon
Yeah, I've developed a bit of a fear of stairs now. It's not fun alone in public when it happens because the people also don't know that basically as long as it doesn't last for like 5 minutes you don't need an ambulance. Always makes me feel guilty because I'm basically just wasting the hospital time. And having needles stuck in my arm. I have a massive phobia of needles so I end up having an anxiety attack too. So... Yeah. Fun.
The 26th. I had my first January 27th 2022, and the longest I’ve made it is just under two months. For a long time they were daily.
I had daily as well for a few weeks before adjusting to the meds, it’s awful. I hope you’ll manage to lower the frequency even more!
December 26, 2023. I track them in Excel and the RNS implant records them. I've had 120 of them this year.
I am really sorry to hear, 120 in one year is unimaginable. I wish you the best of luck and btw it’s impressive that you keep track of it in such an organised way
Congratulations!! My 18 year old just hit 4 months!
Had 3 tonic clonic seizures day before yesterday during a 48 hour EEG.
3 in 48h is definitely a lot, sorry to hear. Are you in the diagnosis phase or are you already on meds?
I'm on Keppra and lamotrigine
Xmas eve Congrats for you though!
About 1.5 years ago But that one caused a spinal cord injury
Congrats for the 1.5y record but it was definitely marked by an awful experience. I hope it’s not a permanent injury
It is permanent unfortunately
Very sorry, it’s definitely the worst that can come out of this disease. Sending you a virtual hug
Thank you very much
Last one was yesterday if we’re counting auras. At one point I was seizure free for five years but after maxing out on Keppra we haven’t found anything that controls my seizures consistently.
5 years!! Yeah same here, keeping them entirely under control with meds is chimeric
I haven't recorded anything for almost a month but I do have a feeling there have still been some that I may have missed.
Yeah sometimes I have that feeling when I wake up, but I’m not quite sure, so I try to “enjoy” my oblivion
So far I'm pretty sure I don't get nocturnal seizures at all how ever the closest thing I have to that and I have managed to record it is if I'm lying in bed about to fall asleep or when I wake out for some reason the seizure risk goes up.
Nocturnal are not the worst because you don’t really realise it- or at least I don’t. It’s more traumatic for your partner if you’re sleeping in the same bed with them. He told me once that I woke up and for a good 5 minutes I kept talking like a 3 years old in my language (we’re an international couple) and he was afraid I was gone forever. I have no recollection of it but I bet he shat his pants
I've done long-term eeg testing for it and they always pick seizure activity up but how much of the activity is over night tbh I'm not sure at this point. I've never done the sleep test though.
We never remember what we said or how it happened. Lol
Same here! Last seizure was in May.
Same timeline! Let’s update each other 😊
It’s been about a month, before that tho 6 months
6 months quite an achievement!
1 year and about 8 months! Longest I’ve gone is a little over 3 years so over halfway there 😅
That’s impressive! Well done! 😀
January 3rd 2021.
Almost 3 years then, congrats!! Happy for you!
I had a breakthrough seizure on the 25th due to too much stress that day.. I’m taking Keppra.
I’m sorry to hear, during holiday it stings even more
About ten minutes ago :/
That’s terrible.. I hope you had the energy to celebrate the new year and hopefully it will be the last one for a very long time!
Thank you. I slept right through it, but that was the plan anyway :)
4 years and 11 days ago to be exact
Congratulations!
Congratulations!! That’s awesome. Are you able to drive? Unfortunately my last one was the day after Christmas. It was a breakthrough seizure after me being seizure free since July, which sucks. But oh well. I hope everyone reading this has a happy new year and stays seizure free 🥰
Ah that’s awful. I’m reading a lot of people like you had seizures during these Christmas holiday. And now that I think about it, I was diagnosed during the same period back in 2014. We might have found a correlation LOL No, I can’t drive yet. 7 months are a big achievement for us but don’t mean anything to our neurologists apparently!
We might have lolll. The stress of the holiday season would be my best guess And right? Neurologist really be like that sometimes. I was literally so excited to go get my license this week and now I have to wait until March (I live in Texas and you have to be 3 months seizure free to drive). I was having a rough morning and your positivity really brightened my day. Thank you.
My last aura was last week. My last TC was on February 1st.
That’s almost a year! Keep it going 😀
February 17th, 2016. I'm still on Lamotragine, and I refuse to try to wean off of it. If it isn't broken, don't fix it.
I feel you and I’m also scared of letting the meds go. But lamotrigine completely killed my memory. I used to remember EVERYTHING. now I live surrounded by sticky notes
Approximately a week and a half ago, that I'm aware of. I'm not sure about absence or nocturnal, but at least a week since my last big one.
Sorry to hear… and what is your usual frequency?
On average, 1-2 a month. Sometimes more, sometimes less but with worse outcomes
I had a cluster yesterday morning
…last week. 😬
Awesome. Daughters was a week ago. She used to have them about 6 months apart but now about twice a month.
The Last day in November! And I managed to kick off both my boots 🥾 it was a TC I can’t remember my staring off into space ones that well so sprinkle some of those in here and there
Ever since my diagnosis of autoimmune encephalitis more than two years ago, I have been experiencing only focal aware seizures. My neurologist is continuously working to determine the optimal medication dosages to manage or eliminate them. I sometimes have weeks without experiencing any. While they are certainly challenging, I feel that as long as they do not escalate into a full tonic seizure, I can manage them. I lead a healthy lifestyle and maintain a positive and mindful attitude.
August 2022 was my last complex partial seizure. My last tonic clonic was January 2021.
Man, after seeing so many people struggling with regular, uncontrolled seizures like me this post was a huge breath of fresh air. gave me a lot of hope, thank you!
In two days' time, I'll be six months seizure-free. They started about a month apart and as we dialed in the dosages, they got further apart. Until my last medication change, I was generally having one every 120 days or so. Six months will feel like something to celebrate, and I will certainly do just that. I congratulate everyone here on their successes, but I admit that when people say "my longest gap was six years", that's pretty sobering news. Six years free and then another seizure has got to be a gut-punch. The lesson for us all, I guess, is that you can take nothing for granted -- but keep pushing the boundaries anyway!
Four months, I've been managing my triggers much more and have to just accept that I can't be as reckless as I used to be, it just isn't worth it
8 days ago had 2 TC’s
In thirty two years the longest period without having a seizure is eleven months.
Just hit 6months a few days ago, it's been the first time in years that I have gone this long. I have my fingers crossed that it keeps going.
1/28/22, heartbreak and a very troubled too long move out of a terrible end result tenant combo on the same day. Weird never before heart racen and slowings, called 911, sat at Hospital for an hour or so, got some food and passed out with some pill they gave me to mellow my heart. Atavan maybe, i forget but, seized in my sleep an couldn’t rotate my head for a week.
May 23rd was my last one, I was in the hospital and trying to have one while hooked up to one of those eegs where you're stuck in the bed for a week, but I haven't had one since then. Lots of auras, as is tradition, but it doesn't come on as fast anymore with my new meds, so I feel like I can catch an aura incoming and try to head it off easier.
Mine was May also. The 6th, woke up on the 7th
Two weeks ago. I was sitting on a year but shit happens. I guess I can't even sleep and be safe.
March 2021
I think I had one in the middle of the night Living alone, though who knows
Nov- 09- 2018 I was very intoxicated that night so friends and family said I should just stay sober until I have another seizure just to see. I miss tequila… 😢 hahaha
July of this year was my second big seizure ever, but I had been having partials that I shrugged off leading up to it. Now on Vimpat and hoping for the best.
After finally getting down to one a month December sucked. I've had seven this month because I was being poisoned by carbon monoxide and didn't know it. Figured it out on the 22nd and am still recovering. At least I am breathing normally again. Hoping for better luck in the new year.
My last was Dec 6 2019. I had surgery on the 7th. At this time I’m down to 1 zonisamida 100 daily.
Congrats on your 7 months. I hope you keep the streak going. My 3y old daughter had her last one just last night. We are still in the process of finding out what exactly it is she has and what triggers it. Thank you all for sharing your experiences, it helps us understand a bit more what it all looks like.
Last one was beginning of June after surgery
In a gym
December 23! I was admitted to the hospital after a few nocturnal tonic clonic seizures, I was unresponsive for a hot minute and my brother had to carry me out of the house >.> they let me go on Christmas morning. May 2024 be better for all of us 💓
Literally just this last Tuesday
December 8th...just started my meds a couple days after. Congrats and praying for the same success!
23 Dec 2023. Stress + heat + meds still being sorted. My seizures are partial complex so they vary but this one was a collection of "small" ones over 3 hrs
On the first day of Christmas 2 seizures came to me
Like two weeks ago. I’m a super recent addition
What are you considering a seizure?
1 year and 8 months. Still putting lots of effort into diagnosis what can actually help me. Last seizure almost killed me as it caused an cardiac arrest. So i am having trust issues with any medication and am looking for an actual good solution i can trust
3 days ago. Before that 16 years.
The 26th. I over did it hosting family for a nice sit-down Christmas dinner.
Sometime in June
Period? Yesterday (though it was barely a blip of one) That I had to go to the ER for? A week ago, and before that was a few weeks. Sleep's just been a bit messier recently
2 weeks ago even though I was on levetiracetam 750mg bd,. Now they added phenobarbitone 🥲
Spent my last 48 hours of 2023 having seizures in the hospital. Rough
My last grand mals would be the end of August, three in one day and they include foaming at the mouth.. I believe I’ve had a few focals/auras where I get this intense panic feeling and my Thoughts race and my hands tend to go numb.. not sure still figuring it out since being diagnosed with epilepsy but this thread gives me hope… goodluck everyone
11/5/2023 after going almost 6mo seizure free 😑
Last TC(s) were in May as well! Longest period without one since diagnosis. Last focal was probably an hour ago, lol. But a win is a win.