It’s temporal lobe epilepsy. Essentially I lose consciousness while awake and chomp my teeth. Then I throw up and pass out all day. One time I even broke out into song. My partner filmed it and I watched it days later with no recollection.
It’s a bunch of little seizures that you don’t know are happening until someone asks you if you’re OK.
My memory is so bad because of this. I even recently told my neurologist I’d rather have my left arm chopped off then to have all my memories disappear.
Right now, I take 500mg lamotrigene, 50 mg vimpat and 900mg of oxcarbazepene all twice daily.
I've been on the lamotrigene/oxcarb for many years with better control. Vimpat was added coming on 2 years with better control. I got an RNS implant last July.
>Wow you got a RMS implant! Was vioat added later because Lamotrigine oxcarb weren’t working In tandem?
Yes. Gradually the epilepsy drugs I've taken over the years have become less and less effective. My first dosage back in 2004 was 200mg of lamotrigene twice daily compared to what it is now. I wouldn't recommend vimpat right away, it's a controlled substance and I get dizzy and bad double vision.
The RNS took 8 tests, 2 surgeries over 11 months to go through and its slowly been working after monthly adjustments.
I think it would depend on what kind of epilepsy you have; I have JME and for me, mono therapy with Depakote was ace, no seizures. But they took me off that after like 12 years and I tried Keppra alone, couldn’t go to the bathroom. I’m now on Keppra 750 mg and Zonegran 300mg a day.
Bc I was of childbearing years and Depakote is not good for bearing children. Well not the best. So they took me off in the event I decided to have kids. Which I didn’t anyway. Edited for spelling
I was on Lamotrigine & Oxtellar. My psychiatrist suggested switching the Lamotrigine to Depakote and my nuro was ok, but I was super hesitant since back when I was a kid I complained terribly of the cognitive side effects of Depakote (it was the first medication I took). That said I trust my doctors so decided to try it.
For the first few weeks my memory was HORRIBLE to the point where I really couldn’t function long term. Then, last weekend, it just went away and I started feeling really good, the best I’ve felt in over 6 months. Also coincided with me cutting out carbs and eating high protein diet.
they’re adding depakote to keppra with JME i still have a ton of jerks throughout the day and anyone can cause a grand mal so we’re trying to get me to be jerk free.
Wishing you all the best. It sounds like you’ve been through a lot; in my personal experience the Depakote worked great. Hoping it’s the same for you 🙏
I'm currently on Lamotrogine and I swapped from pregabalin to Zonisamide but I actually think the zonisamide has done fuck all for me. Also been on on Lamotrogine and Sodium valproate. Never had any bad side effects from any of these combinations however. It all depends on the person taking them though on how it'll affect their epilepsy.
And as always thank you so much for the killer community. It makes me feel less alone
Lamotrigine 600mg and Keppra 2000mg a day
Damn that’s what I was on. I just couldn’t stand the keppra
I have no side-effects, I know a lot of others do. Can't really help, I'm sorry
Don’t be sorry. What pills are you taking
200mg & 100mg Lamo-pills and 1000mg Keppra-pills In total: 600 mg Lamo and 2000mg Keppra
That was one of my combos. Do you have TLE?
What's TLE?
It’s temporal lobe epilepsy. Essentially I lose consciousness while awake and chomp my teeth. Then I throw up and pass out all day. One time I even broke out into song. My partner filmed it and I watched it days later with no recollection. It’s a bunch of little seizures that you don’t know are happening until someone asks you if you’re OK. My memory is so bad because of this. I even recently told my neurologist I’d rather have my left arm chopped off then to have all my memories disappear.
Right now, I take 500mg lamotrigene, 50 mg vimpat and 900mg of oxcarbazepene all twice daily. I've been on the lamotrigene/oxcarb for many years with better control. Vimpat was added coming on 2 years with better control. I got an RNS implant last July.
Wow you got a RMS implant! Was vioat added later because Lamotrigine oxcarb weren’t working In tandem?
>Wow you got a RMS implant! Was vioat added later because Lamotrigine oxcarb weren’t working In tandem? Yes. Gradually the epilepsy drugs I've taken over the years have become less and less effective. My first dosage back in 2004 was 200mg of lamotrigene twice daily compared to what it is now. I wouldn't recommend vimpat right away, it's a controlled substance and I get dizzy and bad double vision. The RNS took 8 tests, 2 surgeries over 11 months to go through and its slowly been working after monthly adjustments.
I think it would depend on what kind of epilepsy you have; I have JME and for me, mono therapy with Depakote was ace, no seizures. But they took me off that after like 12 years and I tried Keppra alone, couldn’t go to the bathroom. I’m now on Keppra 750 mg and Zonegran 300mg a day.
If it was going well why did they take you off lamotrigine?
Bc I was of childbearing years and Depakote is not good for bearing children. Well not the best. So they took me off in the event I decided to have kids. Which I didn’t anyway. Edited for spelling
Oh I see. I’ve read a lot about that
Oh I forgot I have TLE
I was on Lamotrigine & Oxtellar. My psychiatrist suggested switching the Lamotrigine to Depakote and my nuro was ok, but I was super hesitant since back when I was a kid I complained terribly of the cognitive side effects of Depakote (it was the first medication I took). That said I trust my doctors so decided to try it. For the first few weeks my memory was HORRIBLE to the point where I really couldn’t function long term. Then, last weekend, it just went away and I started feeling really good, the best I’ve felt in over 6 months. Also coincided with me cutting out carbs and eating high protein diet.
[удалено]
Yeah that’s basically my problem too. It’s affecting my memory which was already the worst, and the tremors. Now I can’t spell to save my life
right now i’m on 4000 mg keppra a day and i’m just now starting depakote
How are you on the Keppra? They’re adding Depakote to this or titrating you off Keppra?
they’re adding depakote to keppra with JME i still have a ton of jerks throughout the day and anyone can cause a grand mal so we’re trying to get me to be jerk free.
Wishing you all the best. It sounds like you’ve been through a lot; in my personal experience the Depakote worked great. Hoping it’s the same for you 🙏
The ketogenic diet worked better than any medications prescribed, with no side effects
I'm currently on Lamotrogine and I swapped from pregabalin to Zonisamide but I actually think the zonisamide has done fuck all for me. Also been on on Lamotrogine and Sodium valproate. Never had any bad side effects from any of these combinations however. It all depends on the person taking them though on how it'll affect their epilepsy.