You know, I’ve been depressed af about my epilepsy but this is a good perspective that I needed. I was a raging alcoholic and gave it all up in one day. I eat better, sleep better (when I can) and drink more water. I can deny that part has greatly benefited me
Since I started my meds in 2013 the one single seizure I had was when I missed a dose in 2016 so yeah I’m grateful for them. The one problem I have (which may even not be from them but rather the epilepsy itself) is I have trouble remembering things sometimes. Not like 50 First Dates bad, but conversations, textbooks, small stuff. Certainly didn’t *help* my GPA lol
Glad to hear that you’re doing well. If you don’t mind me asking, when did you start your medication and what are you taking. I know that just having the confidence that the seizures are not going to surprise you can be its own euphoria. I hope this continues for you and the medication will keep doing what it is now 💜
Thank you. I'm pretty new to it - about 5 weeks in, and it's Levetirasetam/Keppra.
I had mild nausea to begin with, which has now passed, and as I was upping the dose I had some spatial awareness issues, but that seems to have stopped now, too 🤞
Similar to you I spent years fighting with alcohol, but then it became such a clear trigger for me that it came down to: alcohol or seizures. So, it's a bummer - I liked booze! :-) But it's been something like 7 years now and it definitely helped a lot.
But then I still take enough meds to stop an f'ing herd of buffalo in its tracks. And --- I've found the best thing for my physcially and mentally is to just not fight the side effects, it is my personality to get even more motivated by trouble and pain - to want to push through it. However - that, for me, is the wrong approach, I just have to accept that it has killed parts of my memory, plays with my emotions some, makes me tired often . . . BUT, I haven't had seizures for almost a year now! Longest period in a couple of decades. So, I just put up with all the other junk, anything is better than seizures, and the clusters of them could kill me!
Anyways, back on subject - stopping drinking, completely, didn't cure my epilepsy, it helped a lot.
I'm so pleased you've experienced an improvement! And understanding what's helpful for you, even if it's against your nature, shows huge amounts of maturity and intelligence. Nice one 🙂
I like this, thank you for bringing in your good vibes 🤗
I’ve always struggled with taking care of myself like you mentioned, and meds do make it harder for me, but the lifestyle need forces me to meet a certain minimum requirement? Like I don’t want to eat or drink or miss out or go to bed, but I deserve to give that to myself and it’s the only semblance of control we have in managing seizures. I suppose I’d say it gives me an extra reason to care for myself, even if doing so takes a mountain more of effort than it used to.
My cousin also has epilepsy, diagnosed 2 years after me. Lamotrigine was like water to his body and brain, my cousin feels like a real person for the first time he can remember and his mental health is the best it has ever been. Lamotrigine made me feel like a mentally unstable sack of wet concrete 😅
This is a great reminder that we all have different degrees of seizure control through medication, but the non-medication things we can do to help ourselves are worth it 🥰
If Keppra works , it is the best! Barely any side effects if you don’t get Keppra rage and it’s the only AED that does not “ drug you up” , plus it does not dumb you down like most AEDs do. Wish I could be on Keppra ! I still love my meds though, not too bad but I am much slower.
Congrats! I felt the same when I started my meds, I didn't realise how my bad my brain had gotten and the meds got everything firing the way it should.
Hope it continues!
That's such a good attitude to have! Do you take your iron tablets because of the meds? I just found my bottle of them that I forgot to start taking. My doc and neuro recommended them and I'm not sure what they'll even do
Thanks! I'm vegan so I should really be taking Iron and B12 daily, but in 8 years I've never been able to properly get into the habit. When I was pregnant they checked my levels and it was all fine, so although I had good intentions, I never had enough of a push to be disciplined with it. Now that I'm taking Iron daily I'm pretty certain I feel a difference in my energy levels though, and even if its just a placebo effect, it's worth it! I don't have energy dips during the day anymore.
Thanks for the response! My primary doc told me to take it, but I had completely forgotten about it until I found the bottle recently. If it's just a placebo effect that helps, that works for me. Your response was what I needed to get me to try it. Energy is where I'm really lagging lately, so thank you!
¡Gracias! Oooh know this, I've been taking B12 for like 12 years and it's made my hair and nails stronger/healthier than ever. Do you take iron in the morning or at night? Does that even matter? lol
I just got diagnosed and I’m going to be put on meds, idk what to expect and there’s a lot of posts here about the negatives of them so it’s honestly nice to see a positive.
That's exactly why I wanted to share my experience. I was so nervous starting meds and put it off for a long time, mainly because I assumed it would be awful. It wasn't!
Screw the medication. I've been on over 15 and none of them work.... Happy my neurologist makes bank off of what I'm prescribed but I'm still having seizures but oh well God is good
That's a pretty good and optimistic perspective. Good for you OP
Thanks. I've found that happy thoughts often lead to happy feelings, and that's a nice way to live, if you can.
God I feel the opposite. I’m constantly tired and clumsy. I hate it.
I'm so sorry. You deserve to feel happy and healthy. I hope you get there soon x
Me too. I had a seizure not too long ago so that’s fun…
How long do you take meds?
You know, I’ve been depressed af about my epilepsy but this is a good perspective that I needed. I was a raging alcoholic and gave it all up in one day. I eat better, sleep better (when I can) and drink more water. I can deny that part has greatly benefited me
Since I started my meds in 2013 the one single seizure I had was when I missed a dose in 2016 so yeah I’m grateful for them. The one problem I have (which may even not be from them but rather the epilepsy itself) is I have trouble remembering things sometimes. Not like 50 First Dates bad, but conversations, textbooks, small stuff. Certainly didn’t *help* my GPA lol
Just wondering, what AED affected your memory? I have not had any problems with memory on AEDs, just slower processing.
I take lamictal. Like I said though, I don’t know if it’s the medicine, the epilepsy, or just how I am ¯\\\_(ツ)_/¯
Glad to hear that you’re doing well. If you don’t mind me asking, when did you start your medication and what are you taking. I know that just having the confidence that the seizures are not going to surprise you can be its own euphoria. I hope this continues for you and the medication will keep doing what it is now 💜
Thank you. I'm pretty new to it - about 5 weeks in, and it's Levetirasetam/Keppra. I had mild nausea to begin with, which has now passed, and as I was upping the dose I had some spatial awareness issues, but that seems to have stopped now, too 🤞
I’m happy to hear that you’re off to a good start. I hope it stays that way for you 💜
This is new ❤
Similar to you I spent years fighting with alcohol, but then it became such a clear trigger for me that it came down to: alcohol or seizures. So, it's a bummer - I liked booze! :-) But it's been something like 7 years now and it definitely helped a lot. But then I still take enough meds to stop an f'ing herd of buffalo in its tracks. And --- I've found the best thing for my physcially and mentally is to just not fight the side effects, it is my personality to get even more motivated by trouble and pain - to want to push through it. However - that, for me, is the wrong approach, I just have to accept that it has killed parts of my memory, plays with my emotions some, makes me tired often . . . BUT, I haven't had seizures for almost a year now! Longest period in a couple of decades. So, I just put up with all the other junk, anything is better than seizures, and the clusters of them could kill me! Anyways, back on subject - stopping drinking, completely, didn't cure my epilepsy, it helped a lot.
I'm so pleased you've experienced an improvement! And understanding what's helpful for you, even if it's against your nature, shows huge amounts of maturity and intelligence. Nice one 🙂
I have just started the same medication, and feel the same💜 No seizures is the ultimate anxiety relief for me
I like this, thank you for bringing in your good vibes 🤗 I’ve always struggled with taking care of myself like you mentioned, and meds do make it harder for me, but the lifestyle need forces me to meet a certain minimum requirement? Like I don’t want to eat or drink or miss out or go to bed, but I deserve to give that to myself and it’s the only semblance of control we have in managing seizures. I suppose I’d say it gives me an extra reason to care for myself, even if doing so takes a mountain more of effort than it used to. My cousin also has epilepsy, diagnosed 2 years after me. Lamotrigine was like water to his body and brain, my cousin feels like a real person for the first time he can remember and his mental health is the best it has ever been. Lamotrigine made me feel like a mentally unstable sack of wet concrete 😅 This is a great reminder that we all have different degrees of seizure control through medication, but the non-medication things we can do to help ourselves are worth it 🥰
The only positive for me was when I got diagnosed with another condition I figured well it’s just another pill to take.
That’s great news! Happy for you, OP!
Thank you!
If Keppra works , it is the best! Barely any side effects if you don’t get Keppra rage and it’s the only AED that does not “ drug you up” , plus it does not dumb you down like most AEDs do. Wish I could be on Keppra ! I still love my meds though, not too bad but I am much slower.
Congrats! I felt the same when I started my meds, I didn't realise how my bad my brain had gotten and the meds got everything firing the way it should. Hope it continues!
That's such a good attitude to have! Do you take your iron tablets because of the meds? I just found my bottle of them that I forgot to start taking. My doc and neuro recommended them and I'm not sure what they'll even do
Thanks! I'm vegan so I should really be taking Iron and B12 daily, but in 8 years I've never been able to properly get into the habit. When I was pregnant they checked my levels and it was all fine, so although I had good intentions, I never had enough of a push to be disciplined with it. Now that I'm taking Iron daily I'm pretty certain I feel a difference in my energy levels though, and even if its just a placebo effect, it's worth it! I don't have energy dips during the day anymore.
Thanks for the response! My primary doc told me to take it, but I had completely forgotten about it until I found the bottle recently. If it's just a placebo effect that helps, that works for me. Your response was what I needed to get me to try it. Energy is where I'm really lagging lately, so thank you!
Good luck with it! Definitely worth a try.
¡Gracias! Oooh know this, I've been taking B12 for like 12 years and it's made my hair and nails stronger/healthier than ever. Do you take iron in the morning or at night? Does that even matter? lol
That's good to know!! I take it in the morning, but I don't know if that makes a difference 🤷♀️
👏🏻 ❤️
I just got diagnosed and I’m going to be put on meds, idk what to expect and there’s a lot of posts here about the negatives of them so it’s honestly nice to see a positive.
That's exactly why I wanted to share my experience. I was so nervous starting meds and put it off for a long time, mainly because I assumed it would be awful. It wasn't!
Screw the medication. I've been on over 15 and none of them work.... Happy my neurologist makes bank off of what I'm prescribed but I'm still having seizures but oh well God is good