1. < Epilepsy & Seizures

Does anyone know if intense keppra side effects are normal?

Posted by annabcd @annabcd, Mar 6, 2023

This is about my husband. He started having seizure like episodes four months ago once or twice a month that lasted 5-20 minutes. After trying to convince doctors these weren't anxiety attacks they did an EEG which was interrupted by a seizure like episode. They immediately got him on Keppra without confirming epilepsy and since then he's been completely out of it, has memory loss, slurs his speech, uneven pupils sometimes and others he smells something burning, cough, panic, sees flashing lights and colors,loses contact with the environment and more. He has stopped taking it since Saturday morning and he's much more conscious but still had episodes mostly with his head hurting, panic, burning smell and getting super sleepy when this happens. Memory is getting better.

Does anyone know if all of these are normal as far as bad side effects of keppra go and if so when they will go away?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

smokry777 | @smokry777 | Mar 19, 2023
In reply to @santosha "Hi @smokry777, Good Morning Thank you so much for your posts, experiences, and information you have..." + (show)
@santosha

Hi @smokry777, Good Morning
Thank you so much for your posts, experiences, and information you have shared here with us! Very valuable!!! Again, I am very happy and glad for you and about your current health state. Did you already take Keppra before your surgery? Did you tolerate it well and other medications before the surgery or has the surgery helped you to better tolerate those medications?
Does anymore know why one has still to take AEDs after such surgery, as the lesion that causes the seizure is removed? This is still something I do not understand well.
Thanks to all of you.
Wishing you a beautiful Sunday!
Santosha

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Morning santosha. Started Keppra in late 2000 or early 2001. It had just become legal and was very expensive. I was also taking diazepam. That had become legal around 1995, prior it was used only in hospitals. Operation was April 2006. The amount prior to operation was 1750mg/day after 3000mg/day and no diazepam. Toleration was the same before and after, only at 3000mg/day I could just fall asleep for a few minutes but I knew it was coming. Like I said before am at 1750mg/day today. About the brain, just remember that it is never perfect, what is? If your Dr wants you to maintain dosage do it. Your brain has to heal after operation and that takes time! If your Dr wants/thinks an operation is right for you do your research, ask questions and when you are satisfied do it. What we have learned about the brain in the last 40 years is more than all the years prior combined. Good luck, you will find your answers, just do the research.
Brad

REPLY
1 reply
Chris Gautier | @santosha | Mar 19, 2023
In reply to @lyhay1973 "Hello, I am wondering if anyone has any suggestions on how to help deal with side..." + (show)
@lyhay1973

Hello, I am wondering if anyone has any suggestions on how to help deal with side effects of Keppra? My daughter was diagnosed with seizure disorder over a year ago. She was put on Keppra at 500mg twice a day. 4 months later she had another seizure the doctors upped her to 750mg twice a day. Since then she has been seizure free for over a year now. But she has been battling fatigue due to the medication. Some days are better than others, she said at times she feels like a zombie. I’m just wondering if anyone has experience this and if there was a way to counter act the side effect.Thank youLisa

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Good Evening @smokry777
Thank you so much again for the information you have shared with us.
I wish you a nice week!
Santosha

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nicole4success | @nicole4success | Mar 20, 2023
In reply to @lyhay1973 "Hello, I am wondering if anyone has any suggestions on how to help deal with side..." + (show)
@lyhay1973

Hello, I am wondering if anyone has any suggestions on how to help deal with side effects of Keppra? My daughter was diagnosed with seizure disorder over a year ago. She was put on Keppra at 500mg twice a day. 4 months later she had another seizure the doctors upped her to 750mg twice a day. Since then she has been seizure free for over a year now. But she has been battling fatigue due to the medication. Some days are better than others, she said at times she feels like a zombie. I’m just wondering if anyone has experience this and if there was a way to counter act the side effect.Thank youLisa

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May not be the right med for her. I would call the doctor. I personally didn't have an issue with Keppra but I have with others. Everyone is different. Side effects sometimes go away after a short time. Just talk to the doc first and she will have to he weened down slowly and maybe start another medication. I hope she feels better.

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smokry777 | @smokry777 | Mar 20, 2023
In reply to @smokry777 "Morning santosha. Started Keppra in late 2000 or early 2001. It had just become legal and..." + (show)
@smokry777

Morning santosha. Started Keppra in late 2000 or early 2001. It had just become legal and was very expensive. I was also taking diazepam. That had become legal around 1995, prior it was used only in hospitals. Operation was April 2006. The amount prior to operation was 1750mg/day after 3000mg/day and no diazepam. Toleration was the same before and after, only at 3000mg/day I could just fall asleep for a few minutes but I knew it was coming. Like I said before am at 1750mg/day today. About the brain, just remember that it is never perfect, what is? If your Dr wants you to maintain dosage do it. Your brain has to heal after operation and that takes time! If your Dr wants/thinks an operation is right for you do your research, ask questions and when you are satisfied do it. What we have learned about the brain in the last 40 years is more than all the years prior combined. Good luck, you will find your answers, just do the research.
Brad

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Thanks for the like. Have a ? for you. How old were you when you had your first seizure and was it simple or complex? I know a lot of people have seizures that don’t always have the same point of origin like mine did. I was 55 when I had my operation.
Brad

Sent from Mail for Windows

REPLY
1 reply
Chris Gautier | @santosha | Mar 21, 2023
In reply to @smokry777 "Thanks for the like. Have a ? for you. How old were you when you had..." + (show)
@smokry777

Thanks for the like. Have a ? for you. How old were you when you had your first seizure and was it simple or complex? I know a lot of people have seizures that don’t always have the same point of origin like mine did. I was 55 when I had my operation.
Brad

Sent from Mail for Windows

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Hi Brad,
I had my first seizure when I was a teenager, 13/14 years old, I can not remember well, it is so long ago (I am 52 years old right now). I had very few seizures, about 3 per year, they started as simple and evolve into complex, but were very mild ones. Right after a seizure that lasted just seconds, I was back as if nothing had happened. I lived this way without knowing I had epilepsy until I was 46/47 years old (2016/2017) when things started to change because of a period of much stress and then burnout. First, I had changes in my sleep and memory, followed by an increase in my seizures and more time to recover. But it took two more years to be diagnosed with epilepsy (temporal lobe), which happened in February 2019. My epilepsy most probably is related to an accident I had when I was 5 years old that caused a small lesion on my hippocampus, left side, staying my epilepsy in a latent phase until I became a teenager when this condition first manifested itself. It stayed quite silent for so many years, having evolved because of this burnout I had.
If you have any other questions, feel free to ask me.
Have a nice evening!
Santosha

REPLY
1 reply
smokry777 | @smokry777 | Mar 21, 2023
In reply to @santosha "Hi Brad, I had my first seizure when I was a teenager, 13/14 years old, I..." + (show)
@santosha

Hi Brad,
I had my first seizure when I was a teenager, 13/14 years old, I can not remember well, it is so long ago (I am 52 years old right now). I had very few seizures, about 3 per year, they started as simple and evolve into complex, but were very mild ones. Right after a seizure that lasted just seconds, I was back as if nothing had happened. I lived this way without knowing I had epilepsy until I was 46/47 years old (2016/2017) when things started to change because of a period of much stress and then burnout. First, I had changes in my sleep and memory, followed by an increase in my seizures and more time to recover. But it took two more years to be diagnosed with epilepsy (temporal lobe), which happened in February 2019. My epilepsy most probably is related to an accident I had when I was 5 years old that caused a small lesion on my hippocampus, left side, staying my epilepsy in a latent phase until I became a teenager when this condition first manifested itself. It stayed quite silent for so many years, having evolved because of this burnout I had.
If you have any other questions, feel free to ask me.
Have a nice evening!
Santosha

Jump to this post

Santosha
Had my first aura when I was 8 almost 9 years old. I was getting dressed for school and I saw a cartoon on the TV, only the TV we had was not in my room, so what my mind was telling me was happening wasn't real. Went to the Dr and found out what I had and that he wasn't going to prescribe me anything then because the brain is still growing. Also there were very few meds at that time. I didn't then very often either. Never affected my school, sports, college or professional life, even after my operation and didn't retire until I was 67. Just hope you can find a great solution. Good luck and thanks for the feed back.

REPLY
1 reply
Chris Gautier | @santosha | Mar 21, 2023
In reply to @smokry777 "Santosha Had my first aura when I was 8 almost 9 years old. I was getting..." + (show)
@smokry777

Santosha
Had my first aura when I was 8 almost 9 years old. I was getting dressed for school and I saw a cartoon on the TV, only the TV we had was not in my room, so what my mind was telling me was happening wasn't real. Went to the Dr and found out what I had and that he wasn't going to prescribe me anything then because the brain is still growing. Also there were very few meds at that time. I didn't then very often either. Never affected my school, sports, college or professional life, even after my operation and didn't retire until I was 67. Just hope you can find a great solution. Good luck and thanks for the feed back.

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Thank you for your kind words @smokry777
My first experience with seizures was the same as yours. I always said to my mother when the aura came that started that the movie was about to start, feeling some weird smell and taste in my mouth. As you said this movie was only in my mind.
I am very happy to hear that it has never affected your studies, professional life and sports. Fingers crossed to continue this way!!!!
I did my studies, had a professional corp life and practiced many sports, some of them even professionally (like sailing). But in 2016/2017, things started to change. But I must confess, I have abused, I was quite a workaholic at that time. I hope to be back to work one day. Going back to my previous professional activity I feel is no longer possible, because it requires much of my memory which has been affected. But I see other possibilities and I am about to start some studies this coming April to be able to do this career change. Enjoying it 🙂
Let's keep in touch!
Santosha (BTW Santosha means contentment, my real name is Christine or just Chris)

REPLY
smokry777 | @smokry777 | Mar 21, 2023
In reply to @lyhay1973 "Hello, I am wondering if anyone has any suggestions on how to help deal with side..." + (show)
@lyhay1973

Hello, I am wondering if anyone has any suggestions on how to help deal with side effects of Keppra? My daughter was diagnosed with seizure disorder over a year ago. She was put on Keppra at 500mg twice a day. 4 months later she had another seizure the doctors upped her to 750mg twice a day. Since then she has been seizure free for over a year now. But she has been battling fatigue due to the medication. Some days are better than others, she said at times she feels like a zombie. I’m just wondering if anyone has experience this and if there was a way to counter act the side effect.Thank youLisa

Jump to this post

You get it and will continue on, just stay focused and remember what you are trying to accomplish. If you don't like the effects of a medication find something else. Just like your career change, enjoy it. Thumbs up for you.
Brad

REPLY
1 reply
Chris Gautier | @santosha | Mar 22, 2023
In reply to @smokry777 "You get it and will continue on, just stay focused and remember what you are trying..." + (show)
@smokry777

You get it and will continue on, just stay focused and remember what you are trying to accomplish. If you don't like the effects of a medication find something else. Just like your career change, enjoy it. Thumbs up for you.
Brad

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Thank you for those encouraging words, Brad!!!
As I have shared her with the group, my epilepsy has also brought positive experiences into my life. I have learned so much!!! Here is the link, in case you are interested.
https://connect.mayoclinic.org/discussion/positive-experiences-through-epilepsy/
Have a good day!
Santosha

REPLY
chercairns | @chercairns | Mar 26, 2023
In reply to @smokry777 "Great question. After surgery they had me at 3000mg/day and said I would be taking it..." + (show)
@smokry777

Great question. After surgery they had me at 3000mg/day and said I would be taking it for the rest of my life. After a year we started to decrease my dosage. It takes awhile to go lower, about 8weeks at 250mg per drop. If I remember correctly it takes about 4 weeks to be out of your system. Then you have to stay free of seizures. It takes time to find the right dosage level you can tolerate, a total withdrawal 1-2-3 just because you think you can, is not a safe way. Your body doesn't work that way. Everyone is different and if you are lucky maybe you can get completely off, time will tell. Listen to your Dr. Your second question, yes. Fine with me, I don't have seizures anymore.

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@smokry777 can you tell me if Keppra made you have highs and lows to the extreme? My sister started to take it because she had one seizure in 28 years. I really don’t think she needs it. Was on 500 mg I finally convinced her Dr to lower it in have. One minute she’s as happy as can be the next very irritated. She’s mentally delayed so hard for her to explain what she feels like. She also has been forgetting things which was one thing about her was her great memory. I don’t know how to sign up on here. Maybe you could help me. My name is Cher Cairns thank you 😊

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