Help with side effects of Keppra

Posted by lyhay1973 @lyhay1973, Mar 14, 2023

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 you
Lisa

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smokry777 | @smokry777 | Mar 17, 2023

In reply to @santosha "Hi @smokry777 Great to know that after your brain surgery on your left hippocampus, you do..." + (show)

Memory is unchanged. They didn't remove all of my left hippocampus just what was what I call unshaped and almost dead, get an MRI and you will see your problem and if surgey is right for you. Laser hadn't started yet, but it did about 2 months latter in 2006, after me. Good luck and if you have good Dr's you will be fine.

lyhay1973 | @lyhay1973 | Mar 18, 2023

In reply to @santosha "Good Morning @lyhay1973 I am very happy to learn that you are seeing a new neurologist..." + (show)

Good morning Santosha,
Thank you for the information. I wish doctors would listen more to the patients who are actually experiencing the side effects and not brush them off. I have talked to my daughter about being open to maybe changing medication. Right now she is not exactly on board with that. We are hoping this new Neurologist is better. He was recommended by my oldest daughter who saw him for headaches she was having, and issue with an optic nerve that was discovered. Plus this new Neurologist is closer to where my youngest is currently going to college which I think will be helpful. I will also look into epileptologist if we don’t feel good about this new doctor.

Chris Gautier OR Santosha | @santosha | Mar 19, 2023

In reply to @lyhay1973 "Good morning Santosha, Thank you for the information. I wish doctors would listen more to the..." + (show)

@lyhay1973
I agree very when you said "I wish doctors would listen more to the patients who are actually experiencing the side effects and not brush them off" :-). Unfortunately, many do not do it. This is also shown in the movie First Do no Harm with Mery Streep.
I hope all goes well with this neurologist. That you find a doctor who listens and respects both of you. My best wishes for this appointment in April. Give us news after that, please.
Have a beautiful Sunday!
Santosha
PS: Let the neurologist convince your daughter about changing the medication.

Chris Gautier OR Santosha | @santosha | Mar 19, 2023

In reply to @smokry777 "Memory is unchanged. They didn't remove all of my left hippocampus just what was what I..." + (show)

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

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)

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

Chris Gautier OR Santosha | @santosha | Mar 19, 2023

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

nicole4success | @nicole4success | Mar 20, 2023

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.

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)

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

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Chris Gautier OR Santosha | @santosha | Mar 21, 2023

In reply to @smokry777 "Thanks for the like. Have a ? for you. How old were you when you had..." + (show)

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

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
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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