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 15, 2023
In reply to @lyhay1973 "Thank you for your advice. The 1st and only doctor we have seen so far has..." + (show)
@lyhay1973

Thank you for your advice. The 1st and only doctor we have seen so far has been a neurologist. I wasn’t a fan of her to begin with. I just wasn’t happy with her demeanor and her quick response to dismiss any treatment she didn’t prescribe meds for. We did bring up the extreme fatigue we were just dismissed and said that’s okay it’s the only side effect you are having. My daughter has some anxiety nothing crazy was a gymnast we used CBD to help with the recovery of her extreme workout regimen, and it help with her anxiety especially during competition time. The doctor wanted us to stop using that, as she didn’t like it and wanted to put my daughter on more medications. My oldest daughter who is a nurse, met the 1st neurologist for my youngest daughter last appointment with her. We found the 1st neurologist wasn’t a very good at treating seizure disorders. She never ordered blood work ever not even after she put my daughter on medications. After her 2nd Seizure we found that the 500mg was too low as the ER ran blood work. I had to demand the Dr order follow up blood with to make sure the 750mg was in good range. At her last check up the neurologist didn’t want to run blood work again. Even though our primary care Dr said it should be done every 6 months. The neurologist told my daughter it wasn’t her job to order the blood work and monitor the range. My oldest daughter at that point told the Neurologist she was an ER Nurse and it was 100% her job to order blood work to watch the range of her patient she put on medication. The 2nd round of blood work was finally ordered only because we had to fight for that as well. It just hasn’t been a good process for us so far. We are thankful and happy my youngest daughter hasn’t had a seizure in over a year. We see a new neurologist in April and I would like to help my daughter with this fatigue she has and not feel like a zombie and struggle through college and work.

Jump to this post

Back in 2001 I started taking keepra along with the diazepam I started taking in 1995 and both worked great until 2006 when it all gave up. Needed brain surgery on my left hippocampus and have no seizures anymore though I still take Keppra, but with no side effects and I take 1750mg/day.

REPLY
Chris Gautier | @santosha | Mar 16, 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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Hi @smokry777

Great to know that after your brain surgery on your left hippocampus, you do not have seizures anymore and do tolerate well Keppra. I am very happy for you!!! I assume you also have temporal lobe epilepsy like me. I do also have a lesion on the left side of my hippocampus.
Would you mind sharing how you are feeling in cognitive terms after this surgery? How has it affected your memory? Was your surgery a traditional surgery opening the skull or a laser surgery (LITT)?
Thank you so much!
Santosha

REPLY
2 replies
smokry777 | @smokry777 | Mar 16, 2023
In reply to @santosha "Hi @smokry777 Great to know that after your brain surgery on your left hippocampus, you do..." + (show)
@santosha

Hi @smokry777

Great to know that after your brain surgery on your left hippocampus, you do not have seizures anymore and do tolerate well Keppra. I am very happy for you!!! I assume you also have temporal lobe epilepsy like me. I do also have a lesion on the left side of my hippocampus.
Would you mind sharing how you are feeling in cognitive terms after this surgery? How has it affected your memory? Was your surgery a traditional surgery opening the skull or a laser surgery (LITT)?
Thank you so much!
Santosha

Jump to this post

I haven't been better, ever. More organized and at ease than ever, less impulsive maybe. Cognitive wise no change, still into sciences. history etc. No affect on memory and I was the last traditional brain surgery for epilepsy at Jefferson in Philadelphia PA. The next was laser surgery in may/june 2006. If you need it, they know and can show you with an MRI, are great doctors and you trust them do it. You will never regret it. Good luck.

REPLY
Chris Gautier | @santosha | Mar 17, 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

Good Morning @smokry777
Thank you so much for sharing your experience with us!!!
One thing that I still do not understand well in such surgery, why does the patient still need to continue with his or her AED after the surgery as the lesion that caused the seizures is removed? Did the doctors tell you that you will be free of Keppra in some time?
Thank you again.
Have a nice day :-)!
Santosha

REPLY
1 reply
Chris Gautier | @santosha | Mar 17, 2023
In reply to @lyhay1973 "Thank you for your advice. The 1st and only doctor we have seen so far has..." + (show)
@lyhay1973

Thank you for your advice. The 1st and only doctor we have seen so far has been a neurologist. I wasn’t a fan of her to begin with. I just wasn’t happy with her demeanor and her quick response to dismiss any treatment she didn’t prescribe meds for. We did bring up the extreme fatigue we were just dismissed and said that’s okay it’s the only side effect you are having. My daughter has some anxiety nothing crazy was a gymnast we used CBD to help with the recovery of her extreme workout regimen, and it help with her anxiety especially during competition time. The doctor wanted us to stop using that, as she didn’t like it and wanted to put my daughter on more medications. My oldest daughter who is a nurse, met the 1st neurologist for my youngest daughter last appointment with her. We found the 1st neurologist wasn’t a very good at treating seizure disorders. She never ordered blood work ever not even after she put my daughter on medications. After her 2nd Seizure we found that the 500mg was too low as the ER ran blood work. I had to demand the Dr order follow up blood with to make sure the 750mg was in good range. At her last check up the neurologist didn’t want to run blood work again. Even though our primary care Dr said it should be done every 6 months. The neurologist told my daughter it wasn’t her job to order the blood work and monitor the range. My oldest daughter at that point told the Neurologist she was an ER Nurse and it was 100% her job to order blood work to watch the range of her patient she put on medication. The 2nd round of blood work was finally ordered only because we had to fight for that as well. It just hasn’t been a good process for us so far. We are thankful and happy my youngest daughter hasn’t had a seizure in over a year. We see a new neurologist in April and I would like to help my daughter with this fatigue she has and not feel like a zombie and struggle through college and work.

Jump to this post

Good Morning @lyhay1973
I am very happy to learn that you are seeing a new neurologist this coming April! I can very well understand your feelings!
Based on my experience in the treatment of my epilepsy (temporal lobe), I have felt that many doctors I have seen have treated more the disease and less the patient. The answer you got from your current neurologist, I also got from many doctors I have visited. The first doctor who diagnosed my epilepsy prescribed Lamictal which gave me severe insomnia. When I told him about this side effect, he said to hold on and continue with my professional routine. I got in complete despair and he finally accepted to change the medication after 3 months of severe insomnia. Other doctors I have visited after this one, also had the same attitude. Finally, in 2021 I got the recommendation of my current epileptologist who treats me as a patient and respects me as a human being. As I have already mentioned in another post, I have felt a great difference in the treatment of my epileptologist compared to the neurologists I have seen before him. Being treated by an epileptologist has made a great difference.
My epileptologist asks me for blood exams once every 6 months. For sure it is part of a doctor's job in the treatment of epilepsy.
There is a very nice movie with Meryl Streep that tells the true story of a mother's struggle against a narrow-minded doctor who treats her boy with epilepsy. It is called "First Do no Harm". It is available on YouTube for free, very worth watching it. Here is the link: https://www.youtube.com/watch?v=xY9ZMGK5Hbs&t=13s.
Stay Strong!
Santosha

REPLY
1 reply
smokry777 | @smokry777 | Mar 17, 2023
In reply to @santosha "Good Morning @smokry777 Thank you so much for sharing your experience with us!!! One thing that..." + (show)
@santosha

Good Morning @smokry777
Thank you so much for sharing your experience with us!!!
One thing that I still do not understand well in such surgery, why does the patient still need to continue with his or her AED after the surgery as the lesion that caused the seizures is removed? Did the doctors tell you that you will be free of Keppra in some time?
Thank you again.
Have a nice day :-)!
Santosha

Jump to this post

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.

REPLY
1 reply
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)
@santosha

Hi @smokry777

Great to know that after your brain surgery on your left hippocampus, you do not have seizures anymore and do tolerate well Keppra. I am very happy for you!!! I assume you also have temporal lobe epilepsy like me. I do also have a lesion on the left side of my hippocampus.
Would you mind sharing how you are feeling in cognitive terms after this surgery? How has it affected your memory? Was your surgery a traditional surgery opening the skull or a laser surgery (LITT)?
Thank you so much!
Santosha

Jump to this post

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.

REPLY
1 reply
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)
@santosha

Good Morning @lyhay1973
I am very happy to learn that you are seeing a new neurologist this coming April! I can very well understand your feelings!
Based on my experience in the treatment of my epilepsy (temporal lobe), I have felt that many doctors I have seen have treated more the disease and less the patient. The answer you got from your current neurologist, I also got from many doctors I have visited. The first doctor who diagnosed my epilepsy prescribed Lamictal which gave me severe insomnia. When I told him about this side effect, he said to hold on and continue with my professional routine. I got in complete despair and he finally accepted to change the medication after 3 months of severe insomnia. Other doctors I have visited after this one, also had the same attitude. Finally, in 2021 I got the recommendation of my current epileptologist who treats me as a patient and respects me as a human being. As I have already mentioned in another post, I have felt a great difference in the treatment of my epileptologist compared to the neurologists I have seen before him. Being treated by an epileptologist has made a great difference.
My epileptologist asks me for blood exams once every 6 months. For sure it is part of a doctor's job in the treatment of epilepsy.
There is a very nice movie with Meryl Streep that tells the true story of a mother's struggle against a narrow-minded doctor who treats her boy with epilepsy. It is called "First Do no Harm". It is available on YouTube for free, very worth watching it. Here is the link: https://www.youtube.com/watch?v=xY9ZMGK5Hbs&t=13s.
Stay Strong!
Santosha

Jump to this post

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.

REPLY
1 reply
Chris Gautier | @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

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.

Jump to this post

@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.

REPLY
Chris Gautier | @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)
@smokry777

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.

Jump to this post

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

REPLY
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