Help with side effects of Keppra

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

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

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.

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.

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

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

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

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