Help with side effects of Keppra

I had to try another med (Vimpat generic) instead of Keppra. I simply could not function with the fatigue. The term “zombie” accurately describes how I felt. It is strange how different meds affect people differently, but the Keppra just wasn’t for me. I know changing meds can make someone apprehensive, but talk to physician and discuss this. Good bless and I pray your daughter finds help.

Thank you for your advice, yes she is a lot apprehensive about changing meds. She has gone a year with no seizures so she doesn’t want to move backwards and start all over again. She has an appointment with a new doctor in early April

Hi @lyhay1973
The process of getting the medication that best fits your daughter is a fine-tuned process that might require some patience and time. I had experienced 5 AED medications before finding the one that is the best for me and my epilepsy. As @baa has well mentioned, changing medications might get us apprehensive, but better to try other medications than to live with this "zombie" side-effect (BTW, I had this with Vimpat, everyone reacts differently to those medications). Ah one important thing, the doctor that has finally found a medication that best suits me is nowadays my epileptologist. I have observed a great difference in the treatment of my epilepsy by an epileptologist versus a neurologist.
All the best to your daughter!
Santosha

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.

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.

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

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.

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

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

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.