My daughter had a AVM bleed in October 2012, craniotomy in Feb 2013. She is now on Keppra 2000mg twice a day. She had been seizure free for 9 months, but had another one (general, but not GM)in December 2013. The neurologist is thinking of adding Vimpat to the Keppra.
She will be 20 this year, and her issues are mainly short-term memory problems, expressive aphasia. Thankfully, she has no motor issues! The Keppra has definitely made her moodier, irritable, and tires more easily.
Does anyone have information and/or advice regarding 'combination' anti-seizure meds? I know everyone is different, and only time will tell, but I am doing my research! I am most interested in discussing with someone that is familiar with the Keppra/Vimpat combination
(Note: I originally posted this as a reply to an older Discussion thread)
Have you heard of kepprage. Nicknamed for a good reason. My son was on 1250mg but he was like a zombie, so drugged up he didn't converse. We fought to get them reduced. He was so much better after the reduction.
It also effected his liver function.
Yes everyones different but its worth checking if moodiness is related to keppra.
Thank you for responding! I had not heard of liver related issues, but that is why I am asking. Did your son have tests regarding liver function over the time he was on Keppra? They have not mentioned any blood tests, etc. for my daughter. As for the moodiness, she has leveled off. When she first started on the Keppra, it was a clear change, but it never got worse. We have heard many stories of people having real issues with Keppra. Thankfully we have not seen 'rage' behavior.
BTW, how wonderful of you to continue with advice to others after your son's passing. I read your posts. When my daughter had her bleed, she was miles away at college, and we were simply told that she would need emergency brain surgery. All sorts of things went through our minds. It turns out she did not get surgery until months later. Now, it's almost a year after the surgery, and she is doing well, but still has the struggles I mentioned.
Is your daughter being seen by an epileptologist…a seizure specialist? Or just a neurologist? Every neurologist claims to be an expert in seizures but that is not true. Epileptologist goes for extra training and schooling is this area.
I cant stop researching, Its my way of proving that Mark didn't get the right treatment and all his symptoms were ignored. I feel for people still going through that nightmare and just hope and prayer you don't have to suffer mine. Mark had a blood test that showed raised LFT.
The more the keppra was increased the more detached he became yet the epilepsy nurse insisted he needed the highter dose.
I did some research and discovered others who had raised LFTs on keppra and some whose neuro had automatically administered vitamins to balance effect on liver.
Also the manufacturer of keppra admit some cases of patients with althered LFTs.
I printed the information off and gave her to read which convinced her to reduce the keppra and replace with lamotrigine.
Mark was once again able to communicate normally.
Whilst it did not solve the issues that related to the initial increase in meds, it proved that all the keppra was doing was hiding what was really going on.
A month later it was discovered Mark was suffering a bleed, as we had stated for over 4 months. Its no good just increasing meds without thorough examination.
For two years Mark had not seen his neuro, he was monitored entirely by his epilepsy nurse and see clearly was not qualified to deal with what was happening. We repeatedly requested a meeting with his nuero but they just would not listen.