Temporal lobe seizures

Hi @avaaaaaaaaa
I can well understand you as I also have temporal lobe epilepsy (left side with mesial sclerosis) and went through similar situations in 2019 and 2020.
I was diagnosed with epilepsy in 2019 and started with medications which have brought me terrible side-effects. I also became very depressed, especially while taking Tegretol (carbamazepine). The medications have also affected my memory and I got very distressed with that. The neuroassessment I did in 2019 clearly showed the decline of my memory.
But thankfully, with the great help of my neuropsychologist and also the changes of doctors, being finally treated by an epileptologist, I could overcome it. Being treated by an epileptologist instead of just a neurologist has made a huge difference: medications were changed and individualized. Every human being is unique, what works for a patient does not necessarily work for another. If a neurologist is treating you, please look for an epileptologist. Neurologists will rarely do an individualized treatment and a fine-tuning process with medications. The Epilepsy Foundation can help you find an epileptologist in your region, they have a great help line 24/7: https://www.epilepsy.com/247-helpline.
I also recommend having the support of a neuropsychologist or a psychologist. Without the help of my neuropsychologist, I would not have had the strength to overcome this terrible phase I went through and made the necessary changes to have a life with quality again. She did not only help me emotionally, but also helped me to overcome the challenges of my memory loss. I also mention my caring husband, who helped me in this fight of finding the correct doctor and treatment for my epilepsy.
I know at the moment, all seems so difficult for you. But do please not lose hope and look for the help of good professionals and family and friends who can help you.
If I can be of any other help, please do not hesitate to contact me.
Chris (@santosha)
PS: Yesterday I saw a beautiful and very inspiring movie called Shrikanth. It is based on a true story of a visually-impaired person, his challenges and how he overcame them. Here is the link to the trailer: https://www.youtube.com/watch?v=OMeuJP5iBWY

You are so sweet, thank you so much for taking your time to respond to me. I recently started seeing a epileptologist and I have a good feeling about it. I am currently taking zonisamide and when I went up to 200 mg I just slept all day and when I wasn’t sleeping I was like a walking depressed zombie. I have an appointment March 3 with my epileptologist so hopefully I can switch these meds and get put on a different one that works for me! Thank you again for your response!

My pleasure @avaaaaaaaaa !
Good to know you are now on epileptologist's hands!
Perhaps your doctor could try to reduce your dosage of zonisamide a little and see how you react on that? I started on Keppra 500 mg twice a day at the hospital (I was on a status epilepticus) last December and I am now on 150 mg twice a day. With that, some of the side-effects have already softened. My doctor has been doing a great fine-tuning process with this medication and with much care (every time before medication reduction he asks for an EEG with sleep deprivation), so as to arrive at a dosage that is ideal for me. Though many people complain about Keppra, it has been the least harmful to me up to now, perhaps because of this fine-tuning process which the neurologists I have seen in 2019 and 2020 have not done.
Wishing you a peaceful weekend!
Chris (@santosha)

@avaaaaaaaaa
What type of seizures are you experiencing?
What type of seizures are you having, tonic-clonic, focal or both.
Are you taking antiseizure medication?
Are your seizures controlled?
You might want to ask your Epileptologist if your language issues are due to aphasia from your seizures, medication or both.
Is your seizure activity in your left or right temporal lobe?
If seizures originate in the left hemisphere of the brain, particularly the temporal lobe, which is important for language processing aphasia is more likely to occur.
I have had aphasia for a long time and it doesn't bother me if I forget words etc any longer. I have accepted my condition and the limitations associated with it. When I forget words, thoughts or sentences I simply try and go on with what I was trying to say (if I can remember) but in shorter sentences and simpler words. If I forget, I forget, no big deal. People who know me understand and if others don't, it's their problem not mine. Sometimes the problems associated with epilepsy are more problematic for others than they are to me.
I too have severe memory challenges. I have had epilepsy for nearly 60 years and have been in numerous comas, the longest of which was eight months and I forgot every memory I ever had. The first memory I have is when I was 18. Nothing prior to that.
But having epilepsy is nothing to be ashamed or embarrassed about.
I don't think I was depressed but it's hard to remember so long ago but I was angry the first couple of years. But I accepted my condition and its restrictions and my new normal and have led a very happy life.
Take care,
Jake

Hi Chris.....was reading thru some of these discussions and you said you started on 500mg Keppra and now on 150mg twice a day. Is that the oral form as I have asked to reduce from my 250mg twice a day and was told the 250mg was the smallest I could get. Thanks and God Bless
ray hippele

Hi @hippele
Exactly, Keppra has also an oral version, at least here in Brazil and Europe. I have just verified the UCB website and it seems the oral version is also available in the US. Here is the link: https://www.ucb.com/solutions/products/keppra
Have a nice day!
Chris

It’s interesting seeing the effect different medications have on people. I went thru a few from Dilantin (worked but made my gums swell and bleed) phenobarbital (made me sleep all the time. Landed on Tegretol (Carbamazepine) that has worked best with no side effects for me.
I used to think it was the cause of my bad memory and struggles to focus in conversation. But after brain surgery my memory and focus was cleared up completely. Still take the tegretol but as an insurance. I was extremely fortunate as the surgeon said no one but me has reported the post surgery mental improvements that I experienced.

I've been diagnosed with SLIPPERS Syndrome/ disease and as a result I experience focal seizures. My symptoms include aphasia, inability to speak, double vision and many others. I'm on 75mg of Briviact 2x's daily to prevent them. I have lesions in my left temporal, occipital, and frontal lobes. It's nice to know I'm not alone ♥️

My daughter is having the same thing happen. She was diagnosed 4 months ago. I'm hoping these groups can help her and everyone else in them. Thank you for your post.

Hello, I have been a T1d for 40 years, and with the last 10 years been diagnosed with Simple partial seizures (temporal lobe) sometimes are very quick or a few minutes. I have been on the same seizure meds (oxycarbezine & zonisamide) I also take (2) statins in conjunction with these meds. It definitely seems like my memory is garbage, as well as my spelling now!!!! Seems like statins along with seizure meds DO NOT play together nicely ….