Can anyone suggest any other medication besides Keppra for seizures?

santosha, perhaps i can ask my neuro "would it be helpful to take CBD also" to help prevent possible seizures now that i am off meds for seizures - what do you think?

louise

sounds like you had the same procedure and cause; you also came off meds in 4mos, same as i did because i also insisted that my dr. take me off seizure meds in 4 mos. hope you are doing well and hope i will also.
louise

@louisez79
Hi Louise, Good Evening
I am really sorry to hear about your fall and then surgery at your age. What kind of surgery did you go through? Was it like an epilepsy surgery (i.e. laser ablation) to remove a lesion in the brain? What I have heard is that even after such a surgery, patients need to continue to take antiepileptic meds. If I understood you well, you were on Vimpat just for one month, July 2021, right? Just a curiosity, how did you feel with Vimpat?
I have searched here now on the internet and the initial dose of Keppra seems to be 500 mg twice per day. I understand you very well when you say that you did not want to continue living your life with those side-effects. I have been through it for almost 2 years after being diagnosed with epilepsy in February 2019 (I am 50 years old). I am much better now with my CBD treatment. I feel like my life is back :-)!
CBD is usually prescribed to patients, when two or more AEDs have not worked. I have taken 5 different AEDs before starting with CBD. I have not yet read that CBD is prescribed after epilepsy surgery. But I am not a doctor! Talk to your neurologist.
Asking your doctor about you taking CBD will for sure not hurt. One thing I have learned throughout my treatment and also in epilepsy communities is that not every doctor is familiar with CBD treatment. Some two months ago, we had a long and nice discussion on CBD in our group at Mayo Clinic Connect, sharing many experiences about CBD. Have a look at it!
I hope I have helped you a bit!
All the best to you!!! I hope you continue to feel better every day and with no seizures. Take good care of you!
If you have any other questions or want to talk, feel free to contact me!
Kind Regards,
Santosha

good evening santoshia - boy, you have had a worse and longer time of it. i truly hope that the cbd will do the trick for you to be and stay better. i was walking my son's little dog and my bad knee gave out on me (which i can usually catch it), but the dog was on a leash and kept walking, so down i went. that is the reason i said to dr's it was not a seizure, as i got no aura, and i remembered everything. had to have many surgeries - neuro surgeon (whom i love), put 2 stents in my head in hopes to get my brain back to midline and absorb the blood. last cat scan he gave me before he discharged me, all was great, brain was back to midline, and all the blood was gone. he told me to see the neuro dr., which i had an appt to do so, and ask her to consider maybe wean me off meds, she wanted me on meds for six months, but i insisted on being off because i was no on meds for 4 months. along with the head injury, i managed to fracture one hip which needed surgery also. in the hospital from july to late sept. for both injuries, now i am slowly healing and getting around pretty good. i know it will take a long time for me to feel as myself before these injuries, but i am working towards being 100% by next spring to again get on the golf course (miss it). as you can see, i am a very active elderly lady, and that is the main reason i want my life back.

i hope the cbd will continue to work for you and get you back to living life as you once did. i pray that i will not get any setbacks also, and just continue to get better.

as for the vimpat, it seemed okay for awhile, but then i was getting side effects from it, and plus it was too expensive for me to stay on it. keppra reacted the same, when i first went on that it seemed okay, but then again i started having too many side effects from it. (i am not a good patient when it comes to taking meds - always get reactions).

santoshia, you have helped me alot, just by talking about this. i hope i have done the same for you. stay in touch if you want to.

louise

hi 171 dave - i feel your pain from keppra - i too was getting pain in my leg muscles, arms and feet. probably not as bad as you are feeling, but i do feel the pain and weakness. i pushed myself to do light exercising for those limbs, and i do light walking only in my condo hallways though. i stay inside to walk, as now i am walking without a cane. i am still too afraid to try that outdoors yet.

it was painful when i started exercising and walking, but i tried to do it at least 4 times a week, and it has gotten easier to do, now the only time i feel discomfort is when i go to bed to sleep. tylenol seems to help me there. 171 dave, if you can do the above, do not push yourself until you feel the light exercising and walking are helping you with the pain. perhaps i should not be suggesting this to you and perhaps you should speak to your dr first before trying light exercising.

hope you get to feeling better because i understand how constant pain upsets your daily life and also causes you not to get a full nights sleep. stay strong and get better soon.

louise

Hi Louise,
Nice to hear from you again! Thank you for sharing your short experience with Vimpat.
Now I can better understand what happened to you. It looks like you do not need antiepileptic meds or CBD :-). But again, I am not a doctor. Since you get very well along with your neurosurgeon, have you considered asking him for another neurologist recommendation so as to have a second opinion? Nice to hear you are a very active lady. It reminds me of my sweet grandmother.
Thank you for your wishes. I do not have expectations to eliminate 100% of my seizures, just to be able to live my life. I do not believe I will live my life as I did before, because much has changed, especially inside me :-).
It has been great talking to you!
I hope you have a nice recovery from both surgeries. One day at a time, one step at a time! As my yoga teacher always reminds me “you do not open a flower with your fingers”. All the best to you and let's keep in touch!
Santosha

@louisez79
One thing that is perhaps interesting to share with you, Louise, and @1710dave. I had some problems with one of my knees after I have fallen due to balance problems (side effect of Tegretol). I have tried many things, infiltration, physiotherapy, massage, etc. But what has been helping me the most is Pilates. In the past, my husband had severe back problems and could avoid a second surgery with the practice of Pilates.
@1710dave I also believe Vimpat, which I have taken after Tegretol, was not doing good to my body either. Since I have withdrawn this med this year, my knee seems to be healing faster.
Have a nice day :-)!

hi santoshia - nice to hear from you today, thank you for your advice. i do have a 11/10 appt with the neuro, which i believe will be the last appt with her. if not, i am going to ask for a new neuro, one that will listen to the patient. one situation that i am currently dealing with - i do not sleep well, lucky to get 2-4 hrs of sleep per night. feels like my brain will not shut down for sleep. i have taken trazadome which works occasionally - will help to get to sleep, but then i wake up every 2 hrs, or it doesn't work at all. i will speak to the dr about this. you take care, stay healthy, and hope we will stay in touch.

Hi @louisez79, Good Morning
Not every doctor listens to his or her patients, unfortunately. I have experienced that myself in my epilepsy journey. Hope you can find a doctor that listens to you, gives the attention you deserve, and has compassion. I understand it is important that the relationship doctor-patient becomes a partnership.
Take you too good care of yourself. As Dr. Cynthia Li mentions in her book Brave New Medicine, healing is a proactive mindset.
Have a lovely day!
Santosha

@jakedduck1
Hi Leonard
Very recently this week, I came across this video and Andrews-Reiter approach to epilepsy, which has caught my attention, remembering our exchange of experiences about yoga.
https://www.youtube.com/watch?v=Onll-fx-B7Q
"Donna Andrews and neurologist Joel Reiter believe stress can cause seizures. And the epilepsy treatment they have designed is based on that belief."
"Andrews' theory is that rage, panic and worry can create dangerously erratic neural firings in everybody, not just epileptics. In people without epilepsy, these erratic firings don't cause seizures because their seizure threshold, or ability to tolerate irregular bursts of cerebral electricity, is higher. But in epileptic patients with damaged neurons already prone to overfiring, these electrical surges can create seizures."
"Consequently, epileptics who seek treatment at the Andrews-Reiter Research Program are given training in relaxation and deep breathing."
Here is a complete article on the Andrews-Reiter approach to epilepsy: https://joshuakors.com/epilepsy
Have a nice weekend!
Santosha