Can anyone suggest any other medication besides Keppra for seizures?

Posted by 1710dave @1710dave, Aug 18, 2020

Can anyone suggest any other medication besides keppra for seizures.These pills are destroying my brain and body.The pill attacks my miscle so bad I cannot walk some times the pain is so bad in my legs.The pill is like a statin and it does damage to your muscle and tendons it is calls rhabdomyolysis.The doctors are no help at all, they just say all the pills have side effects and leave it at that.Hope someone has a suggestion.Thank you Dave

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hello – i am an 83 yr old women and i have been on keppra since july due to a fall and brain bleed. dr's put me on keppra as a preventive of seizures, but all hospital tests that was done did not see any definitive seizure as cause. my neuro has finally weaned me off keppra in october, same year due to too many side effects from the med. today is my 1st day of being totally off keppra, and i would like to know if anybody took this med and came off – are there any side effects that i should expect while this med is getting out of my system, beyond possible seizure?

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hi 171dave – there are other meds beyond keppra but most are expensive, unless your prescription drug co. will pay cost? you should ask your dr to prescribe another seizure med unless they feel keppra is the only one for you. as i stated in my post, i finally came off keppra in 4 mos (dr did not agree to take me off but i insisted because of too many side effects it was causing. i was on keppra as a preventive after surgery for a fall that caused a brain bleed. i wish i could tell you other meds than keppra, but i don't know the names, your dr. should be able to prescribe other meds.

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@santosha
“It seems this explains when one remembers or not he or she had a seizure, don't you think so?”
So you can remember the seizure but not the Aura?
I only ever remember 1 Aura/Focal Aware déjà vu episode. I wonder if it had progressed to an impaired seizure or a bilateral tonic-clonic seizure if I would have remembered anything. out of 13,000+ seizures I sometimes wonder if I ever had any auras before the tonic clonic seizures and just don’t remember. It seems odd to only remember one aura.
I took yoga classes for several years but no noticeable seizure improvement. I had quite a few in class and I thought I'd be limber like “gumby” but it never happened.
Take care,
Jake

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@jakedduck1

@santosha
“It seems this explains when one remembers or not he or she had a seizure, don't you think so?”
So you can remember the seizure but not the Aura?
I only ever remember 1 Aura/Focal Aware déjà vu episode. I wonder if it had progressed to an impaired seizure or a bilateral tonic-clonic seizure if I would have remembered anything. out of 13,000+ seizures I sometimes wonder if I ever had any auras before the tonic clonic seizures and just don’t remember. It seems odd to only remember one aura.
I took yoga classes for several years but no noticeable seizure improvement. I had quite a few in class and I thought I'd be limber like “gumby” but it never happened.
Take care,
Jake

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Hi Leonard!
The other way around. I see I have not expressed myself very well, I am sorry. I can remember my aura (simple partial seizure), as at this point I am still aware. But I can NOT remember my complex partial seizure as at this moment my awareness gets impaired. I believe I know that I have had a seizure because all my seizures start with an aura and about 95% of them evolve to complex partial seizure. If my seizures would start directly with a complex partial one, I ask myself if I would be able to know I had a seizure??? Additionally, a few times I also get a feeling of seizure risk, some hours before it I have it.
I can not tell you if yoga has decreased or not my seizures, but for sure it has helped me in many ways since I was diagnosed with epilepsy some 3 years ago. I have been practicing hatha yoga and yoga nidra since 2018. It has for sure helped me to calm down and decreased my anxiety, a symptom of my epilepsy. With yoga, I have also learned to listen more to my body and to hear what it is trying to tell me (inhabit your body) as well as to develop more my intuition (right side of my brain that has no sclerosis). Those feelings of a seizure risk I have developed with my yoga practices after learning to better listen to my body. Yoga nidra helps me much to recharge my batteries during the day. As I have already mentioned in other posts, I have sleep problems, getting tired during the day. Therefore, almost on a daily basis, I practice yoga nidra after lunch, feeling reenergized after it. It is said that 30 minutes of yoga nidra can correspond up to 2 hours of deep sleep. Interestingly, I have observed that my chances of having a seizure are higher when I do not practice my yoga nidra (bad or lack of sleep is one of my main triggers). Last not least, yoga philosophy has helped me to better deal with my epilepsy for example, to live more in the present moment rather than the past and/or the future. This has taken much off weight off my shoulders. If we observe, many times our mind is in the future trying to solve problems that do not exist yet or to anticipate problems that have not already happened. Somehow, with this way of thinking, much of my fear of a next seizure has vanished (I have refractory epilepsy with about 5 to 8 seizures a month).
Nowadays, there are many lines of yoga. Hatha and Haja yoga are traditional yoga lines with uncomplicated postures (assanas). Just a curiosity, I have heard that those complicated postures of yoga have been mostly developed in modern yoga, when India was a colony of Britain. This was a way Indian people could show the strength and vigor of their body to the British.
Curiosity, what kind of yoga have you practiced, Leonard? Could you share your experience with us?
Have a nice day!
Santosha

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@louisez79

hello – i am an 83 yr old women and i have been on keppra since july due to a fall and brain bleed. dr's put me on keppra as a preventive of seizures, but all hospital tests that was done did not see any definitive seizure as cause. my neuro has finally weaned me off keppra in october, same year due to too many side effects from the med. today is my 1st day of being totally off keppra, and i would like to know if anybody took this med and came off – are there any side effects that i should expect while this med is getting out of my system, beyond possible seizure?

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Hi @louisez79
I have not tried Keppra, but as far as I know, those medications (AEDS – antiepileptic drugs) should not be withdrawn from one day to another, unless the dose is small or the med has been replaced by another AED. I have refractory epilepsy and the last AED I took (Vimpat – Lacomsamide) has been withdrawn slowly in a period of 6 months as it has not been replaced by another AED, but by CBD (cannabis). My doctor has been very careful in this transition so as reduce/eliminate potential side effects of this change. I am also a person very sensitive to antiepileptic drugs.
Has your doctor replaced Keppra by another med @louisez79? Did you take a high dose of Keppra?
Take care!
Santosha

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@santosha

Hi @louisez79
I have not tried Keppra, but as far as I know, those medications (AEDS – antiepileptic drugs) should not be withdrawn from one day to another, unless the dose is small or the med has been replaced by another AED. I have refractory epilepsy and the last AED I took (Vimpat – Lacomsamide) has been withdrawn slowly in a period of 6 months as it has not been replaced by another AED, but by CBD (cannabis). My doctor has been very careful in this transition so as reduce/eliminate potential side effects of this change. I am also a person very sensitive to antiepileptic drugs.
Has your doctor replaced Keppra by another med @louisez79? Did you take a high dose of Keppra?
Take care!
Santosha

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hi santosha thank you for the information. i was on vimpat back in july when i had my surgery due to a fall and brain bleed. when i had to refill it the cost was too expensive for me and my neuro then switched me to keppra (august). i was on 750mg twice a day, which caused many side effects. my neuro then told me to take half pill twice a day (since early september). i had requested the neuro to take me off keppra now, mid october – (causing too many side effects and i was now on seizure meds since july thru october while reducing the meds all along, as a preventive of seizures (no test done for seizures while in hospital ever showed me having a seizure which could have caused me falling and having a brain bleed). i understood neuro taking preventive measures, but this med was causing me to feel awful every single day from july to october and i just did not want to live my life with these side effects without trying to wean off them.

neuro finally told me, reluctantly, that she disagreed but would wean me off. i was told last week to take 1/2 tablet of keppra once a day, for three days, then stop the med, which i have done. this is my third day of not taking this med now, and thank the lord i am not having most of the side effects that i was having while on this med, hope it continues – but i will stay conscious of any changes that may arise and immediately notify my neuro (hoping for no changes and i just keep getting better each day).

i hope that you will stay healthy and get better each day also. let me know your thoughts that my neuro did wean me off keppra sufficiently, as i would love to hear back from you.

louise

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@santosha

Hi @louisez79
I have not tried Keppra, but as far as I know, those medications (AEDS – antiepileptic drugs) should not be withdrawn from one day to another, unless the dose is small or the med has been replaced by another AED. I have refractory epilepsy and the last AED I took (Vimpat – Lacomsamide) has been withdrawn slowly in a period of 6 months as it has not been replaced by another AED, but by CBD (cannabis). My doctor has been very careful in this transition so as reduce/eliminate potential side effects of this change. I am also a person very sensitive to antiepileptic drugs.
Has your doctor replaced Keppra by another med @louisez79? Did you take a high dose of Keppra?
Take care!
Santosha

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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

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@louisez79

hi 171dave – there are other meds beyond keppra but most are expensive, unless your prescription drug co. will pay cost? you should ask your dr to prescribe another seizure med unless they feel keppra is the only one for you. as i stated in my post, i finally came off keppra in 4 mos (dr did not agree to take me off but i insisted because of too many side effects it was causing. i was on keppra as a preventive after surgery for a fall that caused a brain bleed. i wish i could tell you other meds than keppra, but i don't know the names, your dr. should be able to prescribe other meds.

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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

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@louisez79

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

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@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

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@santosha

@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

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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

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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

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@louisez79

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

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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

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