Keppra gave me diarrhea every morning but I was also having joint issues and after discussing here found out that Keppra can affect joint health. Not to say that I personally do not like any pills as "There is a poison in every pill". Sometimes we have no choice and have to take "pills" but if I have a choice, I believe the body itself is the greatest natural "healer". God Bless.....
When you say no seizures, the question I always ask is "was it the pills or without the pills whether you STILL would not have had any seizures". We have no idea. Food for thought. God Bless....
Hi @hippele
I completely understand your frustration and pain with these medications. I went through similar struggles when I started my epilepsy treatment back in 2019, really battling with AEDs and their side effects.
After two years of trial and error with five different AEDs, I switched doctors and I was prescribed pure CBD, staying on it for over three years. The side effects were very minor, and while my seizures were reduced, they weren't completely eliminated. But all that changed after my status epilepticus last December, when I had to go back on an AED at the hospital.
My current doctor told me I'd need to stay on Keppra for a while, and honestly, I was terrified. I was experiencing all those awful side effects - diarrhea, joint and muscle pain, allergies, etc. My reaction was pretty negative because I was so scared of repeating all those horrible experiences I'd had with other AEDs.
But here's what was different: unlike my previous doctors, my current one took the time to really fine-tune the Keppra dosage. Today I'm on a dose that my body can actually handle, and I'm not living in constant discomfort anymore. We have a saying here in Brazil: "a scalded cat is afraid of cold water." My doctor completely got that and was incredibly patient and reassuring throughout the whole process.
I've been seizure-free for almost six months now, and I'm so grateful. Would I be seizure-free without Keppra? Probably not. It makes me wonder how different things might have been if my earlier doctors had taken the same careful approach.
I know you're angry at these medications, and I totally get it. We've already exchanged some messages here on Connect! Remind me - who's treating your epilepsy? Is it a neurologist or an epileptologist? Has he or she suggested trying to fine-tune your current medication dosage?
All my best to you!
Chris
A neurologist is treating me. When I had my tonic clonic seizure 2 yrs ago, they started me out on 500mg keppra 2x a day. A year later, I reduced that to once a day. I did have another less intense seizure the second year when I forgot to take my once a day pill. Thats when doctor explained the 12hr duration of keppra so I then did 250 2x a day. Then this year I started reducing further in Feb and was completely weened off very slowly by May. All these decisions were made by me and not my doctor. I informed him what I was doing. Of course, they can not recommend my planned path as they are afraid of the liability for them in the United States. They are more comfortable giving you pills even with side effects as that protects them in the courts. The patient has to make their own decisions and take their own CALCULATED chances. God Bless.
@hippele
I firmly disagree with the idea that doctors prescribe pills solely to make patients "more comfortable" or to cover themselves legally. The reality is that they prescribe anti-seizure medications because these are the first-line treatments for controlling seizures. While I acknowledge that these medications can have serious side effects, they effectively control seizures about 60-70% of seizures. Yes, some individuals may experience negative reactions, but those side effects are potential risks, not certainties. Doctors cannot with any certainty predict the side effects .
A neurologist is treating me. When I had my tonic clonic seizure 2 yrs ago, they started me out on 500mg keppra 2x a day. A year later, I reduced that to once a day. I did have another less intense seizure the second year when I forgot to take my once a day pill. Thats when doctor explained the 12hr duration of keppra so I then did 250 2x a day. Then this year I started reducing further in Feb and was completely weened off very slowly by May. All these decisions were made by me and not my doctor. I informed him what I was doing. Of course, they can not recommend my planned path as they are afraid of the liability for them in the United States. They are more comfortable giving you pills even with side effects as that protects them in the courts. The patient has to make their own decisions and take their own CALCULATED chances. God Bless.
Living with discomfort and pain can mess with our heads and make us want to do things that might not be the best choice. I've been there myself! Back in 2019-2020, when I was seeing general neurologists, I wanted many times to toss all my medications in the trash. Thank goodness my husband stopped me from doing this! Those doctors just followed the protocol in terms of medication dosage and were very resistant to reducing my dosage.
But, as I mentioned earlier, everything changed when I switched doctors and was treated by one with expertise in epilepsy.
I understand Keppra is the first medication you have been put on, correct? Perhaps Keppra isn't the best medication for you? It works well for some and not well for others. As my current doctor always says to me: every person and body is unique!
Have you considered having a second opinion, especially with an epileptologist?
Take care!
Chris
I was on Keppra for over 20 years. Whether it's been a build-up from long term usage or I just realized that I've been having Anxiety attacks along with seizures. Anxiety is a side effect of Keppra. They say it's rare.
I just went off it 2 months ago. I started adding Kava supplement 100 mg. in the afternoon. Up to this comment I have not had a seizure or anxiety attack since April 20th 2025. I do feel much calmer and I thinking skills have improved. I'd definitely consider seeing a epileptologist.
I've done a lot of research on seizure drugs and alternative herbs.
I've never seen one but wish I would have made the decision to see an epileptologist decades ago.
My life may have a different story.
Do some research on kava, tumeric, and niacin (100mg.)
Hi @joseph1963
Thank you for sharing your Keppra experience with us. All AEDs have potential side effects. It's also worth noting that anxiety can be a symptom of epilepsy itself, as explained at this link from the Epilepsy Foundation: https://www.epilepsy.com/complications-risks/moods-behavior/anxiety
In addition to Keppra and pure CBD, I use many other approaches to help control my seizures and improve my overall well-being. These include regular exercising, yoga and meditation, maintaining a healthy diet, prioritizing good sleep, taking supplements, and managing my triggers – all with my doctor's support.
If you're looking for specialized care, Mayo Clinic has excellent epileptologists if there's a facility near you. If you're not close to a Mayo Clinic, the Epilepsy Foundation's 24/7 Helpline can help you find an epileptologist in your area: https://www.epilepsy.com/247-helpline
Did your doctor recommend stopping Keppra, or was this a decision you made on your own?
Chris
Hi @joseph1963
Thank you for sharing your Keppra experience with us. All AEDs have potential side effects. It's also worth noting that anxiety can be a symptom of epilepsy itself, as explained at this link from the Epilepsy Foundation: https://www.epilepsy.com/complications-risks/moods-behavior/anxiety
In addition to Keppra and pure CBD, I use many other approaches to help control my seizures and improve my overall well-being. These include regular exercising, yoga and meditation, maintaining a healthy diet, prioritizing good sleep, taking supplements, and managing my triggers – all with my doctor's support.
If you're looking for specialized care, Mayo Clinic has excellent epileptologists if there's a facility near you. If you're not close to a Mayo Clinic, the Epilepsy Foundation's 24/7 Helpline can help you find an epileptologist in your area: https://www.epilepsy.com/247-helpline
Did your doctor recommend stopping Keppra, or was this a decision you made on your own?
Chris
I have both tonic clonic and absence/partial seizures. I tried Keppra but it didn’t work for me. I still had both kinds. I wasn’t on it very long, a month or two, but it had no affect on me at all so I was put on Vimpat, generic is Lacosamide, and it worked from day one. I still had to stay on Gabapentin too. I’m still on the same prescriptions ten years later and they work mostly. I still have nighttime sleep seizures periodically.
I have both tonic clonic and absence/partial seizures. I tried Keppra but it didn’t work for me. I still had both kinds. I wasn’t on it very long, a month or two, but it had no affect on me at all so I was put on Vimpat, generic is Lacosamide, and it worked from day one. I still had to stay on Gabapentin too. I’m still on the same prescriptions ten years later and they work mostly. I still have nighttime sleep seizures periodically.
@sungaltoo Hi!
I'm so glad to hear that Vimpat combined with Gabapentin is working better for you. I've actually tried that same combination before, but it didn't work for me. It's fascinating how different each person's response can be – what's effective for some may not work at all for others.
I'm currently researching the various therapeutic classes of AEDs to better understand whether all the medications that failed for me might have belonged to the same class. I've come across one category called "non-aromatic antiepileptic drugs," but I'd love to learn more about the complete classification system.
Does anyone in the group have more information about the different therapeutic classes of AEDs that you could share? I'd really appreciate any insights or resources you might have.
Thanks so much!
Chris
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So sorry. So far my joints are ok although I have arthritis. Hope you are
doing well.
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2 ReactionsHi @hippele
I completely understand your frustration and pain with these medications. I went through similar struggles when I started my epilepsy treatment back in 2019, really battling with AEDs and their side effects.
After two years of trial and error with five different AEDs, I switched doctors and I was prescribed pure CBD, staying on it for over three years. The side effects were very minor, and while my seizures were reduced, they weren't completely eliminated. But all that changed after my status epilepticus last December, when I had to go back on an AED at the hospital.
My current doctor told me I'd need to stay on Keppra for a while, and honestly, I was terrified. I was experiencing all those awful side effects - diarrhea, joint and muscle pain, allergies, etc. My reaction was pretty negative because I was so scared of repeating all those horrible experiences I'd had with other AEDs.
But here's what was different: unlike my previous doctors, my current one took the time to really fine-tune the Keppra dosage. Today I'm on a dose that my body can actually handle, and I'm not living in constant discomfort anymore. We have a saying here in Brazil: "a scalded cat is afraid of cold water." My doctor completely got that and was incredibly patient and reassuring throughout the whole process.
I've been seizure-free for almost six months now, and I'm so grateful. Would I be seizure-free without Keppra? Probably not. It makes me wonder how different things might have been if my earlier doctors had taken the same careful approach.
I know you're angry at these medications, and I totally get it. We've already exchanged some messages here on Connect! Remind me - who's treating your epilepsy? Is it a neurologist or an epileptologist? Has he or she suggested trying to fine-tune your current medication dosage?
All my best to you!
Chris
-
Like -
Helpful -
Hug
2 ReactionsA neurologist is treating me. When I had my tonic clonic seizure 2 yrs ago, they started me out on 500mg keppra 2x a day. A year later, I reduced that to once a day. I did have another less intense seizure the second year when I forgot to take my once a day pill. Thats when doctor explained the 12hr duration of keppra so I then did 250 2x a day. Then this year I started reducing further in Feb and was completely weened off very slowly by May. All these decisions were made by me and not my doctor. I informed him what I was doing. Of course, they can not recommend my planned path as they are afraid of the liability for them in the United States. They are more comfortable giving you pills even with side effects as that protects them in the courts. The patient has to make their own decisions and take their own CALCULATED chances. God Bless.
@hippele
I firmly disagree with the idea that doctors prescribe pills solely to make patients "more comfortable" or to cover themselves legally. The reality is that they prescribe anti-seizure medications because these are the first-line treatments for controlling seizures. While I acknowledge that these medications can have serious side effects, they effectively control seizures about 60-70% of seizures. Yes, some individuals may experience negative reactions, but those side effects are potential risks, not certainties. Doctors cannot with any certainty predict the side effects .
Take care,
Jake
-
Like -
Helpful -
Hug
2 ReactionsLiving with discomfort and pain can mess with our heads and make us want to do things that might not be the best choice. I've been there myself! Back in 2019-2020, when I was seeing general neurologists, I wanted many times to toss all my medications in the trash. Thank goodness my husband stopped me from doing this! Those doctors just followed the protocol in terms of medication dosage and were very resistant to reducing my dosage.
But, as I mentioned earlier, everything changed when I switched doctors and was treated by one with expertise in epilepsy.
I understand Keppra is the first medication you have been put on, correct? Perhaps Keppra isn't the best medication for you? It works well for some and not well for others. As my current doctor always says to me: every person and body is unique!
Have you considered having a second opinion, especially with an epileptologist?
Take care!
Chris
-
Like -
Helpful -
Hug
3 ReactionsI was on Keppra for over 20 years. Whether it's been a build-up from long term usage or I just realized that I've been having Anxiety attacks along with seizures. Anxiety is a side effect of Keppra. They say it's rare.
I just went off it 2 months ago. I started adding Kava supplement 100 mg. in the afternoon. Up to this comment I have not had a seizure or anxiety attack since April 20th 2025. I do feel much calmer and I thinking skills have improved. I'd definitely consider seeing a epileptologist.
I've done a lot of research on seizure drugs and alternative herbs.
I've never seen one but wish I would have made the decision to see an epileptologist decades ago.
My life may have a different story.
Do some research on kava, tumeric, and niacin (100mg.)
-
Like -
Helpful -
Hug
1 ReactionHi @joseph1963
Thank you for sharing your Keppra experience with us. All AEDs have potential side effects. It's also worth noting that anxiety can be a symptom of epilepsy itself, as explained at this link from the Epilepsy Foundation: https://www.epilepsy.com/complications-risks/moods-behavior/anxiety
In addition to Keppra and pure CBD, I use many other approaches to help control my seizures and improve my overall well-being. These include regular exercising, yoga and meditation, maintaining a healthy diet, prioritizing good sleep, taking supplements, and managing my triggers – all with my doctor's support.
If you're looking for specialized care, Mayo Clinic has excellent epileptologists if there's a facility near you. If you're not close to a Mayo Clinic, the Epilepsy Foundation's 24/7 Helpline can help you find an epileptologist in your area: https://www.epilepsy.com/247-helpline
Did your doctor recommend stopping Keppra, or was this a decision you made on your own?
Chris
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Hug
3 ReactionsTHANK YOU.... I NEVER WOULD STOP TAKING KEPPRA ON MY OWN... GOOD LUCK WITH ALL YOU'RE DOING AND KEEPING SO WELL.
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2 ReactionsI have both tonic clonic and absence/partial seizures. I tried Keppra but it didn’t work for me. I still had both kinds. I wasn’t on it very long, a month or two, but it had no affect on me at all so I was put on Vimpat, generic is Lacosamide, and it worked from day one. I still had to stay on Gabapentin too. I’m still on the same prescriptions ten years later and they work mostly. I still have nighttime sleep seizures periodically.
-
Like -
Helpful -
Hug
1 Reaction@sungaltoo Hi!
I'm so glad to hear that Vimpat combined with Gabapentin is working better for you. I've actually tried that same combination before, but it didn't work for me. It's fascinating how different each person's response can be – what's effective for some may not work at all for others.
I'm currently researching the various therapeutic classes of AEDs to better understand whether all the medications that failed for me might have belonged to the same class. I've come across one category called "non-aromatic antiepileptic drugs," but I'd love to learn more about the complete classification system.
Does anyone in the group have more information about the different therapeutic classes of AEDs that you could share? I'd really appreciate any insights or resources you might have.
Thanks so much!
Chris