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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@bunnyboy

Hello, new to this board, thank you for all the information. Doctors scoff at this but my seizures started after my first Covid Vaccine, it has been a nightmare. I’ve had 2 Covid Moderna Vaccine shots, and 1 booster, within 5 to 6 days of each shot I had a severe seizure. I have never had a seizure in my life prior to the Covid Vaccine. At first my Doctor and Neurologist scoffed at a connection, but finally my Doctor (a wonderful man) said he would not rule it out and felt there might be a connection. Originally, they prescribed Gabapentin and Carbamazepine. At work, my memory was diminished, along with balance issues, etc. It was a nightmare. Because my seizures were nocturnal only I took the Gabapentin and Carbamazepine in the evenings before sleep. My seizures were controlled but still returned at the first week of every month for 2 years, bizarre, some kind of a biorhythm issue. Because I was so weary of memory issues, not remembering people at work who I knew well, and a myriad of other new maladies, I decided to stop the Carbamazepine (as the half life was 36 hours). I increased the Gabapentin (also an anti-seizure) as the half-life was 6 hours, this way I felt I could be free of medication during the day. Either way, after a week I stopped the Carbamazepine completely, within 5-days I had a massive seizure attack, 7 in succession. My husband who has always stood by me with my nocturnal seizures, was horrified. The next morning, he called ER, they said ‘get him in here’. I was there for 7 hours. I have now been prescribed (Keppra, 750 MG, ER, morning and night) with continued use of Gabapentin. I have an appointment with a new Neurologist in a week, my previous one has left the system. This all said, the Keppra makes me feel weird, I have taken 2 weeks off work (first time off in 5 years). I have had a stomach ulcer in my past, completely went away and has not been an issue. Guess what? It has slowly and now aggressively returned. I feel aggravated by the Keppra tablet sitting in my stomach each night. Just wanted to share my issues, and certainly appreciate reading what others are experiencing. Thank you!

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Keep on the Keppra but only the name brand not the generic…..mine are 250mg and I cut them in half…I take half at 8am, 12noon, and then 4pm….each time 1/2 tablet……and yes, my neuro doctor calls me a “non-compliant patient”…….(I don’t care)…..generic are stuffed with other things and may have 250mg in one tablet and then next time 100 mg then could be 80mg in the next tablet, etc. (Deception of the drug companies). Yes keppra name brand (the real drug) is more expensive, but to me it is worth it……I had a seizure when I was 12yrs….diagnosed as my body changing…..this time May, 2022….doctors nurses etc…..said seizures are a “mystery”. I had covid in August, 2021 (4 weeks) then had a night seizure in November, 2021……then in May 2022…..in the afternoon….I did some research myself and I think it was a grand mall seizure…doctor agreed with me……my side affects with keppra, the way I take it, my only side affect is thots of suicide…..I do exercise everyday and try to eliminate sugars, fats, and gluten…..try to eat lots of fruits vegetables and nuts and grains…..I DiD NOT get the deceitful, deceptive Covid shot…..no booster deception shot either….

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Hi @bunnyboy
Sharing my experience with you. My first 2 shots of Covid vaccine were from AstraZeneca and I was fine after it. The third Covid vaccine was from J&J, increasing my seizures a lot for a period of 10 days. I have normally 2 to 3 partial complex seizures a month and after this J&J vaccine, I experienced 12 to 13 focal complex seizures a day for about 10 days. I am convinced that Covid vaccine can affect those with epilepsy.
I understand your seizures are generalized ones (convulsions), right? Have you tried to visit an epileptologist? Being treated by an epileptologist has made a great difference in my treatment and explained my epilepsy and its source.
If I understood you correctly, all was well with your health and after Covid vaccine you started to have seizures, right? Perhaps you had lighter seizures that did not alarm you before? I said that because I have been more than 30 years with undiagnosed epilepsy, though many EEG exams have been performed. The seizures I had when younger were rare, about 3 times a year and also much lighter (many were just auras). They lasted for very few seconds and did not interfere with my life at that time. But after burnout in 2017, my seizures did not just increase but also became stronger. My epilepsy started to show its face, being diagnosed with it 2 years later. Nowadays, after studying my epilepsy (The Epilepsy Foundation has been a great source to me) and visiting doctors who are specialized in epilepsy, I understand well my epilepsy. The source was an accident when I was 5 years old, though the seizures just started when I was a teenager (there is a latent period in epilepsy). Did you have any accident that may perhaps justify your epilepsy?
Hope you have helped you a bit with my experience. Feel free to contact me!
Santosha
Not being able to speak after a seizure is something quite common to me (I have temporal lobe epilepsy)

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@bunnyboy

By the way, they did an MRI and CT scan, Chest X-Rays etc., in ER and found no anomalies. (After all nocturnal seizures I have no memory, and can hardly talk for hours, very scary)

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@bunnyboy, one thing I forgot to share with you. Nowadays I can also hardly talk after a seizure. I am very confused and have difficulty pronouncing words. Usually, it lasts about 30 minutes, but stronger seizures can leave me more time without being able to speak. This is also something that changed after 2017. Before this time, I could return to my activities after a seizure right after it.
You said you can not talk for hours! I can understand how scary that can be. How many hours in stay in this condition, would you mind sharing it with us?
Santosha

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@dawnfensterbusch

Keep on the Keppra but only the name brand not the generic…..mine are 250mg and I cut them in half…I take half at 8am, 12noon, and then 4pm….each time 1/2 tablet……and yes, my neuro doctor calls me a “non-compliant patient”…….(I don’t care)…..generic are stuffed with other things and may have 250mg in one tablet and then next time 100 mg then could be 80mg in the next tablet, etc. (Deception of the drug companies). Yes keppra name brand (the real drug) is more expensive, but to me it is worth it……I had a seizure when I was 12yrs….diagnosed as my body changing…..this time May, 2022….doctors nurses etc…..said seizures are a “mystery”. I had covid in August, 2021 (4 weeks) then had a night seizure in November, 2021……then in May 2022…..in the afternoon….I did some research myself and I think it was a grand mall seizure…doctor agreed with me……my side affects with keppra, the way I take it, my only side affect is thots of suicide…..I do exercise everyday and try to eliminate sugars, fats, and gluten…..try to eat lots of fruits vegetables and nuts and grains…..I DiD NOT get the deceitful, deceptive Covid shot…..no booster deception shot either….

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Hi @dawnfensterbusch
You have shared with us that you have been trying to eliminate gluten, fats, sugars from your diet. Would you mind sharing the results of this diet with us. I would be very interested in knowing! Did you do that in steps?
In 2021 for one month, I have taken gluten out of my diet for one month, reducing much my seizures. So, in 2022 I started a 100% gluten-free diet, reducing my seizures from 12/13 focal seizures a month to 2/3 seizures a month. Taking gluten out of my diet was much easier than I expected. Some 6 months later after being on a gluten-free diet, I have tried to be lactose-free for one month. No changes. As lactose was harder to take out of my diet, I reincluded it in my diet.
Thank you!
Santosha

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@dawnfensterbusch

Keep on the Keppra but only the name brand not the generic…..mine are 250mg and I cut them in half…I take half at 8am, 12noon, and then 4pm….each time 1/2 tablet……and yes, my neuro doctor calls me a “non-compliant patient”…….(I don’t care)…..generic are stuffed with other things and may have 250mg in one tablet and then next time 100 mg then could be 80mg in the next tablet, etc. (Deception of the drug companies). Yes keppra name brand (the real drug) is more expensive, but to me it is worth it……I had a seizure when I was 12yrs….diagnosed as my body changing…..this time May, 2022….doctors nurses etc…..said seizures are a “mystery”. I had covid in August, 2021 (4 weeks) then had a night seizure in November, 2021……then in May 2022…..in the afternoon….I did some research myself and I think it was a grand mall seizure…doctor agreed with me……my side affects with keppra, the way I take it, my only side affect is thots of suicide…..I do exercise everyday and try to eliminate sugars, fats, and gluten…..try to eat lots of fruits vegetables and nuts and grains…..I DiD NOT get the deceitful, deceptive Covid shot…..no booster deception shot either….

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Hi
What ever you do don't go to Sabril as most people have the side affect of double vision and some people get moemory loss and I lost my memory on it and demanded to be taken off it after 5 months as I couldn't function. Apparently they were going to give it to drug addicts and I said to my husband it was probably so they would forget to have their next hit
I've been on Keppra for 23 years and feel great the only thing is that it interferes with your potassium levels so my doctor put me on a potassium suppliment and I feell brilliant!

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@santosha

@bunnyboy, one thing I forgot to share with you. Nowadays I can also hardly talk after a seizure. I am very confused and have difficulty pronouncing words. Usually, it lasts about 30 minutes, but stronger seizures can leave me more time without being able to speak. This is also something that changed after 2017. Before this time, I could return to my activities after a seizure right after it.
You said you can not talk for hours! I can understand how scary that can be. How many hours in stay in this condition, would you mind sharing it with us?
Santosha

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Thanks for sharing all your valuable info. My situation in not talking is right after seizures, slowly I come around, the Keppra is killing me, they have me on 750 twice a day, I'm going to advocate him putting me back on carbamazepine instead. I was taking Carb. with Gaba. only at night previous, even though they wanted me on twice a day. Either way, the morning and night dosage is what is destroying my home and work life. They don't have a treatment for seizures, their solution is just to keep you drugged all the time and sedated. Even so, I believe the Covid Vaccine, once it exits my body completely, seizures will stop. But the Doctors want you on the meds forever, so no way to ever tell if you need them! Thanks everyone for your input!

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@santosha

Hi @bunnyboy
Sharing my experience with you. My first 2 shots of Covid vaccine were from AstraZeneca and I was fine after it. The third Covid vaccine was from J&J, increasing my seizures a lot for a period of 10 days. I have normally 2 to 3 partial complex seizures a month and after this J&J vaccine, I experienced 12 to 13 focal complex seizures a day for about 10 days. I am convinced that Covid vaccine can affect those with epilepsy.
I understand your seizures are generalized ones (convulsions), right? Have you tried to visit an epileptologist? Being treated by an epileptologist has made a great difference in my treatment and explained my epilepsy and its source.
If I understood you correctly, all was well with your health and after Covid vaccine you started to have seizures, right? Perhaps you had lighter seizures that did not alarm you before? I said that because I have been more than 30 years with undiagnosed epilepsy, though many EEG exams have been performed. The seizures I had when younger were rare, about 3 times a year and also much lighter (many were just auras). They lasted for very few seconds and did not interfere with my life at that time. But after burnout in 2017, my seizures did not just increase but also became stronger. My epilepsy started to show its face, being diagnosed with it 2 years later. Nowadays, after studying my epilepsy (The Epilepsy Foundation has been a great source to me) and visiting doctors who are specialized in epilepsy, I understand well my epilepsy. The source was an accident when I was 5 years old, though the seizures just started when I was a teenager (there is a latent period in epilepsy). Did you have any accident that may perhaps justify your epilepsy?
Hope you have helped you a bit with my experience. Feel free to contact me!
Santosha
Not being able to speak after a seizure is something quite common to me (I have temporal lobe epilepsy)

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Thanks for all this info. I am pretty discouraged, not suicidal, but certainly understand why people don't want to continue, why would one? That said, it is possible I have had undiagnosed seizures in past which were increased by the vaccines, but certainly they have never been identified. Either way, wouldn't matter, as it doesn't help with the treatment. The Dr's have one solution, keep you drugged to the point of zombie, no seizures, and they feel they have helped. Not! I am starting a new Neurologist in ABQ, but will certainly consider your suggestions as well. So sorry for what you have had to endure, and everyone else! Cheers!

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@bunnyboy

Thanks for all this info. I am pretty discouraged, not suicidal, but certainly understand why people don't want to continue, why would one? That said, it is possible I have had undiagnosed seizures in past which were increased by the vaccines, but certainly they have never been identified. Either way, wouldn't matter, as it doesn't help with the treatment. The Dr's have one solution, keep you drugged to the point of zombie, no seizures, and they feel they have helped. Not! I am starting a new Neurologist in ABQ, but will certainly consider your suggestions as well. So sorry for what you have had to endure, and everyone else! Cheers!

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I am sorry you feel so bad. I had undiagnosed seizures for awhile. Even drove a mile while having one before getting in a wreck. I have been taking 100mg 2x daily (100 morn, 100 night) of Zonisamide for 15 years not one seizure, no weird side effects. I see a neurologist every 4 months. I take 1mg of klonopin also for anxiety and 300mg of gabapentin for nerve damage and I am good. I lived in ABQ and unless you are going to UNM I'd go to AZ to the Dr!

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@bunnyboy

Thanks for sharing all your valuable info. My situation in not talking is right after seizures, slowly I come around, the Keppra is killing me, they have me on 750 twice a day, I'm going to advocate him putting me back on carbamazepine instead. I was taking Carb. with Gaba. only at night previous, even though they wanted me on twice a day. Either way, the morning and night dosage is what is destroying my home and work life. They don't have a treatment for seizures, their solution is just to keep you drugged all the time and sedated. Even so, I believe the Covid Vaccine, once it exits my body completely, seizures will stop. But the Doctors want you on the meds forever, so no way to ever tell if you need them! Thanks everyone for your input!

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@bunnyboy Good Evening
Great to know you are starting a new neurologist! I believe I was in a similar situation in 2020 as yours today. I did not adapt to Vimpat, it was killing me and destroying my life. But my doctor at that time did not want to go back to Tegretol/Carbamazepine prescribed by a previous doctor. The dosage to him was too low, the drug was not keeping me seizure-free and there were more modern drugs available on the market. As he did not want to switch back, I switched him. It was the best thing to do in such a situation in my opinion.
I agree when you say that many doctors do not treat patients with epilepsy and above all human beings. Many just keep us drugged. But there are still good ones!! Do not lose your faith!! This is very well shown in the movie with Meryl Streep "First do no Harm", about the aggressive treatment her child receives when diagnosed with epilepsy. It is available on YouTube. Worth watching.
My doctor agrees to keep me on a drug in which I can have a certain life quality, though I still have some seizures. I do also prefer to have my 2 to 3 seizures per month (my seizures are focal) rather than to be again in the state I was in while taking Vimpat and other AEDs . Some have made me seizure-free but at a very high cost.
Wishing you all the best with this new doctor. Please give us news from you. Do not lose faith!!!
Santosha

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@bunnyboy
It's not that there is no treatment available, but they may not help your seizures. Not all doctors have a good bedside manner and I believe some have a care less attitude. Is it the side effects that are the problem or the seizures aren't controlled or both. What type of seizures do you have?
If you've tried carbamazepine before and it didn't control the seizures you might try the extended-release version. I take Carbitrol a time-release brand name Carbamzapine. Another thing to try is always using the same manufacturer. When you switch meds you might ask your doctor to increase your dose more slowly than he normally would. Sometimes that helps with side effects.
Most if not all Antiseizure meds cause some degree of tiredness. obviously, the problem with seizures is their unpredictability. Doctors often recommend trying to stop the meds if you are seizure free after 2 or more years depending if your EEG, MRI, and Neurological exam are normal.
Good luck to you.
Jake

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