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

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

You might ask your Neurologist about Trileptal immediate release or Oxtellar extended release they both come in generic which is Oxcarbazepine or Lamictal/Lamotrigine. Like Zonegran/Zonisamide they all can control Generalized or Focal seizures.
What type of seizures do you have?
Are you interested in changing to another drug or adding a second one.
Jake

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I have seizures that last 20 to 30 minutes at a time.The first year I had one in 2014 and it was a year before I had another one.As time go's on I have having them more.I have them about a month apart now.I am taking 500mg keppra twice a day,I don't know if the pill gets weaker over time.Does anyone know this.I need to find a good doctor that might want to help me a little.

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You may need to increase your dose. I am currently taking 1,000mg of Extended Release Keppra, 200mg of Lamictal in the morning and 1,500mg of Extended Release Keppra, 200mg of Lamictal in the evening. You may need to increase your dosage. I have gran mal seizures that only last 1-2 mins. It takes about 30 minutes to come to. Good luck finding a dosage that works.

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I have had grand mal seizures since the mid 970s. Went through several different drugs since then. Once I started taking carbamazepine (brand name tegretol) XR 400 mg 3 times daily, I have not had any seizure activity since the mid 1990s. While doing research is good, the best person to discuss this with is your neurologist.

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@1710dave

I have seizures that last 20 to 30 minutes at a time.The first year I had one in 2014 and it was a year before I had another one.As time go's on I have having them more.I have them about a month apart now.I am taking 500mg keppra twice a day,I don't know if the pill gets weaker over time.Does anyone know this.I need to find a good doctor that might want to help me a little.

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@1710dave
I haven't heard that tolerance is a problem with Keppra but everyone is different so who knows for sure. Most people I talk to who have their seizures controlled have been on the same dose.
Usually tolerance occurs with the benzodiazepines like Atavan, Valum, Klonopin. I was on Klonopin and my dose was raised to almost the maximum dose. Have you asked your neurologist about increasing your Keppra? Virtually everyone I know takes more than 1,000 mg. Is Keppra all you take?
Jake

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@jakedduck1

@1710dave
I haven't heard that tolerance is a problem with Keppra but everyone is different so who knows for sure. Most people I talk to who have their seizures controlled have been on the same dose.
Usually tolerance occurs with the benzodiazepines like Atavan, Valum, Klonopin. I was on Klonopin and my dose was raised to almost the maximum dose. Have you asked your neurologist about increasing your Keppra? Virtually everyone I know takes more than 1,000 mg. Is Keppra all you take?
Jake

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My son takes Lamotrigine (spelling?) 2x a day and Zonisamide (sp?) 1 big dose at night for his seizures. He has had some Big seizures…shaking, falling down… but these medicines, or something, are helping him to only have only occasional 'frozen seizures' now. These 'freeze' him in his tracks and affect his memory of the whole time he was frozen And the sleeping/waking period of up to 2 hours afterwards. Luckily, he can be led to a place to lie down and slowly wake up from this which is very fortunate for us all as he's a big guy. When he wakes up, he has totally lost those hours from his memory.

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@beccahp

My son takes Lamotrigine (spelling?) 2x a day and Zonisamide (sp?) 1 big dose at night for his seizures. He has had some Big seizures…shaking, falling down… but these medicines, or something, are helping him to only have only occasional 'frozen seizures' now. These 'freeze' him in his tracks and affect his memory of the whole time he was frozen And the sleeping/waking period of up to 2 hours afterwards. Luckily, he can be led to a place to lie down and slowly wake up from this which is very fortunate for us all as he's a big guy. When he wakes up, he has totally lost those hours from his memory.

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@beccahp
By ‘Frozen Seizures’ do you mean Absence Seizures?
I was curious how your son acted during these seizures?
Does he just stare blankly as though he’s daydreaming or does he have some slight movements? Can he respond.
Has the doctor used terms like Absence, Focal, Focal Aware, Focal Impaired? Approximately how long do they last?
regarding his memory loss, is that just temporary or is it permanent? If he’s having absent seizures memory loss is usually short-term. i’m curious if he’s not having oh cool impaired/complex partial seizures primarily because of the sleep time. With epilepsy there always seems to be more questions than answers.
Take care,
Jake

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@jakedduck1

@beccahp
By ‘Frozen Seizures’ do you mean Absence Seizures?
I was curious how your son acted during these seizures?
Does he just stare blankly as though he’s daydreaming or does he have some slight movements? Can he respond.
Has the doctor used terms like Absence, Focal, Focal Aware, Focal Impaired? Approximately how long do they last?
regarding his memory loss, is that just temporary or is it permanent? If he’s having absent seizures memory loss is usually short-term. i’m curious if he’s not having oh cool impaired/complex partial seizures primarily because of the sleep time. With epilepsy there always seems to be more questions than answers.
Take care,
Jake

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Hi Jake,
Zach's Neurologist called them Frozen Seizures and said only part of his brain was frozen or affected. Yes, he stares blankly and all his movements are frozen in place. One time, he was talking with his sister on the phone and just froze with it in front of his mouth and staring blankly while sister was trying to get his attention from the phone. She sort of figured out what had happened.
They last from as short as 3 minutes to 15 or so, I guess.
He does not respond at all during these, but is able to be led by the arm to a place to lie down. If he is already laying in the recliner, with no resistance, I can rearrange his head/arms for more comfort.
The memory of those frozen minutes do not come back to him but he can sometimes recall what was happening just before it happened.
Yes, lots more questions than answers, unfortunately. 🙁
All the best to you,
🙂 Beccahp

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@beccahp

Hi Jake,
Zach's Neurologist called them Frozen Seizures and said only part of his brain was frozen or affected. Yes, he stares blankly and all his movements are frozen in place. One time, he was talking with his sister on the phone and just froze with it in front of his mouth and staring blankly while sister was trying to get his attention from the phone. She sort of figured out what had happened.
They last from as short as 3 minutes to 15 or so, I guess.
He does not respond at all during these, but is able to be led by the arm to a place to lie down. If he is already laying in the recliner, with no resistance, I can rearrange his head/arms for more comfort.
The memory of those frozen minutes do not come back to him but he can sometimes recall what was happening just before it happened.
Yes, lots more questions than answers, unfortunately. 🙁
All the best to you,
🙂 Beccahp

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@beccahp
“They last from as short as 3 minutes to 15 or so, I guess.”
The timeframe you mention 3 to 15 minutes are those times when he is actually seizing or until recovery?
Jake

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@beccahp

Hi Jake,
Zach's Neurologist called them Frozen Seizures and said only part of his brain was frozen or affected. Yes, he stares blankly and all his movements are frozen in place. One time, he was talking with his sister on the phone and just froze with it in front of his mouth and staring blankly while sister was trying to get his attention from the phone. She sort of figured out what had happened.
They last from as short as 3 minutes to 15 or so, I guess.
He does not respond at all during these, but is able to be led by the arm to a place to lie down. If he is already laying in the recliner, with no resistance, I can rearrange his head/arms for more comfort.
The memory of those frozen minutes do not come back to him but he can sometimes recall what was happening just before it happened.
Yes, lots more questions than answers, unfortunately. 🙁
All the best to you,
🙂 Beccahp

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Hi @beccahp
The term frozen seizures is also new to me. Thank you for explaining it to us.
I have temporal lobe epilepsy and during my focal complex seizures I also freeze. I can not talk during or right after the seizure and can also not respond. My husband takes me to lie down or to sit down. My memory of those frozen seconds or minutes do not come back either and in some circumstances I can not even recall what was happening before the seizure. I understand that is common in most seizures (except auras – focal simple seizures), or is not? I had one experience of generalized seizure and also frooze during it.
Kind regards,
Santosha

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@santosha
I was curious if you knew you had a seizure without anyone telling you.
even though I was on the floor sore, bitten tongue, Paramedics around or firemen or were in an ambulance someone always had to tell me what happened except the time I had a simple partial/aura. I still remember that experience.
Take care & no more seizures,
Jake

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@jakedduck1
Hi Leonard,
Hope all is well with you!
Answering your question. I know when I have a seizure without anybody telling me because I feel changes in my body that start all of a sudden, My seizures always start with an aura (when my awareness is not yet impaired), mostly evolving to focal complex seizures (then my awareness gets impaired). I believe it is due to the auras that I know when I have a seizure. As you have also mentioned, you also remember you had a seizure when it starts with an aura. It seems this explains when one remembers or not he or she had a seizure, don't you think so?
Since I started to have my seizures, when I was a teenager, I have had the same feelings during a seizure. At that time I did not know that I had epilepsy, calling them hallucinations or visions with déjà vu experiences, that I can not recall after the seizure. With the yoga practice, I have started to pay more attention to my body, something Dr. Cynthia Li also recommends in her great book called Brave New Medicine in the chapter of Inhabit your Body. Very recently I have noted that at the start of a seizure, my body is involved in a wave of sudden heat, which might explain my feverish state after my seizures. This is something I will discuss in my next appointment at the end of this month with my doctor.
Have a nice weekend!
Santosha

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