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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@santosha

Hi @tonyde
I am very sorry to hear about this experience you had, as this could have been avoided. But now, take good care of yourself, be kind to your body and mind, and rest.
My best vibrations to you!!!
Santosha

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Thank you, it helps to hear that.

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@tonyde

Be careful reducing or eliminating meds, I had a grand mal seizure when I missed my meds 24 hours.

I was hospitalized overnight with an unrelated issue. It was the weekend and they couldn't get approval for my seizure meds. They refused to give it to me all the next day and made me feel like a drug addict when I kept asking for it. I had a grand mal seizure when I got home that night. I had difficulty talking and unable to walk with out help for 24 hours. I take 600 mg of Trileptal and 400 mg of Lamictal

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Mine were different. I passed out. So doc put me on 1000 mg a day. Serbs like a lot. I reduced it myself to 500. Have t had an episode on 14 years . Good luck to you

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@tonyde

Be careful reducing or eliminating meds, I had a grand mal seizure when I missed my meds 24 hours.

I was hospitalized overnight with an unrelated issue. It was the weekend and they couldn't get approval for my seizure meds. They refused to give it to me all the next day and made me feel like a drug addict when I kept asking for it. I had a grand mal seizure when I got home that night. I had difficulty talking and unable to walk with out help for 24 hours. I take 600 mg of Trileptal and 400 mg of Lamictal

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My heart goes out....I've experienced the same feeling of being a street addict when I try to explain the need for my seizure meds and when I need to take them~!! Now, if I know I'm going to the hospital...I've been known to take a days supply to cover myself for 24 hours. I'm 82 now..seizure free....but want to stay that way...and as you get to be my age you aren't concerned with the hospital's reaction~!!😕💞

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@grammy82

My heart goes out....I've experienced the same feeling of being a street addict when I try to explain the need for my seizure meds and when I need to take them~!! Now, if I know I'm going to the hospital...I've been known to take a days supply to cover myself for 24 hours. I'm 82 now..seizure free....but want to stay that way...and as you get to be my age you aren't concerned with the hospital's reaction~!!😕💞

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Hi
Since Keppra has been developed there has been atleast 3 other epilepsy drugs developed so I would go back and see your neuroligist so that he can work out what drug would suit you best
Epilepsy treatments have come a long way since the 50's

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@salpal01

Hi
Since Keppra has been developed there has been atleast 3 other epilepsy drugs developed so I would go back and see your neuroligist so that he can work out what drug would suit you best
Epilepsy treatments have come a long way since the 50's

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You are absolutely right!! Especially some of the testing, it bordered on barbaric.
What happened in my case was that the mega-doses of Prednisone that I had to take when I was diagnosed with GCA in 2019--changed my treatment. I was on 125mg per day in an attempt to save the sight in my right eye, I lost the left overnight. After 45 years, seizure free and on a maintenance dose, I started having auras--I remember that feeling so well.
I was living alone at the time and I called my neurologist and said very firmly..."I cannot have a seizure because I know my family will be really concerned about my well-being. Please do something!"
I wanted to stay independent..I was almost 79.
I was given IV Keppra and dropped to 80mg of methylprednisolone. I was in the hospital for a few days to be monitored.
All ended well, no seizure, and I'm quite thankful for my right eye....I'm fine and have full vision there now. I just saw my neurologist today, and I just don't want to rock a boat that is sailing smoothly at age 82. He agreed. There are some other meds I've gathered I'm looking forward to junking.😕
I think it is wonderful how far treatments have come and you gave me some great advice. Thanks!💞

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Hi grammy
whatever you do don't ever go onto Sabril as it's a very nasty drug. Most oeople get blurred vision on it and some got memory loss - I ended up with memory loss and demanded to be taken off it, My new neuro put me on Keppra and I feel great. I have nocturnal seizure so I need to get a seizure watch to wear to bed as my seizures are deffinately changing I don't even wake up with a tension headache anymore. I'm 65 and am very contented these days it just feels weird now that my life doesn't revolve around coping with these awful seizures.
Glad things are working out for you
Sal

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@salpal So good to hear that!! Keppra has worked just fine for me too. My first seizure was as a 15-year-old in 1955. The trial and error period went on for almost two years, and lots of absence seizures before I had control. Then I only had a few here and there until 45 years ago. It sounds like your under good care. I did too at Children's Hospital in Boston, Dr. Caesar Lombroso!
He was brilliant and since his daughter had seizures his motivation was so sincere and he was so committed to every patient.
You said, "feels weird now that my life doesn't revolve around coping with these awful seizures." Weird can be a good thing, right?💞

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Ask you doctor about:
ONFI
Lamictal, and
X-COPRI

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@santosha

Hi @1710dave
There are many anti-seizure medications on the market. Have you tried another medication besides Keppra? As mentioned by others you should talk to your doctor about it, because as far as I know there are medications that are more appropriate to focal epilepsy and others to generalized epilepsy.
If you have tried two anti-seizures medications and you did not control your seizures or did not tolerate the medication, it is best to have an appointment at an epilepsy center. After you have tried two medications and did not have success, the chances of controlling seizures through medication are lower than 5%.
I myself have tried 6 different medications that I did not tolerate or did not control my seizures. However, doctors continued to push me other anti-seizures medications. This year, I decided to have an appointment at Mayo Cinic Epilepsy Center, something I should have done earlier. As I already suspected, I have refractory epilepsy and my chances to control seizures through medications are very low.
Best of luck to you!

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Have yo asked about X-Copri ? It seems to work fairly well for me.

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Hi @meilin982
Thank you for the suggestion. My doctor (epileptologist) does not think it is worth trying more AEDs, after having tried 6 different AEDs and having a very bad experience. It is clear to him that my epilepsy is refractory and that I am very sensitive to those medications (AEDs). I have adapted myself well to CBD from medical cannabis and a gluten-free diet, having very light seizures nowadays (about 2 focal seizures a month). I am smiling again to life. But your suggestion might be useful for others. Thanks for sharing!!! 🙂
Santosha

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