1. < Epilepsy & Seizures

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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Chris Gautier OR Santosha | @santosha | Apr 13, 2023
In reply to @bunnyboy "Thanks, my seizures are Grand Mal. Usually in morning I have severe muscle strain, bitten tongue,..." + (show)
@bunnyboy

Thanks, my seizures are Grand Mal. Usually in morning I have severe muscle strain, bitten tongue, and little memory. Thank God I have a partner to help me. I start out with a loud yelp, he knows immediately. I breaks my heart he has to go thru this all. The last episode was 7 throughout the night, he was horrified, ER said call us immediately if it ever happens again. However, and a big however, so far has cost us $750.00 cash, and our insurance over 10 grand, that's a lot of money. They did Keppra intravenous immediately, lots of tests, and MRI, CT scan, etc., I was in ER for 7 Hours! I usually get one nocturnal seizure a month, first week of each month, then it's over for another 30 days. The reason I had such a bad episode this last time was I tried to cut back on the Carbamazepine as it has a half-life of 36 hours. I increased the Gabapentin to compensate as it has a half-life of 6 hours. The Carbamazepine had its revenge! That said I was only taking at night as it makes me so tired at work. Guess I won't be able to do that in future, Zombieland here I come, will see a new Neurologist tomorrow. Thanks for your comments! Cheers!

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@bunnyboy
Wishing you a good appointment with this new doctor. Crossing my fingers for you!
Santosha

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1 reply
bunnyboy | @bunnyboy | Apr 14, 2023

Read this again, thanks so much, valuable insights.....

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Chris Gautier OR Santosha | @santosha | Apr 17, 2023
In reply to @jakedduck1 "@santosha Yes, asking if wanderers are somehow capable of avoiding dangers although I walked onto a..." + (show)
@jakedduck1

@santosha
Yes, asking if wanderers are somehow capable of avoiding dangers although I walked onto a highway.
Why is Phenobarbital not so often tried when other drugs for Tonic-Clonic & Focal seizures fail?
Jake

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Hi Jake (@jakedduck1)
Just back from my appointment with my epileptologist.
I have asked him about Phenobarbital. He still prescribes it, but it is not his first choice as it leaves people doped and slowed down. He has told me that Phenobarbital has initially been developed in the early 1910s to help people with sleep. A doctor in a home in Germany has given this medication to all patients so that they could sleep and let him also sleep. This doctor has then observed that seizures in one patient with epilepsy have stopped with this medication. This was the way Phenobarbital was discovered as an anti-convulsant. Moreover, he also told me that Phenobarbital is less efficient than other drugs.
I have also asked about people with epilepsy who do wander, if it is frequent. He has told me that wander is something quite rare in people with epilepsy, but it can happen. He told me he had a patient who crossed the underground line once. People are not aware of the dangers they put themselves in, unfortunately.
Santosha

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Chris Gautier OR Santosha | @santosha | Apr 17, 2023
In reply to @bunnyboy "We'll see, https://health.usnews.com/doctors/christopher-calder-342612" + (show)

Hi @bunnyboy
How was your appointment with the new doctor last week? I do hope you got good surprises!
Santosha

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bunnyboy | @bunnyboy | Apr 22, 2023

Sorry for sort of dropping out, my Dr was wonderful, but unfortunately is semi-retired so may not be available for long. They got me with a specialist in medications with the hospital. Decided to keep me on Keppra for the moment, but, I just couldn't handle it. The Keppra and I just don't click. So I had a phone conference and they got me back on the Carbamazepine for the moment, but not the extended release. The new prescription releases immediately, as I have nocturnal seizures only for the moment. Thanks for the 'checking in with me'. Big hug!

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1 reply
1ellent | @1ellent | Apr 23, 2023
In reply to @downsynsz "@1710Dave, after my brother's EEG at the hospital did not reveal what lobe area of the..." + (show)
@downsynsz

@1710dave, after my brother's EEG at the hospital did not reveal what lobe area of the brain might be the origination point for the seizures, I researched and came across the website Epilepsy Society where they list 16-classes of anti-epileptic-drugs (AED's). There appears to be a variety of AED's, each class seems to have a different mechanism of action, effect on the brain, metabolism in the body, and some with similar side-effects. My brother has been on Keppra since 2014 and the therapeutic level (trough) for his 750mg BID is supposed to be between 4.0 - 24.0 mcg/mL. His blood tests have shown values of ~14.0 mcg/mL. The meds make him very drowsy and limits what we're able to do with him (physical/speech therapy, ROM, appts), even while bed-ridden. Because he cannot speak/communicate with us, we've read his facial and audible queues to try to gauge whether the meds make him feel very negatively. I expect the meds make him feel much like many others I've heard describe their experiences with Keppra. After the EEG at the hospital, the doctor prescribed an adjunct AED, zonisamide (100mg, 1X-eve). When we introduced the CBD oil earlier this year and lowered the dose of zonisamide to 50mg, he had a couple of grand mall seizures in one afternoon. This led us to think the zonisamide might be have a more significant role in control of seizures. We will re-visit the lower dose of zonisamide as we increase the CBD oil to determine if the oil side-effects he experienced can be managed. Our thoughts at this point are the CBD oil likely has less negative impact/damage on the body, short-term and long-term, than any of the AED's.

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I have been on zonisamide (zonegram) for over 13 years along with CBD/THC not one seizure. I take 100mg Z in am and 100mg Z around 10pm. Sleep like a baby. Sometimes a nap but I am 67! I had gammaknife in 2008 to fix an AVM but I will not chance another seizure.

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1 reply
salpal01 | @salpal01 | Apr 23, 2023

Hi
Is there anyone out there who has nocturnal seizures ? Am keen to know

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Chris Gautier OR Santosha | @santosha | Apr 23, 2023
In reply to @bunnyboy "Sorry for sort of dropping out, my Dr was wonderful, but unfortunately is semi-retired so may..." + (show)
@bunnyboy

Sorry for sort of dropping out, my Dr was wonderful, but unfortunately is semi-retired so may not be available for long. They got me with a specialist in medications with the hospital. Decided to keep me on Keppra for the moment, but, I just couldn't handle it. The Keppra and I just don't click. So I had a phone conference and they got me back on the Carbamazepine for the moment, but not the extended release. The new prescription releases immediately, as I have nocturnal seizures only for the moment. Thanks for the 'checking in with me'. Big hug!

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Hi @bunnyboy
Great to have news from you and to know you had a wonderful experience with this new doctor. Do not now think that he will be retired in some time, enjoy his caring, expertise, and his time in the office.
How has been with Tegretol those days? Tegretol was the AED that was the less hard for me to support, but still on a very low dosage. If I were in your place, I would ask him his opinion on Medical Cannabis. It might also be an alternative to you as it has been to me.
I do hope you have days with a larger smile on your face. Let's keep in touch!
Big hug to you as well.
Santosha

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Chris Gautier OR Santosha | @santosha | Apr 23, 2023
In reply to @1ellent "I have been on zonisamide (zonegram) for over 13 years along with CBD/THC not one seizure...." + (show)
@1ellent

I have been on zonisamide (zonegram) for over 13 years along with CBD/THC not one seizure. I take 100mg Z in am and 100mg Z around 10pm. Sleep like a baby. Sometimes a nap but I am 67! I had gammaknife in 2008 to fix an AVM but I will not chance another seizure.

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@1ellent, curiosity, have you just been on CBD/THC without taking any AED to control your seizures?
Thank you and have a nice evening
Santosha

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