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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tfrap369 | @tfrap369 | Sep 1 12:22pm
In reply to @jakedduck1 "@tonyde Your very lucky you got your seizures under control in a few years. Some of..." + (show)
@jakedduck1

@tonyde
Your very lucky you got your seizures under control in a few years. Some of these Neurologists are dumb as a rock.
When you had a seizure and went to the hospital, did you go into status epilepticus where your seizure lasted longer than normal and they had to give you possibly various medicines to stop them or did they put you into an induced coma?
I too five different seizure meds a day. I originally took Dilantin, it was the go-to drug 60 years ago because there wasn't much of a choice back then, 4 or 5 seizure meds that I know of and almost 40 today.
You mentioned “One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure drugs to bring on a seizure and determine their cause.” Are you talking about an Epilepsy Center to locate the seizure focus (where the seizure begins) which is different than the cause?
Take care,
Jake

Jump to this post

When I was being treated at Yale they put me in a controlled environment without any seizure medication in hopes they could witness me having a seizure. Unfortunately, I wasn’t able to have a seizure in a controlled setting. I believe that when you are in such a controlled setting without the normal every day stress, etc you can’t have one.

REPLY
tfrap369 | @tfrap369 | Sep 1 12:30pm
In reply to @tonyde "It took several years and 3 neurologist to get my seizures under control. It was try..." + (show)
@tonyde

It took several years and 3 neurologist to get my seizures under control. It was try this drug or that one at increasing dosages. Some made me sick, others exhausted. Lamictal gave me some control, but not 100%. My current neurologist recommended adding Trileptal to my Lamictal instead of changing one for the other. It did wonders.

I foolishly tried to reduce my dosage hoping to eliminate both. That caused a seizure bad enough to put me in the hospital.

I was under full control until I had a bad fall in Walmart last year and my nightmare returned along with a few hospital stays.

Hospital-based neurologists questioned the use of 2 similar drugs, claiming there's no need for both, one or the other should work. I ask does mixing the 2 put me at a greater risk than taking only 1, they say no, my response is "why would anyone risk changing".

One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure drugs to bring on a seizure and determine their cause. That seems risky and a little crazy to me.

Jump to this post

Yes your doctors are trying to make you have a seizure in a controlled environment. When I’ve gone into such a setting the doctors normally hook you up to an EEG to see what part of your brain is active when you have a seizure. Unfortunately when in such a setting I was never able to have a seizure. Most doctors do try you on additional seizure medication to see if they will help. But as you’ve said the two medications although similar medications worked for you. So if it’s working why question it. I understand where the other neurologist is coming from. However despite the medication being similar it works for you. That’s what I would tell that neurologist. I understand why’d you question it because why take additional medication if you don’t need to.

I wish you nothing but the best in sorting through all this.

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tfrap369 | @tfrap369 | Sep 1 12:31pm

If you google seizure medication similar to Keppra I’m sure you’ll come up with several medications. Good luck with your search

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tfrap369 | @tfrap369 | Sep 1 12:33pm
In reply to @santosha "Hi @tfrap369 Can't be something being done for dry mouth so as not to harm your..." + (show)
@santosha

Hi @tfrap369
Can't be something being done for dry mouth so as not to harm your teeth any longer? Perhaps your doctor could prescribe some medications to combat those side-effects, so that you can stay on Keppra.
Chris (@santosha)

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Yes I was prescribed a medication for my dry mouth but, it helps a little but not significantly. Thank you for your response

REPLY
1 reply
Chris Gautier OR Santosha | @santosha | Sep 1 7:13pm
In reply to @tfrap369 "Yes I was prescribed a medication for my dry mouth but, it helps a little but..." + (show)
@tfrap369

Yes I was prescribed a medication for my dry mouth but, it helps a little but not significantly. Thank you for your response

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I am sorry to hear about that, @tfrap369 . Have you also talked to your dentist about it?
Chris (@santosha)

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sheritn | @sheritn | Sep 2 8:00am

I haven’t shared on here before but I wanted to encourage you on the trileptal and lamictal. After struggling with many different medications giving me side effects or not working I have been nearly seizure free with that combination. One of them by themselves didnt help, I have to make sure I take both of them. I also take klonopin sometimes if I feel like I may have a seizure or are in an environment with lots of stimulation.

REPLY
tonyde | @tonyde | Sep 2 10:23am
In reply to @jakedduck1 "@tonyde Your very lucky you got your seizures under control in a few years. Some of..." + (show)
@jakedduck1

@tonyde
Your very lucky you got your seizures under control in a few years. Some of these Neurologists are dumb as a rock.
When you had a seizure and went to the hospital, did you go into status epilepticus where your seizure lasted longer than normal and they had to give you possibly various medicines to stop them or did they put you into an induced coma?
I too five different seizure meds a day. I originally took Dilantin, it was the go-to drug 60 years ago because there wasn't much of a choice back then, 4 or 5 seizure meds that I know of and almost 40 today.
You mentioned “One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure drugs to bring on a seizure and determine their cause.” Are you talking about an Epilepsy Center to locate the seizure focus (where the seizure begins) which is different than the cause?
Take care,
Jake

Jump to this post

I was unconscious for 8 hours during the seizure that caused my most recent hospital. I don't know if it was one seizure or multiple seizures. My hospital record states I had blood and urine tests, chest X-ray and brain CT scan. I have no memory of any of them.

The hospital neurologist wanted me to be put in the same hospital and have seizures brought on under the safety of a hospital environment. The purpose was to determine the cause and extent of my seizures to be determined by another neurologist with an epilepsy backgound.

My wife and I suspect it was more money oriented than medical care.

REPLY
hillsboro | @hillsboro | Sep 2 11:58am
In reply to @tfrap369 "Thank you for your response. I’ll talk to my neurologist about this when I see him...." + (show)
@tfrap369

Thank you for your response. I’ll talk to my neurologist about this when I see him. Initially I was being treated at Yale but once everything was stable I went to a different doctor.

With respect to the dry mouth, yes I’ve tried everything to and treat that. Unfortunately nothing works.

Jump to this post

My dentist suggested medical tape to tape lips together vertically to help keeps lips together to at least help at night. She says she does it and it’s been very helpful. I spent 7 days in the Mayo Epilepsy Monitoring Unit to see if I could have a seizure so they could try and figure out where my seizures started and see if I was a candidate for brain surgery to stop my seizures. Actually that’s not that uncommon. I did not have a seizure. But they discovered I have seizure activity across my brain so I was not a candidate for surgery. I was monitored 24/7 electronically in case of a seizure. I have been on 6 different meds. Keppra made extremely depressed. Currently I am on Lamictal and just started Vimpat as an adjunct. I like Lamictal because of no side effects. I just started Vimpat and am struggling with initial side effects that are suppose to subside. I guess we’ll see. If any doctor recommends an epilepsy monitoring unit I’d do it again in a heartbeat. I have the greatest doctor at Mayo. Same doctor for 30 years. I’m lucky.

REPLY
earlylonghauler | @earlylonghauler | Sep 10 7:29am
In reply to @tonyde "It took several years and 3 neurologist to get my seizures under control. It was try..." + (show)
@tonyde

It took several years and 3 neurologist to get my seizures under control. It was try this drug or that one at increasing dosages. Some made me sick, others exhausted. Lamictal gave me some control, but not 100%. My current neurologist recommended adding Trileptal to my Lamictal instead of changing one for the other. It did wonders.

I foolishly tried to reduce my dosage hoping to eliminate both. That caused a seizure bad enough to put me in the hospital.

I was under full control until I had a bad fall in Walmart last year and my nightmare returned along with a few hospital stays.

Hospital-based neurologists questioned the use of 2 similar drugs, claiming there's no need for both, one or the other should work. I ask does mixing the 2 put me at a greater risk than taking only 1, they say no, my response is "why would anyone risk changing".

One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure drugs to bring on a seizure and determine their cause. That seems risky and a little crazy to me.

Jump to this post

“One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure drugs to bring on a seizure and determine their cause.” I believe this is called a “sleep study” and it can reveal a lot of info on what type of epilepsy you have, and where in the brain seizures originate. I had one done about a year after my diagnosis. Wish I’d done it sooner. They put a series of electrodes on your head to capture any activity. I “performed” on my first night so was able to go home after a day. We now know what type of epilepsy I have, and where my seizures originate. This gives my neurologist more info on meds and treatments that may work.

REPLY
1 reply
tonyde | @tonyde | Sep 10 11:12am
In reply to @earlylonghauler "“One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure..." + (show)
@earlylonghauler

“One hospital-based neuroloist suggested I be put in the hospital for 5 days with no seizure drugs to bring on a seizure and determine their cause.” I believe this is called a “sleep study” and it can reveal a lot of info on what type of epilepsy you have, and where in the brain seizures originate. I had one done about a year after my diagnosis. Wish I’d done it sooner. They put a series of electrodes on your head to capture any activity. I “performed” on my first night so was able to go home after a day. We now know what type of epilepsy I have, and where my seizures originate. This gives my neurologist more info on meds and treatments that may work.

Jump to this post

Do you know how real the risk is? I want to have it but concerned over the risk. I foolishly tried to reduce my medication a few years and it put me in the hospital I had another seizure in the hospital and overheard the nurse telling the neurologist that they called in the stroke team.

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