1. < Epilepsy & Seizures

Anyone experience side effects while decreasing Keppra?

Posted by ahernandez @ahernandez, Oct 7, 2018

Hey all...I have been seizure free for a little over a year now. My doctor has me decreasing my dose of Keppra a little each week. Since doing this I have felt nauseous occasionally, have had shakyness/twitching (not visible, feels like its happening on the inside), and just weird feelings (hard to describe). I feel like this may be withdrawal effects...has anyone experienced this while decreasing this medication?
Thank you!

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Chris Gautier OR Santosha | @santosha | Oct 30, 2023
In reply to @cashelton "I am caregiver to my x-husband. He is in a memory care facility and they sent..." + (show)
@cashelton

I am caregiver to my x-husband. He is in a memory care facility and they sent him to a "behavioral clinic" due to "aggression", which I have to question right off the bat. This clinic is almost two hours from my home, and the first time I made the trip, I was stunned at his condition. In a wheelchair, could barely lift his head, did not know who I was. They claimed they took him off all meds to start "fresh". Ok - they're the professionals. Two weeks later I went back - now he's worse. Now he's on Keppra because of his history of seizures. Huh? He's never had seizures. They found him unresponsive once - sent him to the hospital, which is literally next door, they sent him back saying they could find nothing wrong. This could be the "seizure" they are basing this on. I am outraged, but they tell me this is his "new normal". They send him to a new memory care facility that I had found. But now he is always in a wheelchair, doesn't talk, has no idea who I am, won't even open his eyes. These new people have no idea what he was like, so to them, this is normal. I explain to them that it is absolutely NOT normal, and make my wishes know to wean him off Keppra. He was getting 500mg twice a day, and the NP this past Monday started 500 in AM, 250 in PM. On Wednesday he is now severely dehydrated, so he is put in the hospital. I don't know if it is the fluids, the 250mg decrease in the Keppra, or a combination, but although very thin and in a hospital bed, he is alert, talking, and knows who I am. And eating. Keppra seems like an awfully powerful drug to put someone on when the clinicians didn't know his history. To me, it honestly looked like they gave it to him to keep him quiet. He was obviously over medicated to my eyes. The NP at his new facility wants to decrease 250mg every two weeks, and from what I am reading here, seems right. Any opinions from users? Thanks for helping me out - I have learned so much from reading these kind of forums.

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Hi @cashelton
I did not experience Keppra, but I also became an ill person in my bed most of the time while taking Vimpat. Since the neurologist at that time did not want to change to another AED, I went to get a second opinion. It was very worthwhile and I have changed doctors and medication.
Stay strong! My vibrations to both of you.
Chris (Santosha)

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cashelton | @cashelton | Oct 30, 2023
In reply to @jakedduck1 "@cashelton I've had a seizure disorder for 57 years and the limited information you provided, especially..." + (show)
@jakedduck1

@cashelton
I've had a seizure disorder for 57 years and the limited information you provided, especially about Keppra doesn't sound consistent with Epilepsy, seizures, or Keppra use to me. Hopefully some Keppra users will contribute some of their experiences.
Drowsiness, mood disorders including aggression and muscle weakness are side effects of Keppra. Thirst is another side effect. Is your ex vocal and able to convey his needs and concerns regarding hunger, thirst, pain or other needs? Perhaps the Keppra caused him to be dizzy, another potential side effect, and the wheelchair is for his safety but it shouldn't cause him to not be aware. I'd be squawking too. His dose isn't that high but it depends on other conditions, medications and how sensitive he is to medications?
Was he given any of the usual tests for seizures like medical history, neurological exam, EEG, MRI/CT, cardiac or blood tests?
Vitamin B-1 may help improve his aggression. Do you know if he was found seizing, unconscious, postictal (confused) or asleep?
I hope you will keep us informed as to his condition/diagnosis.
Take care,
Jake

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Thanks for your reply. No, he can’t convey what he needs. He last lived in my home from 2020-23. No seizures, no epilepsy. I highly doubt the clinic did any of the tests you mentioned. They would have told me - I think. I am his MPOA. I’m pretty secure in saying they did not. It was just such a jolt to see him “zombie-like”, I was angry, sad, helpless. What do you think this drug would do to someone who did not need it? I hope he will continue to improve as the dose is decreased.

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osobear | @osobear | May 27 5:33am

In 2022 I fractured my skull and was put into an induced coma. When I first started to come out of the coma my body went into a fit, and I was put into the coma. when I come out of the coma the second time I saw my legs shaking. This was the first time in my life I had an epiletic fit. I have been on Keppra since then, but I have never had an fit since I came out of hospital in June 2022. I have had three brain scans and was told that I had a scar on my brain where i fractured my skull and over my central lobe. The side effects of Keppra has made me more forgetful, agitated irritated some times and lethargic. I seem very sensitive and not as emotionally strong as I prior to fractured and I project it when I feel uncomfortable with people. I am supposed to take keppra until November 2024 but I want to come off it now, as I feel I do not need it.

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Chris Gautier OR Santosha | @santosha | May 28 4:05am

Hi @osobear
Have you had a conversation with your doctor about taking Keppra off before it is programmed? Perhaps he could lower the dosage of Keppra a bit? If you feel uncomfortable with this doctor's treatment, go and check for a second opinion.
Have a nice day!
Chris (@santosha)

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1 reply
osobear | @osobear | May 29 2:46am
In reply to @santosha "Hi @osobear Have you had a conversation with your doctor about taking Keppra off before it..." + (show)
@santosha

Hi @osobear
Have you had a conversation with your doctor about taking Keppra off before it is programmed? Perhaps he could lower the dosage of Keppra a bit? If you feel uncomfortable with this doctor's treatment, go and check for a second opinion.
Have a nice day!
Chris (@santosha)

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Thank you for your advice Santosha, I will get in contact with the doctor this morning.

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1 reply
boomarang | @boomarang | May 30 5:33pm

I was only on KEPPRA in the hospital. It put me in a very dark place, hallucinations, hearing voices & music. I was accusing people of trying to kill me. The worst medication I have ever experienced. Doctor finally took me off KEPPRA. I underlined it in red in my Allergy section with Hallucinations beside it. I never want to come in contact with KEPPRA ever again. I cannot really even convey to you my experience with KEPPRA. Happy for you that you were able to benefit from it. Best wishes in your recovery.

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1 reply
boomarang | @boomarang | May 30 6:13pm

Addition to KEPPRA story. I am currently taking generic ZONISAMIDE 300mg capsule at bedtime. On this medication for five plus years. It has not stopped my seizures. It has made them less frequent. Approximately 5 per month. After much trial & error it has been the best medication for me so far. My seizures remain somewhat the same. Warm feeling in my stomach forcing a Metallic taste up into my mouth & waving of the right hand, shoulder & body jerks I fall asleep afterwards for about 1 hour. I have what I call Belly Dancers my stomach kicks like a baby inside. Doctors don't seem to know what causes this strange action. I have been diagnosed with Encephalitis of the Frontal Lobe. I thought this information might be helpful to someone. We are all unique in our own way. I will be 94 years young in June.

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boomarang | @boomarang | May 30 6:49pm
In reply to @jdernburg "I have been depressed for a number of years and I think Keppra is making it..." + (show)
@jdernburg

I have been depressed for a number of years and I think Keppra is making it worse. My neurologist has suggested other drugs but they list depression and weight gain as side effects so I've stuck with Keppra. I would like suggestions from other people who have tried other anti-seizure meds.

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I have been on Generic ZONISAMIDE capsule many years no side effects noticeable to me. NO weight gain. Currently on 300mg. at bedtime. Brand name is ZONEGRAN. Probably directed at bedtime as it may make you sleepy. I sleep well. I would never touch KEPPRA again from my horrible experience in hospital. Happy I was in hospital at the time under surveillance. My Neurologist prescribed generic SERTRALINE HCL TABLET 100mg. one time daily for depression. I take in morning. I am able to function very well. No side effects noticeable to me. You will see my current posts, I think 3 as a new participant under boomerang. I am learning a lot. Great input from all members.

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Chris Gautier OR Santosha | @santosha | Jun 4 11:03am
In reply to @osobear "Thank you for your advice Santosha, I will get in contact with the doctor this morning." + (show)
@osobear

Thank you for your advice Santosha, I will get in contact with the doctor this morning.

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Hi @osobear
Sorry for not replying earlier, I am on holiday and not checking my messages daily.
Could you get in contact with your doctor? If yes, how was it?
Chris (@santosha)

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hopefullibrarian | @hopefullibrarian | Jun 5 6:51pm
In reply to @boomarang "I was only on KEPPRA in the hospital. It put me in a very dark place,..." + (show)
@boomarang

I was only on KEPPRA in the hospital. It put me in a very dark place, hallucinations, hearing voices & music. I was accusing people of trying to kill me. The worst medication I have ever experienced. Doctor finally took me off KEPPRA. I underlined it in red in my Allergy section with Hallucinations beside it. I never want to come in contact with KEPPRA ever again. I cannot really even convey to you my experience with KEPPRA. Happy for you that you were able to benefit from it. Best wishes in your recovery.

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I agree. It's awful. In 2014 I was on it for one week then refused to take anymore because I couldn't think straight. In late 2020, I put on it again. It made me depressed, and there are huge holes in my memory from the time.

During a recent visit with my gynocologist, she asked when was the last time I had a pelvic exam and a mammogram. I told her it was about 10 years ago. Apparently my file showed that I'd had both in early 2021. When she told me what it said, my response was, "That's not right. I'm sure I'd remember something like that."

I went home and checked my records--she was right. They were both in January 2021, and I have absolutely no memory of either one. I'm on Lamotrigine now. I'd rather not be on anything, but I feel far better than I did with Keppra. Never again!

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