Anyone experience side effects while decreasing Keppra?

@ahernandez Hi! I know that this post has been created a while ago but I am curious to know how have you been since then? I also been seizure free for over a year and I tapered down slowly for a 4 weeks period as per instructed by my epilepsy doctor. My only seizure happened after a stroke. I never had epilepsy/seizure before. Since the exact day that I completely stopped taking Keppra (went from 250mg bid to 0 after 2 weeks), I started to feel numbness and muscle spasms all over my body. The spasms have reduced since then but the numbness is still there. It’s been 4 weeks now and I have been trying to get answers as if this could be results of weaning off Keppra but no luck. I have an EEG planned next week, so hopefully this will provide some answers if not clarity for the next steps. I thought your post is the only information that I can relate to. Thanks in advance, I hope you are doing well now.

I stopped taking my keppra over a year ago with no symptoms that I can remember. I have been on anti seizure meds since 1995, aweful Dilantin first, Keppra was a relief. Seizure free since tumor removal in 2009. Because of very persistent pain since procedure, extensive encephalomalacia, I've been on 3000mg/day of Gabapentin. I recommended to Dr's this was enough to stop taking the, now unnecessary Keppra. They came to agree with me when I told them I had already made the choice to stop 6 month's prior to discussing this with them... As I was saying, I don't remember anything specific, positive or negative, stopping the use of Keppra. If having seizures is the reason for taking Keppra, weaning off and taking cautious steps, is probably best and I hope your process brings you the relief you are probably looking for.

@boomarang
No doubt. I've been quite confused since getting out of hospital. I guess I better not reply for awhile.
Jake

Leonard I think you confused me with another Mayo Clinic Contact. I know another lady commented on forgetting some procedures. I also read the same. I did not forget anything while being medicated with KEPPRA in hospital. Thank you anyway for your concern. Take care & enjoy each day we are blessed with.

@boomarang
It's unfortunate some people have such reactions to some of these meds while others get along just fine. I'm not surprised you forgot those procedures but seizure medications frequently mess with ones memory.
Take care & good luck,
Jake

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!

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)

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.

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.

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.