Anyone experience side effects while decreasing Keppra?

@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

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

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.

@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.

Please forgive me in advance if I come off strong but I’m very passionate about this subject. I advise you to get the soonest available appt and get off keppra immediately! This medication isn’t recommended for people who have a history of depression! My neurologist put me on keppra knowing I had a history of depression and it made it worse to the point where it made me suicidal and have rapid weight loss! I went from 130-108! And they had me on 1000mg! I myself had to taper down to 750mg because of my rapid weight loss plus I wasn’t getting any help only being ignored, patronized and gaslit as if I made up my own symptoms.. and the list of symptoms goes on! Absolutely Terrifying! I felt like I was literally dying! Zero compassion! they told me to wait out the rage and depression side effects and if I still had issues to seek a crisis center and speak to my primary doctor to be put on an antidepressant! I had to do my own research to find out the truth and after digging, there are so many people struggling with these horrific keppra side effects..More bad reviews than good.. and there’s also an FDA warning they don’t tell you about that causes serious rashes called “DRESS” etc. after I tapered it helped instantly and I gained weight! But not out of the woods yet till I’m off this evil stuff for good and opt for something safe! I hope this helps and spreads awareness! Take care! I hope you get the help you need and deserve!

I had two seizures days apart randomly in my sleep and had normal exams and zero explanation and they put me on keppra. I’ve had the headaches, the “keppra rage”, depression, suicidal thoughts, anxiety/panic attacks, rapid heart beat, the list goes on! Each symptom more terrifying! I was on 1000mg and went from 130-108 and felt like I was literally dying! I had to self taper from 1000mg to 750mg because my doctors weren’t listening. Wasn’t until I did my own research and digging where I learned I’m not alone in dealing with the horrible side effects of keppra! It feels so good to know I’m not alone in this! Don’t let doctors gaslight you or make you feel crazy or ignored, Knowledge is power and gave me peace of mind. The tapering has helped with the headaches dramatically and weight too but regardless I’m trying to taper off it completely and find something safe. I hope this helps.. take care!

Oops this response was meant for a different post but I can’t delete it now since there isn’t an option to do so but I hope it still helps whoever reads🤷🏼‍♀️

Hi @cdwells
I loved your words. I remember the words of my first neurologist who diagnosed me with epilepsy and started treatment for it. He first prescribed Lamictal and I had severe side-effect (severe insomnia). His answer was "hang on with it". Zero compassion as you have all said. He hated when I started to access the Epilepsy Foundation website and study more on my epilepsy syndrome. When he forbid me with my learning, I saw it was time to change doctors. Knowledge of our epilepsy is for sure power and very important to everyone with this condition as you have well said. Good doctors will not feel threatened by patients who learn about their condition, on the contrary, they might even appreciate it.
Giving you all a recent example of how important it is to know well about our condition. This last Friday I had a colonoscopy and endoscopy exam. Usually, the preparation of this exam is done at home at no risk. But after reading the preparation, I called the hospital, asking if there could be any decrease of sodium in the blood, a dangerous trigger to seizures to many of us. The answer was YES. I then phoned my gastro doctor and asked her to do the preparation of those exams at the hospital and have sodium replacement during all the preparation, not putting me at the risk of having a tonic clonic seizure as it has already happened in the past.
Doctors from other specialties might not know much about epilepsy, putting us in risky situations. Knowing about your seizure triggers is something very essential to all of us. For those interested, I recommend the workbook "Taking Control of Your Seizures" from Andrews-Reiter. Here is the link: https://www.amazon.com/Taking-Control-Your-Seizures-Treatments/dp/019933501X
Chris (@santosha)

@cdwells
I am very happy to know you are much better nowadays 🙏🙏🙏 and searched for knowledge yourself. I hope your words help many who are struggling with their epilepsy treatments.
Are you being treated by an epileptologist? This has made a huge difference in my treatment and management of seizures.
Wishing you all the best!
Chris (@santosha)