Anyone experience side effects while decreasing Keppra?

@janwill Good Morning
I'm so happy to hear that your son continues to be seizure-free! 🙏
When I was dealing with nausea from my medication, my doctor suggested eating smaller portions at each meal but having more frequent meals throughout the day. Perhaps this approach might help your son too.
During the more challenging moments in my treatment, I found it helpful to take things one day at a time and celebrate every small victory. It really gave me extra strength to keep going.
I hope your son's nausea is temporary and that he continues to stay seizure-free. Please feel free to share updates when you can – I'd love to know how he's doing.
Fingers crossed for him! 🤞
Chris

@santosha
Hi Chris
I think he has just been ignoring it and hoping it doesn't occur again. He has weaned from 1000mg a day to 500 a day and so far no seisure....keeping a close eye and fingers crossed

@janwill Good Morning!
Welcome to the Epilepsy & Seizures group at Mayo Clinic Connect!
I did some quick research, and it looks like some patients do experience nausea when reducing Keppra. Interestingly, I had the opposite experience—I actually felt much more nauseous when my dosage was higher. I started at 500 mg twice a day, and my doctor gradually reduced it because of side effects. I feel so much better now with my lower dose.
As my doctor always says, every patient is unique!
How has your son been managing the nausea? Have you been able to check in with his doctor about what might help ease it?
Chris

yes , my son was nauseous while reducing keppra. I am trying to find out if this is a common side effect...

@tink4iggy - thanks for sharing your experiences going off of levetiracetam (Keppra). How have you been feeling lately? Are you continuing to be seizure-free?

@mevy111 - glad to hear your muscle spasms reduced. Have you had more muscle spasms in the last month or two? How has the numbness you mentioned been lately? Did your doctor have any input on whether these were effects of weaning off your levetiracetam (Keppra)?

@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)

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)

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🤷🏼‍♀️

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!

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!