I know this post is quite a few months old, you can disregard this message if you like. I have weaned off of Keppra after an extended period of time and my experience is below:
When I was a teen, I was on Dilantin for a time, it didn't work and I hadn't been taking it long before I was taken off of it and don't remember any withdrawals. I was put on Lamotrigine and was on that for about 4-5 years and then it seemed to lose effectiveness so I was placed on Levetiracetam, the Keppra genric, 500mg twice a day.
Keppra worked well, but I absolutely hate the stuff. I took it for 10 years, no issues with seizures at all. Neurologists wanted me on it since it worked and my levels were far below the therapeutic dose. Some neurologists had asked me if I was ever interested trying to come off of the stuff. After a couple years of taking Keppra, I was hesitant about it as I was afraid my seizures would just return, but after 10 years - I was ready. I was done with all the side effects I believe the stuff caused me.
Anyway, I had a neurologist that in 2018 or 2019 said she would be willing to let me try to go off of Keppra. I weaned off of it a little slower than she mentioned I should. She wanted me to take it down 250mg at a time and that made me a bit nervous because it was so built up in my body. So, when I would cut it up, I would only take off about 125mg off of the capsule at a time. I took 3/4 of a pill in the morning and evening for one month and then I started cutting them in half for both doses for another 3 weeks. Then, I cut off 3/4 of the pill, leaving about 125mg left for both the morning and the afternoon for another 3 weeks. Then, I stopped taking the morning pill since there were times I'd skip the morning dose and not even realize it because I wouldn't feel any different - did that for about 3 more weeks. The final and most nerve racking step, I stopped the night dose, but I was taking 125mg only at night every other night and then I shortened that by one day each week that followed.
When weaning off of it, when I was taking about 1/2 off of a 500mg tablet morning and night, my joints ached so terribly. I had so much pain in my body, I could barely move. When I was sitting I was hurting and moving felt unbearable. That lasted for a few days and got better as the week went on. I had more energy, that's for sure - Keppra makes me pretty tired and it was nice to have an energy boost again. After a few weeks, the aches, pains, and nausea were gone.
While I was weaning off of the stuff, I was making sure to continue taking my Vitamin B-Complex w/Folate, Fermented Cod Liver/Butter Oil gel, and doing my best to stay away from high amounts of sugar and artificial sweeteners (as usual). I also took chlorella (must have a cracked cell wall to be effective) and that helped a lot. Months later, I started chewing up and swallowing a clove of garlic a day and that really helped me out! I still do it. Definitely had to be downing water to clear the stuff out of my body.
I was off of it for about a month before my next neurologist appointment. Their pharmacist that came in asking about my medication gave me weird looks when I said the neurologist gave me permission to come off of my medication. She was like, "Uh...okay...no issues...?" And I said, "None." and she did her paperwork and left. Two other interns came in and they were like looking me over...like checking my eyes, reflexes, teeth, and just talking to me and though the whole thing was a fluke or something. The neurologist marked me as, "No follow up needed."
I was medication free for about 15 months. I felt a whole lot better in the long run as far as more energy, less sugar cravings, and less achy joints and bones. Unfortunately, last month I came down with COVID-19. I think I had it for a few days before I had a seizure because my sense of smell was gone and I was super tired. I didn't feel good and I stayed home. I had a seizure one evening and hit my chin on the kitchen floor. That was about a month ago now and my chin is still sore, my jaws are a lot better, but hurt terribly if any pressure is applied. I'm still on a soft food diet. It stinks, but at least it's getting better. That night, my husband said I wouldn't respond to him at all so he called my parents and I woke up to their voices. I guess it makes sense because I've never had a seizure around my husband before, not in our 10 years of marriage. When I was growing up, my parents were doing whatever they could to help me out and take me to appointments and would sit by me while I had seizures and such.
The next day, I had status epilepticus, 3 more seizures back-to-back and they didn't seem to be stopping. My parents were over again early that morning to see how I was doing and my dad ended up calling the ambulance since I had seizures while they were there that didn't seem to be stopping.
I hardly remember anything about the hospital. There are tiny things here and there that I remember, but my husband and parents were really upset that they only kept me for a few hours and discharged me before I was fully coherent. (I remember getting home and the look on my mom's face was like so worried and she's like, "They let her come home like that?!" My mom could always tell just my looking at my eyes if I wasn't all there, they just looked 'glazed over' she'd always say. I was so out of it and confused I thought I had done something wrong). They're just rushing people in and out of the ER right now. I am so glad that my husband was there at discharge so he could help me home...if I were all my by myself, I could've wandered outside and got hit by a car or something, you know? It's quite startling to thank about. They tried to keep my husband out, but thankfully he knew hospital security so they didn't bother trying to stop him after a point.
They sent me home with antibiotics, steroids, and 750mg Keppra tablets. I'd never taken a dose that large, but I suppose considering the circumstances, that's what it was. I took 750mg once a day or 2-3 days just to be sure. I still had some 500mg tablets that were still good so I switched to those. Took those once a day for a few more days. I've only been taking 250mg once a day for the past week or so.
I haven't gotten the chance to get into another neurologist yet, but the one I was seeing when I weaned off the medication has since left that practice so I'll probably have to see someone else, but I kind of know what they'll say. They'll just tell me to keep taking the Keppra and my sanity is just wearing down on this stuff...it doesn't make me feel awesome and I never feel my best. I feel like I can't reach my full potential while on this stuff...everything just feels so difficult.
I'm looking into getting some CBD oil because at this point, I am willing to try almost anything but AED's. The fact I went for 15 months seizure free was great...then I've been hearing COVID can provoke seizures from online medical articles and the ER doctor thought it was aggravating my seizure threshold. I'm afraid I'm back to square one, though. Things in life just aren't going right.
I wish you the best on your personal journey!