Weaning off keppra protocol?

I have been taking 500mg daily for about 20 days; I noticed that I felt dizzy for last two days. I do not know if this is a side effect or not?

Yes, i am taking keppra for seizure

I think Keppra has to many side effects. That being said it works for others. Make sure it is titrated according to your physician. Hope that helps.

After 50 years on the meds, I'm better now and decided to ween off the meds. VERY slowly. I've been tapering down for 2 years! Am down from 1800 mgs of epilepsy meds daily, to 60 mg (6ml) per day. Have never felt better. The Keppra held on tight and wouldn't let me off of my 500s. Even after I cut them in half to 250. Dogs and cats can get 100 mgs at Chewey for $1 per. I'm not looking for the highest pet prices I can find. Doc finally prescribed me 100mg liquid form at a very reasonable (human) price. After I got used to the extra work I love it. Now I can ween all the way down. Next week I'll go down to 50mg(5ml), etc. The thing with me was that I don't need the meds anymore. That's why I've worked so hard to ween off them.

Hi, @r0bert and welcome to Mayo Clinic Connect. That is a very long time to have been on your meds! Good to hear you've never felt better.

You mentioned weaning off over 2 years. Sounds like perhaps your doctor gave you this protocol for weaning? You mentioned levetiracetam (Keppra) held on tight and wouldn't let you off of your 500s. What happened when you tried to do this?

Remember all.....Keppra is meant to work over a 12hr period so if you are only taking 1 pill at night, you are only protected during the evening. Awhile back, I forgot to take one of my Keppra pills and I had a seizure that night. That was awhile back and currently I have weened off the Keppra gradually and I have been seizure free for almost 3 months now. Keeping my fingers crossed.
God Bless....
ray hippele

I've been on Keppra for years at the highest dose I'm told is allowed; e.g. 3000 mgs per day. The dosage has helped me dramitically. I have no other side effects. I do have issues with sleeping and I wonder if the Keppra contributes to that. Any comments would be appreciated.

Hello @royanthony
I'm very sorry to hear you're having sleep troubles with Keppra. I've experienced similar issues with other AEDs (though not Keppra specifically), and I know how exhausting and frustrating this can be. Sleep disturbances and insomnia are, unfortunately, quite common side effects of many AEDs.
As my doctor always reminds me, every person's body responds differently to medications, so what works well for one person might cause problems for another. I checked the Mayo Clinic information on Keppra, and sleep issues are indeed listed among the potential side effects: https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010
I remember you mentioning some time ago that you were taking Zolpidem to help with sleep. Has that stopped being effective, or have things changed with your sleep routine?
Chris

@hopefullibrarian
Yes. And typical dose Keppra made me stop dreaming. I knew that was very bad. I had the best neurologist in the Midwest by far. He would NOT even HEAR about me wanting to wean off.
HIs words were always the same - "If you had a seizure, what is the worst thing that could happen?" Of course, the answer was that I could die, so he always just smiled knowing he'd made his point. I stopped having seizures 30 years ago! I had one every 11 years due to not taking the meds (because I had forgotten or was too sick to) ONLY! And the best neurologist in the Country wouldn't even consider me getting off of it. We he retired I was free to make my own choices, and it seems I was correct. I did NOT need the meds the last 30 years! I took 35 million milligrams of epilepsy medication in over 50 years. With the liquid I SLOWLY (at least 2 years+) just got down from 1,800 ml a day to (dropping 10 ml every 10 days) my current 10 milligrams a day. I weaned of so gradually, that now it doesn't have the hold it once did. Now I laugh at the Keppra still trying to hold onto me. After Christmas, I just stopped taking the 10 mill. It was so small you couldn't even taste it. Now after stage 4 cancer, brain cancer and epilepsy, I have NEVER felt better in my life. Well maybe when I was 10. I think many times the Drs are scared into a fetal position when it might serve them all better to listen to their patients, who can understand epilepsy from a different perspective. My famous Dr said I was his best patient and called me "Professor" (he was THE teacher in the Midwest) He knew I was a smart man but was just too rigid to listen closely enough. Thanks to everyone that commented. Good luck with whatever you do in getting through this. The 1st google search I saw said to give it some time, like 2 weeks. lol. I did it in 2 years and 4 months. If it were a different drug, some can be gotten off seamlessly. When I searched for 2-year weaning, I found out there were MANY people with the same problem. It was the people on the mood drugs, they were saying it took them 2 years. THAT was my problem, Keppra is a mood drug, which in my estimation is why they are so difficult to wean off of. Thank you all for your kind wishes and support. I pray for all of you.

Hi, @lisalucier. No, it was I who came up with my weaning time and method. Well take Tegretol as an example. I weaned of Tegretol slowly to no ill feelings at all. none. With the Keppra, every time I dropped down a little, I could feel a nervousness feeling. So I'd go a longer time with every decrease. The reason I wanted to stop so badly was because I don't need it anymore. I can hold my hand steady, which I could not do before, for example.
I cut the 500's in half and eventually got down to 250 a day. To go down from that (it was impossible to cut the 500's into fourths - (100's were not available at that time except for pets!) I had to get VERY creative. Since I was CERTAIN I did not even need the medication. I stopped taking it every day. Because I wasn't taking it for epilepsy purposes, I was taking it to keep from going through the Keppra withdrawals. Which COULD throw me into a seizure. I stopped taking it daily probably 7 months ago. I almost had to buy them from Chewy I was so desperate. My incredible cancer Dr was the one who listened to me the whole time. I am blessed to have some great Drs. When I got the liquid form, (thanks to my General Dr for that) I was down to 100 ml a day. (not the twice a day recommended) I'd do 100 per day for about 10 days and drop to 90. I felt nervousness so I stretched it out to 3 weeks, then tried to drop again. Every time I did this the Keppra grip was lessened, I got down to 70, felt it again, stretched it out, tried later. When I made my way down to 20 even the nervousness feeling was diminished. I did 10 for a couple weeks. (I could barely taste it) By then it couldn't have thrown me into a seizure, it was too weakened. It would say, "hey, I know what you're doing!", and I'd just laugh. Please let me know if I can answer any questions about this. I'd be more than happy to share my experience since I've been so blessed to get the opportunity, when I know many don't have that option. I can help with those people also. Maybe I can become a Dr. It's a much higher possibly than many of the other things I've considered with my new lease on life. Thank you for your question and for sharing your knowledge