Weaning off keppra protocol?

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

Hi @hopefullibrarian
I am very sorry for the experiences you went through and I can understand well your feelings.
AEDs did more harm than benefit to me, after having tried 5 of them (Lamictal, Tegretol, Trileptal, Vimpat and Gabaneurin), wanting to through them all out of the window.
But in 2021, I started to be treated by an epileptologist and this made a huge difference and changed my epilepsy journey for the better. It was clear at this point that I have refractory epilepsy or drug-resistant epilepsy, starting to be treated with medical cannabis by my doctor with very few side effects. Unfortunately, it seems that there are few doctors out there who know how to treat with medical cannabis. Besides that, I also started a gluten-free diet, which reduced my seizures by 60%. Taking gluten 100% of my diet was much much easier than I thought. I have also studied much my triggers (physical, external and internal) and have put an action plan so as to avoid them as much as possible. This was also very helpful. I still do have seizures (an average of about 2 partial complex seizures per month), but they are less harmful than those I had when taking AEDs. Most important, I am smiling again!
Recently, @joseph1963 has shared a study with us that is worth reading: Treating seizures with D-Leucine and L-Leucine. For sure, this is something I will investigate more and talk about with my doctor.
Do not give up! If you wish to talk, please feel free to send me a message!
All the best!
Chris (or Santosha)

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.

@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.

@santosha can you discuss your success with CBD I have a 7 yr old and Keppra is causing her to hear voices and feel controlled, I’m sick of medication side effects

@zulemab
Welcome to the group! You will find that everyone one here is very helpful, caring people. I saw the post from @santosha and wanted to give you our experience with CBD (Epidiolex). My son developed adult onset epilepsy and was diagnosed with Mesial Temporal Sclerosis. His seizures are tonic/clonic but they only last abobut 30-45 seconds. My son is also very sensitive to AED's and can't tolerate most. He is able to take Lamictal 225mg , twice a day. When we had an increase in seizures, our neurologist put us on Depakote with Lamictal. My son, Keegan, could not tolerate the Depakote and it increased the amount of Lamictal in his blood to an extremely high level. We also tried Gabapentin, which was terrible. He had the WORST side effects and we ended up in the hospital for over a week due to the side effects. When we went back to Mayo and saw his neurologist, we discussed Epidiolex (compounded pure CBD. We were able to get the insurance to cover it and it is amazing. My son, Keegan, went almost 2 years without a seizure after we started Epidiolex. It absolutely changed his life. One thing to note is the Epidiolex is very sensitive to temperature and we had a pharmacy that didn't have air conditioning in their delivery trucks. Due to that, Keegan had an increase in seizures because the medication was unstable. However, we switched pharmacies and now, Keegan's seizures have to decreased to a few times per year. I would caution you on using OTC CBD. I know many people do that but the concern for me was there's no way to tell is it's pure CBD or if there's THC included because they aren't monitored where I live (AZ). I would definitely talk to your neurologist of epileptologist and explain the side effects and that you want to make a change. It's a very reasonable request, especially with the side effects your daughter is experiencing. I'm so sorry to hear that she is struggling. I wish you luck and as always, feel free to reach out if you have any questions. You will find that this support group is wonderful and everyone really cares and are EXTREMELY helpful.
Kerry

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