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I am so sorry that you are having to go this. Keppra was horrible for me. It seems to be the go-to AED. I've had 2 seizures in my sleep 6 year apart, both tonic-clonic. Both times, the response was to immediately put me on Keppra. I could't think clearly and that was making me angry. The first time, I just stopped taking it within the first week with no negative effects, and didn't take anything again until after the 2nd seizure. Because of the combination of the seizure and undiagnoses osteoporosis, I broke my back. That scared me enough to stay on medication, but Keppra was again a problem--turning me into a zombie. My neurologist switched me over to lamotragine. I almost instantly felt better, but nothing's perfect. I still have trouble thinking clearly at times, and, like all AEDs it can have some really bad side effects including significant metabolic effects on the bone. For someone with osteoporisis, I have to decide what the lesser evil is. Because my seizures were so far apart, my case is considered a mild one. I am strongly considering being weaned off of it entirely and trying a natural approach. I don't think that there is a neurologist alive who would ever "recommend" going off of AEDs, but in the end, it's your decision.
Replies to "I am so sorry that you are having to go this. Keppra was horrible for me...."
@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.
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I need to add, that if you do decide to go off of Keppra, work with your doctor to do it safely. I was lucky the first time I stopped, I hadn't been on it for long enough for it to be a problem. There's no way I will wean myself off of Lamotrigine. My doctor's help, whether he agrees with the decision or not, is essential.