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Weaning off keppra protocol?

Epilepsy & Seizures | Last Active: Jan 1 10:11pm | Replies (23)

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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

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Replies to "Hi, @lisalucier. No, it was I who came up with my weaning time and method. Well..."

@lisalucier - Also, the reason some drugs can be harder to wean from, (and now this is a guess) is they are mood drugs. When I searched 2-year weaning on google, I found 1,000's of people with the same problem. They were on mood drugs. Keppra is a mood stabilizer I believe.
If I could make a suggestion to Drs, don't throw people onto the 500's, that was too much. I told my Dr this MANY times, since I'm a small dude. It prevented almost anyone from ever being able to wean off of them. If they were prescribed a decent amount, and not the huge 500's, and they need to get the 100's available without having to buy them for a dog or cat. (1 dollar per pill)
I swear by the liquid form for the final weaning's, just to be safe. And slow wins the race.