Weaning off keppra protocol?

@royanthony I stopped dreaming when I was on 1,000 per day. I knew that was not good.
I would suggest at that high dose, you be aware that if you miss your meds for a certain amount of time, you will have a seizure. Not because of epilepsy, because of the withdrawal, and that it can cause seizures. My doctor kept me on for 35 years, when I was actually was seizure free. Every 10 years or so, I'd have a seizure ALWAYS related to me missing my meds.
So he missed that fact that OTHER than the missed meds, I could be a candidate for weaning or taking less MGs. Still doing fine here. The tornado weather always affects me because of the electricity. I take as needed (about 40 MGs) now.

@sarahemmah Thank you. I think it's similar to mood drugs, like Lipitor or Prozac. I believe these drugs can be almost impossible to wean off of.

Good luck Sarah, It's so hard to wean off because the 250's (twice a day) are already split in half. I tried to split them further, but not possible. The 100's are super expensive if you but through Chewy. The liquid form of Keppra is much less expensive, but not easy to administer when you are feeling bad already. I wish 50 MG's were available at a decent price. I'd probably take one a day if I could get them. Slow wins the race when weaning and pay close attention to how you feel.

@sarahemmah How are you doing now? It's obvious that one of the problems is that our medication that we take twice a day for our entire lives, CAUSES seizures. I knew that was bad 50 some years ago. So if we miss our meds, we have a seizure. Doctor gives us MORE meds.
We never know if it's the epilepsy, or the anti-convulsant drugs. I assumed it was the epilepsy for 35 years, but have found out that in my case, it wasn't. It was the anti-seizure meds.
I needed the pills originally, but then, did not. Some people who wean off, still take a pill (100s) or 2 every day, anyway. Not sure why we can take them once a day. I did the same. I thought I was better and eventually got down to 250 a day. It's shouldn't even work for us that way. Either 250 is way too much and once a day was fine, or we might be doing better and just have to find a way off the meds. Getting down to one a day, got me realizing that I wasn't taking them for epilepsy, I was taking them because I was physically addicted to them. gl

@sarahemmah
Keppra is not a mood stabilizer and although sometimes used for bipolar it's not a first line mood stabilizer. It's sometimes added to a first line mood stabilizers. Keppra usually causes a worsening mood.
Take care,
Jake

@zulemab
You might want to talk to your doctor regarding the hallucinations and vitamin B6. It has been helpful with Keppra rage because it helps counteract the drug's impact on brain chemistry, particularly by increasing the production of inhibitory neurotransmitters.
Take care,
Jake

@r0bert I was seizure free for 1.5+ years ( 1st in over 25 year) and psychologically thought I was on my way to a normal life; then I had a seizure. I thought I'd finally be on my way to being able to drive again. Hard to accept that I couldn't. Worse things can happen. How do you feel 10 years free and then have a seizure that set's you back?

@royanthony
Hi Roy,
So, do you always get the same manufacturer with all your refils. I wonder if that could've played a part in why you had a seizure. Do you know why the seizure happened?
Take care,
Jake

@jakedduck1 Good question, but a situation with my wife's employment caused a lot of stress. I lost lots of sleep and of course both are likely the key triggers. I am so fortunate that presently I'm able to use Brand name meds, so the mfr. is the same. Generic meds don't work for me.

Good Morning, Everyone!
I hope you all had a wonderful weekend — and for those of you in Europe and other parts of the world, a well-deserved long weekend thanks to the May 1st holiday!
Drawing from my own experience — and echoing the words of my current doctor — everyone is unique, even two individuals with the same type of epilepsy. The medication and dosage that work well for one person don't necessarily work for another, even when the diagnosis is the same. There are many individual factors a doctor must weigh when designing an epilepsy treatment plan.
As I've shared before, my first two years on AEDs were very difficult. The neurologists treating me at the time followed standard protocols and dosages for my type of epilepsy, without tailoring treatment to my body, constitution, or circumstances. Their goal was seizure freedom — at whatever cost to me. Thankfully, my current doctor operates on a very different principle: bringing me more benefits than harm and customizing every step of my treatment to who I am.
At the end of 2024, while I was on Epidiolex alone, I experienced a period of intense stress and had to restart an AED — Keppra this time — for safety reasons. Stress is certainly one of the worst seizure triggers, as @royanthony has rightly pointed out. I was frightened to go back on an AED and anxious about what Keppra might bring after reading so much negative information on this AED. But it turned out to be, by far, the AED that affected me the least. I believe that's largely because my doctor reduced the dosage gradually and carefully, always calibrating it to my needs once I was stable again. As he has taught me: controlling seizures matters, because a brain that seizes learns to repeat that pattern.
As @jakedduck1 has wisely noted, switching from one AED manufacturer to another — even with the same active ingredient — can affect seizure control. This year, with more Epidiolex manufacturers available in my local market, I made a switch and experienced great results. My experience closely mirrors @keeg1010's. My previous manufacturer had not been transporting the medication within the ideal temperature range during the summer months, causing instability in the product.
@r0bert — I'm so glad to hear you've been successfully weaning off your medication. Perhaps your brain has established a strong pattern of seizure freedom over the years, making a gradual dose reduction possible. Please do continue this process under the close care of a doctor who truly knows and respects you.
@zulemab — How is your daughter doing? I'm very much looking forward to your updates.
@royanthony — I understand your seizures are back under control now that the stress around your wife's employment situation has eased, right? I hope so.
Wishing everyone a beautiful day!
Chris