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.

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

@santosha Not under control, Chris. Only 3 since Dec. 15, 2025; all short lasting less than 1 minute and no falling...thankfully. I appreciate your interest and keeg1010's education on medication and transportation in a proper temperature range during the summer months. Boy, this was something I never knew anything existed. All take care.

@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?

@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

@keeg1010

Hi Kerry,

May I know how often does Keegan consult his neurologist? From your sharing, it seems you called for an appointment after he experienced side effects. I understand the nature of our condition may be a little different, but it’s still to control seizures and mine is normally short with a couple of more “significant?” ones ~ 2x /month. I fix an appointment only after finishing a consultation, thus it’s after ~ 3 months with another combination of same med. Is that stretching it too long? What does everyone also think? I’m considering shifting to Taiwan for treatment.

Cheers,
Louis

P/S Gabapentin does nothing for me as well. It’s prescribed to stop the itch which may be one side effect of another medication

@louissc
Hi Louis,
Thanks for reaching out. For Keegan, when he was initially diagnosed, we saw our Mayo neurologist every 3 months. Once we were able to find the "right" combination of medications, both Lamictal and Epidiolex, we went to once a year. That is, unless we had a higher number of seizures occur. Then, I would call and schedule for as soon as they had an opening.
You said you fix an appointment approximately every 3 months only after finishing a consultation. Can you explain what you mean? For Keegan, when he was first diagnosed, we had our intial consultation and it was over 3 hours at Mayo and included history, MRI review, blood work, etc. Do you mean you follow up with your neurologist every 3 months? If you are experiencing side effects from the meds, I would follow up as soon as possible to discuss changes.
I'm not sure where you live but you said you were considering shifting to Taiwan for treatment? Is there a larger variety of medications available and are there better treatment options there? I would love to know more.
Thanks Louis!
Kerry

@keeg1010

Hi Kerry,

First, I am so happy Keegan found the combi of med which works for him. From your sharing I guess it’s not unusual for an appointment to be scheduled once every 3 months. I would make my next appointment at the clinic after the end of each consultation. And yes, the follow up is often every 3 months. My official diagnosis is refractory multifocal epilepsy, and that’s ≈ 10 years ago. I’m currently dealing with daily seizures.

This country may boast to have some of the best medical facilities in the world. But we are still a small & young nation (≈6.5M & 60 years old). The patient pool will be small compared to bigger nations where cases are more diverse, thus neurologists there will be exposed to wider variety of cases and thus be more experienced when dealing with complex condition like epilepsy. The number of drugs they bring in is wider. I had never heard of Briviact before my first consultation in Taiwan. I brought this up with my current neurologist, and he said it’s worth a try. This drug isn’t readily available here; the local clinic had to indent it. Clinics and hospitals here tend stock the more “popular” drugs for every condition. In a larger nation, with a larger patient pool, the variety of drugs will naturally be wider.

I hate to leave the current neurologist who saved me when others weren’t optimistic about my chances. I was unconscious, almost dead. I still wonder if it’s a wise choice to start from scratch with another neurologist. I was honest with him about possibility of saying goodbye, and he’s ok.

The interesting part about treatment in Taiwan is the hospital combines traditional Chinese medicine (TCM) with western ones when so often the line is clearly drawn for treatments. TCM is an option I never considered before and overall treatment costs in Taiwan can potentially be cheaper and still be so even after factoring in the airfare & miscellaneous expenses. I can’t say treatment will be better since I haven’t started any substantial treatment yet. I communicate in Chinese and Mandarin with the staff at National Taiwan University Hospital (NTUH) where I visited. The international patient centre staff’s English proficiency seemed pretty decent so yeah, no worries if you decide to give it a try.

Do you mind sharing how much did each previous consultation approx cost? For me, my consultation was at a private hospital clinic so drugs I got (I believe get in future) weren’t generic ones. Those contain a MG or so more fillers and fewer active ingredients than what I will get from public hospitals (although cheaper of course). Without any scans, each consultation will cost USD100/consultation but drugs will be =USD900/month worth of drugs. 75mg of Topomax, 10mg of parampanel, 500mg of lamictal, 40mg of frisium, 240 mg of tebonin.

Cheers,
Louis

@louissc
I am so sorry to hear that you are still dealing with seizures daily. I know how difficult it is to find the right medications and/or balance that works for you. My son has Mesial Temporal Sclerosis and we had to go through several medication combinations until we got to Epidiolex. I'm not sure where you live. I am in Arizona. Is Epidiolex available where you are? For Keegan, the Lamactil helped but didn't do enough. When Keegan started Epidiolex (pure CBD), he was seizure free for 2 years. It really works well for him and has after an adjustment period, Keegan has no side effects from it. He had HORRIBLE side effects from other medications.
I have not heard of Briviact before. I hope that helps you. I think it's definitely worth a try, if you are still dealing with seizures daily. I completely understand the feeling of leaving your current neurologist. We were in the same position. I absolutely loved her. She had wanted Keegan to try Epidiolex but she couldn't prescribe it or give me a dosage. So, after much research and talking with my husband, we decided Mayo clinic was the best option and we're so glad we did.
I would love to hear more about your experience with NTUH. I think it's very interesting that they include traditional Chinese medicine, along with western medicine. I think it can be very benefical for some people. We spent a month in China and Keegan underwent Acupunture and we had amazing results, which I don't know we would have gotten had we not gone there.
One thing about the medications here is that they are more widely available but they are also expensive. I know @jakedduck1 ALWAYS recommends using the brand name instead of the generics. He can definitely provide further information. @santosha can also add to this conversation, as she does not live in the US and deals with different manufacturers as well. They are both very knowledgeable and very dedicated to helping whenever they can. They were my LIFELINE when Keegan was first diagnosed.
As far as the cost of a Mayo clinic Neurology consult, I can't say. When Keegan was first diagnosed, we had primary and secondary insurance that covered the cost of the visit. We were lucky enough to have no out of pocket cost.
Looking forward to talking soon.
Kerry
Kerry

@keeg1010

Hi Kerry,

I did secretly wish my life ended there and then. I’m an atheist. Perhaps there’s a reason why I didn’t leave this world? I don’t know.

There are so many kind people here in this forum. All willing to share experiences and I hope I had done so in some way. I did a read up on CBDs only to realise they are illegal here, unfortunately.

Generic drugs are cheaper because they have a a little more “fillers” and less active ingredients. I understand why many stick to brand name ones. Public clinics/hospitals use generics because they are cheaper.

I live in Singapore; Taipei is a mere 4.5 hrs flight time away with no time difference. I might have considered Mayo if not for the flight time (≈15hrs direct to SFO).

My insurance coverage for this condition is gonna end soon and I gotta plan how should I navigate this. I don’t mind paying more if it works. I can enter US easily, visa free, seek treatment at Mayo if need be. For how long should I take this still more convenient route of staying in Asia before going elsewhere? I don’t know.

I’ll share here when I decide to go NTUH and finally end my local treatment. And yes, there are quite a number of popular acupuncture clinics in Singapore. TCM had a long history, and since it’a natural thus unlikely to clash with western medicine, I am considering giving it a try.

From the other thread regarding Briviact, many had shared their experiences and frankly some sounded scary. I’m to start on it tonight, 25mg first. My seizures are daily when it was once every 3-4 days, but intensity of each episode had decreased. But according to those around me, I looked noticeably more tired these past couple of weeks. I don’t know why.

I wish Keegan the best and the condition continuing to improve.

Cheers,
Louis