Whining off keppra

@shheppner
Welcome to Mayo Clinic Connect. I'm sorry to hear you had a seizure. I hope you never have another one. I've had Epilepsy for 56 years and many thousands of seizures and have been put in comas because they wouldn't stop.
The link below is a recent post on how vitamin B1 helps what is known as Keppra rage. Click and scroll down to the post by @earlylonghauler. I think it's the 7th post.
https://connect.mayoclinic.org/discussion/keppa/?pg=12#chv4-comment-stream-header
As far as weaning is concerned there are others more knowledge about coming off Keppra than I am. But definitely don't stop cold turkey because it increases the possibility of Status Epilepticus. Just go slowly. I wouldn't skip days either. I wonder if it's the combination of the CPAP and Keppra together helping your seizures. I think trying only the CPAP may solve the problem. No need taking seizure meds if you don't have to.
Take care,
Jake

Strongly suggest consulting with your neurologist to come up with a plan to wean yourself off of Keppra - if they agree that is the right thing to do. I would only trust a doctor’s advice on this. Once you are on E-meds, stopping or switching E-meds without your doctor coming up with a transition plan could trigger a seizure. I am also new to Epilepsy, Keppra was my first E-drug. It made me depressed and gave me Keppra Rage. Vitamin B6 100mg once a day helped me tremendously - lifted the Keppra depression and rage. Even so, I asked my doctor to put me on a new med, and am now on Lacosamide. Lacosamide makes me sleepy, gives me brain fog, and I have balance issues. I missed 1 dose of Lacosamide and had another seizure. I miss Keppra, believe it or not - it messed with my mood but made me mentally sharp. My doc wants me to stay on Lacosamide for a while, but if the balance issue does not work out I have already asked to be put back on Keppra.

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.

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.

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)

I've read all of these posts and I am very empathetic for all of you. I am a recently diagnosed senior Epilepsy and Seizure patient since July 18/23. I have had several seizures and was put on Keppra. The doctor recently increased the dosage from 500mg to 750 mg.
Now he wants to wean me off the Keppra and start me to take Depakote. What is the difference between the two and is Depakote stronger than Keppra?