Anyone experience side effects while decreasing Keppra?

@sbrobin
Although I’m not saying the taper as prescribed, won’t be successful it seems fast to me, especially since taking it so long. I would talk with your doctor and tell him you'd like to taper more slowly.
You didn’t mention XL so I assume you’re not taking the extended release formulation.
I’d ask him for a prescription for 250 mg tablets and reduce one every three weeks. I wouldn't want to chance withdrawals.
You may want to try your doctors taper and if you have withdrawals, increase it to where you don’t and restart your taper more slowly.
I hope you keep us informed if the Depakote controls your seizures.
Good luck,
Jake

Hi Sarah,
My epi was (still is) considered beyond treatment, i.e. no anti-epileptic drugs could entirely suppress seizures. Neuro: the last seizures are the most difficult to suppress. I get monthly focals and realize others are not so lucky.
I was on duo-therapy Keppra / Depakote and switched to mono-therapy Briviact because of side-effects.
The switch from Keppra to Briviact was back-to-back, i.e one morning I stopped taking Keppra altogether en took Briviact instead. During the following year my agitation disappeared and even the year after that I less uptight & agressive. (Keppra & Briviact are chemically alike, so that figures).
What did happen though was that with Briviact I got more focal seizures. So it turned out to be a trade-off: less agitation, a friendlier partner with monthly focal seizure.
These additional focals are treated with additional Vimpat, so in the end I am on duo-therapy 100 mg. Briviact and 50 mg. Vimpat BID. Hoping this will suppres the focals.
The Depakote did not agree with me. I got oedema (legs) and diarrhoea and was finally diagnised with 'Parkinsonism', which is not the disease, but a set of sympoms whic look as if one has the feared P.. At the same time as I made the switch K. to B. I dropped every other week 250 mg. Depakote per day from my 1000 mg. BID. All side effects, including the Parkinsonism, disappeared during the next year.
Of course, it is impossible to attribute these improvements to either the Keppra-switch or the slow weaning off Depakote.
Wishing you courage and all the best, Tim

So sorry to hear this. Mind you, Keppra is well known for its side-effect 'agitation'. That could explain your daughters mood. Ask your neuro for side-effects and listen whether he/she know this. Nevertheless, Keppra is a wellknown and effective anti-epileptic drug. Wish you & your daughter well. Rgds, Tim

I am going through the same thing as we speak. I was taking g 1000mg of Keppra twice a day and have been since April of 2020. I was put on it because I had two back to back seizures in 2020 and then a third one not long after that was 7 1/2 minutes long. After several tests and specialists, we were unable to determine what caused them. I have since been seizure free while on Keppra but side effects to such a strong dose are getting to be too much. I am currently on the tier off plan, 750 2x daily for a week, 500mg twice a day for a week, 250 mg 2x a day for a week and then hopefully off of it for good. However, I am currently dealing with chronic fatigue, jitters (like when drinking too much caffeine, and headaches every day since reducing the dose). I am praying that eventually these symptoms will go away once I get through the process and trying to trust the process. I am just terrified the seizures will return but I have a hard accepting being on the medication and its side effects without a true diagnosis as to why I having the seizures in the first place.

Anyone make it through the weening off process and happy they did? Any advice?

@pingelc
If it was me getting what may be withdrawals I'd try cutting your pills in half, provided they’re not extended release, and may be increase provided they’re not extended release and maybe increase the from one week to -release and maybe increase the from one week to two weeks and see if there’s any change in headaches, etc.
In my opinion doctors often reduce medication too quickly and we patients pay the price.
where are you stopping your Keppra? Have you been seizure? free for a number of years? Is your MRI, EEG and Neuro exam normal? are you switching to a different seizure medication?
Take care,
Jake

I have been seizure free since 2020. I only had three seizures total that year and have been on the medication since my big one in April of 2020. I began reducing the medication per my neurologist’s instructions on June 23rd. This is the first full week of reducing the dose. I currently am taking 750 mg twice daily (morning and bedtime). The headaches and then lightheaded symptoms start about an hour after taking it. I did have two MRIs and was under the care of a neurologist. We decided to stop the Keppra because on it I was a zombie and exhausted. They couldn’t find any real diagnosis as to what caused the seizures. We decided to move forward with weaning me off of the medication since there was no real diagnosis.

One last thing Jake, THANK YOU for your reply and suggestions.

All the best!

@pingelc
I understand why you want off Keppra. Maybe your seizures stopped on their own, maybe the Keppra was stopping them. I’ve known people that have gone off seizure meds and started having seizures again and then the medication that they were put on was not effective. Continue to take the usual precautions for some time, driving, bathing (It only takes slightly over an inch of water to drown), cooking, power tools, climbing, etc. People have had seizures in the shower and were burned or drowned. Lots of potential dangers but fingers crossed your seizures are no more.🤞🤞
Best of to you,
Jake

I am caregiver to my x-husband. He is in a memory care facility and they sent him to a "behavioral clinic" due to "aggression", which I have to question right off the bat. This clinic is almost two hours from my home, and the first time I made the trip, I was stunned at his condition. In a wheelchair, could barely lift his head, did not know who I was. They claimed they took him off all meds to start "fresh". Ok - they're the professionals. Two weeks later I went back - now he's worse. Now he's on Keppra because of his history of seizures. Huh? He's never had seizures. They found him unresponsive once - sent him to the hospital, which is literally next door, they sent him back saying they could find nothing wrong. This could be the "seizure" they are basing this on. I am outraged, but they tell me this is his "new normal". They send him to a new memory care facility that I had found. But now he is always in a wheelchair, doesn't talk, has no idea who I am, won't even open his eyes. These new people have no idea what he was like, so to them, this is normal. I explain to them that it is absolutely NOT normal, and make my wishes know to wean him off Keppra. He was getting 500mg twice a day, and the NP this past Monday started 500 in AM, 250 in PM. On Wednesday he is now severely dehydrated, so he is put in the hospital. I don't know if it is the fluids, the 250mg decrease in the Keppra, or a combination, but although very thin and in a hospital bed, he is alert, talking, and knows who I am. And eating. Keppra seems like an awfully powerful drug to put someone on when the clinicians didn't know his history. To me, it honestly looked like they gave it to him to keep him quiet. He was obviously over medicated to my eyes. The NP at his new facility wants to decrease 250mg every two weeks, and from what I am reading here, seems right. Any opinions from users? Thanks for helping me out - I have learned so much from reading these kind of forums.

@cashelton
I've had a seizure disorder for 57 years and the limited information you provided, especially about Keppra doesn't sound consistent with Epilepsy, seizures, or Keppra use to me. Hopefully some Keppra users will contribute some of their experiences.
Drowsiness, mood disorders including aggression and muscle weakness are side effects of Keppra. Thirst is another side effect. Is your ex vocal and able to convey his needs and concerns regarding hunger, thirst, pain or other needs? Perhaps the Keppra caused him to be dizzy, another potential side effect, and the wheelchair is for his safety but it shouldn't cause him to not be aware. I'd be squawking too. His dose isn't that high but it depends on other conditions, medications and how sensitive he is to medications?
Was he given any of the usual tests for seizures like medical history, neurological exam, EEG, MRI/CT, cardiac or blood tests?
Vitamin B-1 may help improve his aggression. Do you know if he was found seizing, unconscious, postictal (confused) or asleep?
I hope you will keep us informed as to his condition/diagnosis.
Take care,
Jake