Anyone experience side effects while decreasing Keppra?

@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 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?

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

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

@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

Tim, I've been on Keppra 1500mg BID for around 19 years and am switching to Depakote since I have my first tonic clonic seizure since on Keppra. They don't usually give Depakote to women, but since I'm 45 and done having kids there's no concern. I'm on a therapeutic level of Depakote so I just started weaning off Keppra today. I take four 750mg pills a day so my neuro said to take 1 less pill a day every 10 days. I'm concerned about side effects of weaning or my myoclinic jerks coming back so we'll see.

You said it took you a year to wean off Keppra. At what rate did you wean off of it?

-Sarah

Hi All, been on Keppra 13 yrs. 1000 mg. bi-daily for (nocturnal only) generalized seizures. Side-effects severe agitation and overall nastiness. I made a back-to-back switch to 100 mg. Brivaracetam (Briviact) bi-daily. Briviact is similar to Keppra on a molecular level, so that figures. It is supposed to lessen the agitation and it did. Saved my relation. Took a year to wean off the Keppra side-effect without generalized seizures. Still having focal seizures.
Bye, Tim (1951)

Hi Tim (@yossarion), Goede Morgen,

One curiosity after having lived some years in the Netherlands, are doctors in the country open to other treatments besides AEDs and surgery, such as CBD (medical cannabis), neuromodulation. diets, meditation?

Have a nice day!
Santosha

Hi scottg4957, for generalized seizures I was on 1000 mg. Keppra BID (bi-daily) plus 3000 mg. Depakine and tried to reduce the Keppra dose by 250 mg. once a day. This is only 12,5%. Neuro was OK. After two weeks I suffered from repeated seizures and back to the 1000 mg. Keppra BID plus the 3000 mg. Depakine.

I wanted to get rid of the Keppra because of my agitation and 'remoteness'.

Later, my neuro introduced me to Briviact (replacing the 1000 mg Keppra BID with 100 mg. Briviact BID. Side-effects agitation, remoteness and general nastiness disappeared, but my focal seizures increased.

Briviact and Keppra are alike on a molecular level. Briviact is a more recent drug.

Wish you & your son well,
Tim (The Netherlands)

@scottg4957
Welcome to Mayo Clinic Connect.
Why is your son discontinuing Keppra? Did his seizures stop or did he have side effects on the Keppra? Are they replacing the Keppra with another seizure medicine? What type of seizures does/did your son have?
Take care,
Jake