Anyone experience side effects while decreasing Keppra?

So my daughter has been on keppra since Jan 2020. She’s been good on them. Did eeg, read normal. So being weneed. She is on 100 mg, 3.5 ml 2 x a day. She is now down to 2.0 for the 3rd week. Since we started 2.0, she hasn’t felt good. Like wanted to throw up, never does tho. Before she would have to lay down, now it’s not as intense. She said it comes and goes. Now not sure should go to 1.5. Still waiting hear from neurologist. Her doc said she didn’t anticipate withdrawals….I so think they are tho. Just want to be completely done with these meds. I feel she has anger, anxiety, ocd, memory loss from this. She is only 9 years old. Thoughts???

My seizures are probably the result of a bad experience with radiation to treat a parotid gland cancer. I received the radiation at Mass General because my surgeon felt they were best!!!!
I don't know what kind of seizures I had (only two) and I have not had any specific diagnostic tests. As for rashes - I have eczema which comes and goes. I guess at 79 (80 next month) I should live with it.

My neurologist has suggested Zimpat if it is compatible with my antidepressants and I will check with my psychopharmacologist. But it seems that all the anti-seizure meds have depression and suicidal ideation as side effects. Any ideas?

@jenmejia
I share your concerns about your daughter's mood issues. Anti-seizure medications have many side effects, and Keppra potentially has all that you mention; however, I’m not sure about OCD. There has been research on OCD however. Some researchers are of the opinion there is a relationship between Keppra, Epilepsy, and OCD and there have been studies showing OCD in children and adults, related to Keppra. It has been shown that when Keppra was stopped the OCD did too. I don’t know if this reserch has conclusively proven the relationship however.
Normal EEG’s, scans and a Neurological exams don’t necessarily mean she doesn't have a seizure disorder.
Keppra is well-known for inducing mood problems like anger, anxiety and other mood issues. I have known many many people who have gone off it because of anger issues. Most of those people were women. Tapering this medication slowly is the best way to prevent further seizures and any possible withdrawals. You may want to suggest to the doctor a slower taper. I have done slower capers in the past and doctors recommended just because I felt more comfortable in doing so. I have done slower tapers in the past than doctors recommended just because I felt more comfortable in doing so. I would be concerned that your daughter may begin having seizures again when this medicine is lowered or discontinued all together. What type of seizure/s did your daughter have?
Has your daughter only had one seizure or has she had others? Was she diagnosed as having epilepsy?
Has your daughter only had one seizure or others or been diagnosed as having epilepsy?
Best wishes to your daughter and family,
Jake

@jdernburg
You might be right about living with them. Vimpat is a narrow spectrum Anticonvulsant for Focal seizures which are seizures on one side of the brain whereas generalised seizures involve the entire brain. If your having Auras which are Focal Aware seizures I would probably live with them too especially if they are infrequent. If you are having Focal Impaired seizures, then I'd say it depends on how much of an impact they have on you. For example if you wander. People have wandered aimlessly and occasionally fallen injuring themselves and in rare cases died. A lady I knew in England removed her clothes at a McDonald's during a Focal Impaired seizure. Hopefully you, your seizures were Absences.
You should find out what type of seizure disorder and the type of seizures you have.
You might consider a MedicAlert bracelet, necklace.
Here is MedicAlert's website.
https://www.medicalert.org/
Take care,
Jake

My son is slowly coming of Keppra. This is his last week before he is completely off. Has anybody notice any side effects when coming off?

@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

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)

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 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)

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