Anyone experience side effects while decreasing Keppra?

Thank you for your advice Santosha, I will get in contact with the doctor this morning.

Hi @osobear
Have you had a conversation with your doctor about taking Keppra off before it is programmed? Perhaps he could lower the dosage of Keppra a bit? If you feel uncomfortable with this doctor's treatment, go and check for a second opinion.
Have a nice day!
Chris (@santosha)

In 2022 I fractured my skull and was put into an induced coma. When I first started to come out of the coma my body went into a fit, and I was put into the coma. when I come out of the coma the second time I saw my legs shaking. This was the first time in my life I had an epiletic fit. I have been on Keppra since then, but I have never had an fit since I came out of hospital in June 2022. I have had three brain scans and was told that I had a scar on my brain where i fractured my skull and over my central lobe. The side effects of Keppra has made me more forgetful, agitated irritated some times and lethargic. I seem very sensitive and not as emotionally strong as I prior to fractured and I project it when I feel uncomfortable with people. I am supposed to take keppra until November 2024 but I want to come off it now, as I feel I do not need it.

Thanks for your reply. No, he can’t convey what he needs. He last lived in my home from 2020-23. No seizures, no epilepsy. I highly doubt the clinic did any of the tests you mentioned. They would have told me - I think. I am his MPOA. I’m pretty secure in saying they did not. It was just such a jolt to see him “zombie-like”, I was angry, sad, helpless. What do you think this drug would do to someone who did not need it? I hope he will continue to improve as the dose is decreased.

Hi @cashelton
I did not experience Keppra, but I also became an ill person in my bed most of the time while taking Vimpat. Since the neurologist at that time did not want to change to another AED, I went to get a second opinion. It was very worthwhile and I have changed doctors and medication.
Stay strong! My vibrations to both of you.
Chris (Santosha)

@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

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.

@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

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

All the best!

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.