Its been a while since ive posted on here. I hope you are all doing well?
I weaned my daughter off keppra following advice from her neurologist. She had been on it for 11 months with no breakthrough seizures. The epilepsy Dr says its likely Millie had a acute symptomatic seizure due to her bleed when her AVM ruptured. She was put on 750mg twice daily and weaned off over the course of 14 weeks. She’s been off Keppra for 2 weeks and so far so good. Question, if she had developed epilepsy would a seizure of likely to have happened by now. I hate this wait and see period. Xx
Hey Millie,
YES!!! That ‘Wait’n’Watch’ period is not nice for anybody.
As to your question, there is no simple ‘Yes/No’ answer. For some people, they have a physical ‘trigger’ that can cause a seizure. For some it can be light ie a strobe light, for some the trigger can be a smell, like a solvent or a perfume. Some people can be triggered by a sudden drop in blood pressure or as a fright/flight reaction. If an individual does have a trigger and is not exposed to that specific trigger, they may not have a seizure again.
And I completely agree. A rupture can send the brain messaging system for a spin, but now that it’s been managed, reducing the medication ‘may’ show any seizure activity. For some patients the slow reduction in medication can cause a seizure, Millie hasn’t. That’s a good sign. You say she’s not taken it for 2 weeks and no seizure, that’s another good sign. Some of these medications can take months to be fully evacuated from our systems, so although she is not taking Keppra, the remnants of the drug may still be floating around in her system. Often the evacuation of these substances cannot be rushed, it takes the body time to process them out and all you can really do is wait.
But, the BIG plus here is ‘No seizure activity’ so far. That’s a triumph in itself.
Long may it last.
Hi, my husband had his craniotomy in June of 2022 and was on Keppra 500mg twice daily up until October 2022. He was weaned off over just a two week period, since there weren’t any breakthrough seizures from the time pre and post surgery while on Keppra. He went until April 30,2023 (6 months off med) and that’s when he had a grand mal at 5am while sleeping. He has since been put back on Keppra at the old dose of 1 twice daily and so far so good. It’s almost been 6 months now without another breakthrough. Thankfully!For now he’s sticking with the Keppra because he doesn’t want to play the “wait and see what happens game”. He feels more able to do more of what he used to do without the worry. Plus, he still works as a salesman, which he did before the surgery. So, he takes the meds.
I’m not a doctor, just a patient. I had an AVM bleed in 1998 and I was on Keppra for a while. I had petite mal seizures about 4 times a year. Then Lamictal became available and since then I’ve been seizure-free. But I was 38 when I had my AVM rupture. So, not a pediatric patient.
Dear Millie, I hope your daughter gets better and stronger. My son had a small seizure when he had a second bleed at hospital. It was a nearly imperceptible trembling in the leg, but the doctors put him on Keppra for a few months and eventually the neurologist decided to gradually suspend the medication. Almost one year after he started to have stroke like symptoms and the doctors diagnosed hemiplegic migraine with aura. Aura is when one side gets weaker ( limbs, mouth) and it is very scary because one never knows whether this is another stroke. It can be triggered by lack of sleep, tiredness and more recently by the contrast used for his 5-year angiogram. He spent a whole night in hospital and had a 24-hour EEG but there was no sign of epilepsy. So just beware of this potential outcome, and ensure that your daughter is well rested. Good luck and praying for her.