anyone else had side effects on Keppra?

[Catmom8727]

hi everyone my father 4 months ago was diagnosed with HSV encephalitis recovery hasn’t been easy on all of us but we are getting through it. I am getting married in 3 months and that has pushed him to walk and get better. But we recently hit a road bump in recovery he refused to take his keppra because it side affects he was feeling. But Wednesday he has his first seizure and is currently in the hospital. They brought his dose down and it seems to help but he still has his aggressive episode every so often. Anyone else got through this while on keppra?

[Paula-38]

Hi Catmom8627,

I had the same diagnosis as your dad the day after my first birthday. Well, at first I was on Tegretol, Mysoline and Diazepam until I was 10, then I was hospitalised for six weeks while apparently they changed my medications to Phenytoin and Clonazepam. I have been taking these ever since and they have given me 29 years free from seizures.

All I can say is that (no I don'don't take Keppra, but I believe that Phenytoin is very similar) so I don't know if that's of any help to you and your dad. The process is the same though.

Please feel free to ask me anything at all.

Paula-38

[Catmom8727 in reply to Paula-38]

thank you paula! We are going to speak to the neurologist on the floor about those medications. This has been so hard he was doing great till now now he he is back to being confused. How long did it take for you recover??

[Paula-38 in reply to Catmom8727]

Hi again Catmom8727,

It was a long gradual process, after my six weeks in hospital (my mum stayed with me). I started off going from having a grand mal /convulsion - " that's what they used to call them" approximately once a month, it then went to having one once a year , then I had another one I was 13 by then at least that time I didn't have them consecutively bubut it lasted 20 minutes. Then my last one was when I was 17 so heaven knows how long it took, and there again everyone is different.

Good luck with the neurologist! I will be thinking of you and your dad! 🤞

Paula-38

[Catmom8727 in reply to Paula-38]

thank you so much paula! Keep us in your prayers to get through this 🙏🏻

[Bengels2]

Hi Catmom8727,

Becoming aggressive is a side effect from Keppra (levetiracetam). The neurologist in the Erasmus Hospital Rotterdam (second opinion in May 2021) said Keppra was not a good choice and advised carbamazepine; tapering off one and build up slowly the other at the same time . It made a difference in the behavior my brother.

[HSE_Survivor]

Everyone’s response to epilepsy meds is different . My body suddenly rejected the first brand of epilepsy meds I was given in hospital and I developed a severe allergic reaction. My neurologist swapped the meds to Keppra which controls my seizures with no side effects as long as I have the right dose . But I know many other people dislike Keppra as it causes them to have severe anger and irritability.

It’s worth looking at epilepsy.com which is the great American ‘Epilepsy Foundation’ charity . If you Google ‘Keppra and anger’ on there you’ll see how other people have dealt with this problem.

I hope your Dad feels better soon . Congratulations getting married , too.

[Catmom8727 in reply to HSE_Survivor]

thank you for sharing that information. I will be looking into it. Yes he is irritable and angry they had to tie him in the hospital because he keeps wanting to leave. He was never like this.

[Charing]

similar experience - uncontrollable extreme anxiety and anger. Now on Lamotrigine - major improvement although still more emotional than in the pre- encephalitis days. Hope this helps.