Managing seizures post encephalitis

[TomSad]

Hi,

I was hit with encephalitis in December 2017 and continue to struggle with seizures and a variety of other symptoms. Coming out of the hospital I had 10 seizures but then they seemed to ease with medication. But lately they have returned despite medication. Does anyone have any recommendations from experience with seizures and managing 5-7 years out? Thank you!

[kitnkaboodle]

Writing from the Epilepsy Monitoring Unit. Nearly four years out from E. So I’ll let you know how it goes 🤘

[EncephInternational Partner]

Hi Tom, I know we've already been in touch and I hope to see you at the group in September but for anyone else reading your post who feels they need some support - please do get in touch [e-mail].

[Tuesando]

yes we do. My partner had encephalitis in 2020 and still struggles with epilepsy. Finding the right drugs and dose can take a long time. We are not there yet but it’s getting better. All drugs work differently on different people. Always discuss possible side effects with your epilepsy nurse because some can have bad side effects like brain fog or depression. Eventually you will find a drug that works well.

[Paula-38]

Hi Tom,

I had Herpes Simplex Encephalitis and Status Epilepticus the day after my first birthday, and I believe I was in hospital for 6 weeks, and I came home with three medications, I took them 3 times a day until I was 10.

Then when I was 10 my meds were changed to new ones, and from there, I went a year free, then I had one but then I went 2 years free, then I had one when I was 13, and then I went 4 years free, and I had my last grand mal in my adolescence and now I'm 30 years free.

So, I think being patient with yourself, and..

maybe have you asked your neurologist to change your medication to better ones? That could help a lot.

I had, had it for 9 years by the time they changed my meds so never give up!

I know no two people are the same, and it's different for all of us, but it might give you hope.

As Tuesando said lets hope you find something that works for you.

Please feel free to ask me any questions at all.

I'm always happy to help anyone anytime.

[cg511cg]

TomSad, My husband was diagnosed with E in May 2023. While he was in the hospital, they put electrodes on his head to monitor different medications effects on the seizures. It took a good 3 days, but they finally got the right cocktail of medications and dosages that he went 24 hours without any seizures. He still takes these meds/dosage they prescribed and probably will for the rest of his life (he is 69). Everyone is different, but these are the antiseizure medications he is taking and they are working:

* Valproic Acid 250 MG capsules: one capsule 3 times daily (am, noon and pm)

* Levetiracetam 750 MG tablets: one tablet 2 times daily (am and pm)

* Lacosamide 200 MG tablets: one tablet 2 times daily (am and pm)

Best to you in your continued recovery.

[HSE_Survivor]

If you’re still having seizures, definitely see an epilepsy specialist and ask for a review, as epilepsy seizure control can alter over time , and meds can need changing or increasing. .

In my first year (2013) I gradually became allergic to my original epilepsy meds and I had horrid side effects such as alopecia and bruising . I was prescribed Keppra instead, and that had no negative side effects for me at all. My seizures were mostly well controlled for seven years unless I overdid things - I learned I had to carefully manage fatigue and I couldn’t drink alcohol.

Then since 2020 after a bad case of Covid, the seizures escalated again, and I’ve been in hospital due to uncontrollable seizures a few times since then . Last year I saw a new epilepsy specialist , and he increased my dose of Keppra to 3000mg a day. I feel like he’s given me my life back, with no seizure 🤞🏻 for 8 months.

I hope you find some answers, too.