7 weeks

[Knotty-Ayesha]

7 weeks on. In hospital for a total of 27 days. Still having 8-10 seizures a day! Does it get better?

[lw1990]

hi Knotty-Ayesha have you had any treatment and if so what have you had so far?

27 days although must feel like a lifetime right now , it is not very long with encephalitis recovery ( in our experience with my mom).

Take each day as it comes and make sure you are getting the right support and questions answered - if you have someone who can advocate for you.

Best wishes ,

Leoni

[HSE_Survivor]

Hi Ayesha. I’ve had epilepsy since having encephalitis in 2013. It can be brought under control, but recovery can be a roller coaster, especially in the first year when your mum’s brain is still coping with the damage left by encephalitis . It can be difficult finding the right epilepsy meds to deal with the seizures, as brain reactions to meds can be different for every patient. I had seizures in hospital in 2013 which my first epilepsy meds initially stopped. Then the seizures reoccurred 6 months later. They had to change my meds, and that brought the seizures under control again.

I’ve had to have my meds dose increased a few times over the years since 2013 when the seizures have started reoccurring again. I now see an epilepsy specialist if that ever happens.

One thing I can tell you is that no matter how bad a seizure looks, your mum won’t be suffering any pain or distress when a seizure is actually happening. I’ve woken up in hospital literally not remembering that a bad seizure has just occurred. My poor husband is always far more worried than me, as he is the one who had to call an ambulance.

[EncephInternational Partner]

Hi, I am so sorry to hear of your ongoing struggle with seizures. We have online peer support groups if you would like to connect with others who have experience of encephalitis. Details can be found here encephalitis.info/online-pe...

[Paula-38]

Hi Knotty-Ayesha,

I believe that when I first had encephalitis the day after my first birthday I was in hospital for 6 weeks. My dad has informed me that I was having convulsions but he said I was discharged with 3 epilepsy medications and that my parents had to keep an eye on me if I ever had a virus/infection/bug witha high temperature because that could trigger them off, but if I was well I was ok, as long as I was taking my meds which I was.

Another thing is, they were only monthly, until I was ten. Then I was hospitalised while they changed my medications to my 2 current ones and from that point on I made slow gradual progress.

So maybe finding the right ledication that works for you at the right time, but also try and be patient with yourself because it doesn't happen overnight, but it's a slow gradual process. Improvements can often take time and improvement/progress/recovery is different for everyone.

There's no time limit for improvement/progress/ recovery.

I would ask your neurologist to review your case and see what the best treatment option is for you.

I wish you the very best of luck.