Focal Aware Seizures

[Scots_dad]

Hi I'm recovering from encephalitis and recently been getting focal awareness seizures, they weren't all the time but recently at least one a day and today I've had 2 , is this normal? Had encephalitis beginning of November.

[RachmaninovFan]

Hi Scots_dad, sorry to hear you're experiencing the focal aware seizures during your recovery from E. My husband had them in the acute phase of his autoimmune E, but it has since been managed very successfully with medication. He now has then rarely and they don't interfere with his everyday life.If your seizures are increasing, I would suggest you get in touch with your consultant quickly and find out what is happening in your brain to cause that.

Hope you make strong recovery progress and this symptom is treated soon 👍

[Scots_dad in reply to RachmaninovFan]

Thank you

[Cf1947 in reply to RachmaninovFan]

My husband is into the fifth year of recovery from autoimmune encephalitis, which started with a massive seizure and continued with regular seizures, both focal and tonic clonic. Now he is on Lamotrigine and this is largely keeping the seizures under control. One thing is for sure, the intervals between seizures are getting longer and longer. He recently went almost 3 months without one. Reading the above replies gives me hope that they may stop altogether at some point.

[Scots_dad in reply to Cf1947]

Thanks for the reply my neurologist has just changed my meds from keppra to Lamotrigine so hopefully they help

[Cf1947 in reply to Scots_dad]

That's exactly what happened with my husband. Started on Keppra, then switched to Lamotrigine. No sign of any nasty side-effects from the Lamotrigine, so hopefully you will get on fine with them😊

[HSE_Survivor in reply to Scots_dad]

Hopefully Lamotrigine will help you , as changing my epilepsy meds in my first year of recovery made a huge difference for me. It is not unusual to change brands or to increase the dose until the seizures stop .

[HSE_Survivor]

Everyone is different. Some encephalitis survivors don’t suffer from epilepsy at all . Others only have seizures in their first year of recovery. These are the research stats the charity provides:

- The risk of later unprovoked seizures for people who had seizures during the initial acute encephalitis is about 10% at five years

- Herpes simplex encephalitis survivors (HSE) are more likely to have epilepsy than the survivors of other types of encephalitis .

I had HSE, and had seizures in my first year. Epilepsy meds (Keppra) got it under control until I had severe COVID in 2020, when I started having them again, including focal awareness seizures. These days, seizures can happen whenever I push myself too hard and don’t take time out and rest . I had a focal awareness one this week when I didn’t rest after a morning in work .

It is still early days for you , as it is only 3 months since you were first diagnosed with encephalitis. The focal awareness episodes you are having right now do not mean you will permanently have epilepsy . Your brain is still in the very early recovery stage, and there is still a chance you might not have seizure symptoms in the future. I was told it would take two years for my brain to ‘reboot’ and create new pathways around the damage zone . After two years I would then have a realistic idea of whether epilepsy was going to be a permanent problem.

I’ve attached the charity’s ‘encephalitis seizures’ info leaflet, as it explains this clearly . If your epilepsy symptoms become more frequent/ severe , definitely get another review with a consultant, as getting the right dose of meds is really important.

encephalitis.info/effects-o...

[Scots_dad in reply to HSE_Survivor]

Thank you for the reply better response than the phone consultation from the neurologist much appreciated 😊

[HSE_Survivor]

Thanks. 😊 You’re very welcome .

[Paula-38]

Hi Scots_dad,

I had encephalitis the day after my first birthday, and I had status epilepticus at the same time. I have been on anti seizure medication all my life and looks like I will be taking it forever. But interestingly I started off with convulsive seizures every time I had a virus/infection with a high temperature, they used to be monthly at the most but since my meds were changed when I was 10 I stopped having seizures 31 years ago now. It was pot luck they stopped.

My story is on the Encephalitis International website and please feel free to ask me any questions at all. I'm always happy to help anytime.

I totally agree with everything HSE Survivor said.

[Tuesando]

You should definitely speak to your GP or neurology to check it out. Epilepsy after encephalitis is not unusual and sometimes it only starts after discharge from hospital - but have it checked out so you can get the best treatment. Courage!

[Scots_dad in reply to Tuesando]

Thanks for the reply

[beckyalice86]

My daughter now 11, had HSV encephalitis in 2018. Her seizures and epilepsy diagnosis came 2 years later. She did become seizure free for 2 years after being placed on Lamotrogine. But the seizures have returned but are different in presentation. Her recent EEG also shows that there's seizure activity now coming from the right side of her brain, despite the ABI stemming from the left temporal lobe. The plan is to increase the Lamotrogine and hopefully this will help. Encephalitis is a horrible condition and in our experience completely changes lives.

[HSE_Survivor in reply to beckyalice86]

Controlling epilepsy can be a roller coaster journey. I had HSV encephalitis in 2013. I only had occasional seizures after that , but we could see they occurred when I’d pushed myself too hard . Then in 2020, after having severe COVID, the seizures suddenly increased.

Since then I’ve had my Keppra seizure meds tripled and I have not had a severe grand mal seizure for 16 months. If the grand mal seizures do start again, the plan is to start taking additional new brand(s) of epilepsy meds, as I’m taking the maximum Keppra dose. I just have to pace myself more carefully now .

Fingers crossed 🤞🏻 I feel ok, and hopefully your daughter’s epilepsy will settle down, too, with the right meds combination. One thing my husband found comforting was when I told him that I am never aware of grand mal seizures when they happen, and I never feel pain at the time, even though some of them have been a nightmare for him to witness . It is really important for family members of survivors like my husband and you to take care of yourself, too . ❤️

[Telesto]

I'm just over 2 years since getting Encephalitis - I'm on Brivaracitam, Lamotrogine and Clobazam. I still occasionally get these Focal Seizures, but it is typically when I've over done it with work (I need my brain for my type of work!) or I try to do two or more things at once when tired (like read a document and listen to someone speak). In short, I think it can depend on your level of mental tiredness and how much strain you put on the brain when tired - that's my experience anyway. I'm still learning after 2 years.