For a Family member

[gattaca222]

I actually joined this site for a friend to try and get more information about epilepsy. He began having seizures just over 2 years ago and continues to do so.

The seizures came out of the blue and have been constant since then. He's in his forties. Initially, during seizures he'd escape form the house and run around the neighbourhood, (sometimes in only pants). If anyone tried to prevent him he'd become violent.

After the episodes he's remember nothing about them and scarily, during the first few months of seizures he lost a lot of memories including people he knew.

The seizures have changed now. He sometimes turns around in circles as though looking at something or has the violent grand mal's.

They all happen in his sleep by the way.

He won't join websites and such so, I'm doing it to get information to help him and his network of friends and family to understand the condition better and medications available.

[Adlon57]

Ask "Epilepsy Action" for advice, I could give advice, but this needs qualified medical advice, Good luck!

[Caesard]

Is there a clear diagnostic of this pathology?It doesn't sound like a typical epilepsy manifestation. My personal opinion (provided that happens only during sleep time, it's duration and behaviour) is that it may be a sleep related pathology (REM disorder) not necessarily epileptic.

But it could also be a TLE related psychoric behaviour. It really needs to be thoroughly checked via neurology specialist, including a videoEEG, surveillance (have a camera filming the onset of such a episode) and I would personally look for inflammation and neuro autoimmune antibodies, as well as a psychiatric evaluation.

[gattaca222 in reply to Caesard]

Thanks for this,. Yes it's all very unusual. He is seeing a neurologist and has had mri's etc. They said he initially had encephalitis and perhaps he now has scarring on the brain. He has further neurology appointments though so, fingers crossed we get a definite diagnosis.

All very strange.....

[Caesard in reply to gattaca222]

I think the neurologist is on to something. I'm not a professional but I had the same thought, the encephalitis would fit the profile. Viral or autoimmune (or even cascading) it might be all related to brain inflammation.The good news it's that it can be managed. It takes time, it's trial and error but it can be kept under control. But first thing first, he needs a diagnosis.

[Upsydaisy2005 in reply to Caesard]

what’s the duration of this behaviour change? Need to rule out encephalitis. Probably mixed pathology

[Caesard]

She says 2 years. Sounds like encephalitis to me too but this is aftermath. And probably inflammation/scaring and/or autoantibodies.

[gattaca222]

Yes, the neuro said it cold be scarring. They need to do more tests.

[gattaca222]

So glad I joined this site. I go with him to his appointments as he often forgets things or gives the wrong information. I also keep track of his meds.

This site is so useful with people who actually take the time to offer support.