Blacking out after hard-to-explain, unsettling "aura". Seeing neurologist - what to mention/ask?

[Goodnesswhathappenedinhere]

Twice this year, months apart, I've fallen unconscious from sitting after experiencing a strange sensation in my brain. I'm 45 and this is new for me.

It's hard to explain, but the sensation beforehand is like a wave of jumbled fragments of familiar scenes/memories/dreams intruding into my brain. I try to make sense of these thoughts but I can't. The whole sensation is deeply unsettling, disorientating and makes me feel sick. The sensation has also happened a handful of times without losing consciousness.

Both the times I've blacked out, I've injured myself on impact. I'm not losing continence, and I seem to be out for no more than a minute or so, and coherent quite quickly on coming round. With the latest, DP recalls hearing a groan and then a crash from elsewhere in the house. (I don't remember groaning - I don't actually feel an "Oh, I'm going to pass out" feeling; I seem to just switch off.)

I've had a "reassuring" MRI and echocardiogram. I'm awaiting EEG results (although done months in between the blacking-out episodes). All ECGs and other tests have been fine. A neurologist my GP referred me to said in the summer that if it happens again (which it now has), he'll treat it as epilepsy. But why this now, at 45?! I looked online and 40-50 is about the least likely age to develop epilepsy. Early in the year, before having passed out, I chalked the occasional weird brain sensation up to peri-menopause, which has hit me this year. I started HRT in February. Apparently, perimenopause/HRT can make existing epilepsy worse, but there isn't evidence to suggest they can cause it to actually start (but there isn't much research).

Meanwhile, I worry it'll happen again and my young DD will have to deal with the fall-out, or I'll be on my own and hit my head (I've been so lucky DP has been home both times - he works outside the home). I worry about crossing the road doing the school run, cooking, walking past the corners/edges of worktops and furniture - so many normal everyday things now seem potentially dangerous. I've stopped having baths (which I love), no longer go swimming (which I love), can't do any DIY up on a step or ladder (we have so much to do!), etc. - all advised after the first episode. And I've surrendered my driving licence, and it will be at least another year before I can drive again (as long as I don't pass out again in that time). I live rurally and work from home, so it's so, so isolating, not just for me but DD too (although I'm grateful I can at least still work); I feel like my world - our world - is shrinking and life is on hold.

I need light at the end of the tunnel. Any ideas? Any similar experiences and it got sorted and life got better? I'm seeing the neurologist again soon because it's now happened again - what must I be sure to mention/ask/be aware of to get the most out of the appointment?

Thank you.

Hi op. Just saw this never got answered. Did you get to the bottom of it in the end yet? Hope you’re ok.

This exact same thing happened to a friend of mine in her early 40s. She too would have an ‘aura’ - she would often feel like she was about to have some kind of epiphany about whatever she was thinking about at the time, and would then black out, coming round a few minutes later.

All investigations came back normal, but they ended up putting her on anti - epileptic meds to calm any toward electrical spikes in her brain - and it has never happened again.

If all tests come back as normal it could be Functional Neurological Disorder (FND). Another possibility is NEAD (Non-Epilectic Attack Disorder). A lot of FND sufferers also have NEAD.

@Goodnesswhathappenedinhere i have had this recently, in November. I got the weird aura you describe re the thoughts/like deja vu/did I dream this(?) and then blacked out for about a minute dh said. He was on phone to ambulance when I came round and in the end, due to pressure on ambulances, he took me to a&E and I had ecg, bloods and cT scan. Nothing found, but GP has referred me to neurology and I have an appt in April.
I have had the sensation/aura a few times, first was nearly 4 years ago, then I had a few v brief ‘flashes’ of it a couple of times (time before this was about a year ago when v anxious) and then the big blackout scenario 5 or so weeks ago. Again, j had no ‘I’m gonna pass out’ sensation either which really scared me as I am a bit of a fainter in general, but it was a v different sensation Ie, no sensation. I had been having mini ‘weird thoughts’ all day (I was away), then I got the mega one at home.
The gp/hospital dr were clueless (I went to gp after it happened the first time and she wasn’t particularly concerned). On googling it could be temporal lobe epilepsy but obviously that would need to be diagnosed by a neurologist. I am wondering if it’s FND though as I do have some other symptoms that tie in. Im early 50s.

Ps: dh also said I was ‘moaning’ when unconscious and I was also pretty ok after - had a couple more sensations in a&e but no black out.

This sounds like what happened to my BIL. It turned out to be epilepsy. Definitely get it checked out. There is such a thing as partial seizures where you feel Deja vu or other jumbled feelings and black out or feel very disconnected/ distant/ out of body ish. Go to the doc. In the meantime stay hydrated a x sleep well as exhaustion can trigger a seizure. Good luck.

It may not be epilepsy.

A lot of seizures like that turn out to not be epileptic, and the diagnosis then is the snappily named NES
(Non epileptic seizures).

Unfortunately there is no treatment or anything they can do.
(Or at least that is what I was told)

My friend has something similar, she's been diagnosed with temperal lobe epilepsy. She describes it as a deju vu type feeling.

It’s exactly what it feels like, very strong deja vu.

@Goatymum shes had a lot of issues with getting diagnosed as they said its difficult unless she's having a seizure at the time. It's horrible, she goes white as a ghost and throws up afterwards. They have given her epilepsy medication but she still has the episodes fairly regularly. Particularly if she's stressed.

@TheLadyIsAVamp stress and tiredness seems to be a trigger for me although first time it came out of the blue totally. It also makes me feel sick, like a rising nausea feeling. It passes quickly, but the blacking out was so scary. I’ve got a lot going on health wise and this is just another thing to deal with.

My seizures were caused by a benign brain tumour, so different to yours and quickly identified by an MRI.
But I went through similar experiences - absence seizures and seizures where I lost consciousness with no warning. It became second nature to stand well back from the kerb when crossing the road, to avoid cooking on the hob in case I fell face first on to it etc. Some people go up and down the stairs on their bum.
You don't say how old your dd is but mine was 18 and was still traumatised by it. She only told me the other day I used to go a grey/white colour and my lips would turn blue. Could you teach your dd to phone her father, or grandmother, neighbour, close friend etc?
Look into whether you qualify for PIP and a free travel pass. If you need any thing to make it easier for you to do your job, e.g. noise cancelling headphones, Access to Work might fund it.
Sorry, can't really help with what to ask the neurologist but these suggestions might help you or others on here.