Epilepsy?

[BigPizzaPie]

I know nobody can diagnose me here, but just wondered if this sounded familiar to anyone with epilepsy or knowledge of epilepsy?

For the past 2-3 years I have been experiencing something strange that I had put down partially to anxiety, partially to hormones. The best way to describe it is that will be in the middle of doing something - usually talking to somebody - and suddenly I stop being able to focus on what they are saying, feel very hot and disassociated from my body, I can hear my heart beating loudly and slowly and have a very strange feeling that feels a bit like de ja vu or an out of body experience. It doesn't last for long - maybe 2 or 3 minutes - but its really upsetting and I often feel really tired and tearful for a few hours afterwards.

So, as I said, have put this down to perhaps anxiety/hormones/stress.

A few other things have happened to me in the last few months, though, and I am now starting to worry that I could be epileptic.

1. I had a weird 'episode' driving home from work one day just before Christmas. I suddenly felt really weak, spaced out and unable to concentrate properly. I pulled over several times on the journey to rest, managed to get home, and then had to go straight to bed as was uncontrollably tired. Felt fine the next morning.
2. A couple of weeks ago I kept getting the weird, tired, spacey feeling while driving, to the extent that I didn't drive at all for a week, as I felt my concentration was too poor. This is despite getting enough sleep. Then on one morning I passed out completely at home, was only out for about 10 seconds, but had no memory of it happening/didnt feel that I was about to faint etc.

I got an emergency appointment with my doctor that day - had an ECG, blood tests, urine sample, blood pressure checked etc. All normal. Epilepsy wasn't mentioned, but I was just reading something online about epilepsy and it suddenly rang an alarm bell with me...

Any thoughts or experiences appreciated. (I will be going back to my doctors)

It could be. My DH has epilepsy due to a head injury he received in a road accident 40 years ago, but he has obvious epileptic seizures. I know someone who has had a couple if seizures but normally presents as absences and she has been diagnosed with epilepsy. My MIL also has absence seizures now but she is in her 80s. You do need to find out what is causing this and sounds as if you shouldnt be driving, at least whilst not knowing what it is. I hope you get it sorted soon.

Definitely go back to the doctor and request an EEG, make sure it’s at least 24/48 hours rather than a few hours. Could be absence seizures but my DS has them and I believe they typically only last approx 20-30 seconds.

Have you had your thyroid tested? Or maybe it could be vertigo?

It could be - it is such a complicated decision. Definitely worth asking for an EEG. If it is you sound as if you are having focals but they can progress onto tonic clonics so it is worth getting investigated before that happens.

Condition not decision!

Could be blood pressure or tiredness though. I’m not saying you have epilepsy just that it would be worth asking for an EEG.

I have epilepsy. I've also had episodes somewhat similar, but shorter than your experience, I had a 48 hour eeg and it isn't epilepsy. (I had to click a button when I felt the episode started and finished and they looked in detail at those sections on the eeg).

Any vision or back problems at all? Just rings true with my dh but no diagnosis yet.

It could be. I'd go to the GP and talk to them. It could be another condition that causes seizures. My dh has v infrequent seizures ( he has a cavernous angioma) that cause atypical seizures that last a long time. No two are the same in his case. Last one was dizziness, spaced out feeling and an inability to stand up.
It is definitely worth getting checked out.

Thanks for your replies, all.

I'm going back to the GP this week to discuss.

I had my thyroid function tested and TSH and T4 within normal range. y ferreting levels are the low end of normal range, but I'm not anaemic (started taking iron supplements last week, anyway).

My BP is fine.

The passing out episode was very odd. My DH said my eyes just rolled back in my head and I keeled over backwards, although didn't have any other symptoms - no convulsing or jerking about etc. I felt absolutely drained and spaced out for two days afterwards, though, and looked awful...

Vision issues: my eyesight has rapidly declined in the last two years, but I put that down to age, I guess (I'm 40). I'm due an eye test, actually.

Back problems: yep! Always had a dodgy lower back and my neck/shoulders constantly ache.

ferritin obviously...ferreting would be weird

It sounds slightly similar to my experience of epilepsy (I have focal seizures and absence seizures). What you have is similar to my initial ‘aura’ (before I have a full on focal seizure). With that said my neurologist initially was firm I didn’t have epilepsy because it’s a rare form of focal seizures, in particular he suggested things like my heartbeat and feeling off could be due to blood pressure or pre-syncope related. In particular, he requested a standing blood pressure test even though the standard blood pressure test showed I was normal like yours’ did (as did the standing one) and a tilt table test. I know my neuro was concerned as most of my seizures happened when I was upright, be it sitting or standing. The fact that the recent incidents coincide with driving does stand out.

I would request an eeg, as others have said, preferably sleep deprived! Has anyone witnessed your episodes? Ask them if they’ve seen anything like: fumbling with your clothes, turning your head, eyes moving around, light eyelid fluttering, flushing, etc. Epilepsy is usually diagnosed on the basis of description of the events. See if there’s any triggers such as if your cycle might be connected to it. When you passed out did you black out but remain upright, or did you fall/move?

Sorry posted too late! When you fell over were you limp or did your muscles contract? Just dropping isn’t common but there are some seizures which cause that - according to the person I know with a child with atonic seizures they are often quite distinct. If you feel like that again, try and get someone to film you (as weird as it sounds)!

Pavlara

DH says I keeled over backwards completely straight (luckily fell in to a pile of clean laundry!) and lay still in that position for about 10 seconds until I came to.

Yes to flushing. When I have the weird 'out of body' feelings I flush massively. It feels like whole top half from breasts up to the top of my head are burning. In reality, I just get a pink pink and patchy looking, but it feels like I should be bright red as I feel SO hot. Thats why I wondered if it was anxiety-related for a long time, like a sort of panic attack? There is a weird feeling of fear and dread, too, which is totally disproportionate or unrelated to the situations I am in at the time.

Re: cycles. Yes! I passed out the day before my period arrived. I have dreadful periods. Feel pretty unwell for about 5 days before I get it each month. I have been taking fluoxetine for severe PMT for 3 years.

Palavra, sorry

Go to the doctor and ask to be refers to a neurologist. You need to stop driving if these incidents are happening in the car as it's dangerous.

OK, no driving! I'll take that seriously, don't worry.

I'll ask about seeing a neurologist/the EEG (?).

Thanks all

My DH has non epileptic associative disorder, which basically means when stressed he has a seizure in the way that other people might get a stress headache or dodgy guts.

It was a very long road to diagnosis, and both positive and negative stresses caused it eg moving house but also going on holiday.

I made lots of videos of the seizures (which tended to start in his sleep) which helped with the diagnosis.

He has been well controlled on antidepressants for a few years now we know some of the triggers and warning signs (no more alcohol, late nights, fevers also a trigger).

So my advice is to start a diary, take videos and bear in mind it could be a long road to diagnosis. I still sometimes doubt dhs diagnosis (particularly as his mother has epilepsy) and used to wonder if one of our DDS would have to have a seizure before they diagnosed DH but I can't deny he has been well for a long time now on his current meds.