Seizure time: Full on deja-vu seizure last night... - Headway

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Seizure time

BaronC profile image
36 Replies

Full on deja-vu seizure last night outside a fish and chip shop of all places. Absolutely fine one second and the next all of my energy is drained and I'm staggering around like I'm pi55ed as a hammock. Ten minutes later, I'm fine. Exhausted, but fine.

What fun, though the fish and chips were nice

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BaronC profile image
BaronC
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36 Replies
cat3 profile image
cat3

Pretty blasé attitude, I must say. Does this happen often Andy and are you always in control ? :o

BaronC profile image
BaronC in reply to cat3

Not so much blasé, more resigned to it. Nothing I can do to change it, so I have to carry on. I have had partial seizures possibly on a monthly basis for some years now.

To be perfectly honest, as long as I never have another generalised seizure again, I'll live with them. Now they WERE a killer and put me out of action for days at a time, so I'm simply thankful and carry on regardless of what my brain chucks at me through the haze of medication.

cat3 profile image
cat3 in reply to BaronC

I'm sorry, I didn't know this Andy. When you talk of 'partial seizures' are these the same in terms of experience but less potent, or shorter in duration ?

BaronC profile image
BaronC in reply to cat3

It's really very difficult to explain, but I shall try. I experience a sensation of deja-vu, totally unlike what you normally associate with that phrase, you know, 'I'm sure I've done that before', move on...

The epilepsy deja-vu involves every sense in your mind, every fibre of your being knowing with 100% certainty that everything happening around you, the place, the people, the noises, the smells has happened before. My brain for a brief few seconds struggles to adapt, to convince me it's not a dream, or it was a dream I'm reliving, or that it HAS happened before. And it TOTALLY exhausts me. I manage to mutter'leave me alone' and then spend a minute or two coming back to reality.

B_S_A profile image
B_S_A

Seizures. Suck.

Nuff said.

BaronC profile image
BaronC in reply to B_S_A

Oh yes

cat3 profile image
cat3 in reply to B_S_A

Yes I believe you Ben..........I know your life has been severely disrupted by seizures but many of us are fortunate not to have ( therefore not to understand) the different types. I've Googled it on occasions but that doesn't explain how it impacts on individual's daily lives.

Correct me if I'm wrong in believing yours are grand-mal ?

B_S_A profile image
B_S_A in reply to cat3

Yeah, full on tonic-clonic seizures. I get plenty of warning though (an "aura") so sometimes I can pull myself out of it.

They are horrible and I wouldn't wish them on anybody.

BaronC profile image
BaronC in reply to B_S_A

I agree and I sympathise with you. They are horrific.

cat3 profile image
cat3 in reply to B_S_A

Sorry Ben, I know it's a luxury for me wanting to know these details whereas you live constantly under the threat of seizures. But do you mind explaining what you do in order to 'pull yourself out' of one.

Is it some kind of mind over matter battle ?

B_S_A profile image
B_S_A in reply to cat3

It's absolutely no problem :)

I always know when I'm about to have one, and it's not an easy feeling to explain as you can imagine. But when I feel it, I lie on the floor, smile and think; "it doesn't matter if you have a seizure", which takes the pressure out of it and calms me down.

If I have my ipod on me, I get it out and listen to a particular song (blackout by muse) and sing along to it. When I'm at the point where I can't pull myself out of it, I can't speak, so being able to sing is good news.

During an aura I can't quite figure out where things are (in terms of where I am in certain rooms etc). For example, during my last aura, I pointed to different areas in the room and named which room is behind each wall. All these things assure me that I'm ok and keep me relaxed.

Very much mind over matter yes.

That's the best I can do to describe it!

cat3 profile image
cat3 in reply to B_S_A

Sorry. now I'm confuse by this bit = When you can't pull yourself out of it, you can't speak but can sing ?

Are you saying you can't articulate, but can hum a melody ..................& that keeps you in touch with reality ?

B_S_A profile image
B_S_A in reply to cat3

Nono, I can speak, and as long as can speak (or in this case sing) it means I still have time to pull myself out of it.

This is all during the "aura" stage of the seizure (no jerking around)

BaronC profile image
BaronC in reply to B_S_A

How very strange! When my generalised auras kicked in, there was nothing, nothing I could do that would stop the seizure happening.

Kirk5w7 profile image
Kirk5w7

I add my support for you with this, as Cat says some of us are lucky enough to escape seizures, but our best wishes are with you always xxxxxxx Janet

Negeen profile image
Negeen

Don't you have to tell ur doctor everytime you have one?

hayabusa profile image
hayabusa

I am glad to hear you didn't suffer any major injuires while enduring the seizure.

Are you concerned about when and where they happen? Could have been a less safe place

than outside the chippie.

BaronC profile image
BaronC in reply to hayabusa

Fortunately I don't lose consciousness and I'm fully aware of my surroundings. It's simply that I enter the twilight zone until the epileptic activity has run it;s course.

I can't really afford to be concerned about them happening because if I was, I'd never leave the sofa.

Sem2011 profile image
Sem2011 in reply to BaronC

Hi Baron hope you not too shattered by it. it is good you are not letting seizures rule your life. Best wishes

BaronC profile image
BaronC in reply to Sem2011

Thank you very much indeed

YOU KNOW I'M THERE WITH YOU. SO SAD YOU HAD TO GO THROUGH IT. MAKE SURE YOU GET THE REST YOU'LL NEED BEFORE YOU TRY & CARRY ON AS 'NORMAL'

BaronC profile image
BaronC in reply to

Thanks you, appreciate it

cat3 profile image
cat3

Thanks for explaining it Andy. Just one more question ; have you ever noticed a trigger for these episodes, or are there things which need to be avoided as a precaution ?

BaronC profile image
BaronC in reply to cat3

Nope, no trigger at all to them. I used to have the 'auras' prior to a generalised seizure, but for these, no, nothing at all. It literally is a split second thing. I'm fine, then...

ricozoe profile image
ricozoe

hope you feeling better tday,i ave epilepsy since my brain op,i am also awake through the fits,but i understand the energy it takes out of you,

BaronC profile image
BaronC in reply to ricozoe

I'm much better now thanks. Hope you're battling on too!

ricozoe profile image
ricozoe in reply to BaronC

glad u feeling better,i also get warning feeling and then the shaking starts,i try n sit down,when my head starts shaking n eyes start rolling i hold my head untill it starts to go,i

often think people who see this must think im nuts as i normally talk to my brain n say ok stop now,but as i am concenteating so hard it seems to get me through.sorry fr such a small reply earlier my brain decided it was tired and went into forgot wat i was going to say mode.take care x

BaronC profile image
BaronC in reply to ricozoe

Don't be daft, you don't need to apologise, I obviously know exactly how you feel. You take care too and have the best weekend you can have

MY FITS ARE IDENTICAL TO BARONN C. A LOT OF THEM COME OUT OF NOWHERE BUT IF THEY DO HAVE ATRIGGER THEY ARE TRIGGERED BY RANDOM LIGHT, THE WORST IS EVENING SUNLIGHT BUT STROBE LIGHT HAS NO EFFECT - WEIRD.. SMELL CAN GET ME GOING. SADLY YOU CAN'T AVOID LIGHT & SMELL SO IF THEY COME THEY COME.

cat3 profile image
cat3 in reply to

Evening sunlight (amongst other things) is also a trigger for migraine. I was gardening the other evening and the sun seemed especially low and bright. I should've gone in, I know, but didn't and sure enough it hit me suddenly an hour later.

This is what made me wonder about possible triggers for seizures.

THE NEURO DESCRIBED IT AS YELLOW SPECTRUM LIGHT SENSITIVITY.

I SEEM TO BE OK WITH ARTIFICIAL YELLOW LIGHT.

APPARENTLY WINTER SUN IS MORE WHITE SPECTRUM LIGHT WHICH IS SAFER FOR ME BUT SUNSET CAN HAVE A MILD EFFECT.

VERY STRANGE WHAT AFFECTS US.

Torquay profile image
Torquay

Glad you are ok. your sense of humour is an inspiration. There is a saying laughter is the best medicine.

BaronC profile image
BaronC in reply to Torquay

Was that meant for me? I get thoroughly confused on these threads what with people answering the original post, then others answering answers and then answers to those answers, with answers to answers inside other answers and so on!

My brain hurts, again :)

Torquay profile image
Torquay

Hi Baron C

Yes the reply was to you.

Just to say glad your ok and the way you handle difficulties is an inspiration and a motivation to me to keep going and not dwell on the negative experiences of my health problems. Thanks.

BaronC profile image
BaronC in reply to Torquay

I'm just being me, that's all we can ever be. If that helps you in any way at all, then I'm glad I could help and I'm slightly proud

Andy

Winb143 profile image
Winb143 in reply to BaronC

I have had epilepsy since puberty, I had it under control until my SAH. Scares me witless when my hand/arm twitches so I just lay down all day. I do not know about you on here but if I wake up shaking I know to relax if poss.

Huh I cry out "Mum help me" and she died in 1976.

Not had one for 4 years. So guess I am lucky.

Good luck to us All xx Baron hope all is well now.

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