when you were diagnosed...

[petero]

I try to keep a seizure diary... it's obvious when I have a tonic-clonic, but having been diagnosed just a few years ago, it's tricky to tell when I might be having a partial seizure, simple seizure... because maybe I've experienced them for quite a while and have just accepted them into the realm of my experiences

how do you tell if you're having a simple/partial?
being an artist and musician I thrive on thoughtform, which might involve seizure types

 

[valeriedl]

Really unless someone sees me have a seizure then I don't know I had it.

Sometimes when I'm alone I may not feel right. A little after that feeling I'll get a headache, which is usually a sign that I had a seizure. But since there was no one there to see me when I didn't feel right I don't know if it was a seizure for sure or not.

 

[elizzza811]

Until I ran my car off the road and finally had a diagnosis, I had no clue I was having seizures. I think I would recognize a seizure in myself today, however. Metallic taste + dizzy spell = seizure. Waking up confused = just had one or more seizures in my sleep. Wandering around in what feels like a 'daze', accomplishing nothing because my brain is 'locked' and unable to focus = seizure in progress. Left leg suddenly collapsing under me = atonic seizure.

I just wish I'd have known these things before. In retrospect, I've been having seizures since at least my early teens.

I have to ask though...what alerts you to the fact that you've just experienced a tonic clonic? I don't think I've ever had one, but would I even know if I was living alone? Are you sore? Laying on the floor? Is the furniture toppled over? How do you know?

 

[qtowngirl]

Until I ran my car off the road and finally had a diagnosis, I had no clue I was having seizures. I think I would recognize a seizure in myself today, however. Metallic taste + dizzy spell = seizure. Waking up confused = just had one or more seizures in my sleep. Wandering around in what feels like a 'daze', accomplishing nothing because my brain is 'locked' and unable to focus = seizure in progress. Left leg suddenly collapsing under me = atonic seizure.

I just wish I'd have known these things before. In retrospect, I've been having seizures since at least my early teens.

I have to ask though...what alerts you to the fact that you've just experienced a tonic clonic? I don't think I've ever had one, but would I even know if I was living alone? Are you sore? Laying on the floor? Is the furniture toppled over? How do you know?

Yes you would know without a doubt. Waking up on the floor with a sore head and/or other body parts that hit stuff on the way down would be the main clue (however, it could be in bed or somewhere where you're off your feet so it really depends exactly what you're doing at that second). The other ways you'd know is that you're very out of it, dizzy, for the first five or ten minutes (a bit different for everyone) you can't walk or talk properly, speech is slurrred so it pretty much comes out as babble. It's best to try not to talk, just give your mind a rest and let it come back without thinking too much or trying to accomplish even a conversation. Same for moving around, best to stay where you are until you 'get your bearings.' Another clear indicator, if you stand up as soon as you open your eyes you're likely to fall back down, balance is lost and the brain needs time to adjust before it comes back.
Depending how/if you fall your tongue may be bitten as well. Sorry if it sounds like hell but there's really no other way to put it.

 

[Crash]

For me most of the above,cant put it any better myself,especialy the waking up on the floor and wondering how the hell i got there.I always know because i always bite the right side off my tounge without fail.

Mind you having one in public can be a million times more daunting,people screaming at you that you,ve had a seizure and pinning you down when you try and move,all this when the brains not working freaks the hell out of me sometimes.

 

[petero]

thanks elizzza-
I've been paying more attention to the first types of effects you mention...

when I have had TC seizures I have known it because paramedics appear in my face talking gibberish
after I was diagnosed I recalled an incident in proximity in time prior to diagnosis where I woke up in the middle of the night in my bathroom with blood on my face and on the floor from my towel rack I found out later, somewhat forensically lol.
but paramedics in my face appearing from 'nowhere' has been the typical show.
Charlie Brown 'adult language' (muawawawawathepresidentis? muawawawhereyouare? mwawadoyou knowwho thisis?) segues into rationality gradually. I'd considered it manageable after maybe 5 minutes, but it has varied. the second observed one I slept for quite a few hours and had no choice about it. (same with the towel bar tango said the dried blood). other times I haven't slept or had the same exhaustion level. but it could still creep back into some Charliespeak and buzzy-wavy reality for several hours.
now that I'm not as freaked out about the whole experience sometimes the wavys can be pleasant.

Until I ran my car off the road and finally had a diagnosis, I had no clue I was having seizures. I think I would recognize a seizure in myself today, however. Metallic taste + dizzy spell = seizure. Waking up confused = just had one or more seizures in my sleep. Wandering around in what feels like a 'daze', accomplishing nothing because my brain is 'locked' and unable to focus = seizure in progress. Left leg suddenly collapsing under me = atonic seizure.

I just wish I'd have known these things before. In retrospect, I've been having seizures since at least my early teens.

I have to ask though...what alerts you to the fact that you've just experienced a tonic clonic? I don't think I've ever had one, but would I even know if I was living alone? Are you sore? Laying on the floor? Is the furniture toppled over? How do you know?

 

[qtowngirl]

Charlie Brown 'adult language' (muawawawawathepresidentis? muawawawhereyouare? mwawadoyou knowwho thisis?) segues into rationality gradually. I'd considered it manageable after maybe 5 minutes, but it has varied. the second observed one I slept for quite a few hours and had no choice about it. (same with the towel bar tango said the dried blood).

LOL towel bar tango, thanks for the laugh petero!! I will think of that now every time the shitty memory of that day goes through my head... that's a good name for it. Sounds like from this and a few other posts that our experiences have been very similar... towel bars... waking up on bathroom floors... people in your face and you're like WTF? (mine so far have been police and first aiders, other than family and one by myself). That gibberish is really something isn't it, hearing it AND talking it.
But really, thanks for the 'tango'... I can't stop laughing!!

 

[petero]

LOL towel bar tango, thanks for the laugh petero!! I will think of that now every time the shitty memory of that day goes through my head... that's a good name for it. Sounds like from this and a few other posts that our experiences have been very similar... towel bars... waking up on bathroom floors... people in your face and you're like WTF? (mine so far have been police and first aiders, other than family and one by myself). That gibberish is really something isn't it, hearing it AND talking it.
But really, thanks for the 'tango'... I can't stop laughing!!

the gibberish thing for me is so frustrating because it's like I KNOW I can comprehend the things that are going on and that I should be "normal" in a given situation - but not knowing how to be normal in a situation and knowing that I do know but can't figure out how to at that moment has been very frustrating but it has gotten less frustrating as I figure out I haven't done anything wrong
I hope that makes sense

there is a powerful tendency to feel <ERROR ERROR ERROR DANGER WILL ROBINSON> immediately after seizures - but I think I'm ~learning~ my way around these emotions
and in that sense it's frustrating NOT having seizures or control, because its an empirical method of figuring them out, figuring out what's going on with my head and in figuring out how to deal with them - physically, emotionally, psychologically...

 

[petero]

I have a new idea for a gameshow - "Epilepsy the Gameshow" - akin to the 'what would you do?' tv show

gameshow host walks up to people randomly on the street with confetti and tells them "awww I'm so sorry - you almost won $10,000 dollars! but something you just did disqualifies you."

and then the gameshow host walks off leaving the person standing where they were in a halo of confetti and utter frustrated bewilderment

and that's all that happens on the show - over and over again
just to make people randomly feel like shit, at fault, and like failures, simply for having done nothing at all

 

[qtowngirl]

I have a new idea for a gameshow - "Epilepsy the Gameshow" - akin to the 'what would you do?' tv show

gameshow host walks up to people randomly on the street with confetti and tells them "awww I'm so sorry - you almost won $10,000 dollars! but something you just did disqualifies you."

and then the gameshow host walks off leaving the person standing where they were in a halo of confetti and utter frustrated bewilderment

and that's all that happens on the show - over and over again
just to make people randomly feel like shit, at fault, and like failures, simply for having done nothing at all

LMAO - you're on a roll man!!!!
think then maybe they'd have just one bit of a clue???

 

[petero]

LMAO - you're on a roll man!!!!
think then maybe they'd have just one bit of a clue???

I guess the show host would have to carry a billyclub also... or a tazer?


:e:

 

[qtowngirl]

and in that sense it's frustrating NOT having seizures or control, because its an empirical method of figuring them out, figuring out what's going on with my head and in figuring out how to deal with them - physically, emotionally, psychologically...

I hear you. I mainly feel lost, as in if thousands of specialists all over the world are taking decades upon decades (over a century actually at this point) to figure this disease out, how the hell am I to try and do that for myself just day after day after day...?
Pretty hard to feel sorted out, like you said, "physically, emotionally, psychologically," when you have very little to work with and are scared sh--less half the time and depressed the other half.

 

[qtowngirl]

I guess the show host would have to carry a billyclub also... or a tazer?


:e:

Well, going by a thread we've all been talking on lately...
How about an ambulatory eeg? - hook up anyone who gets out of hand or mouthy (lol like that guy on your bus the other day). See f'er... not so fun is it?!?!

 

[petero]

Well, going by a thread we've all been talking on lately...
How about an ambulatory eeg? - hook up anyone who gets out of hand or mouthy (lol like that guy on your bus the other day). See f'er... not so fun is it?!?!

can I have an ambulatory eeg?
screw the guy on the bus - I don't want to hunker in a hospital for a week+