Webcam & Internet - Automatic vEEG?

[brain]

I will NOT disclose whom they are, rather I will
just merely disclose that it is very interesting
to have rapport - but first and foremost, permit
me to disclose that I had "canned" the "Webcam"
years ago; without much ado and going into details
I will put it into one word ---> "Perverts".

Being "Webcam" weary, I am not the type that
'broadcast' thyself. I will be blunt at that. PERIOD.

Nonetheless, I am not posting to 'brag' or 'boast'
but rather an implication of to the fact it is nearly
rather a interesting, or should I imply:
Video Electroencephalogram - LIVE?

:?

Having known the party for quite some time, who
also has Epilepsy; all to familiar grounds - however,
it was unfair that one party had the cam and the
other party did not. So, I went out and obtained
one ~ but was not expecting them to be observing
much of anything ... err - well, umm, on the other
hand ... it is interesting!

*laughing*



One can now easily tell when the other is going to
seize and the other awaits, but there are times
when one feels helpless and the need to be there
yet, one cannot. It is strange, but interesting.

I can almost imply to quote and unquote "Steve
Urkel's "Did I doooo daaaaaaatttttttttt?" ... in
a lot of ways, it is kind of embarrassing at first,
for one does not know exactly what to make of
it - for it being the internet; but yet - the under-
standing and compassion is all there ... all the
more to despise Epilepsy.

Personally, I did not think I would ever have any
seizures on the Webcam, much less, ever during
awaking hours ... but come now the realization,
what my own family has become so used to and
ignored because, I guess, of its frequency and never
reported ~ which goes back to what my Doctor had
made a comment of "I wonder if you have more
seizures than you realize?" (even though it is clearly
shown on the EEG's / video EEG's).

I ponder now, exactly how many individuals truly
have Webcams and have rapport with others who
have Epilepsy are out there?

I have not seen any postings / threads or any
discussions pertaining to this matter at all; not
that I am trying to "start a trend" here - but
rather, I have found it to be quite of much benefit,
for what they have seen actually is far more of
assistance (not only do they have Epilepsy and
know) - but they can also discern when one is
about to strike before you even realize it!



I do have to admit - it is not "funny or entertainment"
but it is hard to monitor such with limited viewing
via the Webcam - however, one thing that is so
unusual is the ability to KNOW and I am left, but
to wonder ---> do people with Epilepsy know
when another person with Epilepsy is about to
seize? The signs are all there and the moment
they strike, they take heed - something that a
normal person would miss out! I find that very
unique, but I am left in awestruck wonder as well
because there's times I know that I know that I
know that party is going to seize in a few moments
before they even seize! Epilepsy is strange, very,
very strange - and one does not even have to
say a word!

:?

 

[Crystal11]

Rachel and I have known eachother for over two years now and most of those two years we talked over web-cam/internet. We would talk everyday for sometimes for the majority of that day visiting and then leaving to do other things during our day. Sometimes I would have an aura and Rachel would know it- it is frustrating to her to see a seizure happening over the web-cam and not being able to help much but to observe or take notes.. I think it has helped since sometimes I don't realize a seizure has happened. Most of the times I do since I have CPs.
Rachel video-taped two longer CPs I had which I got to see/hear which was very odd to me. I think for some, if you get a chance to have it video-taped you can show it to your neurologist if there are any changes etc..
There were several times when my complex partial seizures were a little different then that last time- which was a good thing to realize and tell my neurologist. It helped me quite a bit. I told me doctor that she had video-taped through the web-cam several longer seizures and my neurologist liked the idea. I wrote a blog about it on epilepsy.com and suggested that for others to consider if they have people they visit with online. I was truley nerve-racking to see or hear my own seizure- I wanted to tell myself "come on! Wake up!" But I knew it would be a while before the seizure was over. It looked so strange to me- now I was able to understand what others saw when I had a seizure.. My twin sister has seizures as well but her are much shorter than mine..
Anyways- observing seizures in someone you care about or love and has your trust can be extremley helpful- its like a live seizure journal.
I can remember a more draumatic der my seizure Rachel recorded (who also has epilepsy) where under my eyes became blueish color. Its something my twin who is visually impaired could never tell.

SO- When you have a great friend who also has epilepsy, who understands what we go through it really can make a big difference. The fear isnt so strong compared to the general public, we know we will recover and be well again.

Take care everyone and be safe-
Crystal and her guide dog Umbro

 

[Crazy Monkey]

Hey Brainy

You have my permission to say who I am fft: if you want too.

It is certainly a new experience for me and we have both commented how much like a VEEG it is. It has taken some getting used too having every seizure I have, spotted. As many of you know I have spent 20+ years hiding them up.

To begin with I was finding it really embarrassing and kept hiding up once consciousness was regained and saw SEIZED splashed across my screen (Sharons subtle way of pointing out that I had a seizure).

The last couple of mornings I have switched my webcam on before work, I remember doing so, but I cannot remember much about our morning conversations. All I could see was SEIZED all over my screen and I could hear Sharon talking, also telling me that I had seized. Sharon was trying to keep count of my seizures this morning, 11 was the number typed on my screen before she gave up and I was only online 15mins. Certainly interesting, it is like the other person is monitoring you.

We do seem to have got to know each others warning signs, I can tell when Sharon is going to seize, the same as she points out that I am about too. I think when you have epilepsy yourself you are more alert to the signs and you think about these, rather then ignoring them and not thinking anything of them like a non-epileptic.

It is no fun being 5000miles away watching Sharon or anyone seize on webcam, I feel helpless, because I really want to be there with her, but there is nothing you can do. Instead I feel like I am spying from my lounge on the opposite side of the Atlantic. There are no words to describe how useless you feel.

But I know one thing for sure, now that I know how visible my seizures are, I am going to leave my webcam switched off when talking to non-seizure people, it was very hard but I have now got used to Sharon seeing me seize, but I am not ready for the world to see.

Oh and just for a change, the sun was shining in the UK while it was chucking it down with rain in Florida, haha. So I was typing to Sharon from my back garden, while she was stuck indoors watching the stormclouds.

 

[brain]

Well, okay, CM and I had been on the webby, won't deny
that. But she's a real sweetie, been there several times
when she really did not have to ~ however she's learned
a lot about me ... I REALLY DO LAUGH!

:roflmao:


*** BLUSH ***

 

[Meetz1064]

WOW, this

is INTERESTING. I do wish that I were able to have mine seen...... but mine are sheerly nocturnal, so that won't happen. Who wants to watch someone else sleep? Good grief!

I do think it's really cool that the two of you are able to do this though....

 

[brain]

On the other hand Meetz - you might want to retract that post - *laughing*

is INTERESTING. I do wish that I were able to have mine seen...... but mine are sheerly nocturnal, so that won't happen. Who wants to watch someone else sleep? Good grief!

I do think it's really cool that the two of you are able to do this though....

Errr, umm, blub, blub, yulp :: scratches throat :::

*laughing*

I could "say" CM has watched me sleep and I floored her
with one of those nocturnal seizures where she had a
lovely view of my carpet, but of course I had no memory
of this but I'll leave it to her to respond to that part!

But she most likely to warn you that "I" am a "dangerous"
Moderator who would floor anyone ... *laughing*

:roflmao:

 

[epileric]

Me Too

Recently I've found out that I turn my head during a sz like I did when I was younger except now I'm not aware that I'm doing it or even losing time when I do that.

As curious as I am though I'm not sure if seeing it would be satisfying & tell me a lot or be terrifying lol.

 

[Meetz1064]

Hmmmmm

Welll, this could be interesting to hear........I'm waiting.......

 

[brain]

Recently I've found out that I turn my head during a sz like I did when I was younger except now I'm not aware that I'm doing it or even losing time when I do that.

As curious as I am though I'm not sure if seeing it would be satisfying & tell me a lot or be terrifying lol.

This is one of the things CM is able discern that I am unaware
of, when my head shifts - she knows that a seizure is oncoming.

She has even learned that my cats, especially Cocoa, is strangely
sensitive to my Complex Partials - no matter where she is, like
the other day - she came zooming across the house into the
room where I was at with CM and meowing and keeping an eye
on me with Diamond (the younger one) who typically stays at
my foot end and stays with me. And often remains nearby until
the seizurey phase is over with then they are on their way back
to where they were. And it is possible that Cocoa is also sensitive
to Simple Partials as well, because I said nothing about the auras
at all and yet, she came zooming up to me - not the type of
"I'm hungry - feed me" attitude.

I think CM can definitely describe this "animal uniqueness" - and
what is so odd is to the fact my cats, which I just noticed these
things that I had not before (even with my Hearing Guide Dog
who was not even trained for this, for they never had such "thing"
as a Seizure Response Dog back in those days)... was their constant
"washing" of my hands / feet ~ which is making me wonder if specific
seizures truly do give out an odor. Just like I mentioned I smelled
'electrical burning' but being used to it - however, CM had already
spied that at the same moment the cats came rushing through was
when my head shifted. It is really eerie and strange - I cannot
explain any of this - but I can imply that seizure or seizures did
happen, if I am wrong CM will correct me - I think she typed in
C P then T C ... honestly, I was out!

:?

Terrifying? Not really - at first, it was like, okay now, let's try
not to seize in front of someone! *laughing* But these things
just happen ... *BANG* - whether we want it or not. And mind
you, "they are rude!" - in a middle of a great conversation, this
royal P.I.T.A. comes in and interrupts! LOL! It makes things
interesting ...

Then for example - for me, I am left with "where was I"? *laughing*

 

[Crazy Monkey]

Errr, umm, blub, blub, yulp :: scratches throat :::

*laughing*

I could "say" CM has watched me sleep and I floored her
with one of those nocturnal seizures where she had a
lovely view of my carpet, but of course I had no memory
of this but I'll leave it to her to respond to that part!

But she most likely to warn you that "I" am a "dangerous"
Moderator who would floor anyone ... *laughing*

:roflmao:

Yep Brainy should come with a hazard warning sign slapped across her, I mean fancy literally flying across the room and flooring the Crazy Monkey, mind you I did mention that she should vacuum her carpet :roflmao: The next day we were both laughing for about an hour like a couple of hyena's about this one. When she was flying towards me, can you believe I actually ducked hehe.

Sharon has unintentionally slept on webcam several times after seizures, leaving me sitting there watching. I like to stay and make sure that she is ok rather then go to bed, I wouldn't sleep anyway unless I knew she was alright, (UK is 5 hours ahead of Florida time) after I have seen her have several seizures within minutes of each other. I know that Sharon said "I've been there when I don't have too", but I would never switch the camera's off while she is having seizures back to back just in case they didn't subside and needed help. I have to be 100% sure that she is relaxed and sleeping before I go to bed, I did take my laptop to bed with me once last week, as it was 3:30am and she was having a lot of nocturnal seizures.

The weird thing is there has been times after large seizures where she has been communicating with me as if nothing had happened, so if I saw danger for her such as starting to get to close to the edge of her bed, I was able to advise her about it and tell her what to do and luckily she was listening to me, as long as I yelled in capital letters at her. But other times she is very confused and stressed so I will sit and think of a calming subject and type to her until she starts to feel better. Yikes after last nights seizures which she is correct in saying I saw CP-TC, we sat and played truth or dare, I hope I didn't embarrass myself too much. I can't believe we actually played through the night in the UK, I actually sat up and watched the sunrise, Sharon didn't believe me until I took the laptop for a stroll to the window, I was having so much fun I didn't want to go to bed.

I am now able to predict her seizures within a minute of them happening I have got to know her so well. Sharons subconscious seems to know when she is about to seize as she always carefully removes her glasses, which has now become another sign to me (she can never find them after the seizure) and Yes she does shift her head very quickly to the right before a seizure and starts to slur her words. But the main sign to me, is that I can see it in her eyes and I just seem to know.

When the seizure is over, she is always absolutely adamant that she has not seized and it takes a lot of convincing on my part that she has and that she is not to try and do certain things for a few minutes, such as drink. (She always reaches straight for her coffee cup and starts choking) but luckily she is now listening to me.

Normally when she has seized, she leaves messages for me the next day apologising for seizing, why?? theres no need!!!! But to me the best thing about me remembering Sharons seizures, is that the next day when she asks me what happened, she laughs at herself and the things she done and I think that is truly amazing :clap: