Having someone video you if possible

Heavy Kevy

Heavy Kevy

Stalwart
Messages
236
Reaction score
115
Points
93
Brand new seizure pattern.
Good, Bad, Ugly

Good: I’m recognizing my aura for the first time. (Majority of my seizures had been nocturnal)

Bad: Having multiple day time seizures. Sleep walking, no memory of falling or conversations.

Ugly: I’ve got about 2-3 seconds before I loose conciseness. Told my wife to video record it next time. She offered 😉
Not sure if I really want to see it. I’ve heard it described so many times over the years. I think I know what to expect.
 
That would be great for me--having video of my complex partial seizures. I only know what happens if other people witness them (I don't get auras). The only ways I know that I've had one when alone is: if I see that I have injured myself or done something to my surroundings, or suddenly find myself in another part of the house or note a completely different TV show on.
 
Yikes!
Got my answer quicker than I thought!
Same time, aura, place three days in a row. She caught the whole thing today. Basically what I expected visually. I’m still processing the demonic noises I make. Horrified is as far as I’ve got.
 
I'm glad you got it on tape and got to see it

Hope you feel better

My seizures are simple/ complex partials.
I used to get strong auras bit not so much now or not at all

Sometimes I have to go on feeling, whether something is out of place or I was watching something and a big hunk of it is gone
Of course the big headache also is an idea i had one

I live alone so not many people witness them unless I have them in public

I've heard different people tell me what happens but would be interesting to see
 
Heavy Kevy said:
Brand new seizure pattern.
Good, Bad, Ugly

Good: I’m recognizing my aura for the first time. (Majority of my seizures had been nocturnal)

Bad: Having multiple day time seizures. Sleep walking, no memory of falling or conversations.

Ugly: I’ve got about 2-3 seconds before I loose conciseness. Told my wife to video record it next time. She offered 😉
Not sure if I really want to see it. I’ve heard it described so many times over the years. I think I know what to expect.
Click to expand...
I hope that they can figure this new pattern out, and "tweak" your meds accordingly.
I am actually kind of in a holding pattern right now, just the few every other week or so. Different stuff, but I won't get into all of that right now obviously.
Aura is important, right? At least you now have your self-warning-system to have you know that it's coming. Hope that they are helping. Hope that they are giving you enough time.
The only thing that the Wife has caught on video so far, is me laying on my back, my eyes doing the vertical nystagmus thing. Most of mine are at night, when she's sleeping so vids are difficult for us to get, too.
Best of wishes your way.
 
My mom had recorded some of a seizure that I had. When I showed it to my neuro he loved it because he actually got to see what I do during a seizure instead of us try to describe it.
 
I have managed to get both focal aware and focal impaired awareness (simple and complex partial) TLE seizures on video. Even with the ones where I'm aware I don't remember the details very well, so the videos help clarify things. The neurologists can see which side I had motor activity on if any was present. In particular, being able to time precisely the events of a seizure with the video helps a lot. I always have a good warning time so I've even been able to get some selfie video on aware seizures. Most of my seizures come in clusters and last weekend I unfortunately had the largest cluster I've had since I started treatment 4.5 years ago.
 
My specialists have seen me have focal seizures during veeg but that was 7 years ago and my seizures have changed

I do teleconference with my specialists now.
I once had a seizure while on video conference and last year when I had my 1st appt (phone appt) with neuropsychiatrist I had a seizure. Both times I hung up on them,

I also had a seizure during a video conference with my psychologist, I’d only been talking to her for a few months and she said she was glad she witnessed the seizure as it gave her better understanding of what happens. I’d hung up on her too and had to reconnect
 
CQ:) said:
My specialists have seen me have focal seizures during veeg but that was 7 years ago and my seizures have changed

I do teleconference with my specialists now.
I once had a seizure while on video conference and last year when I had my 1st appt (phone appt) with neuropsychiatrist I had a seizure. Both times I hung up on them,

I also had a seizure during a video conference with my psychologist, I’d only been talking to her for a few months and she said she was glad she witnessed the seizure as it gave her better understanding of what happens. I’d hung up on her too and had to reconnect
Click to expand...
CQ: thanks for caring to respond. I think I'd hang up as well in your situation as it's not only disturbing when I have a focal aware seizure, I also get a bit confused I'm so overwhelmed by the process. Last year I had an EMU stay where after 6 days with no electrographic seizures they said I have PNES instead, Fgortunately on the last night during the last 7 hours I had a cluster of 14 focal TLE seizures most of which I wasn't even aware of while I was sleeping. I didn't find out I had had them until 3 weeks after I was discharged. May I ask, are some of your seizures aware seizures, and did you have any trouble convincing them that they were real? Have a wonderful seizure free day.
 
My neurologist watched the video and I think it helped. He did have some questions that probably wouldn’t have been brought up.
We decided to make a tiny tweak by splitting one med from twice a day to three times a day. 🤞
 
I had a complex partial once while IN the neuro's office (he told me I'd had it when I came out of it). The "funny" things relating to that: I had taken my morning AED dose a few hours earlier, & the nurse working there--that day, at least, had no experience with seizures--especially complex partials.
 
WeAreOne said:
CQ: thanks for caring to respond. I think I'd hang up as well in your situation as it's not only disturbing when I have a focal aware seizure, I also get a bit confused I'm so overwhelmed by the process. Last year I had an EMU stay where after 6 days with no electrographic seizures they said I have PNES instead, Fgortunately on the last night during the last 7 hours I had a cluster of 14 focal TLE seizures most of which I wasn't even aware of while I was sleeping. I didn't find out I had had them until 3 weeks after I was discharged. May I ask, are some of your seizures aware seizures, and did you have any trouble convincing them that they were real? Have a wonderful seizure free day.
Click to expand...
Hi WeAreOne

I was diagnosed with epilepsy as a baby, I used to take tonic clonics until I was 3 1/2.
Then I was 21 years seizure free until they returned in 2002 and I was diagnosed with partial seizures (focal seizures)

When my seizures returned as an adult they were nearly always simple / complex but there was the odd time I’d have a tonic clonic. I had brain surgery in 2011 where they removed scarring on my left temporal lobe. Since surgery seizures have been much more controlled, I still have partial seizures but not as often or as strong as before surgery.

Not sure when I was young but as an adult I’ve never had any issues convincing the neurologists that my seizures are real. When I have follow up appointments my neurologist where I had the surgery and I give him an update on my progress, eg seizures / moods / headaches

All MRIs I had pre surgery showed scarring on left front temporal which the specialist in city believe may have been old scarring from the tonic clonics but why I went so long seizure free is a mystery and one of those things
 
CQ:) said:
Hi WeAreOne

I was diagnosed with epilepsy as a baby, I used to take tonic clonics until I was 3 1/2.
Then I was 21 years seizure free until they returned in 2002 and I was diagnosed with partial seizures (focal seizures)

All MRIs I had pre surgery showed scarring on left front temporal which the specialist in city believe may have been old scarring from the tonic clonics but why I went so long seizure free is a mystery and one of those things
Click to expand...
Hiya:
I know that we're getting way off-topic here, but I have to ask: Both of my parents had the Falling Sickness (atonic) when they were babies all the way to adolescence and then it came back when they got to their sixties. My Mom is 83 now, and my Father is gone, because he had a falling episode and hit a table in JUST the wrong way. So anyway, *I* had it when I was little as well, and it came back to me a little earlier than it did for them, I am thinking that it was in my fifties, not my sixties. That was before the 'brain bacterium', and the dying fairly soon part. Now I have SEVERAL kinds of seizures but mostly atonic. Anyway, point: Scans show nothing, eegs show nothing. I've read enough in these forums and on the Epilepsy Foundation site that something like 85% of eegs for epileptics come up normal, so they've stopped trying and are just doing treatments.
Okay. So, the question follows: They've told me that they "COULD" open my skull, just to look around so to speak, but that "Once the brain hits the air, you're never quite the same again." So I declined, I want to stay as I am now, before things start to really get downhill and I'm bedridden, etc.
As someone who has had surgery, have you noticed anything different afterward? DYING to know. (pun intended)
And thank you.
 
Last edited:
I've been able to live a normal life, I was even able to do full time work for a while after surgery.
I did have to cut back to part time when I came to my current job because my boss is stressful to work for.

The specialists were concerned about how my memory would be but with my neuropsysch evaluations my memory was good both pre / post surgery.

Only real issue I have is handling stress/ overthinking. I've always had issues with stress but the overthinking got worse after surgery

I am currently seeing a great psychologist who I've been seeing for 2 years. It was she and my neurologist who diagnosed me with anxiety. Then my neuro referred me to their neuropsychiatrist as my moods and anxiety was bad. She confirmed I had high anxiety and depression and put me on a depression med

As for the seizures I was 2 years seizure free but they returned after we took me of tegretol. When they returned the seizures were different pre surgery always same aura then a complex partial. Now the auras change and I don't know if I'll get an aura or just go straight into a complex
 
Heavy Kevy said:
My neurologist watched the video and I think it helped. He did have some questions that probably wouldn’t have been brought up.
We decided to make a tiny tweak by splitting one med from twice a day to three times a day. 🤞
Click to expand...
Good luck with the changes

Hope they help
 
Thank you for answering such a personal question. One of the MAIN reasons that I declined was, "I've never read about 'exploratory BRAIN surgery', this seems fishy and kind of stupid" I mean what are they talking about, they can't just pull it out and look it over, right? Electrodes were MENTIONED but no details were offered. So I got scared, to be frank about it. Plus there's what they had said at a different time regarding "Once the brain hits air" etc. I'm terrified enough about these seizures, although therapy has helped with coming to terms with the bacterium that they just can't manage to kill before it kills ME, the epilepsy just has me completely terrified. I get flashes of color (although I never recall WHAT colors I'd seen, just blobs of color) and dizziness before an episode, it gives me time to sit on some carpet and wait most of the time. Usually I also remember to take my glasses off, but sometimes I don't. THAT time, the aura, is when I get 'the terrors'.
Just wanted to share something personal in return.
Thank you again.
 
You must log in or register to reply here.
Back
Top Bottom