Actually got to talk to someone else face to face with epilepsy.

[RunningGirl85]

Just ran into a guy from my unit who is here (in the transition unit) for the same reason as me. He held open the door and said "you don't remember me do you Ma'am?" I saw the name tag and knew who he was. I think we'd only met like once, because he worked in a different part of the unit, and I wasn't there all that long, but I do remember him going to the hospital for a seizure before I deployed. I said something along the lines of "I think we're both here for the same reason." He is actually the first person I've been able to talk to face to face about seizures and epilepsy. I guess he is getting medically discharged from the military because his seizures were hard to control. Anyway, I just thought that was kind of interesting. I had forgotten about him because I didn't really know him. That makes three of us in my little tiny unit who had/have seizures. The other one was deployed with me, but hadn't had a seizure in awhile, and I had no idea that he had seizures until the day I had my last T/C. His supervisor was one of the people who walked into my office to talk to me while I was having a particularly intense partial seizure the day of the T/C that got me sent back to the states, so she knew what was going on.

Anyway, no real reason for posting, other than I thought it was interesting. Hopefully he doesn't read this forum, if he does, I guess it's okay though - he'll just know I'm talking about him onder:

 

[Fedup]

RunningGirl85

That must have been a nice experience. I only knew one other person who had epilepsy and that was as a child, I heard hes not doing well. I have never spoken to anyone with epilepsy face to face, although there must be some one around. That was nice.

 

[PFunk]

Were you both able to talk at all? Maybe about your experiences, or was it, a "Yup, I got them too, see yah".

It's always great to meet someone who has/had siezures. I ran into an old friend this summer, and I forgot he had seizures as a kid. We had a good talk.

I always wonder how many people with epilepsy cross my path during the day.

 

[Cint]

I used to do volunteer work with the Epilepsy Foundation, so I met lots of folks who had seizures and their kids, parents, husband, wives, or significant others. And I've met some who also had brain surgery. I also met a mother who lost her daughter to SUDEP at my local Starbucks and started a foundation on her behalf. I also saw I guy at my local Barnes & Noble having a seizure several years ago. And when my kids were growing up, several at their school had E that I was aware of. Plus, a cousin of mine has it, too. So it is more common than most people are actually aware of.

 

[Nakamova]

Is it just a coincidence that 3 of you in your unit have seizures Running Girl? Seems like a high number...

 

[Cint]

Oh, and one I almost forgot to mention. Over Memorial Day weekend, my family got together and my niece, who is now a speech pathologist, came to tell me that one of her patients she is working with is an 11 year-old child who had a hemispherectomy because of his epilepsy. My niece knew I had a temporal lobectomy, so knew I would be interested in hearing about this. She was amazed at how well her patient was doing after having half of his brain removed, although he was partially paralyzed. But he is able to communicate, although slowly, but he is improving. That is why she is there to help. Amazing who we may run into.

 

[LJ-Bain]

I do find it interesting the amount of people who approach you when it is known about your health. My mother-in-law is very involved in our church and everyone knows about me and "my troubles". There is one person I know there who has epilepsy but doesn't take medication anymore and is seizure free. She would have a complex partial after thinking too hard...like when she was doing math or thinking too hard.
Plus two people there have children with epilepsy.
Plus my sister has epilepsy and my father has seizures now in his senior years.

I do find it interesting too that besides me and my family...I did not know about anyone's epilepsy at all. They kept it a hidden private matter.
I guess I try to keep it hidden too when I can...unless it is at a place that I frequent because chances are they have witnessed my seizures or at least me suddenly exiting a conversation and booking it somewhere private. Although it is nothing to be embarassed about. It is not a dirty little secret or anything.

Running Girl....how many people are in your unit? I wonder if epilepsy if becoming more prominent or if it being diagnosed more frequently?
Or is it like when I was pregnant and it seemed like I would see pregnant people everywhere because I was more aware? Hmmmmm.

 

[Cint]

They kept it a hidden private matter.
I guess I try to keep it hidden too when I can...unless it is at a place that I frequent because chances are they have witnessed my seizures or at least me suddenly exiting a conversation and booking it somewhere private. Although it is nothing to be embarassed about. It is not a dirty little secret or anything.

:agree:It is NOTHING to be embarrassed about! Especially for those of us who cannot keep it a hidden private matter, no matter how much we have tried. The more one keeps it hidden, the less the public will ever know what to do when they see someone having a seizure in public. What a shame.

 

[no.guru]

It's about 1 percent of the population, so not rare but also not common. After not knowing anyone with it for decades, this year I've met two - both of them with adult-onset E (but neither are military).

It is nice to be able to relate to someone who understands on some level, but it's also instructive how individual each case is.

 

[bandmom]

:agree:It is NOTHING to be embarrassed about! Especially for those of us who cannot keep it a hidden private matter, no matter how much we have tried. The more one keeps it hidden, the less the public will ever know what to do when they see someone having a seizure in public. What a shame.

And talking about partial seizures, which I think most people don't even realize are a type of epilepsy, can possibly help someone recognize a seizure and get an earlier diagnosis. A teacher friend of mine just told me that she suspected a boy in her 4th grade class was having a seizure when she noticed his staring spells. She told the boy's mother who took him to the doctor. He had a seizure during his eeg and was diagnosed. I wish someone could have identified my daughter's "episodes" as seizures that quickly. We tell everyone about her epilepsy, and specifically what kinds of seizures she has.

 

[acpollard2010]

i have met 2 people who have seizure disoerders not particularly epilepsy and my sis has focal she just has has ignored it and dont like talkin about it.the other i met as soon as i got to oregon i talked to them i wanted to know if they knew things i didn't and personality traits not what i was expecting.real rude know it all's was not impressed and have told my wife support groups probably not happenen

 

[C0urt]

i have met a lot of people with epilepsy,
once the hospital was flooded and the e.r. was out out of control, so they just everyone how was in for a seizure out in the waiting room and gave them a juice box. when there were about 8 to 11 of us we all ordered a pizza and told war stories. for the longest time, my phone number showed to the e.r when i ordered a pizza.

one of the women at a coffee shop i go to has epilepsy to, she has her bracelet tattooed on her right wrist. I have met a lot more people than I would have liked to, because I would hate to think that there are that many people going to anything like what i went through even if it was just the smallest bit like it.

 

[Chaz1]

my Son was at work the other day and he is oh soo open about his E, was chatting with someone he had not met before (she was out for a while) and they clicked and in chatting he said have something important to tell u, I have E and have been known to drop at a hat (so dont freak) and have T/C, and her reply was, me too (he said he was almost speechless and that’s a 1st for this dude) ....

called me shortly after, to say a most beautiful girl he just met said she had E too! Later that night at dinner, I could see and he expressed the relief to have met someone else who could TRULY relate. It was liberating for him...

 

[RunningGirl85]

P-Funk, we did talk for a few minutes about our situations, though we were both kind of in passing, so the conversation only lasted about five minutes. He told me that whenever they tried to change stuff with medications he had a seizure, and that I guess he's been back driving for four months (next month for me I hope!) and a few other things. I HAVE met other people who had spouses with seizures - a guy across the hall from me when I first got medically evacuated out of Afghanistan, and then my admissions officer for my Master's program, so they knew something about seizures.

I do think it's strange that three people in my tiny unit have seizures. I am pretty sure it's just a coincidence. One of them developed his in training for his job, I developed mine in college, and I have no idea when the other guy developed his. We all chose our jobs before we were diagnosed (wouldn't have been able to be in the military otherwise), but maybe deep down we knew we needed to work desk jobs? Lol, I don't know. It is odd though.

I know I am pretty open about my seizures. I mean, for the fundraiser I posted all over Facebook. Plus it's kind of hard to hide it when everyone asks why you're back from Afghanistan early, or why you can't drive. I'd rather them know it was because I had a seizure (something out of my control), then for driving drunk. Plus it gives me an opportunity to explain what it actually is. It's actually surprising to me how many people are really interested in it, especially when I tell them that it's way more complex than just falling to the ground in convulsions. It's also surprising to me that I knew of absolutely nobody with seizures until I was diagnosed (besides the guy I ran into today, but for some reason I didn't think of it, probably because I only met him once). I guess it's something most people don't talk about with others unless it comes up for some reason. It comes up a lot with people around here because we're all here in a transition unit for some reason. It's obvious I didn't get blown up on deployment or am injured in some way because I'm always running... So most people are curious as to what I'm doing here.

 

[RunningGirl85]

my Son was at work the other day and he is oh soo open about his E, was chatting with someone he had not met before (she was out for a while) and they clicked and in chatting he said have something important to tell u, I have E and have been known to drop at a hat (so dont freak) and have T/C, and her reply was, me too (he said he was almost speechless and that’s a 1st for this dude) ....

called me shortly after, to say a most beautiful girl he just met said she had E too! Later that night at dinner, I could see and he expressed the relief to have met someone else who could TRULY relate. It was liberating for him...

Aww, that's awesome! What a great feeling it must have been for him to find someone who can relate! I'm fortunate my boyfriend doesn't seem to care at all that I have seizures. I mean he CARES, but it doesn't seem like it's affected his perception of me, though I'm a little nervous that it is all I talk about sometimes since it's all so new, so I try to make sure I actually discuss OTHER aspects of my life. I guess it helps that mine aren't terribly visible, and I haven't really stopped doing things I enjoy... Like hiking... The EEG tech at my last EEG said something along the lines of "He took someone who has seizures up a mountain?!?" It's like... well... I did that before I was diagnosed, and nothing has really changed, except that now I have a name to it and medications!

 

[RunningGirl85]

So it is more common than most people are actually aware of.

Yes, it would seem that way. I didn't realize it was so common at all until I started visiting forums such as this one and talking to people about my own experiences.

 

[MuayThaiFighter]

I had a really eye opening moment meeting someone else who had seizures. I was watching my cousin train in his kickboxing gym. They were going over Muay Thai, ironic huh. This kid sat next to me and asked if I was a member and I told him I was just there to watch. He explained he had epilepsy to me, so he wasn't able to train like he wanted to, and he opened up really quick. Once I told him I had seizures as well, he instantly trusted me. Like we were in some exclusive club. But truthfully, I don't blame him. It can be hard to explain, let alone vent to someone who could never understand. He gave me some serious hope, he had E since he was a kid and said he was seizure free and looking forward to driving. That just turned my life around a little.

 

[Screamy]

I do not know a single other being who has Epilepsy, not even in a hospital, keep screamy alone......

 

[CQ:)]

1 of my parents best friends wife has epilepsy & she has been a big support for me when it comes to coping with my epilepsy.

 

[MuayThaiFighter]

I can't believe I forgot, my grandmother's close friend. Had the exact same kind of auras and seizures for a couple of years. In her 20's, then they just stopped. She had one several months ago and she's in her late 60's. She got super lucky to outgrow them. Obviously having one occur decades later is scary, but she is perfectly ok now.