How did your love ones react when they saw it for the first time?

[justPassing]

Hi,

Instead of feeling depressed and anxious by my last fall on my face I was wondering how to transform that into a positive discusion.

Helen has started a wonderful thread about humouring ourselves. But it does not cut it for me this time.

So how did the people you love reacted the first time they saw you flat on your back spiting blood and clearly not answering any more? Past the first shock how went the following days?

In my case they got it a bit on the had side since I am starting to have tonic clonic with very little previous noticeable seizure history. So for them before last September epilepsy was something very remote, in November they learned that I was having epileptic seizures but only last week did they get to see it in full action.

It is still fresh and I will probably update this later on.

My oldest seems at this stage to feel responsible for the seizure, he was with me and I had just sent him to go play outside while waiting to the invitee to arrive. He was to one to warn the others. While the crisis went he was ready to call 911, having got from a discussion in the morning that over 5 mins it was dangerous.

My youngest is only 5 so at the time of the crisis she was seemingly the most terrified but seems to have accepted it has a normality.

My wife is getting this a bit as a surprise, she was in the middle of too many things before Christmas, and still his, to easily find time to lookup some subject that are a bit scary like that. I think that now she is trying to handle her emotions but its very hard for her. Looking at the risk part the most. It seems normal, we never want to look at what might be destroying someone you love. We tend to mask it by an overbearing need to see that we can control it for them.

So you see it is all about letting the situation be on their part and managing the risks in an ostentatious way on my side. It is a fundamental change in our relations and I am wondering how we will handle it. On my part it is one of the many small changes that I have to integrate. I am wondering about that also.

Cheers,

[Belinda5000]

Well it's been all my life or I was dx'd when I was 2.
My mother tell me not do certain things might have a seizure.
Rest of my family they'd usually call my mother when I was having a seizure.
I usually wasn't treated any differently other than when I was having a seizure.
I knew what i could and couldn't do.
Belinda

[skillefer]

Hi JP! Let's see....When I was a teenager, my little brother saw me actually have a tonic clonic. He jumped off the bed and ran to get my parents. After that, my little brother was a bit standoffish for a bit...but when he saw that things went back to normal, so did our relationship.

When my hubby rist saw me have a seizure, he was worried. But afterwards we talked about it, and he actually asked if he could go to my next neurologists appointment. He went and asked the doc a whole bunch of questions. And, the doc told him about Sudden Unexplained Death in Epilepsy. He has always been concerned. In the past couple of years, my seizure activity had flared up. He really didn't like me being alone at any time....but I'm an adult and he realized he couldn't keep an eye on me all the time. So instead we got cell phones from Nextel that have a direct connect. They're like walkie talkies. The first couple of times when I was slow to answer the chirp, I'd answer to find him driving to where I was. I'd tell him I was okay and why I was slow answering....he'd grumble and then turn the car around and head back home. He's eased up a bit since then. Now, we have his mom and her younger kids living with us, so he doesn't have to worry about me when he's at work. My in-laws are fantastic. They keep an eye on me, but try not to crowd me. The only thing my hubby ever did that really upset me, was he told his little sisters (both teens) that if they stressed me out and I had a seizure, that they were going to answer to him. I had to give him a reality check. What he had said was wrong. It put too much stress on the kids, and it strained my relationship with them for a bit. I know he said what he did because I had recently had a seizure and he was trying to protect me, but I had to tell him that he had just stepped over the line.

So how have my loved ones reacted? My mom always freaked out and looked panicky, my dad always responded with a gentle smile and a little joke, my brothers panicked a little (but then mom and dad never told them about E), my hubby would get hyperprotective *chuckle*, my m-i-l was really gentle and concerned but fine with it afterwards, and my little in laws are protective. One even had to be physically restrained when she saw paramedics around me. I think she hit one of the staff.

Your kids might be scared that it was something they said or did..and it makes them feel helpless when their big strong daddy is sick and they can't do anything to stop it. Your wife is trying to deal with the emotional aspect. What can she do to stop it...how can she help you....what about the kids...if you have it, will they?....and it's really scary for her, because you've always been the guy to take care of things...to take charge...and I'm sure that the convulsions threw her for a loop. And now, with the Travolta death in the news, you may find her hovering a bit...worried about letting you even use the bathroom alone....Have her go to the next neurologists appointment with you. Tell her to write all of her questions down and ask him. If she gets the info from a "medical expert" she will probably relax...at least a little. And if you don't have them already, get some cell phones. It might reassure her if she knows she has a way of checking on you just to see if your okay. Just make sure that you answer the phone quickly.

[john_williams]

I've had the partials since high school, but never knew what they were. An old girlfriend made me goto the ER after having like 3 partials in a 4 hour period. of course they didn't knwo what they were.

My first (and only) tonic-clonic happened with me and my wife in bed. We were talkign about having a baby together (we each have a daughter from previous marriages). I held up my hand and said 'hold', which is my que to let her know i was having the partial (still not knowing what they were, I have the deja vu aura before they kick in though). Next thing I know I'm in the hospital.

Guess she called my dad over to our house, called the ambulance of course. I guess I kinda fought being taken away, she said i didn't understand what was going on. She stayed with me the whole time. They were going to let me go that night but she called our GP and he got me admitted, thank god, cause i dont' remember much for the next 3 days. My dad had to make my wife actually go home and sleep, she was so scared she wouldn't leave me.

She works at the office my GP is at, so they know each other pretty well. We told him we were talking about having a baby when it happened. So the next appointment with him he goes "So no more talk about babies right?" lol.

I tell my wife that's my "trigger" now

[BuckeyeFan]

I had my first seizure at 20. My wife was a young mother at 19. She was scared to death, but saved my life that first time (see hero stories). Not knowing what was going on had to be hell for her the next 6 days I was in the hospital.

My Mom has always been a little embarassed by it over the years. At least I feel that she does.

My Dad before he passed away was always good about it and more importantly always there for my wife, even if it was just a loving hug. He always was very good to her, even though we got married very young. I think she misses him more than me sometimes.

[morgan381]

My firts t/c happened at age 20 when I was 9mos pregnant. Needless to say, my husband was terrified (for me and baby). He did manage to hold it together, call the paramedics, and call my parents. At that point my mom got on the next plane to Denver (from Dallas). Since that point my husband has been in hyper-protecteve mode (7 years). It's not as bad as it used to be, but he still asks me every day, twice a day if I have taken my meds and has a mini-freak out when I say I'm not feeling well--regardless of the reason.

I don't think my dad or sister have actually seen me have a t/c.

My mom has seen me have a couple. She seems to handle it pretty well, at least on the outside. My dad says she's a wreck for a couple days afterwards. She also went into hyper-protective mode...but not as bad as hubby. However, hubby has strict orders from my parents to call them immediately anytime I have any form of seizure.

The first time my kids (the older 2) saw it was a couple of years ago. I think they were 10 and 5 at the time. I don't really remember their reaction during the aftermath, but for several days they were constantly on guard. My husband said they were really terrified and that my 5 year old asked if I was goind to die. They seem to blame themselves...sort of like, "if we hadn't been arguing, mom wouldn't have had a seizure". It's difficult to explain that mine seem to be very random, and that I don't have a known trigger.

My mother-in-law has seen me have a few c/p's. She handled them very well and was calm, very likely because one of ther sons had E as a child. For some unexplained reason, I always feel the need to apologize when having them. She just told me not to worry about it, that she'd seen seizures before.

[skillefer]

LOL...Morgan, I too usually feel the need to apologize afterwards. I think it's because of how the people I love reacted the first time it happened.

[morgan381]

I think it's because of how the people I love reacted the first time it happened.

That's probably got something to do with it for me as well. The first time I had c/p's, I was training my replacement at work for when I went out on maternity leave...I was talking to her and kept losing track of what I was saying. They were so bad and so frequent that I was unable to explain the simplest task. I kept apologizing every time I lost my train of thought (which was almost constantly by the end of the day). I felt like a moron and I'm pretty sure she thought I was nuts.

[joan]

My daughter was 12 when her 15 yo brother had his first grand mal. She did great. She knew to make his area safe and called 911. I was so proud of her. Although she did everything she could do, she was left feeling bad for her brothers condition. She always made it, like it was no big deal and I think it just strengthened the bond between them.
My daughters first grand mal at 16, her 19 yo brother finds her. Calls me gets her to the floor and calls 911. HE is horrified and takes a few days to calm down.
I think we all have gotten to a point where we "try" and make no big deal of them, do what we have to do to get over them and try to get back to "regular" as soon as we can. My daughter says she's glad she has E now as her brother is not alone. Just breaks my heart.

joan*

[skillefer]

Was the 19 year old that found her the one that she had found when she was 12? If so, it may not be that he was horrified, but angry. Angry that she's going through the same thing. Also, seizures can be scary to watch. Trust me. I have grand mals, and I remember watching my first grand mal when I was a health aide in college and was called to the scene when a guy had one in the men's bathroom. I had the guys hitch up his drawers (yes, he was in one of the stalls). Then had someone else wait in the lobby for the paramedics while I slid under the stall and made sure heh didn't hurt himself. Then I waited for the paramedics who had to do a fireman's lift in order to get the guy out of the stall. He was stuck under the door. When he finally came to, I was giving a reassuring smile and let him know that he was okay. But everybody reacts to seeing seizures differently. Just because you have them doesn't mean you won't freak out when you see someone else have them.

[joan]

Yes, they each found each other the first time. I think it was also the first seizure he ever saw and he was surprised. He was angry for weeks that his sister has it too. We had asked when Phillip was dx what the possibilty would be that jennifer had it too and we were told IMPOSSIBLE. Its so rare... blah blah blah...

When I find them. I try and not get upset. I try and just do what I have to do all while speaking to them telling them it ok and everythings fine. They cant hear me but I hope maybe my voice somehow brings them comfort.

signed
rare mommy lol

Good news is we are going into the genetic study and my X will participate.