dealing with change...

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Regular Member

Date Joined Jul 2006
Total Posts : 30
   Posted 7/7/2006 7:54 AM (GMT -7)   
hello hello again!
i was just wonering, have any of you had seizures afect your life aside from...well, the obvious? i mean really turn it upside down, almost change you as a person?
i was the wild child tongue i had no fear.....most often discribed as 'a little nuts'! My seizures started back when i was arround 15....i have no idea when they started as i hid them and that time of my life is more than just a bit foggy. at first, thinking it was just alcohol withdrawl, they happent only at night/early morning and aside from the usual painful migrane to follow and some weakness, i bounced right back thiking nothing of it. once i'd been busted and taken to hospital and was told it's more than simple withdrawl, i accepted that, but it never affected me. i'd seize at night and go on my merry way straight up untill i hit about 22. that's when they started to become random.
i'd start getting partials during the day, felt like sheer panic. that's not me, i'm not an anxious person. crowds never bothered me, i thrive in strange environments. but it kept going from there. where once i was cliff diving in mexico, i was now worried to get into a pool for fear something would happen. my seizures, TC, became random, no warning and while i was awake. this left me nearly agoraphobic and housebound for 2 years almost ending my marriage.
they eased up and returned to 'normal'....but i didn't. i used to love to wander off on my own, hitchhicking, backpacking traveling at random...parasailing and white river rafting, now....although i've done all those things since the change and change back, i'm not the same. i'm more guarded and fearful. i refused to go snorkling in venezuela this past january with the rest of my friends, and even got a bit worried about swimming with the dolphins. i was a lifeguard for years, i'm not afraid of the water! i'm definetly not afraid of dolphons! lol but still i was paranoid and scared even with my friends arround me, in a life jacket. now...i worry even about taking my dog for a walk alone some days, like something will happen and she'll get lose and get hurt and i won't be able to do anything about it.
i dunno, i think i gave a pretty good example of who i was, how much i love adventure etc.....and now...i'm fearful. i just keep telling myself, like with the dolphins, lol it doesn't matter, so what if i seize, so i'll drown and die, whatever. that's my security blanket....i'll just die....that's a bit weird no?
i kinda figure if i have to live my life locked up and scared on the sidelines, what's the point.
i just don't quite know how to deal with change, this kind of change. it's my worst nightmare. and it just gets deeper as the years pass.
i suppose i still have quite a good life as compared to some. i do love my job....when i'm working! that's another thing, i can't stand time off. i NEED to be busy and the fact that it's not visible, i feel like, people think i'm faking if i take time to settle the clusters etc, like i should be all or nothing. i still travel quite a bit, and i have gone backpaking in europe alone since the whole change/change back- and i did seize there! hooray for nice hostel workers!
i'm rambling....i'm just trying my best to explain....well...i hate change and this is the worst kind. has anyone had to essencially switch their lives arround to accomidate their brains?!! oh- and i did have to change carreers...thankfully i've managed to find 2 i love and one i can do w/o long as of course, i'm not having a bad spell.
wow i didn't mean for this to be this long! it's not even the tip of the iceburg as far as my frustration goes.

Regular Member

Date Joined Feb 2006
Total Posts : 84
   Posted 7/11/2006 9:47 AM (GMT -7)   
Have you had your meds checked? COuld be your meds are making you parnoid? Have you discussed this condition with any of your Drs? Your goal is to have a quaility of life not be hidden away. I would look up the meds on the net and see what the worst side effects are. Than make an appointment to see your Dr and discuss med change .


Regular Member

Date Joined Dec 2004
Total Posts : 93
   Posted 7/11/2006 11:57 AM (GMT -7)   

Totally in sympathy with you, Jaimes. Epilepsy's an odd condition in some ways.  We're totally OK almost all of the time - and then barely able to function the rest. Throw in the fact that most of us have no obvious trigger for our seizures (is this the case for you too?) and paranoia is understandable. Result, if we're not careful then the epilepsy ends up taking the whole of our lives. We can't let it, we can never surrender to this thing, but thinking positive is a hell of a lot easier said than done.

I went mountain walking a couple of weeks ago. Everything was fine but I was brooding a lot beforehand about what would happen if I had a serious seizure. And when I had a petite mal on my own on a steep hillside, it took about half an hour before I calmed down and told myself it was only a petite mal. And I imagine it's been a lot harder if your hobbies are as dramatic as yours are. Like Mandi says, you've just got to take things slowly and fix on the positive. If you're snorkling with friends, for example, tell yourself that they'll look after you if something goes wrong. Though again, I know, easy to do in theory.

Incidentally, it's understandable getting worried about cliff diving in Mexico. It's actually quite sensible. The same goes for swimming with dolphins. Like Terry Pratchett said, any species that grins all the time is planning something.

Take care,


Veteran Member

Date Joined Feb 2003
Total Posts : 668
   Posted 7/12/2006 11:25 AM (GMT -7)   


Re: carreer change due to epilepsy; Here is my story, it's doesn't have to be all that bad.  It's just something you learn to deal with.

I also know what it's like to have to change careers due to a seizure condition. My name is Randy, Music runs in my family and starting from age 9, I was playing drums and guitar with proffesional bands. Up until age 21 (1979) I was a singer/songwriter, music teacher and a studio musician. My only dream in life was to make a good living with my music. (I also developed Ulcerative Colitis at the same time as ts the epilepsy was diagnosed. The Docs. say the two are connected) Well, all that had to come to a stop. I was sitting at my desk at my P/T job when I had my first seizure. All I remember from that point on was waking up in the ambulance on the way to the hosp. After going through several tests and then seeing a neurologist, the tests showed that there was epileptic activity in my lower tempral lobe. He then persribed Dilantin and Pheonobarb (still on today) and the seizures were under control. I was even able to keep my drivers licence. One major problem though, the pills were severely messing up my co-ordination. I walked like a drunk, slurred my speech, my own family was embarassed to be seen with me. Since my co-ordination was so bad, I could no longer play guitar or drums and I had to give up teaching. I was so depressed, I could no longer fulfill my dream, now what was I going to do. I had to make a career change. I was putting in job applications all over but I had no other experience. Finally I got hired on by the Federal Government as a courier and mail clerk. I worked my way up to Administraion Manager for the Unemployment Insurance Office for 21 years and then 9 years with Veterans Affairs. My condition was getting worse with age, no seizures but the meds were blocking my learning ability so I couldn't take on extra duties. As a result of this, my employer(The Government of Canada) put me on medical retirement last year (I'm oly 48) but after my disability insurance runs out. I had to learn to live with my disability and work around it.

I also found that I had developed a kind of paranoia as one of the side affects of the meds.


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

New Member

Date Joined Nov 2005
Total Posts : 3
   Posted 7/20/2006 12:03 PM (GMT -7)   
interesting thread:
Outside of having to re-mold my career during the time that I was having siezures, I have really not stopped "living my life" due to epilepsy.
During my siezure prone years, i made sure not to try to compete for any jobs that had higher stress levels/or more dedication that I was willing to give.  I had struck a balance with my epilepsy ...
Once I gained control (through the use of meds) I re-adjusted my priorities and looked for higher paying jobs, but to keep that balance, I never do overtime, or bring work home, (work blackberry/cellphones included).
I work to live ... not live to work.  Epilepsy has played a major roll in guilding me to that rule.
As for the outside stuff, well, just incase I have a siezure again, I carry all the gizmos a fisherman needs to wiggle his way back to square one if any such event would happen. 

Regular Member

Date Joined Aug 2006
Total Posts : 65
   Posted 8/4/2006 3:03 PM (GMT -7)   
I wrote something on one of the other threads, but I want to repeat it, hoping that you'll read this.
The first time I had a seizure that was witnessed (b/c I did the same thing as you, and could hide them, since they only happened at night and early morning), I was working at REI, unloading a truck. For those who don't know, REI is an outdoor gear/apparel store for just about every hard-core outdoor activity you can think of: mountain biking, rock climbing, canoeing, kayaking, hiking, camping(ok, that one's not so hard-core), you get the idea. And I did everything. Any chance I got, you would find me outdoors.
So I wake up on the floor (apparently it was a pretty bad grand mal), with one of my best friends, Jenny, practically having a panic attack, and my manager on the phone with 911. When I got back to work a few days later, I wasn't even supposed to climb a ladder by myself. All these restrictions kept being put on me, and all of a sudden I felt like I just wasn't 'me' anymore.
A few weeks went by, and Jenny invited me to go climbing with her. I wasn't going to, but at the last minute decided to join, and went camping overnight before the big day. I looked up at that 150 ft climb, and said to myself, "There's no way, on God's green earth, I am going to be able to do that!" I could already picture myself banging against the rocks. But I couldn't just stand there, watching everyone else doing what I love more than anything! So I donned my harness and helmet, and slowly started up. I'll admit, that first time up, I started to panic, and had to be let down. I was so discouraged when Jenny pointed to how high I'd climbed, and it looked like nothing from the ground. But after she and I took a walk, and played around with the climbing equipment in other areas, I was determined to try again.
So I hooked myself back in, and started up, and you know what? I made it to the top! Even Jenny couldn't do that! I was so proud of myself, and I knew in those moments, that I could still be who I was before, just with a few adjustments. I don't climb by myself, or swim, or bike, but I still go. My close friends know about my seizures, and they know what to do, and I trust them. Yeah, I think about what might happen out there, but something bad could happen at any moment to anyone, not just people with seizures. Those risks never stopped me before, so why should they now? I'm still daring and stubborn, and adventurous, I just know my limitations. I've flown off a cliff on my mountain bike before w/o having a seizure involved, and I got back on that bike. You fall off a horse, and the first thing you do is get back on.
When you're in a good period, go swim with the dolphins. Make sure you have friends close by who know first aid for seizures in water, but don't stop what you love. Epilepsy changes a lot of things, and it takes time to make all the adjustments, but the core of who you are doesn't change. You're still the same Jaimes you were, you just know more about yourself now.
Right now is rough, with my seizures being weird, but you know what? I'm still training to climb Mt. Rainier. You start out small, walking foothills, and taking some easy hikes, then do the same with a pack. Keep doing a little more each time, and if you go through a bad spell, you go back however far you need to. But you keep going; you keep pushing yourself. Because in the end, even if you don't get as high as you wanted, you know you gave it everything you had, and there's always next time.

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