poll: what are your daily epilepsy struggles?

daily struggles

  • depression

    Votes: 68 54.0%
  • psychotic thinking

    Votes: 14 11.1%
  • dealing with medical community / Rxs

    Votes: 40 31.7%
  • stress / anxiety

    Votes: 86 68.3%
  • feeling lost / helpless

    Votes: 51 40.5%
  • feeling separate / loneliness

    Votes: 70 55.6%
  • panic / fear

    Votes: 38 30.2%
  • pain management / coping

    Votes: 23 18.3%
  • not driving / other physical challenges

    Votes: 74 58.7%
  • disbelief / rationalizing

    Votes: 26 20.6%

  • Total voters
    126

petero

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if you have daily seizures then that's likely your answer, but I don't have tonic-clonics daily, and at times it is hard for me to tell if I've had other types (simple, partials, etc.) - unless they're strong and I'm feeling it (the woozy, phazy and tingly stuff)

what are your daily non-seizure struggles?

vote for as many as you'd like, but try to just pick your top three.

and these options are definitely overlapping (some are probably redundant considering other options, ex. depression covers the gamut, but can also be non-specific) but try to be specific
 

Chaz1

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going to check with My Son and will update soon......

good poll....thanks petero
 
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Good poll, but my main issue is fatigue. I sleep waaay too much, and I get completely worn out after only a bit of housework or a couple hours of running errands. But I voted "dealing with medical community/Rx's" because the fatigue is caused, at least in part, by Keppra (also other underlying medical issues). I deal with some of the other issues, but I think they are more situational than medical.
 
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Soniag

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my biggest problem is getting to work. without my driving licence and a very rubbish bus service, i often find i have to walk to the next village to get the bus
 
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I think depression covers practically everything else in poll for me. Except for psychotic thinking, I don't have that.

In specific:

Dealing with medical community/Rxs is not a problem, but pharmacies can be a pain.

I do have stress/anxiety from feeling lost/helpless, feeling separate/loneliness and panic/fear. The lost/separate feelings are from feeling shunned by society, to the point that I am pretty much a hermit, except when I am out on my bike in traffic.

I do have an indirect problem coping with my E. Because I have trust problem, about who will actually care, if they see me have a seizure. Because, My developmentally disabled (ex)wife freaked out despite seven years of giving her the info she needed, to learn n' understand E. Whereas my (ex)fiance who had been through severe childhood abuse, didn't need any help coping with the possibility of my having a seizure(it happened twice, in front of her).

I don't care about not driving. Because, I either ride my racing bike, or take public transportation. Oddly enough, I feel safer on my bike when I am in traffic, than I would in a car. There are far too many bad drivers' on the road.
 
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C0urt

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wow, yes, i guess I didnt even think of being poor as a effect of my epilepsy.
I try not to blame things on other things, but I guess that is true,
 

lizzyb831

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Def stress and anxiety. stress from dealing with it, frustration from not driving and having to rely on people. I don't like being a burden. I'm in the beginning stages of my meds, so trying to figure out if those are the right ones and this whole process.
 
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I am sick of being poor. I want to be around people again singing, being in the classroom.Being on stage and showing off. A musical, a choir, teaching it. It sounds like so much fun.
 

pita300

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I'm with stilldancing I was a music major in college. I used to sing in a mens chorus but because of my E I have not been able to get there in over a year. Don't want to feel like a burden by asking someone to pick me up. Depression, stress and anxiety I just go hand n hand with E. I have been struggling with depression for years. Pharmacy is always a touchy subject for me. the 2 things that drive me crazy there are "Have you had a prescription filled here before?" My answer is "Yes and I'm about to pull it and take it somewhere else!" The other issue with them is "We don't have enough of your meds. Well give you a few to get by and will have the rest tomorrow. I fill this every month you think there computer is smart enough to know that its been 30 days since I filled this last!
 

LJ-Bain

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The not driving thing is the worst for me because without it I cannot drive myself to work, go see friends, go grocery shopping...we have no public transport where I live. But we will stay here because my kids school/daycare plus my inlaws are within walking distance.
I am isolated and therefore I get depressed.
More money would always be nice of course.
I agree with travelbug too. Fatigue.
 

tkopi

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I put not being able to drive as my #1 thing. This also contributes to being lonely because we have no public transportation in my town. I have been fortunate with getting to my job though. The place that I work at started a van/car pool service to help people get to work easier, so I am able to catch a van pretty much every day to work. It does suck though haveing to ask friends and family to take you places like Dr appointments that are 60 or more miles away.
I try to see the good thing about this though, I do get plenty of exersize walking every where I can. People around town call me the walker.
 
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So what are we going to do? Down the street there is a local college that is taking people from the communtiy in to sing. Of course you have to try out. I think its just 2 hours a couple days a week. For me it could work. Except for my bad attitude.
 

C0urt

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then perk up and try.

that first step could make all the diff in the world
 

Jeff

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Depression, stress, anxiety, feeling lonely, fatigue, etc. Sometimes I join these clubs with people who have similar interests as myself, and I have to go into the city to get there, and by the time I return home, I am exhausted beyond belief... the idea of extending these trips and trying to develop the connections with these people is so daunting as the trips take so much out of me, I'm so lethargic.
 

Screamy

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Ok pals, I have an issue, BUT, do not want to be judged, cannot say it is better for me(even though it has worked), where shall I go?! Lowering pills on my own, less seizures, but most douche bags will say.... 'Oh Laurie, that is so not good for you.....' GO F* YOURSELF!!!!! I ONLY WANT FRIENDS AND SUPPORT!!! Neither one, keep it to yourself!(BUT, thanks for caring)!!
 

alice123

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even without having my problem diagnosed yet Doctor today :S) my 3 main problems are loneliness winch could also be depression, Stress and fear. Which is because of another disability I have.
 

Crash

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Ive put down two answers the main one been not been able to drive,but ive never been able to drive.But i do live in a rural area and have to do a lot off walking.That aint so bad in the summer but sucks in the winter.

My second choice was stress and anxiety,i think having epilepsy makes the reason behind that pretty self explanatory.
 
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Screamy, I have done the same thing. I can't say I recomend it. But I know my own body and when I see my dr. I let him know. I got some good baseballs you can throw.lol the apples are to good. or atleast take a bite first. I believe in you. It sucks not to drive, Im sick of saying I used to do this I used to that.And I was d good!I am so with you. Growing my hair is the change of the year. dfjszalkdja;lkdljfsa;lkdjfsalkdjfdsfdjsldfj;
 

arnie

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The biggest issue for me is feeling separate/loneliness. I don't even know if that is part of the epilepsy, or part of who I am, or if the two are indistinguishable. Since I am pretty sure I have had epilepsy all my life, even though it was only diagnosed 31 years ago, I guess that whatever the E does to my brain/feelings/worldview/view of myself is something that it has always done. Since no one ever knew I had E while I was growing up there was never any stigma to worry about, no medication trial-and-error BS or side-effects, etc.
My seizures, virtually all simple partial, do make me feel "different" though, and not only the tiredness that surrounds them, but also the feelings of unreality that may precede some of my seizure clusters. Another issue is having to deal with everything that I forget. I have a really good memory for some things (I'm great at Jeopardy) but there are other things that disappear completely and forever. A couple of weeks ago my wife mentioned something about when our son broke his arm. I guess that happened 12 or 13 years ago, but I have absolutley zero memory of it. She was trying to help me recall it, but nothing at all came back. Things like that give a person kind of a helpless feeling. The other end of that spectrum is the random, completely insignificant memories that spring completely unbidden into my head, then dart away again.
Oh well. I guess I'm needing to vent today. That was actually one of the reasons I joined this site. Also, I had a couple of seizures yesterday and one at about three this morning and another one just after 6. C'est la vie, right?

Onward!
 
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I do remember back in 2007, when a joined a biking club, asking several other members, for a ride to get to the starting point of several club bike rides that were 25mi.+ away. They refused and I was disgusted because, at that time I was focused on not being able to drive. Since then, when I go to a bike ride that far away, I amaze people with how far I will go to get to the starting point of a club bike ride, and my riding position(center) in the lane.

Everyone else usually drives to the start point, so I put them to shame.
 
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