Risk Factors Associated with Epilepsy - Part II (Doing Things When Advised Otherwise)

[brain]

NOTE: This poll comes in Part I and Part II

This Poll is Part II

In reference to doing things that Neurologist
or Epileptologist have advised you not to do,
and reading the poll above will give you some
generalized viewpoints of typical advisories.

PLEASE READ THE POLL CAREFULLY!


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• You Do Not Have to Post A Reply At All,
  But If You Do Post A Reply It Will Become Public
  And Anyone Viewing It Will See Your Response.
  
• All Votes Are Private.
  
• You May Answer More Than One Selection Which
  Applies To You.

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Risk Factors Associated with Epilepsy - Part I - Alcohol, Other Drugs, Food

[PurpleAngel]

Answering on behalf of Kater, so certain things really don't apply since she is only 8.

But..I did recently came to find out that her school is not following the restrictions I "loosely" gave them. I thought (wrongly) that all the educators that she has contact with were aware of her situation. NOPE. I now know that my daughter was on the rings, and 4 foot tall balance beam. The following week she was made to run for 5 minutes, even after she told them teacher she "felt funny". And to top the cake?? She has been on the 12 foot climbing wall; no helmet or harness.

[BuckeyeFan]

My doctor has never been too restrictive except for some restricted driving at times when I was having trouble. I followed that very well except one time shortly after I was on my Keppra, I got mad about something, blew up and stormed out the door. Got into the car and drove the one mile to work on a Saturday. The only time I drove when not supposed to.

Other risks, I generally avoid. No swimming alone. Limit my time alone with the grandkids (it would destroy me if something happened to them while I had a seizure).

The one risk factor I don't avoid is the stress. However, that is hard to do sometimes. Life will give you stress no matter what you try to do to avoid it, i.e. relatives with cancer.

Overall, I try! Just not always good at taking my own advice.

[skillefer]

When I was first diagnosed in the 7th grade, the doctor didn't really give me a list of things I shouldn't do. He DID however, tell my mom that I shouldn't swim by myself. But I've always considered that sound advice for everyone. After all, leg cramps can be deadly.

Now, my current neurologist talks with my hubby, and although I didn't know it, talked to him abut Sudden Unexplained Death in Epilepsy. Makes my hubby a bit worried about me....especially if he can't reach me via cell phone.

[forward2007]

I was once told by a Dr. that was not a Neurologist that I should never swim. I understand that it isn't a good idea to swim alone in general. But I don't agree that people who have Epilepsy who's seizures are controlled should be told they should never swim. You can't live your whole life in the plastic bubble.

[brain]

I was once told by a Dr. that was not a Neurologist that I should never swim. I understand that it isn't a good idea to swim alone in general. But I don't agree that people who have Epilepsy who's seizures are controlled should be told they should never swim. You can't live your whole life in the plastic bubble.

Actually I'm a "water baby". To make the long
story short; at first my Neurologist provided me
only a vague list, until he learned what I had been
doing and then gave me a rigid list of what I can
do and what I cannot do.

From there, that list just grew as the years went
by ~ I would love to tell them "Oh, I'm terribly sorry
that you can't add anything more, I'm out of paper
and there's no more space to add more!"



It can really choke you up.

It's not so much that "I can't" - it's that being
intractable / refractory ~ with seizures being poorly
controlled / uncontrolled; it's not worth the risk.
At least I know this one thing - they are concerned
about me and care about my well-being ... for if
they didn't care, they wouldn't have stressed so
much impact upon me. I LOVE MY DOCTORS, FOR
THEY CARE THAT MUCH!

[maureen]

My neurologist, besides suspending my drivers licence told me not to have a bath alone and don't go swimming along. I'm a shower person so the bath really didn't bug me. The swimming, I know that you shouldn't go swimming alone, but it is a bit more difficult. Sometimes the lake is just calling to me and there is no one around. I don't think I've been bad.

Driving is frustrating but I'm in better shape now, public transit is good, I hate asking people for a ride but they are very happy to give a ride when asked.

Not getting too stressed or tired can be tough, but it helps that I just don't seem to have the energy for all that anymore!

[RobinN]

Maureen ... please no swimming alone. It only takes once.
f

[Nancy]

I tried and tried to answer this and ...... well, slight hysteria. ~sigh~
LOL I didn't write all that crap. Count your blessings.

[hawke86]

I do some forms of exercise my doctors don't like me doing. I won't give up my weight lifting for anything. i just enjoy it to much.

[RobinN]

Then you shouldn't Hawke. Just be careful.
I am sure that Rebecca's doctors would rather she not ice skate, but they are out of luck. I am certainly glad that she is not a competitive swimmer.

[Loudmouth]

Wash with a flannel with the taps running as no shower,and have nearly drowned twice (been saved by my kids). dont drive,Dont iron any more,havent been swimming in 5 years.However,I still HAVE to use sharp knives and cooker despite accidents,no-one else to cook a proper meal for the kids.still use step ladders to change lightbulbs that i cant reach.only drink one glass of wine about every 3 weeks,i have really had to cut down on the caffeine as well.dont go into nightclubs anymore,but only after the 4th time of ignoring advice and continuing going and having szs each time...(I was only 22 when diagnosed)think I'm getting more sensible the older I get,cos the no baths one only started this year....

[Nakamova]

Is it okay to check more than one of the categories in the poll?
Even though I've had tonic-clonics, I do drive alone, swim alone, and (unfortunately ) shower alone. But I also live alone, so even without epilepsy, I could slip in the shower and be out of it for awhile without anyone knowing. But I also have a network of friends and family who call regularly to check in, and they have each other's numbers. And I drive very little, I don't drink, I make sure to get plenty of sleep. I also let people know who might consider riding with me as a passenger what my situation is -- how stable I am, what meds I'm on, how I'm feeling -- so they can choose whether to ride with me or not. I do realize that I might endanger someone else if I have a seizure while driving. I consider this all the time, and if my (very stable) condition were to change I would definitely re-evaluate. So I guess I engage in both risky and risk-averse behaviors by some standards, but I feel that I know myself and the risks are calculated as much as possible.
Nakamova

[arose]

Well I have to say that I've been pretty good about my meds. When I was first diagnosed at 19 i wasn't too horrible because mom kept a close eye on me. But when she wasn't looking i wouldn't take them. i was rebelious and DEAD SET on ignoring E. It's when I found out i was pregnant that really turned that all around. Especially after having the seizure pregnant, then finding out all the restrictions (no giving baby baths, no feeding him by yourself..yahda yahda). For a while after my son's birth i would only take my meds about every other day because I didn't want to spend the money on the meds (no insurance).

In the past year I've been really good. i never have driven on suspension just because i'm too scared too. i also use to drink, but i realized it was pretty stupid to drink to begin with, let alone with epilepsy. so as of two months ago i'm completely alcohol free. My biggest problem was with smoking. I would get extremely euphoric as I smoked but i continued to do it anyway. i quit that habit last november

And yes, i've gone swimming (always in public, tho). I can't give it up, it's far too relaxing for me. It's probably the most therapeutic thing in my life at the moment

[Loudmouth]

do you take your child/ren swimming? do you take helpers with you if you do? I made the decision that it was too risky for me to take my children swimming without another adult there for me, an adult there for my daughter (she has epilepsy as well) and also one for my 2 boys. as i have never found 3 helpers all at the same time, I gave up on swimming. It's the only activity I have completely stopped, I feel it is just too silly to risk the lives of my children.

[arose]

If i take my son swimming it is always in public and always with either my niece (who's 9) or my hubbie. One of my mom's or friends or aunts is always there too.

[Bernard]

... so as of two months ago i'm completely alcohol free. My biggest problem was with smoking. ... i quit that habit last november

Awesome! Congrats.

[Meetz1064]

given a list of things I can and cannot do....by any doctor. HOWEVER, that said, I DO use common sense. I don't shower or bathe unless someone else is around, I don't swim by myself (hello, ANYONE can get cramps and go under!), I don't miss my meds, and I don't get on ladders without someone else nearby.

I rarely drink, and when I do, it's just a few sips at that....not even a half a glass of wine.


I really didn't know that there really WAS a list of things we couldn't do until recently.......is that bad, or what?

[seizures4ever]

The main weakness and obvious risk that I take is bathing while home alone, and sometimes I cook on the stovetop while home alone. Both have got me in trouble more than once.

I know better than to do those two things, but sometimes life doesn't cater to my needs...Even if no one's home, I NEED to be clean!

No, the doctors' didn't tell me everything. I figured most of it out on my own and by common sense. The things that I didn't think of ahead of time, I learned when I got hurt.

I'm not a risk taker by nature, but I want a bath when I need it!

-Julie

P.S. edited to add that I cannot take showers because of other medical problems.

[Cint]

but sometimes life doesn't cater to my needs...Even if no one's home, I NEED to be clean!

I have to take the risk of being clean, too. When I first started having seizures, the 1st tonic/clonic seizure I had was when I was stepping out of the shower and I fell backwards and hit the hot water and lay there long enough to suffer 2nd degree burns on my back and arm. But it can happen even when someone else IS home! I still take showers to this day, but at least I have auras now so have time to get to a safe place. And I live alone now and take precautions, don't drink, get sleep, don't drive, etc.

Cindy