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

[skillefer]

Let's face it....we can't be protected from everything.....We can do things to minimalize the risks to ourselves and others..but there's no guarantee. For example, my family went camping in February. (I know, it's cold...talk to the hubby... ) There we were, sitting around a nice campfire, just talking. We'd eaten dinner about an hour before, and I was at a comfortable temperature. The next thing I know, my hubby is bending over me and asking if I'm okay. I found out that I had had a tonic clonic seizure and fallen into the firepit...hitting my eye on a rock. My hubby ran through the firepit, (burning his feet), picked me up and laid me down on a sleeping bag that my mother in law got out of our tent. I ended up with a beauty of a shiner. My poor hubby got dirty looks whenever we went out together. Between the black eye and the bruises I had on my arms and legs, people probably thought he beat up on me....Nothing could be farther from the truth. But it just goes to show that life happens. We can be doing everything right and still have a seizure.

[Belinda5000]

I've never been given a list of things of what I can and can't do.

I did burn myself really bad cooking when had a seizure and tried pull myself up by using the frying pan and got chicken grease all over me and burnt myself really good.
I now turn the handle when I'm cooking or use back burner.

It doesn'tmatter if someone's home when have my seizure's and I'm showering I still end up on the floor in bathroom. don't lock the door in the bathroom when I shower.

Belinda

[hawke86]

I know what you mean Belinda. Sorry to hear about your burn. I hope you didn't burn yourself that bad. There was one time I burned my right hand and I don't know how it happened. The burn on my hand was the worst kind you can get. I ended up haveing to go to six weeks of physical therapy so I could use my hand again. I still have problems using my hand sometimes. The only thing the doctors could figure how I burned my hand was I had a seizure and that's why I don't know how I did it. Life can be mysterious sometimes. I hope this doesn't scare anyone or offend anyone.

[Belinda5000]

Hawke,

I went to the E/R 2 days after I burnt myself luckily the hot grease didn't get in my face my husband found me on the kitchen floor when he got home from work.
I'm just a lot safer now when I cook.
I hope your hand was ok?

Belinda

[hawke86]

I just got the worst kind of burn a person can get. I think I also got a little nerve damage from the burn. The burn sure did leave a nasty looking scar.

[Crazy Monkey]

Meetz, any idea where this list of do's and don'ts can be found??? You've got me curious now.

I think that my safety is where my own common sense should prevail, you can't think of every circumstance and accidents are going to happen whether you have epilepsy or not, we just have to think a little harder before we participate in things.

[KellyD]

Reading all these posts have me a bit upset because my dr never warned me against anything except the driving which the ER had already told me about. At the time of diagnosis ( mid 2008 ) I was breastfeeding my then 6 month old son who he met the same day he met me and not a word was said about bathing him or feeding him alone. The swimming and bathing alone wasn't mentioned, neither was cooking or climbing things. My seizures are complex partial but it was a tonic seizure that alerted me to what was happening and is what got me to his office in the 1st place so there was always the possibility of more of those in the future. I guess if I had thought about it, common sense would tell me not to do those things (and for the record, I haven't done any of those things anyway!). Thanks for the education guys!

[Crazy Monkey]

Reading all these posts have me a bit upset because my dr never warned me against anything except the driving which the ER had already told me about.

I am the same as you, my neurologist never said a peep to me about the do's and dont's, with the exception of driving.

[skillefer]

I was lucky. My neurologist has been excellent at telling me what I can and can't do, and telling my hubby too. Also, he told my hubby about Sudden Unexplained Death in Epilepsy and what to look for. Sometimes I want to balk at the restrictions....but then I realize how much it wuold hurt my family if anything happen to me...and how horrible my hubby would feel...and I do the sensible thing. I may be stubborn, but I'm not stupid.

[morgan381]

the only thing i was ever specifically told was the driving thing. in fact, when i was first dx'ed i had to stay in the hospital. after i had an eeg, i asked to take a shower to wash the goo out of my hair. the nurses told me no shower, but to take a bath. they did say i had to leave the door open and have someone in the room (not the bathroom). i still climb, swim, cook, iron, bathe my kids, take a bath when alone, and so on.....but i am well controlled. (i know that doesn't really make it any safer, but i justify it because i have auras, which give me a warning)

[joan]

Since my son was 16, a varsity swimmer and a competitor in karate, ju jitsu events, we were given a list of activities that were ok, some that needed one on one supervision and some we shouldnt do. ( I could reprint the list if anyone interested) Naturally swimming and karate werent ok. My son could continue to swim BUT he could not be in or near a pool without good supervision. He translated that to mean, He cant swim. He was in the pool ONCE last year since he stopped and to see him swim, dive, goof off and laugh made me feel so good. I tried reminding him that he enjoyed it and should do it more often. Im going to push him more this coming summer. He doesnt have to compete but hes been swimming since 1 and hes always loved it. He has to miss it.

Im remarried the last 6 years. I have my two 16 & 19 yo kids and my husband has a 26 yo and a 29 yo, both sons. All the kids are very close and we are lucky everyone blended so well. I think the 10 year age gap helped with that. We took all the kids on vacation a year ago and didnt know we shouldnt scuba dive. oiy. Phillip did good and successfully dove and had a great time but Jennifer didnt make it much below, before her ears hurt, and she had to surface. Fast forward, Dr says thank God you guys dont scuba... well do dont now lol

Its not easy, thats for sure*

joan*

[stilldancing_98]

Well, I'm becoming much better now. My seizures are getting a little worse now so I am being a little more careful. Like swimming.

[Meetz1064]

In answer to your long ago question that I just NOW noticed, I have no idea.... I think it is more a matter of common sense. I will do some looking around, as I have a few ideas, but I have a couple things on my plate first...

[joan]

I will find my list and reprint it. Just give me a few days *

joan*

[drarvindr]

My "sins" are:
when i was first diagnosed (1997) it was illegal to drive with epilepsy no matter what type or how seizure free you were . now the restriction is 2 years seizure free. i don't ride a motorbike but i do drive a car , very rarely when there is no other mode of transportation. my doctor has made my parents so jumpy about driving that despite my nearly 6 year seizure free state i have not been able to drive my dad's car more than twice in the same period (when i first got my license). i drove while i was away from home in med school but again did so only infrequently although i love to drive. i don't swim so that has never been an issue . In fact i got so frustrated that i stopped my meds for while , the doctors advice being counterproductive , since he gave me false hope with a misdiagnosis . i was told i had petit mal which should fix itself in 5-10 years and then on a repeat eeg after 7 years of never missing a dose i was told i had juvenile myoclonic epilepsy and must stay on pills for life. this pissed me off and caused me to skip meds leadind to status and an ironic tripling of my med dosage , besides being called an idiot by every living person i was in contact with.

[joan]

Heres a link to the list I reprinted: I hope it helps *

List of Sports & Epilepsy

[Maryann]

Greetings,
The list ... The list that the nurse read aloud at break-neck speed ... And the space on the bottom to sign my name. When the doctor asked me if I DID have any questions etc (most all was common sense) But when I came to the bath I had to say something. I can relax and let stress out so nicely when I can have a nice quiet soak. He said 'You can take a shower' I could fall and break my neck in the shower. so I had to point out that I can drown in a bowl of chicken soup. he has bad manners so I got miffed.

[brain]

...I can relax and let stress out so nicely when I can have a nice quiet soak. He said 'You can take a shower' I could fall and break my neck in the shower. so I had to point out that I can drown in a bowl of chicken soup...

I'm sorry but I found your last line so hilarious!



I am still laughing about it! Nice punch shot!

[Maryann]

Greetings!

Thank you my dear!
Maryann

[Melpier]

I have driven a few time when I was younger - trying to learn incase it was needed. I have also been rock climbing and will do almost anything if I'm feeling well. If not I won't anything very daring. I won't even hold my nephew who is 2 and a 1/2 . don't know what I'm going to do if I still have seizures when I have kids. Oh well, only time will tell.