Handling An Epileptic's Life

[Havok]

I think, after ~6-7 years of having seizures, I am really coming to terms with the fact that I have epilepsy. I am past trying to tell myself it's a one-two-three-four-off event.

This year, I "graduated" in my epilepsy. While still technically nocturnal, after a very long night-shift, I had two t/c's that were waking/semi-waking/debatable(lol).

I totaled my vehicle in a single car collision, because of a seizure.
I don't drive much anymore, despite getting back my license. It scares me. Sometimes I drive to the store or something. Very short, and I can deal with that. My wife went for Christmas to visit her family out of state. I've had to drive myself to work, and it's so nerve-wracking that I've considered calling in sick. That's not me. This is breaking away my pride in my work ethic. Now I see it as a roadblock to my safety.

Also, I had a seizure at work. I can no longer hide my epilepsy from anyone.
I worry every day that my boss will tell me I have to work overtime (16 hour shift), and bite my nails wondering if I will have one of my new-found waking seizures.

How do you all function? How do you go out in public knowing you might fall out? It is not my intention to vent, just trying to give backstory. I am having such a hard time justifying me leaving the house unless I absolutely must.

I have stood up to thieves, rapists, and murderers, and held my ground without faltering. I have looked true evil in the eye and dared it test my strength.

Yet I cower at the thought of leaving my bed, lest I have a seizure.

How, my friends, do you do it?

 

[AlohaBird]

Tell me more about "waking/semi-waking/debatable but still technically nocturnal"

My seizures are nocturnal too and that makes a great deal of difference in the level of coping required. The first few years I had seizures, I was always terrified about them happening during the day but they never did.

There have been exactly two instances (in 31 years) where mine happened during the daytime and both had to do with extreme sleep deprivation. Once I had the flu and was napping on the couch (semi waking/debatable perhaps). The other was after a flight to China where I had been up for 48 hours plus that massive time shift and had missed a dose of meds. Went for a nap and had one.

You say your daytime incidents were after very long nightshifts. Have you ever had any during the day when you have had your sleep? Do you only have TCs or absence seizures as well? Which was it involved in the car wreck?

As to the mental/emotional part of your question. You cope because you really don't have any choice. You put one foot in front of the other and carry on.

I found what helped me cope the most was exerting some measure of control over my seizures. I'm a teacher, an academic geek, so when something is overwhelmingly huge and scary, my way to get some control is to research the living daylights out of it.

You know when you go up against the villains you deal with daily, it is not about being bigger or stronger because there will always be some dude bigger than you. It is about being smarter, keeping your head, and using the tools at your command. In dealing with E, knowledge is your greatest weapon.

:hugs: I hope your wife gets home soon because it sounds like you need a hug.

 

[Belinda5000]

Why would you try to hide your epilepsy? I've never driven and and my seizures have been my entire life thanks to the idiot doc who delivered me.

I take public transportation and I've had my share of seizures on the train and the bus.
If I seize so what I've done it plenty of times.I'm refractory and can't work.

I won't put my life on hold though.

 

[Havok]

Aloha, technically nocturnal because it was at night lol. My car accident was I was driving, then waking up in the trees with paramedic trying to yank open my mangled door. Haven't had anything like that happen since I was a kid (when I had waking seizures). Same for at work. Both I may have fallen asleep first. I don't know.

Belinda, I didn't tell people at work about my seizures, because I didn't want a stigma attached to me. Plus they were always while asleep, so it didn't seem necessary.
Every single person at work heard about "the guy who had the seizure" by the time I was cleared to come back ~two weeks.
They now regularly ask me if I'm okay, like I'm liable to have a seizure at any moment.

 

[Fedup]

Havok

You asked a good question "how do we do it" but you already know the answer because you are doing it. There is no reason or shame in not telling your co workers or anybody outside your family, its completely up to you. There is nothing easy about living with E but that does not mean you give up or stop trying to be the best you can be. Every day you try to be a better person.

 

[AlohaBird]

Aloha, technically nocturnal because it was at night lol. My car accident was I was driving, then waking up in the trees with paramedic trying to yank open my mangled door. Haven't had anything like that happen since I was a kid (when I had waking seizures). Same for at work. Both I may have fallen asleep first. I don't know.

If you were nodding off, that does make it a different beast.

 

[Belinda5000]

If your controlled there is know reason to say a thing or if you have nocturnal seizures.

I can't do that I never know when a seizure might hit and I have several different types of seizures. I have T/C/generalized/complexpartial now but they change all the time.

 

[Belinda5000]

You shouldn't be driving at all when your sleepy and you are suppose to go 6 months seizure free in most states before you can drive again; and it makes it hard for people who obey they law like my husband who has been seizure free since 1972 to do certain jobs because he takes meds to control his auras.

Belinda

 

[seagull]

Havoc you take deep breath and live ,what is alternative.I don't drive millions like me as said why do you need hide your seizures I know not pleasant thought others seeing us we vulnerable and no one human wants feel that way but it nature of things and how to handle it.Worrying will not help and if boss makes you work double knowing this cause Seziour then boss is a jerk.He can not sack you.
I Personly feel you need see counciller help you with some relaxation techniques coping with work..As for driving take a care if you end up hurting someone or worse and you actively having sz could be illegal.
Many of us here can attest life goes without a car

 

[valeriedl]

I have seizures while I'm awake but don't know if I have them if I'm sleeping. My husband and I have different sleep schedules. He works at night and sleeps during the day. I don't work so I sleep during the night.

If I meet someone I don't know somewhere, the grocery store for instance, I don't introduce myself my saying "Hi I'm Valerie and I have epilepsy, how are you"? Anyone I know or will be spending time with, even if it's just an hour going out to eat, I always tell them I have epilepsy. I don't work but I know if I did I'd tell everyone I worked with. I don't want to have a seizure in front of them and they have no clue what's going on.

Sleep deprivation is one thing that can cause seizures for me. I try to get a full nights sleep, and usually a nap during the day, but it isn't easy at times.

I can't drive and would be scared to if I did. Once I had a seizure when got on the lawn tractor to move it. I slammed my foot on the gas and almost ran into a tree. Luckily my dad wasn't far away and managed to stop the the tractor before I wrecked it.

I live in the country and have no public transportation here. It's so frustrating trying to get around!!!!! I have family and friends that will take me places but I might have to wait a day or two before they are able. I hate the fact that I'll look in the fridge and see I don't have any milk, I can't just run out to the store and get some! I really can't even go somewhere by myself because I need someone to take me there.

I've pretty much accepted the fact that this is how my life is now, it took a good while and it wasn't easy before this happened.