Has anyone else's quality of life went down a lot after having a seizure?

[Mike758]

So in early September of this year, not too long ago, I had a tonic clonic seizure in school (I'm 18). Starting a year ago I've had multiple minor partial seizures, which I didn't even know we're partial seizures until researching after my big seizure.

Anyway, every single test has been done about, cat scan, eeg after the seizure, 72 hour eeg a bit after, an MRI, and a bunch of blood tests. And nothing's shown signs of anything including epilepsy so I've haven't been diagnosed yet at least, and I haven't had any type of seizure since so I'm kind of in a bubble of not knowing whats wrong with me and not seeing any doctor since there's no more to really see, so this sucks in itself because I go everyday knowing I might have another seizure since I don't know whats wrong.

I haven't hung out with my friends at all outside of school since then because they haven't called me to hang out, which I think is due to them thinking I'm going to have a seizure. I can't drive anywhere for a few months on doctors recommendation (didn't get my license taken away), so I can't drive anywhere to do something so I'm pretty much stuck home when I'm not at school or work. I don't watch tv or play video games, I do stuff outside when I'm home like gardening and landscaping, but there's only so much of that, and it's even more limited due to it being fall. So I usually just spend hours sitting on the couch either doing nothing or being on the internet.

I actually look forward to work now, although now my hours are cut down because I have to work with my parents schedules. I haven't been able to visit colleges because I can't drive (my parents are willing to do this stuff until I ask, lol). I've been having to take the bus to school since I can't drive.

So overall I've got fear because I don't know whats wrong with me, I've got no friends to hang with, limited hobbies, limited work hours, and no car. I hate to create a sobber story here, but my life has just sucked so much since this seizure. And if I have another one and them find out I have epilepsy, I don't know how I'm going to be able to live like this.

I don't know how posting this helps me in anyway, but it makes me feel a bit better for some reason.

 

[arnie]

Hi Mike, and welcome, even though it's too bad that you have to be here because of a seizure. It can be pretty tough at first when you have a seizure and then if you get a diagnosis of epilepsy. People get pretty freaked out by it, especially at first. As someone who has had epilepsy for about 33 years now, I can assure you that it gets waaaay better. Even though I still have a number of simple partial seizures, and my epilepsy gets me down sometimes, my life is pretty much completely normal. Since being diagnosed all those years ago I have gotten two college degrees, raised 3 kids, had a couple of career-type jobs and now own my own business. I'm still married to the same woman, I like to ride bikes and I rode a motorcycle for about 8 years until my wife convinced me to sell it a year or so ago. I am very comfortable with my epilepsy which helps make the people around me feel comfortable with it. It will be a help for you to hang out here for a while so you can vent, be with people who have "been there, done that" and realize that life goes on. I hope that you don't have any more seizures, of course, but if your do, you do. Learn all you can about it and take as much control as possible of your treatment. Cheers!

 

[Juju26]

It can be tough.

I was in my graduating year this past May and had to leave college after having multiple seizures. I still haven't been diagnosed, eeg, MRI, and CAT came back normal.....but I still can't drive.

After having multiple seizures for the past several months, I think I might be getting better and plan on going back to school in January.

Just keep your spirits up and don't let this bring you down. If you feel like crying, go ahead, and if you feel smiling, do that too.....just don't stop moving forward in life and definitely don't let having epilepsy take over your life, we may have to live it, but we also have to find ways to work around it.

 

[qtowngirl]

I hate to create a sobber story here, but my life has just sucked so much since this seizure. And if I have another one and them find out I have epilepsy, I don't know how I'm going to be able to live like this.

welcome mike

never worry or feel bad about 'a sobber story'... it's why we're here. to help each other, to vent, get things off our chests, pretty much the whole gamut of what dealing with seizures means to us. talk away.
the main epilepsy diagnosis is after two grand mals (tonic clonic) with an unknown reason, the 'unknown reason' cause given to 70% of us with epilepsy. sometimes they find out a reason down the road, and others never... it's very frustrating but doesn't have to own us.
we all understand what you're going through, esp. with the driving. following the docs recommendation is a very smart move, which shows your understanding of right and wrong when it comes to seizures, pat yourself on the back ok there's many people from young to old that ignore the rules, it's sad. and so risky.
just keep reminding yourself you're doing the right thing, on top of how you feel deep down. epilepsy is one of the main diseases that really shows you your strength, as well as who your real friends are, many of us have learned. so, my advice is if they've all stopped talking to you, they aren't true and don't deserve you, end of story. it's a hard thing to endure but when you come across those who will stick through it with you beginning to end, THOSE are the ones to keep. they will mean everything to you, and mentally help you heal, which is what's a true friend, putting their thoughts and feelings aside to help.
it's good to know you're working, it's great stress relief. and trust us that it's wonderful to have parents that help with what you need when not driving, many with e have had to go through it all alone, it's night and day when you have family there to help.

come on anytime, bernard has created the best epilepsy site in existence, and you'll see that you're never alone. if you have a question or just wanna freak out, there's always someone who's with you, this site really covers it all, from age to diagnosis to life changes to fear to meds to, well, good news too, b/c it's also possible to get better. best of luck mike and keep us posted!

 

[masterjen]

I agree with what the other responders have said, but just want to add that you say your friends haven't called you to hang out . . . you call them!!! Even if it is to just chat on the phone with them, keep the lines of communication open with them or you will find their lives are continuing on with out, and you will become more and more distanced from them. Talking on the phone
may put them more at ease at first, and they'll realize (and it will help you to realize as well) that you are the same person you have always been. If telephone talking is not something your friends do, initiate live chat with them on facebook, or send them emails. No hobbies? Try a night-school course, for example: an art course, acting, cooking. It doesn't matter what it is, as long as it gets you back out into the world.
It is easy to become locked away in your own world, and the more time that passes the easier and more comfortable it becomes to stay in your own world. I can't stress enough how important it is to break away from this cycle you've started for yourself - I had to learn this the hard way, but fortunately I caught myself in time when I realized what was happening. Good luck!

 

[Mike758]

I agree with what the other responders have said, but just want to add that you say your friends haven't called you to hang out . . . you call them!!! Even if it is to just chat on the phone with them, keep the lines of communication open with them or you will find their lives are continuing on with out, and you will become more and more distanced from them. Talking on the phone

Thanks for the advice everyone, I really appriciate it!

In reply to this quote, I never really got too deep in talking about my friend situation. As for my close friends that I usually hang out with we all talk in school still and I do always mention how I want to hang out. And in the past someone would call me or people would discuss it in a group message when we would hang out. I haven't got calls or group messages. I even talked to one friend on the phone yesterday and he said he would get back to me, and here they all hung out and no one got back to me. I never did try calling anybody though, maybe I'll try that.

My theory is that they're afraid I'm going to have a seizure when I'm with them, unless there's some other reason they don't like me anymore. I really can't blame them if they're scared of me having a seizure, i personally would be nervous hanging with someone who might have a seizure (before I knew about them).

I did find a new group of friends who always ask me to hang out, and I hung out with them for the first and only time last weekend. One kid came all the way to my work to pick me up, which not even my closest friends would do. The problem with them though is they always play football, which I did last Saturday, and I sprained my wrist. My mom flipped out, worrying about me having another head injury, so I'm not alowed to play football with them anymore. And when they're not playing football, they're either smoking weird or drinking, which wouldn't be a good idea for me since I might have epilepsy. So they're pretty much out of the picture now too, that's why I never brought this new group up.