New - I don't want to be here

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bighealey

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OK so you all are the experts. I had two seizures. The first one on Dec 3rd while working at my desk from home. Crash bang, out cold and sent to the hospital for all the tests known to man kind. They put me on Keppra which was the devils drug because I became a ranging volatile nutcase. Then I was switched to Vimpat which has a lot fewer side effects. OK so I asked to have the dose reduced to 50mg in the morning and 50mg in the evening. Then I missed a dose and I had a nighttime seizure and woke up not knowing who I was. It was pretty messed up. The first time we cancelled international flights to visit my parents in law, the second seizure my wife had to rush back from overseas. All this REALLY "insert expletive here". Now I take 150mg twice a day.

Did I say driving, racing and cars are my hobby and passion. Now I can't drive again, so I can't get to work, can't have my hobby and feel useless and a burden to my wife.

I found you guys and this website. I don't know what I am expecting, I know most folks have had a ton of seizures and I am probably just a big whiner because I know many have it way worse than me.

I really don't want this malady. And I wish I never has to search the word Epilepsy. After all I don't remember the seizures so maybe they did not happen. I wish......................
 
You are not a big whiner. Anyone who has to deal with epilepsy and everything that comes with it can whine away :-) I know I whine, and I have only had one tonic clonic--but I have PLENTY of other kinds, and dealing with meds alone is sufficient reason to whine. Yes you will definitely get a sympathetic ear or two or three here. It's good you wandered to this site because it's been helpful to so many of us. It's really nice to not have to deal with this alone. Welcome to CwE!
 
Hi, I'm pretty new here and I'm always whinning :) I'm sorry you're going through such a tough time right now. Things will get better for you as you have a lot of adjusting to do. I've found everyone to be really helpful and supportive and knowledgeable here. I don't have the same type of seizures as you do but I just wanted to say you'll get such a lot of good advice here from people who do.
 
Don't worry about whining bighealy - I think all of us have gotten on here and done it at least once (usually way more than once though for all of us :lol: ) Everyone on here pretty much knows what everyone else is going through. It doesn't matter if you only have one seizure a year or one a day.

After almost all of my seizures I don't remember what happened while I was having it. A good bit of time I won't remember what my have happened minutes to days before it.

I haven't worked since I was diagnosed with epilepsy. I can't drive either and I feel like a huge burden to others. My grandparents would take me places a good bit but they can't drive now so I have to rely on other's to get me there. I hated having to ask my grandparents to run me out to the store so I could pick up a few things, I know they didn't mind at all they probably even liked it.

To get to dr visits my husband would usually have to take off work so I can get to them. My friends live about an hour away and it's really hard to get together. They can come see me but they have younger kids and they usually bring them along.

I'm on keppra now and I know what it does to you. I've gone crazy telling people off, ones that I know and ones I don't know. When my friend came to see me once her 3 year old started coloring on my $20 coffee table. I pulled the crayons out of her hands and started screaming at her like crazy!!!!!!!! The poor girl started sobbing and crying. My husband was trying to calm me down but I just kept screaming at the little girl trying to scrub the crayon off the table. My friend left because she couldn't get her little girl to stop crying. She's not mad at me because of it (I'm surprised) but I think it's because she knows how my meds work on me. I still apologize to her for yelling at her little girl every time I see her. Luckily she just laughs and tells me that if her kids are ever bad then she's gong to bring them here and let me yell at them.

You'll get a lot of help here on this web site - I know I have.

Nice to meet you!
 
Bighealey - I haven't had many seizures but E has certainly impacted me over the last few years since I had my first of 4. No one wants this condition, but is just is and that's why we're all coping... My passion is my motorcycle. I don't know where you are, but here it's a 6 month restriction, so I'll be riding again in October if all continues well which I would expect it will. You're not whiny, I'm sure your wife is OK with it if she loves you - my husband has been my lifeblood during all of this and is happy to be there for me. Welcome and I hope you find the support and comfort that I've found being able to escape here with others who understand.
 
Thanks for all the kind replies. I am still a mess, crying at the drop of a hat. Knowing I am not alone helps I suppose. I answered a poll about what percentage of a seizure we remember. There was no 0%. I cannot remember a full week preceding the 1st seizure and similar with the second.
 
Bighealey keep in mind that depression can be a byproduct of the seizures themselves and the meds. Of course you are sad because of the diagnosis and the impact of it on your life. But the seizures can chemically contribute to depression, and the meds, especially when you initially start them, can do the same. It might help a little to realize that how you feel has an external influence right now. You will adjust to this diagnosis and start to live with it and fit it into your life. We have all had to do the same. Wait and see how it plays out. You very well may get full control of this and just have to wait out the driving suspension. You don't know how this is going to play out so don't jump to the worst conclusions. Take care of yourself and breathe.
 
Hey bighealey.

Look at the profile picture. You're not alone. It gets easier.
 
bighealey,

know one wants to have seizures,there are people who get there sz's controlled by med or brainsurgery I wasn't one of them, and you can at least say you have driven.I've never had a license.

medication can depress you and epilepsy can also along with the sz's.

It's common for you to not to remember the sz'sI only remember certain types of sz's and when I injure myself I know I've had a sz.

I've had sz's for 50 years but I do know that I have epilepsy.I've been on a lot of different kinds of meds.
 
Peace
I've heard the less often, the harder it can be to cope, because you're not used to them.
I have had a handful a year since 2008 and I know what you're talking about.
It sucks, because "we" are not even "there" to comment because of the fluctuation or loss of consciousness.
I feel like I've always just kind of 'popped up' somewhere where everyone (if in public) is looking at me and I'm just thinking "where is the moose that just attacked me?" because of the settling in pain, and that my consciousness is still "flung"...
Consider, existence is trapped into the tiny electro-clams made by the atoms within the brain. When one or several of them are walloped into opposite polarity it chimes the brain like a bell.
That one has had their bell chimed into a faster wavelength than normal (aka seizure), we've achieved brain mega-bitrate of experience, that the brain vibrations, wave rate, we've gone and come back from the very edge of what human being is. Pity those humans of mere 64 bit!
 
I am angry and disappointed by my body's weaknesses. It's not worth the time and effort I put into keeping it healthy. I despise the ruin.


Sent from my iPhone using Tapatalk
 
Hi dude it is a shock adjusting to change in life and it's never easy but life in time, it may go back how it was in the meantime try find a way to have some fun even though it seems everything is against you. If you get busy having some fun or doing something (anything) productive it helps lots with avoiding depression.
 
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big healey,
don't let the epilepsy win fight don't give up.you have epilepsy it doesn't have you. there are a lot of people that have it really bad and are having seizures every day but they live there life.I know I do.I don't let the seizures win.
I'm fighting and I'm smiling so I have a seizure big deal that's life.There are others worse off.
 
I know how you feel.
Look at my profile pic. I'm not a race car driver, but I sure did love driving my Saleen Mustang. I can't drive it anymore. It just sits in the garage. All I can do is stare at it and pray for the day when I can get behind the wheel again. That day might be in the future as my doctor says I am a good candidate for surgery. Started the testing 3 weeks ago.
I also take Keppra. The rage is sick!
Hang in there, it'll get better.
 
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