Hello

[xenome]

Hi everyone. My name is Jon. Im 26. Ive had petit mals ever since I was about 13 or so. The depakote they put me on never worked but I lied and said it did so I could keep my license. Then 2 years ago I had my first grand mal. So I had to stop driving, and my wife left me, and I went and saw a neurologist and got put on keppra and depakote ER. I also had an MRI and an EEG done. I dont know Im about to have one, and its completely random when I do. Ive gone a month with having a seizure, and Ive also had 4 in one day. A year ago I sorta was made to quit my job, but shortly after I got approved for SSDI, around the same time I had the VNS surgery and it helped some, seemed to eliminate the petit mals and decrease the duration of my grand mals. I am still so depressed though. What else can I do to try to make this stop. I hate not having a job, I hate not having a woman. I just hate this so much. Sorry if Im complaining too much, Ive never posted on a forum before.

 

[Meetz1064]

Hi Jon.

I can thoroughly understand your hatred of ep. Been there, done that, and still do at times. I've had tonic clonics since I was 13 months old, and I'm 43 years od now. I'm sooo sorry for what you've had to go thru because of the ep. Are you satisfied with how your neuro's handling your case or not? If not, it may be time to hop on the doctor merry go round.

And have you considered checking into diets? There are diets that do help control seizures believe it or not. That's in addition to the meds. And, it may be that your meds are not the right meds, either. Turns out that a lot of ep patients can't tolerate gluten or lactose, and cutting those things out help control their seizures..........also aspartame/MSG are aggravators...

When it comes to ep, KNOWLEDGE IS POWER. My personal mantra, sorry. but you'll learn a lot here, I promise..........

 

[xenome]

I have never looked into diets, what kind of diets can help? I am satisfied with my neuro, it sounds like she is doing all she can. I see her every few months for a checkup and she adjusts the VNS thing in my chest. She says that it can take a long while to find the right settings for me. I was also happy with how easily I was able to get on disability. Is epilepsy hereditary? Because both my mom and my sister have it, though theirs are controlled through meds alone, which frustrates me futher.

 

[Birdbomb]

Welcome xenome

You will find many others who share your situation here. You are not alone. May I ask you why your wife left you, was it because she couldn't handle the Epilepsy? Some people get scared of things they don't understand and so they just run from it.

You need to establish a support system for yourself. Coming here was your first step! WTG!

Now find a local Epilespy support group. They can help you in many ways.

So you have the VNS? Why not click on the link at the bottom of my post and see how others' with VNS live.

Don't worry about complaining. This place is good for venting. Sometimes it's sites like these that is where you can only find others who do understand your situation because we ALL are living the same.....Coping with epilepsy

 

[xenome]

I am not 100% sure why she left. As far as I know we were fine until after I started having grand mals, and she wouldnt tell me why, so I blame my epilepsy.

Thanks for the VNS link, Ill check it out. I have had some success but it sounds like alot of people with VNS hate it.

 

[brain]

:hello: Xenome!

Welcome to CWE! First of all, don't be
blaming on Epilepsy for your wife leaving!
There's a lot of 'normal' people out there
that are leaving their spouses and leaving
their other spouse with question marks
hovering over there heads ...
:huh:

But in my case, my ex told me that he
couldn't handle the Epilepsy anymore and
said it more times than once and in front
of others - so it was an established fact.
And everyone tried to help, but he was
resistant to it.

But if your wife left you and did not tell
you why, don't be blaming yourself at
all, she could be the one at fault totally
not you!

Simply put - spouses that leaves others
because they have Epilepsy, or because
they got "tired of them" or for other
stupid reason ... even cheating ...
aren't worth being around with! Stuff
like that makes me want to puke! It's
selfishness, inconsiderate, and about
as cold as one can be!

They have forgotten when they got
married what marriage was all about.
Marriage isn't something that you can
dispose of like disposable paper plates!
Geesh! But a lot of people out there have
that attitude - so don't blame yourself!
:soap:

 

[Bernard]

Hi Jon, welcome to the forum. :hello:

What else can I do to try to make this stop.

Have a look at the chart linked in my signature.

My wife had a similar seizure profile to yours about 10 years ago when she completely eliminated all seizures with a psuedo-LGIT diet and EEG neurofeedback.

I have never looked into diets, what kind of diets can help?

They are listed in the chart.

Is epilepsy hereditary?

Perhaps. My wife's family on her mother's side has a history of epilepsy too.

 

[xenome]

Thanks everyone for all the info and advice, it makes me feel a little better. Im going to check out the alternative treatments ASAP.

 

[RobinN]

Hi Jon - Welcome.
My daughter started having seizures at the age of 14.
We are working with diet, hormones, and anything else that "works", cuz the meds are nasty to her system.