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#1
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HelloHi 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. |
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#2
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| 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 neurologist'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.......... |
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#3
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| I have never looked into diets, what kind of diets can help? I am satisfied with my neurologist, 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. |
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#4
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![]() 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
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#5
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| 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. |
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#6
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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 ... 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! ![]()
__________________ Sharon Advocate & Member of Head Storms - Resource Center "Vujà dé - the feeling you've never been in here before!" |
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#7
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| Hi Jon, welcome to the forum. ![]() 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. They are listed in the chart. Perhaps. My wife's family on her mother's side has a history of epilepsy too.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? |
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#8
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| Thanks everyone for all the info and advice, it makes me feel a little better. Im going to check out the alternative treatments ASAP. |
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#9
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| 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. |