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Sten

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My wife of many years has epilepsy and I am the primary bread winner in our house, and she is on my insurance. This puts a lot of pressure on me to make sure everything is ok with my job, since we rely on the insurance to provide her treatment.

She was diagnosed as having intractible epilepsy last year and things have been horrible for both of us--her because she is seizing a lot, and losing control and me because I am scared every minute of every day while I am at work.

I have no idea about support groups locally, so I thought I would try here.

:horse:
 
Hi Sten, welcome to CWE!

We have plenty of caregivers on this site -- and as you may know, CWE was founded by Bernard out of love for his wife Stacy who has epilepsy.

Have the docs come up with any suggestions for further treatment for your wife? Have you looked into neurofeedback? More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ Neurofeedback first showed success in treating folks with intractable epilepsy -- maybe it could make a difference for you and your wife.

I hope you feel free to vent and explore the different forums here. Lots of support, info, anecdotal advice, and empathy available whenever you and your wife may need it.

Best,
Nakamova
 
They have no idea what's going on. She recently had a VNS implanted and was improving, but has gotten worse over the last three weeks. So bad that she has been hospitalized for the second time in less than a week. She has been going out and buying cans of air duster and I've found her post-seizure twice with them in her hands or up to her face. I can't help but think she is experiencing addiction, not a bout of epilepsy. The neuros can't find anything wrong with her eeg (they never have though), and they are referring her to a neurophych unit. If she is telling the truth it isn't something anyone in my town has ever seen.
 
A negative EEG doesn't necessarily rule out epilepsy -- the seizures can be too transient, or originate too deep in the brain to show up. I'm surprised that the docs would implant the VNS if they didn't think the seizures were epileptic in nature.

The air duster thing is a very bad idea. It's extremely dangerous because the gases expand and cool rapidly upon being sprayed. Inhaling causes hypoxia (not enough oxygen getting to the brain), which can in turn cause seizures. More info here: http://www.ehow.com/info_8407753_effects-breathing-canned-air.html
 
Hi Sten,
First of all I want to thank you for being such a supportive husband to your wife. My husband is in the same situation as you are. I don't know what I would do without him and I am just very grateful that he has a passion towards taking care of me and our children. He has that same pressure on his shoulders as you do. One thing that has really helped us when he had to find a new job was his experience and qualifications. He's a mechanic and works on the amonia system at Foster Farms Dairy. Maybe you could take advantage of all the opportunities of learning or training there may be at your job. I would love for my husband to talk with you sometime. Praying things will get better for you guys.
 
I'm sorry I wasn't clear in my post, my wife definitely has epilepsy. This new behavior is what's odd. She's sticking to her story that she doesn't remember doing the air duster, which makes me very scared since this means she can't be left alone and I have to go to work. I am praying heavily right now since it feels like its all I can do. I am being kind and supportive, but she is very angry right now that she is in the hospital. I figure, better angry than dead.
 
I know how bad this stuff is and that's what's really scaring me. It's bad enough worrying about SUDEP but this? She says she can't figure out why she's doing it, has no memory of it and I know she hasn't ever done anything like this in the past. Is there such a thing as an ambulatory blackout?
 
Blacking out during a seizure is not uncommon. I know I've been walking in the sidewalk & can see the bus stop ahead when I had a seizure. I thought I was aware throughout them but I blinked & the bus stop was a few feet behind me instead of a few yards ahead of me. Another time I remember having one while walking & the next thing I know I"m in the middle of an intersection.

Apparently I can walk & keep doing things but I'm guessing that I"m on autopilot since I"m not aware of what I'm doing.

The scary part for me was discovering that I have no idea whether this has happened or not. It doesn't happen during all my seizures so I often don't know if I missed something or not.
 
When I have my seizures I usually black out and do things subconsciously. I don't know what I am doing at the time until family or friends tell me afterwards. I think I might be responding to my natural inclinations. Perhaps this may be similar to your wife's experience with the air duster. I don't know. I'm not a doctor but it's just an idea.

My seizures only last for about 5 minutes of being unconscious so if she has something similar to what I experience I don't know how long it would take her to go buy a can of spray and then use it unless she has some hidden. I guess the question then would be is how can you stop her from getting a hold of those cans. With her being so emotionally distressed it makes sense that those cans could be a comfort to her, just like when people over eat. If it is a comfort thing as to why she's turning to those air dusters hopefully you can find alternative ways of comfort for her.
 
That's what I've been thinking-that it's some kind of comfort. I think she needs treatment of some kind. It's a holiday weekend so I am getting nowhere with the insurance company, really frustrating but she's worth it. Thanks everyone for the support and encouragement.
 
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