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agedrocker

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My wife has had epilepsy since she was 11 years old. We have been married 18 years and her seizures have never been under control. She has had many seizures in public which have somewhat bothered me but my love for her has always rose above the embarrassment. Tonight she had a seizure in a restaurant that was very severe and it totally threw me. She took a long time coming out of it and many people saw her. It was all I could do to keep her from exposing herself. The manager asked if I needed an ambulance and I said no. He then asked again "are you sure?" I got totally angry and said "what do you think, I'm her husband". I am having a hard time with the experience tonight, which is why I joined this sight.
 
Agedrocker,

You sound like a wonderful husband that can deal with your wife's epilepsy, for the most part. If your wife's seizure in the restaurant was that severe, why didn't you want the manager to call an ambulance? It sounds to me like he was only trying to help. I've had many TC's in public and several times 911 has been called because of the severity of the seizure(s). But of course, my husband wasn't around when 911 was called.

If her seizure was so severe, she could have gone status, then she would have needed to go to the hospital. Have you called her neurologist and told him/her about last night's seizure? She may need a medication adjustment or change. It could happen again if not kept in check.

Good luck.
 
My wife's seizures have never been under control since I married her 17 years ago. If I called an ambulance every time she had a massive seizure in public, I would owe thousands of dollars in ambulance bills. Our neurologists wants her to have surgery to try and stop her seizures, but again the cost right now after insurance would be about $25.000 dollars. Not everyone can afford to do the 'right thing'. I understand that people with great insurance and high incomes do not understand what it is like to have bad insurance and low income. I want to help my wife at all cost, but I don't know what else I can do.
 
Hi agedrocker, welcome to CWE.

I'm sorry you and your wife have been struggling with her epilepsy for so long. It can take a toll. But neither of you should be embarrassed by the seizures. The focus shouldn't be whether they happen in public or not, but rather on what you can do to make her feel more comfortable when they occur, wherever they occur. A seizure is distressing but should not be a source of shame, stigma or embarrassment.

I definitely get you about the ambulance thing. I've had to train my friends not to call an ambulance if I have a seizure (unless there's been a serious injury or other cause for concern), because it will cost me a pretty penny. But it can be hard for the uninformed bystander to understand that not all seizures are 911 emergencies.

It must be frustrating for both of you to feel that she's run out of options in terms of affordable treatment. Is she on any medications at this point? You might want to read "Epilepsy: A New Approach" for non-medication-based ways to work toward seizure control. See Some folks have also found that dietary treatments make a difference as well. You can read more about those and other alternatives here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova
 
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