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I'm so confused....kind of ranting
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amyrmca posted:
My fiance had a seizure the first time while he was awake. Scared me. I knew he had seizures but I thought they only happened at night while he slept. Now I'm worried and scared they are getting worse. I feel so helpless. I don't know how to help him. I'm scared that they are getting worse. Now he has them almost every night. At first they weren't happening every night. According to his mom he didn't have them every night before I came along. Now I'm worried that maybe I'm making it worse. I've never seen him have a seizure during the day while being awake and he says it the first time he's had one while being aweke, which seems to worry me more then him. In my mind its him getting worse or the meds he's on aren't working like they should be. In his mind its a part of life and he has just come to terms with. I know that I"m going to have to get used to it to some degree but I'm worried about him. I can't help it. I can't help but worry that he had his first one while awake. I can't help but worry that he is having them more. I can't help but worry they are happening almost every night. I can't help but worry. Yes, I'm a worry wort but I'm scared for him, for his health, his safety, for me. I'm scared. And his family are in the dream world that if they don't talk about it and pretend the seizures don't happen then they won't happen. They talk about him eventually growing out of it. Eventually it just going away. I understand their hopes and their dreams. I'd love for it to be something that goes away or that he grows out of. But what if those things never happen. What if he never grows out of them? What if they never just go away? Are we/they just going to ignore it forever? Its something I feel needs to be addressed/talked about but as I said no one wants to address it.
Will it ever go away? Will he ever just out grow it? Does it work that way?
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BlazingTiger responded:
Amy,
Some people never grow out of them, While others do. It all depends on multiple factors. The reason. What causes them. They always have something that triggers them. Weather it be stress, certain foods or other reasons. Keep track of this. It can be a big help in the long run. Don't think that it is you, unless you are causing extra stress. I have learned that seizures can happen at any time. They are unpredictable. Another thing this needs to be addressed. It is kinda like the elephant in the living room. There are a couple other things you can do also. Add in addition to his meds. Vitamin B complex. Another thing & this is more recently discovered. Using coconut oil. It has been helpful in Alzheimers & epilepsy as well as other conditions. Thanks to Candi for that info.

Jason
 
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amyrmca responded:
Thanks. I appreciate your help. I am still learning about all this. It has helped having people I can talk to about all this. Thanks again.
 
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BlazingTiger replied to amyrmca's response:
Your welcome always glad to help.

Jason
 
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saxofone1 responded:
Hi amy,

you are not the fault of your fiance's seizures!!!!! If that were the case, everyone would be having repeated seizures.

My doctors told me that I would outgrow mine. That was 1975!! My seizures started out simle, 8-10 secs, but lengthened and became more motor as time passed. It is common for the style(and time) of seizure activity to change over time. Whether the seizures change or remain the same is an individual thing.

You mention his meds. It might be time for an increase or additon. Has his levels been checked recently? I ask because this was common practice for me. One level or med was effective for a while but later my body became unresponsive to that dosage so that changes(increases, or additons) were made. It's like one cup of coffe did what you needed it to do but now it takes two cups.

Like your fiance, I simply handled my ep. People with ep, if they want to, learn how to live with them. That is the difference in "epileptic" and "having epilepsy". We "have it' because it is only a part of our personality puzzle.

You have all rights to be worried or afraid. But it is those feelings that have you seeking out answers and asking questions.

Yeah, he may grow out of them or he may not. Right now it's a day-to-day thing. For all of us.

It is unfortunate that his family feels as they do. That is not being very supportive of him. Thank you for being there.

angie
 
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amyrmca replied to saxofone1's response:
Thank you. It does help having people to talk to so thanks. It mainly scared me because number one I wasn't prepared for it as we were having conversation. And 2 he was sitting up and awake. I wasn't prepared at all. When we sleep I'm prepared. My body and mind are prepared to not sleep to hard and get out of his way but watch him but when it happened during the day I kind of freaked. It scared me.

To be honest I'm not sure about his meds. I know he is taking tegrotal(sp?) and he takes it 4 to 5 times a day but I'm not sure on other details. I told him the next time he went to the doctor I wanted to go with him.

He keeps talking about having surgery for it. This I know very little about. Surgery scares me because the way I understand it the surgery would be on the brain. Maybe I miss read or misunderstood, I don't know. But that scares me.

Thanks again.
 
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saxofone1 replied to amyrmca's response:
Hi amy,

Seizures are scarey at anytime. No matter how much the caregiver is prepared, the seizures are going to happen on "their time". "Let's surprise her!"

That's a great idea for you to go with your fiance(name?) to his next appointment. Start writing down all you questions/concerns now. Be sure to take them with you. Such notes are very important. Keep it handy so you don't leave home with it. Don't you hate having left the grocery list at home and know you're forgetting something?!!!

What are your questions/concerns regarding surgery? I had surgery in April 02. Don't you love my head wrap? Many people on this site have had brain surgery. Enter brain surgery
the "search this community" box to read other stories regarding it. There are many.

In short, there are many tests to be done prior to the decision of surgery. The docs won't suggest it unless the likely outcome is going to be beneficial to the patient. They will go over all probalities with you, good and bad.

Start asking questions. Stay by each other's side.
angie


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