Feeling very discouraged

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ShelBell42

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I have been living with epilepsy for about 6 years now. Now I am finally on medication and have been for the last couple years. Even though I am medicated it seems like I can't go over 6 months without having a seizure. Every time I have had a seizure I have always had a grand mal. I have no warning signs or any idea anything has happened till well after and I'm laying on the floor surrounded by people. Lately I have been feeling very discouraged and down thinking that I'm never going to overcome this. I finally got my license back after a accident I had due to a seizure. And of course now I can't drive for another 6 months. I know it sounds crazy but it's embarrassing, especially when it happens at work. I've gotten to the point that I'm afraid to almost do anything because it could happen anytime and anywhere. And the worst part is I don't even know about it. I want to be able to move on with my life!
 
look around the site, there will be lots of information, with lots of people who have gone through the same if not similar situations. And of course people who are more than willing to talk to you at almost any point in time.

The first step is of course probably going to be small steps, and the hardest part is probably going to be to figure out what that first step is. Best of luck.
 
I very rarely have grand mal seizures, they are usually complex partials.

I almost never feel it coming on and I don't know I've had it. When I come out of it someone is usually staring at me with eyes wide open asking me if I'm ok. I'll ask them why and that's when they tell me that I've had a seizure.

As Court said, look around the site. There are many people here that go through the same thing as you and can offer much help.

It's nice to meet you!
 
Welcome ShelBell to CWE. We are glad to have you here.

I have the same experiences that you are having.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

What medications are you on?
 
welcome shelbell to cwe.
The last time I went a long time with out a seizure was 2012 I went 4 1/2 month.
I had 5 seizures last month I'd love to go in 6 month intervals. I'm not controlled and never have been except for ealy 90's maybe for 8-9 months maybe.
 
Hi ShelBell, and welcome to CWE. I've had epilepsy for a long time (32 years) but the vast majority of my seizures have been complex partials, not tonic-clonics (the more proper term for grand mal).
I was not in public for any of them, so I can't really relate to that, but of the thousands of complex partial seizures I have had, many of them have been when I'm in public. Sometimes people notice them, sometimes they don't, but over the years I have become very comfortable with having epilepsy, not embarrassed about it at all (after all, I can't do anything about it) and that level of comfort helps the people around me to feel comfortable too. When people see a seizure, whether a tonic-clonic or a partial seizure, they get freaked out by it, and they will stare at you and probably feel uncomfortable and may not know what to do. Something you can do that might help is to wear a Medic Alert bracelet that says you have epilepsy and gives them a number to call. They will probably call 911, but if there is a number for a friend or family member who could talk to them and then come and get you that would have the effect of putting you more in control of the situation. Also, the bracelet would give you an opening to talk to your co-workers about your epilepsy in case they don't already know. That also would give you a measure of control and help make things more "normal" if you have another seizure.

I know the feeling of not knowing whether you will ever overcome it, and that's just part of having epilepsy, unfortunately. Due to some changes I've made in my medication routine I have gone just over two months with no seizures, which is the longest stretch ever. I'm hoping it will continue, but I probably will always have in the back of my mind that another seizure may be just around the corner. I also have to be very careful to take my meds on time, 4 times a day, so it will be hard to forget that I have epilepsy.

I hope all that has helped some. Hang around here and you will learn a lot and get great support. I've put a link here to information about the main seizure types, which may be helpful to you if you don't already know it.
http://en.wikipedia.org/wiki/Seizure_types

Onward!
 
Welcome and I'm in the same boat. The frustration is something that we have to deal with and ask for help which being a independent person like myself has been hard. Over the last 2 years I've had 10 tonic-clonic seizures. Resulting in a car accident, horrible tongue bites, waking up in a neighbors house ... really ... and even more horrible events. Had a seizure on Monday which i think it was my own fault for missing a dose of meds. Be honest with yourself and your limitations, then ask for help. I've found the guilt of telling half truths is worse then anything. Good luck and your not alone.
 
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