Want my life back

Glad you have them under control. Thank you for your input.

@murphymarg59

I am not driving right now. I have not reached 6 months seizure free, since they came back last year.

The meds that I am taking are: Vimpat (200 mg) 2x a day and Topamax 150 mg. I think the Topamax is making the little bit of memory that I have left, worse. However, I am deathly afraid of trying a new medication. I don't want the seizures to start all over again if I kind of have them under control, at least for now.

Dear @murphymarg59

“Want my life back?” Hmm… Well, our age sets older & faster but we are alive! 🙏🏻

My life went to another way. I am 69 years-young now, but my life changed: TBI member from a bicycle accident in 2012; my kids have been married; I have 7 little ones grand-kids; my wife is great and both of us.. ❤️

BUT I can’t drive - for now. My TBI looks at my eyes but now uses of my rights are not there. Trying my 6-mth to check I can see? It’s not there… 🧐

Well, thx,
Greg D. @greg1956

Thanks for your input. That’s exactly how I feel. Want my life back. Are you allowed to drive?
What meds are you on?

@murphymarg59

I feel you. I have been working with my epilepsy for 7 years. I was diagnosed at 51 years old.

I never know what may happen if I have a seizure when I am out. When I was still working last year, I found myself in the restroom after hours. I went to the restroom a few minutes before 5pm and when I got back to my office it was 530pm. I had a seizure while I was going to the bathroom, lucky me.

If I am quiet (because I am thinking about something) my husband thinks something is wrong and that I might be in a seizure and starts calling my name. I hate it. I hate that he thinks I may be in a seizure.

When I say weird off the wall things, he thinks it must be a seizure. Why, because that is how it started. I would say things that didn't quite make sense and then come back.

All I can do is keep trying to find a medication that works and keeps me from having seizures. I had one that worked for 5years. Now, I am trying to see what we can do now.

I am grateful to have such a great husband that is here to support me. He watches me like a hawk, but I definitely appreciate him.

This is still very hard, and my PCP told me it was not going to be an easy journey. However, it is the ride that I am on at this time.

Soooo, I say all of that to tell you - I too want my life back. I just trying to work with this the best I can each and every day.
BTW - he made me get a bracelet saying I had epilepsy just in case I did something weird when I was out. I really didn't want one. I didn't even tell the people at my job that I had epilepsy. They didn't find out until I had a seizure at work.

@murphymarg59
Good Morning!
It sounds like you're in a really tough spot right now, dealing with multiple challenges at once. What you're feeling is completely valid.
I felt the same way at the start of my epilepsy treatment back in 2019-2020. I tried 5 different AEDs that either worsened my seizures or caused so many side effects that turned my life upside down. I remember desperately wanting to stop all the medications to have my life back again.
But what kept me going was the incredible support from my neuropsychologist, who helped me keep fighting and exploring other options when I wanted to give up. After changing doctors several times, I finally found one who measured treatment success not just by seizure freedom, but by my overall well-being and quality of life. It took time and persistence, but I eventually found a treatment that worked better—and I got my life back. Finding the right AED can take time and requires persistence, as many of us have experienced.
Are you receiving any psychological support right now? Having someone to talk to—someone who can help you hold on during the hardest moments—can make all the difference. You don't have to go through this alone.
Please keep fighting! Better days are possible, and you absolutely deserve to feel like yourself again.
Chris