Want my life back, trying to keep my seizures under control

@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

@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.

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

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

@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.

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

@gregd1956
Hi Greg,
I really admire the way you've been facing your epilepsy challenges—choosing to see your glass half full rather than half empty. Congrats! 💜
You're absolutely right: what matters most is how we keep moving forward and find meaning in the life we have now, not the one we had before. That's such an important truth to hold onto.
Let's keep moving forward, one step at a time!
Chris

@mollie1022
Hi Mollie,
The same thing happens at our house! My husband does the exact same thing—he starts calling my name and checking if I'm okay whenever I go quiet. I'll be honest, it bothered me a bit at first, but not anymore. Like you, I'm so incredibly grateful to have such a caring and attentive husband. It's truly a blessing! 💜
About two years ago, I decided to start wearing a medical alert bracelet following a challenging experience. During one of my Pilates classes, I had a complex partial seizure and couldn't speak or share my husband's phone number with my instructor. Even though she knew about my epilepsy, she understandably panicked when she couldn't reach him. She had to wait about 15-20 minutes until I felt like myself again and could give her his number. I felt so bad putting her through that!
Since then, I have never left home alone without my bracelet. It gives me such peace of mind knowing that if something happens, the people around me will have the information they need to help. Even when I can't speak, I can still show them my bracelet.
Accepting epilepsy and how it's changed my life hasn't been easy—especially during the first two years of treatment when I desperately fought to get my old life back: my job, my independence, my driving license, everything. All that fighting only brought me more suffering. Thankfully, I found an amazing neuropsychologist who helped me through this transition. She taught me how to adapt my life and accept that epilepsy is now part of who I am.
@closetmonster93, I'd love to hear your thoughts on this if you're willing to share! You recently posted something so beautiful in another discussion about epilepsy acceptance. I was really moved when you said, "I live with it, I don't fight it, it is part of who I am. There are things that I can change, however, I have come to accept that this is part of who I am. I find that if I don't fight it, it is easier on my mental well-being." Those words really resonated with me, and I think they could help so many others here, too.
Chris