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January 20, 2024
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Answer Summary

Members responded with deep empathy to the question about feeling like a burden, with many sharing that epilepsy has made them dependent on... Read more

Members responded with deep empathy to the question about feeling like a burden, with many sharing that epilepsy has made them dependent on others for rides, caregiving, and daily tasks, which weighs heavily on them emotionally. Several members described finding strength through faith, service dogs, community support, and practical tools like the Epilepsy Foundation's transportation and social programs. A recurring theme was that while family members often struggle to fully understand epilepsy, staying connected to this community, advocating for oneself, and practicing self-compassion helps members feel less alone.

A MyEpilepsyTeam Member

Keppra 1000mg 3X daily
Lyrica 20mg 2X daily
Siezure free since January 2019.THANK GOD!
I live alone with my Siezure Alert Response Service Dog Josie. I am thankful to be independent and strong. My daughters both live close by and will help when needed. They are very busy with their businesses and teenagers so I take Tri County Transportation to MDs haircut grocery vet...Monday through Friday. Have to watch church on TV. Gets lonely and wish I could do more, but GOD knows I have limitations on to much stimulating excitement, lights,much rest needed! I give it to GOD and HE LOVES ME!
BLESSED TO BE WALKING TALKING PRAISING GOD. No one expected me to live after Traumatic Brain Injury 7-2012. Careflighted to Pensacola where world known neurologist surgeon and his team where waiting for me. GOD has more plans for me! STAY STRONG MY WARRIOR FRIENDS
ENJOY EACH MOMENT 😊👣🐾🐾

January 22, 2024
A MyEpilepsyTeam Member

Lena we are like family here. I feel guilty because when I’m well i can get so busy that I forget to check in on rveryone or post an update. I have to learn to slow down. Being part of this community helps me care for myself emotionally and that’s just as important as taking care of myself physically.

March 15, 2024
A MyEpilepsyTeam Member

I do sometimes, especially when I have a really bad seizure and people have to stop what they’re doing to take me to the hospital. I usually try to treat my issues at home with meds that I have for seizure after care and then rest, but sometimes things are so severe k need more care than I can give myself at home.
It also sucks to be out and have issues because I feel like I’m taking away from other people having fun when they have to stop and help me get home. I’m learning that it’s ok to lean on others when I’m ill, and people have been great about helping me when I need it, but yeah there are still times when I feel guilty or embarrassed about it.

March 15, 2024
A MyEpilepsyTeam Member

Good morning Devin YOU are not alone. Most of us on this site have had the same problems with work and even our loving family
No one knows Epilepsy and the many complications we suffer, until they themselves have Epilepsy! No one takes the time to research complex neurological disease. You must do the research and be your own best advocate! Many kind friends on this site will help you! Do you have a great neurologist? What is your diagnosis and treatment? There are so many different types of siezures. We learn from experience. I suggest keeping a journal of your siezures and all medical records. Keep journals of your work interactions! American's With Disabilities will help you with your rights to work and adaptations employers must make available to you to continue to work. It takes time to get all the resources. Keep trying! Ask questions! Pat yourself on the back! You are amazing! Keep believing in yourself! Write me or any member of your team we will help you with anything we can! I have Temporal Lobe Epilepsy after a traumatic brain injury 7-2012. I was referred to Mayo Clinic Epilepsy Monitoring Unit Jacksonville FL in 2018.Now gramal siezure free since January 2019.THANK GOD! Most major University Medical Centers have Epilepsy Monitoring Units.
I had a full week of constant monitoring of EEG 24-7 EEG MONITORING! Every department checked me out! RX changes and diet changes has helped me understand myself and accepting myself.
GOD BLESS AND HELP YOU!
GOOD LUCK! Keep believing in yourself and keep trying! It's not easy but you have found a great place to help you find resolutions!😊👣🐾🐾

January 24, 2024
A MyEpilepsyTeam Member

I have been seizures free for 2 months thank God.

January 21, 2024

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