Unveiling the Truths About Living With Epilepsy
Living with epilepsy can be challenging, so we'd like to create a space where you can share what you find most challenging about managing epilepsy. What are the some of the hardest parts of epilepsy? How do you cope with living with epilepsy?
Flashing lights are one of my many triggers so my husband has to warn me so that I can shut my eyes before we get near them This is also an experience I had one day, that has nothing to do with flashing lights. My husband drove me to the grocery store one day so that I could pick up my prescription for pain pills I had recently had my right knee replaced. As I was standing at the counter I noticed that the words were getting very blurry on the plaque I was reading, and then my hands started to shake. those are both of the many tells I have that make me aware that a seizure is on its way. I was talking to the pharmacist one minute and laying on the floor a minute later! I fell and hit the right side of my head so hard that after laying on the gurney waiting to be transported to the hospital for a CT scan I had another seizure! I was embarrassed because that is the grocery store that we have been going to for over 30 years so we know most of the employees and our neighbors also go there. My husband was waiting out in the car and was getting nervous because it was taking me so long and then he saw the paramedics and followed them in and found me on the floor. I usually have him go in to pick up my meds but this time I had questions. When I arrived at the hospital they took me back for a CT scan right away. The ER Doc walked into the exam room with the scan and showed me that I had 4 Subdural Hematomas on the right side of my head and that he was in touch with the
I was not able to finish. I was told that i had to stay in the ER for 4 hours so that I could have a follow up CT in 4 hours of my life! And that if I still had brain bleeds that I would be transported to the Trauma hospital for surgery to stop the brain bleeds. That was the longest 4 hours of my life! The follow-up CT showed that the brain bleeds had stopped so I could go home. I had difficulty sleeping after I got home and I still cannot sleep on my right side because my head goes numb! 
you have been through so much. I can't even imagine how scary this experience was for you. My heart truly goes out to you. Thank goodness you are ok now. I am sure sleeping on your right side is uncomfortable and numbing for you. I hope you do not roll over onto that side often in your sleep. Please keep us posted with how you are doing. Jill (Team Member)
I don't have epilepsy myself. My son has it. He is almost 34 years old. He was diagnosed with Benign Rolandic Epilepsy when he was 5 years old. He cannot drive or hold down a job. He takes so much medicine that he has to set alarms. He also has a VNS. He has changed from his neurologist in Tupelo Mississippi to one in Jackson Mississippi. His dad and I are hoping that something more can be done to make him more independent because his dad and I are older and we are concerned about what will happen to him when he doesn't have us anymore
, caregivers are welcomed in this community! thank you for your bravery in sharing a piece of your son's story - I am sure this is a difficult journey for you all. I hope that his new Neurologist can provide him with a care plan that works for him. It's definitely understandable to be afraid of what's to come in the future, so please know you're not alone in this feeling. Have you tapped into your local resources? Perhaps this might help some. I found these articles that I thought might be helpful:https://epilepsydisease.com/community-resources
https://epilepsydisease.com/resources-healthPlease keep us updated.
Warmly,
Kailah H, Epilepsy Team Member
