Over a year ago I was diagnosed with PNES which means Psychogenic Non-Epileptic Seizures. So what exactly is that? I’m so glad you asked. When I get too stressed out it’s like my body short circuits and its way to release stress is by having a seizure. Now everyone has some stress but I can withstand an abnormal amount of stress.
What does treatment look like? I was placed on an anxiety medication and sent to a neuropsychologist. I started seeing her once a week and it eventually went to once a month. Now these seizures are real. I have no control over my body at this time. I have learned the warning signs and can take a rescue medication to prevent them. If one happens I move on like nothing happened because dwelling on it can produce more.
I couldn’t drive, function, or take care of my kids when they first started. As a mom we do it all; clean, drop kids off at school, help with homework, do baths, read, and more. It becomes more stressful and frustrating when I can’t do anything to help my kids. I felt useless and worthless for awhile.
As time went on I felt more controlled until I experienced heat. Physical stress also causes my seizures. As you can see this is loads of fun… Knowing that it was just the heat, I was able to continue on in life. Until recently. Starting up in March I had episodes where I was completely blacking out. I had dizziness, lightheadedness, and a circling feeling inside my head. With my PNES seizures I am still with it too an extent but have no control over what my body is doing. I ended back in my neurologist office to be placed on an epileptic drug and was diagnosed with both PNES and EPileptic seizures.
Recently I had a cluster where I have been off work for about a week. I was prescribed a sedative to basically knock me out to reset me and the dose was lowered on another medication. I’m back to no driving. YAYYYYYYYYY…. Which sucks ass. I have two stops in the morning on mondays, wednesdays, and thursdays for my kids and this is all done in a 20 min period prior to going to work. Luckily I do have a fabulous mother in law who comes down and takes care of me and my children. I cannot thank her enough for everything she does for our family. She is so kind, caring, and wonderful.
Moral of the story being a mom with seizures sucks. I have told my daughter how to call my husband incase I have one when he is not home. I know where all my rescue meds are and I tell myself I am being the best mom I can with the cards in my hand. I truly encourage all of you to take time out of your day even if it’s once a week and do some selfcare. My storefront link has products I use for my skin care routine. Even my husband uses them. I attached a specific skin care link at the bottom of this post.
