This post is part of the November 2019 Epilepsy Blog Relay™. Follow along all month!
I am Autistic Audra! I am 38 years old with a son who is also autistic with mental health issues and other disabilities like me. The other thing we have in common? We both have epilepsy. Our journey comes with ups and downs, but we are committed together as a family supported with love.
The diagnosis for my epilepsy came in my thirties just after my autism one. I had spent my whole life suffering from symptoms of repeated seizures. It exhausted my body along with my mind and spirit. The bittersweet relief of the diagnosis meant treatment, a lifelong disability, and knowing I wasn’t crazy. Complex partial focal seizures with secondary generalized seizures was the mouthful describing the types of seizures I experience daily. The medications were helping to decrease the number of seizures, but I was still experiencing at least 50+ seizures a year. This is not an acceptable standard anymore since the number of seizures increases damage to the brain or sudden unexpected death (SUDEP). We needed a different plan for me to get healthy.
The VNS implant was the first option discussed with the neurologist, but I wanted to go a different route. I knew some of my triggers were from hormones and other existing conditions such as diabetes and polycystic ovarian syndrome (PCOS). My mom works for a bariatric surgeon who had mentioned that reducing body weight via surgery would eliminate my diabetes and balance the hormones in my body. The theory was that my seizures would decrease from having weight loss surgery, which was the second option.
The VNS implant surgery could guarantee a better quality of life in my case, but the weight loss surgery could guarantee weight loss, regulation of hormones, elimination of diabetes, and possible decrease in seizures. My team, consisting of my primary care provider (PCP), neurologist, and bariatric surgeon, reviewed my medical background showing that a gastric sleeve would benefit me in the long run with possible VNS implant surgery after weight loss. This was decided since loosing the weight before brain surgery would make me stronger to survive the surgery and have a healthy recovery. The gastric sleeve being the best option since this would allow for more absorption of medications post-surgery.
Everyone was in agreement and a treatment plan was set. It was time to prep for a long requirement period for insurance along with the mental preparation to satisfy my autistic brain. The insurance requirements were two dietician visits a month, one PCP visit per month, continued weight loss of 5% of my body weight, and lab work. This took multiple lists a day with visual schedules to keep me on time with all the appointments. If I missed one in any of the months, I had to start over with the insurance portion. Autistic individuals are not always known for their awesome executive functioning skills and I am not an exception! It was exhausting trying to balance my appointments, home life, food diary, and mental health. My energy ran low being sucked into an abyss seeming as if it will not return. A light at the end of a seizure-free tunnel kept the spark inside me.
My personality is logical, analytical, and sarcastic! My surgeon understood autism; he told the truth about wanting to accommodate and help me with my needs. I won the lotto meeting Dr. James Sebesta of Multicare in Tacoma, WA. He treated me with kindness and honesty that allowed my body to relax around him and the staff. On the day of my surgery, I was being wheeled into the operating room (OR) and broke down having an anxiety attack on the table. It started to go into a meltdown, but I knew I didn’t want that for fear I would start to self-harm. Dr. Sebesta rushed into the OR speaking softly to me with one hand on my arm gently. He was reminding me that he was there, and it was going to be ok since he was not going anywhere. As I fell asleep on the table listening to his soothing voice, I knew I had made the best choice choosing him as my surgeon. Knowing your surgeon and having a relationship with the staff is important when prepping for this surgery since you will see them for a couple of years.
I suffer from depression, anxiety, obsessive-compulsive disorder (OCD), and sensory issues, which all poked their heads out before and after surgery. My executive functioning had diminished, which left me feeling depressed, giving me inertia, but unable to sleep from the worry or anxiety of my medical conditions. Does this vicious cycle sound familiar? My autistic brain needed some coping skills to get through the surgery. I made myself lists to help with organization along with visual schedules. I started to practice my own advice to clients with acceptance and commitment therapy (ACT) advice. The process of self-compassion had to be put in place again or my psychological health would fail. I spoke to the team and we decided on a larger amount of pain medications due to sensory issues. Plus, at least four weeks of healing (instead of the usual 2-3), along with a longer time on liquids for a smoother transition to solid foods. The process of meeting insurance requirements and finding the surgeon was not an easy task. It is to the many thanks of the team effort that I got to this point in the “game.” The people collaborating to help you are a dietician, insurance coordinator, bariatric nurse, medical assistant, physician assistant, primary care provider, neurologist, psychologist, and patient coordinator. Each professional has a specific job with a coordinated effort to get you to the finish line for better health.
The questions I receive today are mainly those regarding my post-surgery life. My feelings towards food have changed since I feel hunger sensation again. I get excited about eating since I feel hungry! I can only eat a few ounces of food before I fill up my stomach, so the excited I feel for food is short lived. My energy has returned with full force! It is the strength of high school all over again. This comes at a cost since I must drink small amounts consistently throughout the day. If I fail to drink or eat per the schedule of my dietician, I get sick with dehydration. This came at a terrible time when I was a conference recently lasting two days. I did not eat or drink enough the first day and I ended up having a seizure that night. It took me all the next day to recover.
My diabetes is in remission or diet-controlled per the medical code. The hormones from diabetes and my PCOS have balanced out quick resulting in no seizures. My surgery was August 26, 2019, it has been two months since that day, I have had two absence seizures and one myoclonic seizure. Two months has resulted in a mere three seizures total with my medication intake cut in half! At this point before surgery, I would have experienced at least fifteen seizures. Of course, the weight loss of almost 45 pounds currently is a huge bonus as well. This will grow to a larger number as more weight comes off in the future.
I can honestly say I am happy with the decision to move forward with the gastric sleeve instead of the VNS first. I am getting relief from my other co-occurring conditions along with relief from my seizures. The process is long and difficult, but if this autistic girl can get through it, then anyone else can do it. The next step in the plan is to see how much weight I will lose over the next year. The VNS implant surgery is postponed until we see how much we can control the seizures now that we have more “wiggle room” for dosage on the medications. Any day I can wake up and say “I don’t need brain surgery today” is a good day for me. Enjoying my newfound lifestyle, stomach, and feelings. Wondering if this will be the thing that gets me to my complete freedom.
❤ Momma Employee, 11/4/2019
NEXT UP: Be sure to check out the next post by Rachel at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed at livingwellwithepilepsy.com