Before we dive into where my epilepsy journey is today... lets rewind for a diagnosis story for all the new people.
When I was 21 I joined the Air Force as an Air Traffic Controller. This was such an exciting career choice and I couldn't wait to get back to get started. The plan was already set... re-enlist to get the bonus, stay in for 20 years, then go out as a contractor to an overseas airport for a year, and then come back to be a civilian air traffic controller. This was the plan until one day in tower training I had a seizure and dropped the flight strip. My trainer sent me straight to the flight doc. The doctor had me do an EEG and found out that I had Juvenile Myoclonic Epilepsy with 7-8 brainwave seizures a minute that weren't strong enough to push through.
This is where it gets fun...
The doctor was playing hacky sack while giving me a life changing medical diagnosis... I mean, come on! He told me that I was disqualified from air traffic control and possibly the military, but a med board would decide that in about 5 months. He told me that my epilepsy wasn't that serious and I would NEVER have a Grand Mal seizure as my seizures were only Myoclonic ones - where I jerk my body. He told me that I didn't have to take medication, but could if I wanted to... and that he did not recommend it if I wanted to get pregnant. At the time I was married and we were talking about starting a family... so I chose not to go on meds. He did tell me my triggers are stress and sleep deprivation, so I should stay away from alcohol and cocaine, that's great advice! 🙄 When he was done providing this life changing information during his hacky sack practice, he asked me if I had any questions. Y'all, I was a scared 21 year old enlisted trainee being told by an officer that all the plans she has made for her life, career wise, are just not gonna happen AND waiting another 5 months to find out if I could even stay in the Air Force! It was like walking through a haze! After being disqualified from air traffic and the military, I pivoted to banking and started a career there.
Well, I didn't let that diagnosis stop me...
but I also didn't take any precautions based on what the doctor said. He didn't seem concerned why should I, right?! I continued to live life like normal, driving, drinking, jerking my arms everywhere all the time, moved to two different states and a few cities within them and everything was going great... I mean, I still had the myoclonic seizures all day every damn day, but again... the hacky sack doctor was not concerned so why would I think this isn't normal? I was building my career in banking and living my best life!
When I met Michael my lifestyle started to slow down... I wasn't at the bar every night drinking copious amounts of alcohol and partying with my friends and things started to happen. All of a sudden, I felt more seizy than usual and I started having issues breathing. My heart would have random episodes of palpitations, so I thought I was having heart issues... I do have a heart condition. We rushed to the cardiologist and she cleared me real quick... so now what? December 23, 2018 my whole life changed forever... I had the first grand mal seizure, we know of, in Publix on one of the busiest times of the year... Christmas Eve Eve! Ugh! The paramedics were nice and helpful, even though I attempted to dismiss them when I came to, "thank you for your help. Y'all have a great Christmas!" Yeah, they let me know we would be headed to the hospital for an MRI and other tests as I hit my head pretty hard... FUN!
The hunt for a neurologist begins!
At this point in my life, I have been in and out of doctor's offices and hospitals for a good portion with various different medical issues, some they never figured out and they just went away, so I know what it will take to find a good doctor. Yup, I will say it... NOT EVERY DOCTOR, NURSE, OR MEDICAL STAFF IS EQUAL! Some really want to help you and some really just want your insurance money! So, we found a neurologist that was close to us and we set an appointment. This man was so fking rude it wasn't funny! He was used to working with retired clients and was not at all interested in moving at a fast pace to get answers and the paperwork back to my employer... that doc didn't work out! (Do not stay with a doctor you do not connect with!)
While I was hunting for a doctor that would actually listen to me, I had a cluster of seizures in March of 2019 in the movie theater by our house. We were going to see Wonder Woman and I remember I just wanted nachos and a MTN Dew! Michael said he turned to look at me to verify the drink and I just stared at him like I had never seen him. This is a look that people have said I had given in the past, so I know I have had grand mal seizures before... scary, right?! Well, in this moment, I fell straight back and smashed the back of my skull on the concrete floor. Those same paramedics from Publix were the same amazing gentleman that helped us at the movie theater, it wasn't even on their route they just happened to be closest to us.
I have vague memories of this time and honestly I think I am purposefully blocking it out because what I can remember is very emotional + scary! I have visions of lights passing by on the ceiling as they wheeled me down the hallway of the hospital with doctors talking about how there was bleeding on my brain, a crack on my skull, and that they might have to do surgery if the bleeding doesn't recede on it's own. Apparently the doctor was telling Michael this... just another thing that loved ones take on when we live with this shit! He had to be the one to call my parents and give them the news. I remember the nurse telling me I couldn't have Excedrin and turning a blind eye to my cannabis vape, since it was the only thing that gave my head relief. When I saw my dad enter the room I thought I was dying. I remember feeling so much emotion and wondering... "is this is?" It wasn't, he was just scared!
This experience isn't all bad...
Y'all, I found my neurologist at the hospital during this hellacious experience. He was the first doctor that was willing to listen, not just shove prescriptions and other things down my throat, and had availability at his doctors office! WIN!! We started getting tests done, started me on a cocktail of prescriptions that I got to choose, and helped me with the paperwork for my job. Things started to look up until my memory wasn't coming back and the concuss brain fog was just not going away fast enough for me, my neurologist thought I was being impatient, but he sent me to a memory doctor. The BEST in our area! PERFECT! More answers.
This was an 8 hour appointment doing nothing but brain + memory drills. It was a lot and at the end I felt defeated. It felt like I couldn't remember anything and that the brain drills made my eyes go cross. Ugh! Who is this new person? Why is this my new brain? I remember going home and feeling absolutely worthless.
When Michael and I went back for the diagnosis... I felt even more worthless. While he was not doing hacky sack while providing this diagnosis, the same feeling came over me. Like being in a tunnel and just zoning... all you can hear are the words of this person but also not really. It's such a weird feeling. So anyway, he let me know that I have mild short-term and cognitive memory loss with the possibility of early onset dementia at 45. I felt like I was hit by a damn Mack Truck. My first instinct was to ask, "okay, so what can we do about this?" I'm a fixer, so naturally I am looking for a resolution to this new problem. He holds up an image of my brain and another's with epilepsy, bipolar and a TBI, and let me know that with epilepsy and bipolar already impacting my brain, there would be no way to repair the damage and get any of my memory back. LIKE NONE OF IT! What?! This was 2019! How could there not be anything?!
This time I wasn't defeated...
When we left that doctor's office the feeling inside my body was much different than it had been when I was diagnosed with epilepsy and when I left the hospital... this was determination. There was no way in hell this would be my new reality. How could we be in 2019 and there are no brain supplements or brain gyms that can help with my brain. Like, what?!
So, I got to work. I spent hours researching epilepsy, memory loss, TBIs, seizures, medications, brain supplements... legit any damn thing I could find, that was reputable. One day while scrolling on Facebook, I came across a conversation on an epilepsy forum about nootropics. The gentlemen were discussing memory loss and one of them was raving about how nootropics has helped him retain information, helped with his mood, creativity, and cognition. I was floored and IMMEDIATELY started researching. This is when the defeat hit... every nootropic I could find was so damn expensive and only gave 7 days worth. Y'all, we were on a budget! I was no longer working a 9-5 and we were solely on Michael's salary, there was no way I could ask him to spend $120 on 7 days worth of products. So... I searched for a more cost effective nootropic and came across Neuriva!
Neuriva was PERFECT as they also have a brain gym... buy the supplements for $50/month and get a brain gym! Sign me up! Michael was quick to jump on the bandwagon and we got me all set up. Y'all, I took these brain supplements and did this brain gym every single day for 18 months. At first, it was defeating and frustrating and I cried because some of these games seemed so easy but I was struggling. Instead of this making me want to stop, it made me want to play the games more and more and to overcome these damn things! After 18 months, I am above average for my age group, my cognitive brain age is 31, and my confidence has absolutely made a comeback!
While my memory started to comeback, the medications I was taking started to impede the progress and cause other medical issues. 3 months ago, we embarked on managing epilepsy holistically and stopped taking prescription meds. Next week I will discuss what side effects I was having and what I am doing today. Stay tuned!
Thank you for taking the time to read about my diagnosis journey. Please hit subscribe so you do not miss a post. Every Tuesday there will be a new post about my epilepsy, TBI, and memory journey. If you have any questions, please put them below. Hopefully my journey will help anyone struggling! Never give up on yourself! You got this, Warrior! 🤘🏼