‘It’s called the suicide disease.’ Pus gushed out of my surgical site. Doctors didn’t take me seriously.’: Trigeminal Neuralgia warrior details journey, ‘Helping others gives my suffering purpose’

“Hi everyone! My name is Ashton Frische and I am a 22-year old girl trying to navigate life and thrive with multiple chronic illnesses. I was first diagnosed in 2015 with chronic migraine, which was the summer between my junior and senior years of high school. I finally got stable with the help of Botox, until my mom and I were in a severe car accident in August of 2016, just a couple of weeks before I moved for college. It was definitely a blessing to be alive.

From the car wreck, I got a pretty bad concussion, and for some reason, this made the Botox less effective. I tried numerous treatments with no success, so ultimately, I decided to try the Omega Procedure. Basically, I had four leads in my head — one on each side, one on top of my eyebrow, and one on each occipital nerve in the back of the head — and they tunneled down to a battery in my chest. The battery then sent electrical signals to the leads and essentially blocked the pain, so while I would still be having the migraine, I wouldn’t feel the actual pain.

Before the permanent placement, I did a trial, which is the normal protocol for this procedure. The day after the trial placement, my pain was gone. At that moment, we then knew it was time to get the permanent implant, which I did the first week of January in 2018. After the surgical pain went away, I was still experiencing a great amount of pain in my chest where the battery was placed. My surgeon played it off as me not having enough fat, so the muscle was getting irritated by the battery anytime I moved my arm, as it was rubbing against my muscle. This actually turned out not to be the case. Instead, I learned I had an internal infection.

In late February, the infection finally made its way to the surface. In March (during my spring break), we had a ‘clean out surgery’ to try to save the device. I stayed in the hospital overnight for IV antibiotics and left with a lovely drain tube that I ended up having for four days. I also was put on two types of oral antibiotics for sixty days. I took these twice a day, and twice a day I would get severely nauseated, and most of the time ended up vomiting. These antibiotics, however, were the best option for the strain of MSSA infection that I had, so my surgeon basically told me to ‘power through.’

Two weeks after I stopped the sixty-day antibiotic protocol, I had pus gush out of one of my surgical sites. I ended up having emergency surgery the following day. It was June of 2018 at this time, and of course, I decided to take a college class, so I was still incredibly busy between that and work. I stayed in the hospital overnight again for IV antibiotics and also got an IV antibiotic infusion five days after surgery at an outpatient infusion center. This was definitely the low point in my health journey.

About one month after my surgical explant fiasco, I started having what we now know is Trigeminal Neuralgia (TN) pain. There is no compression on my trigeminal nerves, so surgery isn’t an option for me. TN is the disease that impacts me the most. According to Mayo Clinic, TN is a rare chronic pain condition that affects the trigeminal nerve. Personally, I experience TN on both sides of my face and in the bottom two branches, which is basically the area of the face from the eyes to the chin. I have difficulty moving my mouth without pain so eating has been my greatest challenge. The weather, including barometric pressure, or the physical heat from the sun, cold air in the winter, the wind touching my face, or precipitation touching my face is also super painful. Luckily, I discovered face shields, which help me a great deal when outside.

My other triggers include brushing my teeth, showering (particularly washing my face), cooking, exercise, talking, smiling, and/or anything that involves touching my face, really. When any of these occur, I have a variety of symptoms, which include the sensation of burning, pressure, and zaps. The burning feels as if I was pressing my cheek on a stove burner turned on high. The pressure feels like a cow stomped on my cheeks. The zapping feels like what I imagine being struck by lightning or electrocuted feels like. They stop me in my tracks: I am not able to talk. They last anywhere from ten seconds to five minutes depending on the flare. The burning and pressure sensations tend to be more constant. They are always there to some degree, but often increase in severity as the day goes on. TN is even known as ‘the suicide disease’ because it is so debilitating.

Through all of this, I am beyond thankful for my parents, boyfriend, and friends who have stuck by me through it all. Before COVID times, my mom would go with me to most appointments. My boyfriend and I at the time had only been dating for two months before my explant emergency surgery for the stimulator, and when I told him the news, he packed, jumped in the car, and headed my way. He has also given me one of his dogs, Callie. She was the biggest blessing of 2020. She somehow knows not to lick my face and is the best emotional support animal I could ever ask for. My mom and dad are always just a phone call away and will drop whatever they’re doing if I need them. I know that so many chronically ill individuals do not have a good support system, so I am extremely blessed to have these people in my life. I have also met so many ‘spoonie’ friends along the way who ‘just get it,’ which is super refreshing. I actually lived with a good friend that I met at college who had all of the same health issues that I do. It was definitely a blessing in disguise. I know we couldn’t have gotten through college without each other.

Because of my past with doctors not believing in my pain or not taking me seriously because I’m so young, or those who doubted me in general, I decided to become a social worker. I am currently at the University of Texas in Arlington’s Masters of Social Work program. I am scheduled to graduate in December of 2021. I had to learn to advocate for myself in order to get the medical care I deserved and knew was out there. I realize not everyone is comfortable or capable of doing this, which is what made me want to pursue social work. I firmly believe that being chronically ill myself will give me a unique relationship with my clients because, on some level, I will actually understand what they are going through compared to the general client-professional relationship. While I could definitely have chosen to give up, I am pleased I chose to do good. It gives my pain and suffering a purpose: to help others.

While I could definitely ramble on about different advice topics all day, most of them come down to advocating for yourself. If you are ever in a situation where you feel like your doctor is either not listening to you or if you feel as though they do not genuinely care about you, do not be afraid to fire them. At the end of the day, your medical provider works for you. If you are unhappy, find a provider who works well with you. I often struggle finding good providers because I have a complicated case, but I assure you that it is possible and the struggle and exhaustion are worth it once you find the right one.

I also recommend seeing a pain psychologist if you are in denial about your diagnosis or if you are struggling to accept it. Furthermore, while the pain psychologist could definitely get down to the root cause in a professional way, chronic illness or mindset coaches, like myself, are also a good option. We know what you are going through and it makes the rapport better, in my opinion. My final advice is to not let others tell you that you cannot do something because you are disabled or have a chronic condition. Personally, I went to 150 doctor appointments over the course of the 3.5 years I attended my undergraduate college. I had many people tell me that I was out of my mind and too sick to attend college, but I proved them wrong and graduated with honors. With the appropriate accommodations, time management skills, and healthcare providers, achieving your goal — whatever that happens to be — is possible.”