Autopilot Failure - My Journey to My Gastroparesis Diagnosis
It was November 2009. I was a junior in high school. I played flute and piccolo in my high school's marching band. After winning three consecutive state titles and 2 consecutive Super Regional titles, our marching band had been invited to compete at the Bands of America Grand Nationals competition in Indianapolis, Indiana. It was the culmination of years of hard work, and an incredible experience to get to compete at the national level.
Despite the excitement of that experience, it ended up being overshadowed because my first intractable migraine attack began after our performance in the finals of Grand Nationals. I blacked out, fainted, and when I came to, I was dealing with head pain, nausea, fatigue, soreness, light sensitivity and sound sensitivity. That migraine attack lasted for 93 days of my junior year, and shifted my migraine disease state from chronic to status migrainosus for the first time. Lasting from Thanksgiving through spring break, this migraine attack triggered frequent vomiting, issues with my medications not working effectively, and weight loss, which drove me to seek care for those issues in an attempt to improve quality of life while navigating this change in migraine disease state. During this attack, I was quickly learning how detrimental gastric issues could be to my health.
By January 2010, I was dealing with nausea, reflux, bloating, and vomiting after most meals. I was sick so frequently, that my teachers and classmates had become so accustomed to me having to run to the bathrooms in the middle of classes because of nausea or vomiting, that no one even turned their head when I would return to the classroom. Often, there was not any time to get to the nurse’s office, and even if I could get there, she typically was not able to help me. Sitting on the floor in the girl’s bathroom, I would be sick to my stomach until there was nothing left. Eventually, my symptoms progressed from nausea and vomiting, to bloating and always feeling full, to reflux, to issues with chronically dehydration, an increase in fainting and dizziness, to stomach pain after eating or drinking, and eventually even dealing with vitamin deficiencies and signs of malnourishment. Despite utilizing abortive medication, the nausea and vomiting persisted. My neurologist recommended that I see a gastroenterologist. My mother and I agreed that this was a logical next step.
After waiting for the next available new patient appointment, we were finally sitting in the waiting room. I was holding my mom's hand when a nurse stuck her head out from behind the doorway.
“Pearson? Katelyn Pearson?”, she said.
After a deep breath, my mom and I stood up, and followed the nurse back. I was seated in a clean, bright patient room while we waited to see the doctor. A few minutes later, a female doctor and a long maxi skirt and flowing shirt swished into the room. We spent some time discussing my current nausea medication, and how I was utilizing them. We talked about my symptom progression. We discussed my other health issues. The appointment went awful. She was impolite and dismissive. Years later, I learned that that particular doctor had tried to convince my mother that I was bulimic, and I was making myself sick because I didn't look like I was in pain.
Over the years, I’ve heard similar stories from other patients, and I am so grateful that my parents trusted me enough to not believe this doctor. I cannot imagine how different my life would be today if my parents had to leave that first G.I. doctor all of those years ago. I think that I would be in a much worse state than I am now without their trust and support.
A few months later we arrived at another doctor's office for a second opinion. We waited anxiously in a new waiting room. From the waiting room to the patient room, the vibe of this office was already more peaceful, accepting and understanding than the first doctor that we have seen. We went over my current medications, other diagnoses, and my symptoms with yet another nurse and doctor. Both the nurse and the doctor were more understanding and empathic. We discussed my limited access to nausea medications. Based on my symptoms, my new doctor talked with us about a condition called cyclical vomiting syndrome, and devised a treatment plan of utilizing abortive nausea medications that were already somewhat helpful for me as a scheduled medication instead. After I spent nearly a week taking Zofran every few hours, as scheduled by my doctor, my frequency of vomiting episodes had greatly diminished. I was incredibly grateful.
Once the cyclical vomiting syndrome(CVS) was back under control, I was scheduled for a couple more tests in the hope of finding an underlying cause for the CVS. I had an endoscopy, imaging, and bloodwork to get the best sense of what was happening to me. The testing was able to rule out some chronic digestive diseases, such as Crohn’s disease, celiac's disease, and others, while they looked for a cause. However, at the end of the day, there was not a physical cause identified in my imaging or test, so my doctor suggested that it was most likely connected to my GERD and migraines.
After a round of anti-emetics, my cyclical vomiting syndrome flare eased up, and we put a plan in place in case it would happen again. My endoscopy also showed us that I was dealing with Gerd and a hiatal hernia. Some time during the testing, my neurologist was able to break my intractable migraine. My gastroenterologist explained that maintaining my new GERD medication and maintaining control of my migraine disease would be critical to reducing the risk of relapse of my cyclical vomiting syndrome.
At this point in time, my diagnostic journey stopped at the cyclical vomiting syndrome diagnosis despite my symptoms that existed between flare-ups. For about the next six years, I was able to maintain my migraine disease state at chronic. I was successfully utilizing dietary changes, and medication to reduce the risk of having a relapse of cyclical vomiting syndrome. For quite a few years these management strategies were mostly effective, but nothing I did seemed to be able to resolve all of my symptoms.
In 2015, my migraine disease state worsened and I relapsed into status migrainosus. When my migraine disease state returned to status migrainosus, my symptoms quickly worsened. After a couple years of exhausting all local providers, I was referred to the Diamond Headache Clinic in Chicago to receive more specialized care.
While I was inpatient for care at St. Joseph’s Hospital receiving care for the migraine attack that has been ongoing since 2015, my headache specialist set it up for me to meet an eastern medicine doctor who specializes in holistic pain management. Her goal was for me to learn about acupuncture and other eastern medicine techniques for pain management. However, after a thorough evaluation, the doctor raised concerns about a coupe of diagnoses that may have been overlooked during my journey to wellness. He performed the beighton scale, and asked a lot of questions about my other symptoms. Upon learning that I would faint or get dizzy upon standing, my chronic nausea, my head pain, and issues with frequent injuries. He took his notes back to my headache specialist, and a within a couple of days, they were ordering further testing and consults while I was inpatient. It was during that visit in 2017 that we learned a lot about my body and its overall health.
By the time I was discharged, I had received a clinical diagnosis of Ehlers Danlos Syndrome, had "failed" a tilt table test and was diagnosed with Positional Orthostatic Tachycardia Syndrome, and was given a list of other possible conditions and referrals to help me to be evaluated for them. These diagnoses were not only helpful in giving me a better understanding of my health, but they also helped us to know that there were other pieces of the puzzle that were still missing. When I was discharged to head back to Texas, I had a stack of referrals in hand and I went to work getting scheduled with additional specialists in 2017 and 2018.
In early 2018, I saw an electrocardiologist who is an expert in POTS and dysautonomia. Although his office was a disaster, and our experience with his clinic was not ideal, their testing was thorough and helpful in identifying and understanding the impact of the autonomic nervous system on my body as a whole. As I have explained in another post, the autonomic nervous system is essentially your body's autopilot. It manages the body's breathing, blood pressure, heart rate, body temperature, digestion, and more. It takes care of all of the things that you don’t have to think about doing. However, when issues with the autonomic nervous system, such as POTS(positional orthostatic tachycardia symptom), were discovered, my doctor recognized that it can mean that other autonomic dysfunction are also occurring. For me, this was the case.
That electrocardiologist had me get a gastric emptying study done to assess for delayed stomach emptying. We found out that my stomach emptying was severely delayed, and I was finally diagnosed with gastroparesis. My gastroparesis diagnosis took years to get and was a journey full of twist and turns that meant years of testing, misdiagnosis, partial diagnosis, a long list of attempted medication, and a laundry list of doctors. Obtaining my diagnosis was more like trying to untie a knot in your favorite necklace or unravel a box of lanyards before an event, then it was like putting together a puzzle. The journey taught me a lot about effectively communicating with the medical community, advocating for myself, and the importance of family support well on my journey to a new diagnosis. This new diagnosis not only empowered me with more treatment options, helped to put more of the pieces of the puzzle together, get a clear picture of my health, and gave me access to more accommodations to help me find success on my path through this life.
I will keep sharing about gastroparesis each August in case there is someone else out there like me who is struggling with these symptoms, but may not know what their next steps could be or may feel like they're alone in this journey. Although gastroparesis is a rare disease, our community is strong and here to support you if you're seeking a diagnosis, newly diagnosed, or feeling like your current provider or regimen is not working for you. You deserve the best care.
If you want to learn more about gastroparesis, please visit:
https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792
https://my.clevelandclinic.org/health/diseases/15522-gastroparesis
https://rarediseases.org/rare-diseases/gastroparesis/
To find support, please visit:
https://g-pact.org/g-pact-communities/
Or search for local Facebook groups