Finding my migraine diagnosis through a forest of gaslighting
Congressional District: MA01
Chronic Pain, Migraine, Neurological Disease
Issues and Challenges
Megan has encountered: Access to Expert Providers, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Gaslighting, Invisible Illness, Medical Discrimination
In the Spring of 2011, I had my first migraine attack. I was fifteen at the time, and aside from the occasional flu, I didn’t go to the doctor’s much. I had been with the same pediatrician since I was an infant, and was used to a quick, easy, and pleasant experience with doctors. That all changed after I was diagnosed with migraine.
By the Winter of 2011, I was having monthly migraine attacks. My pediatrician referred me to a neurologist within his network. The neurologist took one look at me, saw a teenage girl with tough-to-treat migraine attacks, and blamed my hormones. There was no correlation between my menstrual cycle and the timing of my migraine attacks, but that didn’t matter to him. Instead of treating me like an individual patient with unique symptoms, he stereotyped me, and only offered treatments that were hormone related - like birth control.
I moved on to another neurologist, hopeful that this one would treat me with more respect. I waited months to get a CT scan of my head, only to hear, “there’s nothing physically wrong with you, it’s all in your head, go see a psychiatrist”. How could a quick look at a CT scan prove my pain wasn’t real? I began to realize just how common medical gaslighting was. Looking back on it though, I could have never prepared myself for the impact it would make on my life.
As the years went on, having my pain dismissed by doctors became a part of my routine. When I was in college, I moved on from neurologists, and was evaluated by headache specialists. I didn’t respond to most oral medications, and treatments such as Botox only seemed to exacerbate my pain. I started to question whether migraine was even the correct diagnosis. I wanted to explore other options, but it was like pulling teeth to get my doctors to agree to it. My migraine attacks were lasting 40-60 days at this point, and I was always being sent to the emergency room by my treating physicians. In the emergency room, I would be accused of faking my symptoms to get access to opioids. They would force me to sit through a forty-minute head MRI with nothing but Tylenol in my system. I would wait around for hours just to be told that there was nothing on my MRI to indicate that I was in pain, and that I needed to follow up with my doctor during regular business hours.
I went misdiagnosed for eight years due to medical gaslighting. I was treated like a migraine patient, but among the dozens of doctors I saw, not a single one noticed that my chronic headache condition was actually the result of nerve damage. In 2019, after years of advocating for myself, and begging my doctors to take me seriously, I was able to find my correct diagnosis through a Facebook post. A mother posted about her daughter’s struggle with chronic migraine, and shared about a treatment that gave her daughter her quality of life back.
By finding that post, I was able to find my correct diagnosis, which led to finding the right doctor, and the right treatment options for me. I was diagnosed with both occipital neuralgia, and trigeminal neuralgia by Dr. Ziv Peled in San Francisco, CA. Dr. Peled performed two nerve decompression surgeries on me, and although it wasn’t a quick fix, it finally meant that my condition was being treated properly.
If you’re interested in reading more of my story, you can find me on Instagram @itisnotinyourhead. While you’re there, be sure to check out my Reels focused on the dangers of medical gaslighting.
My Motivation and Inspiration
I am motivated by the incredible chronic illness community on social media! I share my personal experience with medical gaslighting so that others with similar experiences can feel seen in their struggles. Check out my medical gaslighting Reels on Instagram @itisnotinyourhead