The first time I experienced an excruciating headache on the left side of my head, it was scary and unbearable, but I refused to go to the hospital. When it progressed to me becoming unresponsive multiple times, not being able to really move the right side of my body, being numb, tingly, nauseous, and more, I had 911 called on me, as it happened in the college library. I tried to fight the paramedics about going to the hospital. I wanted to sign a refusal and just go back to my apartment. Because I was confused, I was not mentally component to make such a decision. They accused me of faking it all, “because if I actually went unconscious, I would have fallen out of my wheelchair.”, according to a witness.
As it turns out, my blood pressure was pretty low, especially when I sat up or attempted to stand, which is a classic symptom of vasovagal syncope; a condition I have a history of in the past from a very young age. At the hospital, the neurologists would insist, "Squeeze harder. Push harder.", when assessing my strength, even though I was giving it my all. I told them that and they rolled their eyes. It was clear to me that they didn’t want anything to do with me.
Eventually, I was diagnosed with migraines with aura and a functional neurological disorder. In short, the symptoms I was experiencing were in my head, but the migraines are very real. Doctors love to stick labels on patients, such as functional neurological disorder (FND) when they don’t fully understand what is going on. Ironically, migraines with aura fits the whole picture perfectly except for one symptom, but I was still told to see a psychiatrist and psychologist because of this FND I apparently have now.
While stress is known to exacerbate any and all medical problems, as proven by science, it is dangerous to blame everything as stress. I would hate to be that doctor going through a medical malpractice suit because he missed something serious, but treatable and the patient had a poor outcome.
I was told that maybe I didn't handle stress as well as everyone thought I did which was a crushing blow to my fragile mental state at the time. I have been working on perfecting biofeedback, deep breathing, mindfulness, stretching, exercising, and more to manage pain and stress. Initially, I was embarrassed to admit it. I felt like it was my fault; that I should be able to control it. I am still struggling with this FND diagnosis, especially because I know that the symptoms only come when I get that bad headache.
For those living with a functional neurological disorder or some other disorder doctors insist are all in your head, I encourage you to never, ever give up. I know this is hard when people don't believe your symptoms, but keep the faith. It has to get better someday.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!