I was in my early 30s and enjoying life as a new mom, but I had been having a rough time for nine weeks, experiencing severe headaches and aphasia. I was worked up by a neurologist thoroughly and had all kinds of tests and scans — an MRI, MRA, an EEG — and everything was clear.
I was sent to see a pain management physician, who diagnosed me with occipital neuralgia and scheduled me for a nerve block.
Days before my scheduled procedure, I was home with my family and feeling especially unwell. After asking my then-husband to watch the baby, I stood to go take a nap. In a matter of seconds, I collapsed to the floor in agony, experiencing the worst headache of my life. As I held my head and grit my teeth in confusion, I felt sure that I was going to die.
Despite available medical records of my journey and a description of my emergency situation, my trip to the ER was not very eventful. I was pushed off as an anxious woman with a migraine, sometimes an unfortunate event that happens to women and demonstrates further reason for us to advocate for ourselves. I was offered a Tylenol.
After much insistence that something was very wrong, a CT with contrast and an MR venogram were performed. I had a massive cerebral venous sinus thrombosis (CVST) blood clot in the venous system of my brain (a form of stroke), part of which had fully occluded. I was given morphine and rushed to the neuro ICU.
In time, I came to learn that I had a common genetic mutation called Factor II (or prothrombin). I had also been taking estrogen-containing birth control without knowing my risk factors. Ultimately, I was also diagnosed with antiphospholipid syndrome, which is an autoimmune clotting disorder, and placed on blood thinners for life.
The most memorable part of my journey was the moment I was reunited with my then two-year-old daughter. I can’t imagine my life without her.
Now I take in every moment and appreciate the present. I’m aware that life is a gift and that it’s fragile. I keep myself moving, lowered my BMI, and took steps to reduce my risk-factors however possible. It was truly an eye opening experience. It was surreal.
It’s important to listen to your gut, to advocate for yourself, and be informed of your family history and risk factors. NBCA keeps me cognizant of this and reminds me of how lucky I am.
