CVST
Many Doctors Aren’t Familiar with CVST: Abigail’s Story
I woke up one morning with the worst headache of my life. I immediately thought it was a migraine because my mom suffers from them. I had also been sick for weeks before, so I thought it could have been from that. So I popped a couple of ibuprofen and went to work. It never…
My Diagnosis Was Cortical Venous Thrombosis in the Vein of Labbe: Oscar’s Story
My blood clot experience started with an intense fever and headache that lasted five days before I was hospitalized. On July 26, 2023, I was leading a work call when I suddenly became unable to pronounce the words on my computer screen. My girlfriend and our housemate took me to the emergency room, and as…
I Had Three Large Blood Clots in my Brain: Jessica’s Story
In November 2016, I was at a wedding when my head started hurting. I took Tylenol, but it wouldn’t go away. In fact, it was getting worse. A couple of days later, my head hurt when I tried to turn, and I started getting pain behind my right eye and down the right side of…
I Started Losing My Vision: Lydia’s Story
June 2021 was the month my life was flipped upside down. I started experiencing intense pressure in my head and a sharp pain in my neck and shoulder that radiated down my arm. I visited my primary care doctor and an urgent care center, where I was prescribed muscle relaxers, a steroid, and was set…
The Last Thing I Remember Was Trying to Say, ‘Help me:’ Heather’s Story
My blood clot story started at a time that should’ve been the happiest of our lives — we had just become a family of four! A few days after giving birth to our second child, I developed a severe headache. Unfortunately, at the ER, I was misdiagnosed and treated for post-partum pre-eclampsia. After a few…
I Had a Blood Clot in my Brain: Jacarra’s Story
In April 2019, I began to experience symptoms similar to a sinus infection, including frontal head and eye pressure. Over the next few weeks my symptoms worsened, and they developed into nausea, weakness on one side of my body, confusion, loss of appetite, and the most prominent indication —the worst headache of my life! A…
I Was Dismissed Twice at the ER: Erin’s Story
On November 4, 2021, at the age of 27, I started experiencing pain in my neck that shot up through my head. I figured it was just pulled a muscle, but for the next three days the pain got worse. On November 8, four days after the pain started, I decided to go to urgent…
Mamas Get Blood Clots Too: Justine’s story
I had my first blood clot when I was 24 years old after ACL reconstruction surgery — a risk factor for blood clots that I was unaware of. After my surgery, I noticed that my arm was warm, swollen, and red, all signs of blood clots. I knew something was off, and decided to go…
The Emotional Toll Has Been Challenging: Jenna’s Story
In September 2020, at the age of 24 and in good health, one week away from graduating with my master’s degree, I nearly lost my life. I woke up one day with a headache slightly worse than normal. Over a week, things got worse until I was in more pain than I had ever experienced…
Trusting My Body When It Was in Trouble: Katie’s Story
In December 2016, my life felt as full as it could get. I had six kids ranging in age from 1 year old to 12 years old, a busy freelance writing career, and involvement in various community organizations, including a parent advocacy group I had helped form a year before. Yet, my concept of “busy”…
