CVST
When a Headache Turns Serious: Jenna’s Story
On April 19, 2025, I began experiencing what I thought was a sinus headache—something I would normally treat with Tylenol Sinus. But this time, the medication didn’t work. The pressure in the front of my head wouldn’t go away, and it lasted for days. By the evening of April 22nd, I was still dealing with…
Fight For Yourself: Sarah’s Story
After two long months of debilitating headaches and vision problems, I was finally diagnosed in July 2025 with a cerebral venous sinus thrombosis (CVST), a rare and dangerous clot in the veins that drain the brain, at 24 years old. My first ER trip was in May, when I showed up with stabbing head, neck,…
If You Feel Like Something is Wrong, Please Advocate for Yourself: Nicole’s Story
On October 27, 2024, I was diagnosed with cerebral venous sinus thrombosis (CVST). There was a large blood clot taking up the transverse and sigmoid portion of the venous sinus of my brain. I am still dealing with some neurological deficits. My symptoms started while I was working. Looking at the computer screen, numbers and…
I’m Living My Days to the Fullest: Elizabeth’s Story
In my twenties, I developed a pain in my calf that was extremely uncomfortable. I couldn’t put my foot on the ground to walk. My dad had DVTs a few years before and told me to go to the hospital. At the hospital, I was given an anticoagulant and sent for a scan the next…
This Experience Cracked my Heart Open: Diane’s Story
I’m a single, 62-year-old woman and in June 2024, I was diagnosed with cerebral venous sinus thrombosis. This came out of nowhere. I had been feeling down and unwell for a couple of days. I thought it was mostly dehydration. I was able to work from home and was typing on my laptop when noticed…
Never Ignore What Your Body Is Telling You: Annastasia’s Story
On May 6, 2024, I was admitted to the hospital to give birth to my little rainbow baby. I had planned a natural birth, but complications meant an emergency C-section. I was terrified and unprepared. Surgery went well, but hours later I developed a severe headache. My doctors said it could be spinal leakage. I…
Fight For Yourself Until You Get an Answer That Makes Sense: Kristina’s Story
My story began in late 2018. I was on oral birth control for a few weeks in October 2018 and stopped as it caused mental health symptoms. A short time later, I experienced sudden increases in heart rate every time I got up to move, and progressed to sudden shortness of breath and a feeling…
My Diagnosis Took Away the Excitement of My Pregnancy: Emmy’s Story
I was 13 weeks pregnant when I experienced an awful headache while at work. I went home and spent the evening in a dark room. When I awoke, my head still ached, but it was manageable. Over the next week, I began having headaches and nausea throughout the day, so I contacted my midwife. She…
My CVST Was Caught Just In Time: Naomi’s Story
I had my beautiful baby boy on August 26, 2023. I had a low-risk pregnancy and a water birth with no complications. At 2.5 weeks postpartum, I began to get a headache that I assumed was from sleep deprivation. As a migraine sufferer, I am used to severe headaches and had not been on my…
Life is a Gift and it’s Fragile: Cara’s Story
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…
