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CVST

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,…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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If I Had Waited One More Day, I Wouldn’t Be Here: Heather’s Story

Last March, I had turned 35 exactly a week before my traumatic discovery. I had a terrible, terrible, headache. I knew that after a few days of having this head pain, something wasn’t right. I was flown out of my local emergency room to a stroke center, where I was told I had two brain…

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