A 5 in a Million Diagnosis
Just before Christmas in 2024, I was making my dinner.
When I stood up from bending down at the dishwasher, I felt a sudden shock go down my head and neck — and instantly heard whooshing in my ears, which I now know is pulsatile tinnitus.
I shrugged it off as having pulled something.
Things Started to Get Worse
Over the next few days, a thunderclap headache began.
Regular vomiting followed.
I managed to get back to my parents’ house for Christmas before things deteriorated further.
I started to experience double vision.
I could barely keep my neck up due to the pain of the increased pressure in my head.
Dismissed — Then Caught
After being brushed off initially at the ER with antibiotics for an ear infection, once they knew my vision was deteriorating, they did a CT scan.
To my surprise, they told me that over half the veins in my brain were completely occluded with clots.
I was diagnosed with CVST — a 5 in a million diagnosis.
Recovery
Due to the amount of pressure in my brain pressing on my optic nerves, my sight continued to deteriorate for a few months until the blood thinners started to break up the clots.
Happy to say I live a relatively normal life now and my vision has recovered.
I have since found out I’m Protein C deficient — so I will be on blood thinners for the rest of my life.
What I’ve Learned
It’s made me realize that life is short and anything could happen at any time.
Patient stories helped me feel validated.
What I Want Others to Know
If anything feels off, it likely is.
Keep pushing for a diagnosis and look out for the warning signs.
Live your life freely.
