No one knows of CVST, feeling alone

Hello, I’m Cheryl. A 46 yr old from smalltown PA. Last June I was planning on having my first summer off as a school district Paraprofessional! So much fun to be had!! Then, one evening, I started to not feel well. Headache. Took some Advil, didn’t work. Then some medication I had left over from a toothache. I started getting the sweats, tunnel vision, the headache had gotten so much worse, I was Vomitting. I thought I had overdosed myself. In the middle of the night I drove to the hospital, about a 5 minute drive. They did a CT Scan & MRI. Pumped me with morphine and sent me home. Problem was, I wasn’t better. I lied in pain for 3 days before going to a Neurologist. I kept a sleep mask on for those 3 days, walked into the office with it on (my husband drove me). They wanted to do a hunch of test; spinal tap, MRI, MRA, MRV, CT Scan. The next day. So, home we went, which made me sick to my stomach each car ride. The next day, when I went in for the test, I was still in the mask. The smells and noise of the hospital were overwhelming. I started becoming sicker, vomiting, shaking, my head felt like it was going to explode. It hurt so badly, the front of my head and base of my neck/head. I sat in the ER for 12 hours as they ran the test that they could, as I just couldn’t stay still due to the pain. I don’t remember half of it, or most of the next few days. They found that I had a CVST-Cerebral Venous Sinus Thrombosis. Blood clots in the brain. They were in many areas, which was the reason for the pain in different areas. I was in the hospital for 8 days, on so much pain medication. They put me on Coumadin, as with the clots being in my brain, they wanted to make sure they could stop any unforseen bleeding issues. This is the only blood thinner you can reverse, but it takes the longest for healing. Once home, I started having issues again. Walking with a lean, blackouts when standing, slurred speech. I was readmitted for another 3 days with a small brain hemorrhage due to the Coumadin being to high…Move forward. I was recovered from the blood clots in 6 months. Off the Coumadin (although that was a nightmare 6 months). I have side effects from my brain clot trauma; headaches daily, vision issues, memory issues, aphasia, hand tremors, depression. This has been the longest year of my life. No one can understand where I’m at or what I’m going through. My kids have told me my brain is broken, we laugh but behind close doors, I cry. You look at me, you see a normal women. Smiling, living life. You would never guess there is something amiss. This is a rare condition. 1 in 1,000,000,000 actually. I was told by my doctor I had a chance of .0000009% of having this happen to me. I drew the lucky number…anyhow. Sorry this is so long. Just nice to get it all out and share it with others who might understand. Oh, and if you’re into documentaries, A Beautiful Broken Brain is a wonderful one, which I can truly relate to. She has gone through similar circumstances, though far worse than I. You might enjoy it too. Thank you for listening. :purple_heart:

Cheryl I’ve worked in a pharmacy for 15 years, with that in mind as you stabilize keep in mind that there’s a certain percentage of people who are basically (and for lack of a better turn) genetically immune to coumadin. For some reason it simply doesn’t work well for them, if at all.

If you’re not getting what you need from that medication do some research and talk to your doctor about switching. New drugs include things like rivaroxaban (Xarelto), dabigatran etexilate (Pradaxa) and apixaban (Eliquis).

Good luck!


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Hey Cheryl,
WOW, what a year. Not the sort of thing you’d wish on anyone. I completely understand the laughing publicly but crying behind doors scenario. It can all be rather confronting to say the least. When I was officially diagnosed with a brain issue it was all a bit of a blur. After the first surgery I was told ‘All fixed’, I disagreed but they reassured me it was all recovery pain. Turns out it wasn’t, then when they said they had to operate again I was a bit of a mess. I had a bit of confusion I spose in that, my pain was real but further surgery meant more pain, certainly not my wish. I left the dr’s surgery and went to the beach to try and sort my thoughts out. The reality of it was this was all out of my control and for me, being a control freak, this was very unsettling. I put on my ‘big boy face’ in public, all was fine, but internally I was a bloody mess. Like you, ‘You look at me, you see a normal’ but things were far from ‘normal’ and for me I think this has been one of the hardest things to deal with.

Just know that we do understand and we are here if you need to chat.

Hope to see you around
Merl from the Moderator Support Team