Chronic CVST

Hi just a little over two years ago I went to the hospital for a dental infection and the found three blood clots in my brain. The transverse sinus, the sigmoid sinus and the internal jugular vein. I was on warfarin for over a year after an arteriorgram (because for the whole year I just progressively got worse other organs affected). I was to the jugular vein was now occluded at the jugular bulb and basically the clot has incapsulated into scar tissue and it was never going away. In the mean time ai could write a page of all the things that are now wrong most recently diagnosed with empty sella, cerebral spinal fluid builds up and comes out my nose randomly, the headaches are horrible I’m losing my vision and my hearing on the one side and I have optic nerve compression and an arterial blockage and I’ve been waiting for Three weeks for my neurologist to respond to my messages. It’s a horrible situation to be in but I’m glad to have joined to know I’m not alone. This has forever changed my life as I am sure it has yours too.

Hi Everyone,
I got diagnosed with a blood clot in my dural sinus vein (CVST) right behind my ear. Did not have a stroke or any bleeding. My only symptoms are ENT related - hearing distortions, sensitivity to loud sounds, thumping and fluttering. Since I've been on blood thinners for 2 months, the distortions and sensitivity have improved quite a bit where they no longer bother me. But the ear fluttering and thumping (and sometimes irregular whooshing sounds) still persist. It's happens periodically throughout the day and in the mornings when i wake up.
I take vitamin (C, B12, D), magnesium and Potassium. The magnesium seems to help a bit.
Has anyone experienced these type of sensations as a result of a blood clot? Did anyone's symptoms improve or go away over time? Any insight would be greatly helpful and appreciated. Thank you.

Hi, @jacoblamb. Welcome to Mayo Clinic Connect. I moved your question to this discussion, where you can receive input from others who've experienced CVST, like @fowler0822, @jprenewed78, @gtownsend, and @egee19, or who have shared something related to a blood clot in the brain, like @denzie and @maryfrances91.

You mentioned when you wake up is a time where you experience ear fluttering and thumping, and sometimes irregular whooshing sounds. Are you noticing any other patterns for when you experience these symptoms?

Hi LIsa,

Thank you. During the day, it occurs sporadically but it's usually when it's quiet. It's hard to explain. I've spoken to other CVST people who've had similar symptoms. My clot happens to be right behind my ear.

I don't have pulsatile whooshing.

Thank you.

Dizziness, headache and balance issues.

Did you also have CVST? How is your recovery going?

Yes. And the clot is still in my brain. It was 4.5 years ago that I had the first stroke. It's been rough . How about you?

I was diagnosed 8 weeks ago. Partial clot (25%) of transverse, sigmoid, and jugular. I caught it early. On Pradaxa blood thinner now.

Main symptoms are my ear symptoms. I did have strange feelings in my right arm and leg before diagnosis but that has gone away. I also had head tension and ear fullness which also went away.

So i'm left with these strange ear symptoms. No real pain for me. I should be happy as i know many CVST people suffer from lots of headaches and other symptoms. But it's still hard. I"m also struggling with anxiety.

How about you? Where was your clot and how big was it?

I had a wicked migraine and earache for a week and then collapsed and was unconscious for 8 hours and woke up having a major stroke and seizure. Went to the ER and they found three clots in my left vein blocking 78% and it was during Covid so was admitted and then had another stroke where they combined into one big clot blocking 85% and were going to do surgery but due to Covid and the hospital being over packed they couldn't and decided to manage with meds. I was on blood thinners, anti pressure meds, and like 9 others I can't recall for about 3 years. Clot went down to 73% and that's where it's stayed. I get migraines, mini strokes and partial onset seizures still.

I'm so sorry you had to go through that. I hope you have a lot of support around you.

Do you know what caused your blockage?