1. < Stroke & Cerebrovascular Diseases

Chronic CVST

Posted by jprenewed78 @jprenewed78, May 10, 2023

Hi, 3 years ago I had a stroke and they found 3 blood clots in my brain. In the ICU I had another stroke and the three combined to one clot. I have recently been told the clot isn’t going away and that I’ll have to live with seizures and mini strokes. I’ve been on blood thinners and many other meds that calm the seizures but nothing is working to dissolve the clot. I’ve been told that surgery isn’t a safe option. Anyone else have anything similar? I’m feeling really alone with this

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jprenewed78 | @jprenewed78 | Nov 19 6:05pm

Thank you. I had support. They think being on the pill for so long.

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jacoblamb | @jacoblamb | Nov 19 6:12pm

Hi. I read one of your posts back from May. Did you get another opinion regarding your clots? If you haven't, i would seek advice from top doctors in your area. You may need to travel if you're not near a big city. If you're struggling, you should do everything to advocate for yourself.

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1 reply
jprenewed78 | @jprenewed78 | Nov 20 8:29am
In reply to @jacoblamb "Hi. I read one of your posts back from May. Did you get another opinion regarding..." + (show)
@jacoblamb

Hi. I read one of your posts back from May. Did you get another opinion regarding your clots? If you haven't, i would seek advice from top doctors in your area. You may need to travel if you're not near a big city. If you're struggling, you should do everything to advocate for yourself.

Jump to this post

Thank you. I was in Wichita Kansas and did have to advocate for myself a lot. I have since moved home to Colorado and still advocate and they have seen the same thing with the clot. I have applied to disability but was denied and have appealed. Apparently I am too disabled to keep/get a job and not enough for support from the government. It is hard. The strokes have left me with my executive functioning skills and have PTSD, OCD, anxiety, depression and a slew of other diagnoses from this. Thank you for listening. I am trying to stay positive and want to believe that I made it this far for a reason- some weeks are just harder than others.

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1 reply
jacoblamb | @jacoblamb | Nov 20 11:10am
In reply to @jprenewed78 "Thank you. I was in Wichita Kansas and did have to advocate for myself a lot...." + (show)
@jprenewed78

Thank you. I was in Wichita Kansas and did have to advocate for myself a lot. I have since moved home to Colorado and still advocate and they have seen the same thing with the clot. I have applied to disability but was denied and have appealed. Apparently I am too disabled to keep/get a job and not enough for support from the government. It is hard. The strokes have left me with my executive functioning skills and have PTSD, OCD, anxiety, depression and a slew of other diagnoses from this. Thank you for listening. I am trying to stay positive and want to believe that I made it this far for a reason- some weeks are just harder than others.

Jump to this post

Have you joined the FB CVST page? If not, i think you'll find some valuable resources and insight from others. I believe there are a couple thousand people in the group. There are many people that recovered ....some later than others. I've read some posts where people finally felt "normal" after several years. So keep hope alive.

I also suffer from anxiety right now but i think that's common among us. Hopefully you're getting treatment for that b/c that might be the first step for you to start getting better. The mind is very strong. Right now, my mind is also weak so it's a struggle but i'm fighting every day.

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bextruelove | @bextruelove | Nov 28 9:12am
In reply to @jacoblamb "Hi Everyone, I got diagnosed with a blood clot in my dural sinus vein (CVST) right..." + (show)
@jacoblamb

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.

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Hi,
I had an ischemic stroke in ‘23. It was caused by a clot in my brain stem. Thank God it was mild, generally speaking. This past August I experienced heart issues and I was diagnosed with an arrhythmia. I am currently taking a statin, aspirin, magnesium, and flecainide to address these issues. About 2 weeks ago I started hearing/getting the whooping, thumping noise in my right ear. Like you, only happens a few times throughout the day. I looked up what it is, pulsatile tinnitus. Have no clue why it’s happening. It’s not accompanied by headaches of dizziness. Very recently, after my last “episode” with a racing heart rate (above 200 b) it went away for a couple of days, but then came back. Anyway, have wondered if I should be concerned. All of this, I know is related, just not sure how of what to do next?

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2 replies
jacoblamb | @jacoblamb | Nov 28 9:52am
In reply to @bextruelove "Hi, I had an ischemic stroke in ‘23. It was caused by a clot in my..." + (show)
@bextruelove

Hi,
I had an ischemic stroke in ‘23. It was caused by a clot in my brain stem. Thank God it was mild, generally speaking. This past August I experienced heart issues and I was diagnosed with an arrhythmia. I am currently taking a statin, aspirin, magnesium, and flecainide to address these issues. About 2 weeks ago I started hearing/getting the whooping, thumping noise in my right ear. Like you, only happens a few times throughout the day. I looked up what it is, pulsatile tinnitus. Have no clue why it’s happening. It’s not accompanied by headaches of dizziness. Very recently, after my last “episode” with a racing heart rate (above 200 b) it went away for a couple of days, but then came back. Anyway, have wondered if I should be concerned. All of this, I know is related, just not sure how of what to do next?

Jump to this post

Mid your thumping rhythmic as in it matches with your heartbeat? If so it’s pulsation tinnitus. Considering your medical history and increased heartbeat I would get this checked out right away. It cloud be nothing but it’s worth asking a physician about it. Try not to worry as you don’t know what it is and stress could make it worse for you. If the wait to see your physician is too long goto emergency dept.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 3 10:12am
In reply to @bextruelove "Hi, I had an ischemic stroke in ‘23. It was caused by a clot in my..." + (show)
@bextruelove

Hi,
I had an ischemic stroke in ‘23. It was caused by a clot in my brain stem. Thank God it was mild, generally speaking. This past August I experienced heart issues and I was diagnosed with an arrhythmia. I am currently taking a statin, aspirin, magnesium, and flecainide to address these issues. About 2 weeks ago I started hearing/getting the whooping, thumping noise in my right ear. Like you, only happens a few times throughout the day. I looked up what it is, pulsatile tinnitus. Have no clue why it’s happening. It’s not accompanied by headaches of dizziness. Very recently, after my last “episode” with a racing heart rate (above 200 b) it went away for a couple of days, but then came back. Anyway, have wondered if I should be concerned. All of this, I know is related, just not sure how of what to do next?

Jump to this post

Hi, @bextruelove - Since you think you could be experiencing pulsatile tinnitus, here's one discussion on Mayo Clinic Connect you might be interested in reading https://connect.mayoclinic.org/discussion/pulsatile-tinnitus-1/.

How have your symptoms been in the past few days, bextruelove? Did you get the chance to ask a physician about the whooping, thumping noise in your right ear?

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