Cerebral venous sinus thrombosis (cvst)

I also forgot to mention that 3 months into my diagnosis, I started getting seizures and was started on Keppra.

Hello. Glad I found you! I was diagnosed with a transverse venous brain blot on the whole right side in 2011, my clot is still there & the same. It took 3 months for a diagnosis & I was immediately admitted to ICU & had a spinal tap to relieve pressure in my brain. My blood was so thick, they had to use a syringe to get any blood, it was clotting as fast as it came out. I was healthy & just fine & one day after shopping, my sister was looking at me talking & I felt like I was here but not here, I knew I was in trouble. I was on Pradaxa for 6 months, no changes in my clot & my neurologist said there was nothing left to do, I have been on aspirin therapy for 14 yrs. I’ve had to go to the ER many times for bad headaches to receive an IV of Compazine. I did acupuncture 8 yrs for the headaches & my anxiety (which I hate)! I have no genetic clotting disorder & we aren’t sure what happened to me. My clot is a part of me after all these years Someone here mentioned sinus infection, my neurologist did say sinus infections can cause brain clots. I’ve managed well all these yrs but I’m left with anxiety, dizziness, sometimes my gait is off & fatigue but I’m also blessed that I didn’t have a stroke. I’ve learned to trust God in all things…big & small. I feel for each of you, this is a hard journey to be one & how wonderful that each of you decided to share your journey. Blessings~

My daughter was diagnosed with cerebral venous sinus thrombosis and was treated with Heparin drip and antibiotics. Infectious disease with the hospital recommended to stop the antibiotic because there was not sign of infection. The hospital continued the heparin dip for six days and set up my daughter to continue the blood thinner at home. She was released from the hospital but not getting better. Her vision went from 20/400 to 20/1000 by the time she left the hospital. The next day, we traveled to another doctor, who specializes in thrombosis to receive a second opinion. He examined my daughter and recommended hospitalization where a team of doctors could review her case. After many test, the radiology team told use did not see signs of a thrombosis, but said she has Tolosa-Hunt Syndrome and needs to be on corticosteroids. Her vision has returned to 20/250 however, test show there is optic nerve damage. Eye movement has returned and vision as improved. Her face is still numb and very swollen. She did return back to college and will graduate with honors.

Hi! So glad to find these posts. I was diagnosed with CVST on Dec. 13, 2021. It truly took me by surprise! I was getting ready to go study at the library and all of a sudden my vision was challenged. I started seeing black and white lines moving like a heatwave with a great deal of distortion. Called the nurse and she told me to get to the nearest hospital. Took a Uber and they took me immediately. I am now on Pradaxa after being hospitalized and diagnosed with CVST after MRI and aggressive dose of Heparin, then Lovenox. Under the care of a neurologist. I go today for further blood test studies. My question to some of you is if you felt fatigued while on blood thinners or is this a symptom of CVST? I just don't feel myself. It was very helpful reading your posts. I am 59 years old and in seminary. A very active woman with no diabetes, high blood pressure, or heart disease. I am not obese and I stay active. No estrogen issues. They are still running tests to try to figure out the "why?" God bless you for this site.

Hello Theresa.
I'm a street musician in New Orleans. This pandemic as you know put the brakes on society so being cooped up I decided to attack this problem. I've seen countless doctors over the years to no avail.
The first thing I tried was eliminating processed food/junk, what I really mean is sugar. That's not an easy thing to do. Candy, cornflakes, tinned food and all the rest of that stuff is easy enough, but excess non refined sugar hides all over the place. I allowed myself berries and an occasional banana. Also chocolate with Stevia.
That improved my speech and conversation. It really works. Refined sugar is not a good thing. But although I felt better things were still wrong.
Insulin resistance had been ruled out, two endochrynologists said my hormones were fine.
So I went after the liver. Milk thistle, zinc, saw palmetto, thiamine, choline, b12, NAC... I got these off the shelf at Whole Foods. It was all hit and miss but I only have myself.
Anyway I seemed to have nudged my condition but things still weren't right. Back to the net.
Wandering through endless articles on brain fog and balance issues I stumbled on Ammonia. This is another hidden ranger. Excess ammonia causes hepatic encephalopathy. Those symptoms looked pretty close to mine. So off I went after that. Problem was Lactulose is the only viable solution but it needs a prescription. So I rang up a vet saying I needed some for my dog. They didn't buy it so I went to the hospital and told them I had hepatic encephalopathy. I got three weeks worth. When I needed refills they wouldn't give me any until I had my blood taken. My Ammonia level was 45 which is boundary high. I stayed on Lactulose for three months then went back to the hospital and my level was 22. But I still knew I was not feeling better. You can con yourself with that placebo effect for only so long. But encephalopathy was a step forward. It looked good. Back to the net.
Hidden in another article was Brain Hypoxia. This has its own encephalopathy. It was a shock. I always subconsciously hoped it wasnt my brain. That scares me.
The article also mentioned stroke and carbon monoxide, an evil thing I have worked around for years.
I had an MRI and it was normal. My NP gave me the news over the phone. She seemed busy as we spoke, "Well, is there anything else I can do for you honey?" Nurses are wonderful but I was feeling a little abandoned but I persevered. I asked for an EEG. I haven't got my appointment yet.
A few days ago I was on the phone to my buddy in Boston. He said he had got the vaccine. First thing I was concerned about was J+J, he has had problems with clots. But he got the Moderna. He casually mentioned the side effects name. Two words struck me. Sinus and cerebral.
Only recently I was talking to a retired nurse. I told her I only feel better when I know I have a cold coming on.
I was always under the impression a cold was the lungs but she mentioned the sinus.
Then I found CVTS.
As things stand right now I'm waiting for an EEG. I could be wrong but if I ever find this thing I know I'm a lot closer than I was a year ago.
So that's the basic outline Theresa. If anybody has any questions about anything I have experienced I'm right here always. Nothing is off limits, this is too important.
Thank you

Hi, @jpartin, and welcome to Mayo Clinic Connect. I'm glad you found Connect and this discussion, also.

You mentioned you are left with anxiety, dizziness, a gait that is sometimes off fatigue. Do you have plans to address these symptoms from here on out?

Hello. Glad I found you! I was diagnosed with a transverse venous brain blot on the whole right side in 2011, my clot is still there & the same. It took 3 months for a diagnosis & I was immediately admitted to ICU & had a spinal tap to relieve pressure in my brain. My blood was so thick, they had to use a syringe to get any blood, it was clotting as fast as it came out. I was healthy & just fine & one day after shopping, my sister was looking at me talking & I felt like I was here but not here, I knew I was in trouble. I was on Pradaxa for 6 months, no changes in my clot & my neurologist said there was nothing left to do, I have been on aspirin therapy for 14 yrs. I’ve had to go to the ER many times for bad headaches to receive an IV of Compazine. I did acupuncture 8 yrs for the headaches & my anxiety (which I hate)! I have no genetic clotting disorder & we aren’t sure what happened to me. My clot is a part of me after all these years Someone here mentioned sinus infection, my neurologist did say sinus infections can cause brain clots. I’ve managed well all these yrs but I’m left with anxiety, dizziness, sometimes my gait is off & fatigue but I’m also blessed that I didn’t have a stroke. I’ve learned to trust God in all things…big & small. I feel for each of you, this is a hard journey to be one & how wonderful that each of you decided to share your journey. Blessings~

Hello All,

I came to this site in hopes of looking for some answers. My husband has had blood clots for over 30 yrs. He has the Protein S Deficiency, The Factor 5, The Anti-phospholipid Antibodies, and a few more that I can not think of right now. He has hundreds of Blood Clots to his legs and arms. Has had Dozens of Pulmonary Emboli's, has thrown them to his heart and even about 8 years ago had a Previous CVST, that we thought was all "healed".

In October we went to the Urgent Care because my husband could not hear... An ambulance ride later, we are in the Hospital being told that his O2 Levels were Extremely Low, his body was "filled" with extreme levels of Carbon Dioxide, and he would need to be placed on a "BPap" Machine to expel the "Dioxide". Unfortunately my husband is Extremely Facial Claustrophobic, and with the Numbers of Dioxide increasing, they had to intubate him. 1 Week later they discharge him, with no known reason for what happened. They set up an Oxygen take for use when his O2 numbers get low. They mentioned that he had had some Heart Issues and refer us to a Heart Dr.

Fast forward to November 27, I have to call an ambulance to my home as my husband is unconscious, and I am not able to wake him. His O2 bounced between 46 & 76. We go to ER again and I explain what happened in the previous month. Same thing, his O2 levels are in the dirt and his Carbon Dioxide Levels are through the roof again, and they can not get him conscious. They try to Not Intubate him, and instead try the High Flow Heated Oxygen to no avail and had to intubate him again. They completed head CT, MRI & MRI with Contrast. Several days later, we are told that he has had a "Type" of a Stroke, again a few days in they get his levels to normal and discharge him home with continued use of oxygen when numbers lower, with another referral to for an Urgent Sleep Study (Which as of today, we still have not had). We see the Heart Dr. in December and there are no abnormalities according to him.

Fast forward again to December 24th and yet again, I need to call an ambulance as my Husband is unconscious, will not wake even with Oxygen and sternal rubs. We get him to the ER and this time his O2 Sats are in the toilet again, he has Extremely Elevated Levels of Carbon Dioxide & Carbon Monoxide. They were able this time to get him to tolerate the High Flow Nasal Canula. At this ER stay they inform us that at his November Stay they had discovered a "Unique" Cluster of Blood Clots called a CVST, and another unique cluster at the Back of his Sinus Cavity at the back of his brain. And yet again, after a few days of his O2 levels returning to normal they send him home with orders to use oxygen when his levels lower.

I am waiting for the "Bomb" to drop in January. No one can answer the question as to "Why this is Happening?"

They returned him to Lovenox Injections for managing his Blood Disorders after the hospital stay in October, and yet this continues to happen. We have Oxygen at Home for when his O2 levels decrease, and yet it continues to happen.... His Hematologist Expert at Oregon Health Sciences University (OHSU) in Portland is trying to reach out to other Pulmonology Experts in our State to no avail, and I am Extremely Concerned and looking for help.

Does anyone know if there is a way to reach out to the Mayo for assistance or where to go to next???