Cerebral venous sinus thrombosis (cvst)

My 30 yr old daughter was diagnosed with CVST in April. The suspected contributor was estrogen birth control pills- no clotting disorder family history and neg on genetic tests. She has been discharged and recovering at home.

It has been a difficult time to say the least- any patient or caregiver out there I can connect with? Thank you- Sonya

It seems as though I am not susceptible to blood clots. Lupus work was negative. The hematologist thinks that it was due to a sinus infection that I had in November. Feels as if my body was protecting the brain and formed a clot to block the infection. I wonder has anyone heard of this before?

Brockman1, what a shock. Thank goodness you got help right away. I'm hoping fellow members like @makingfriends @timw6 @moondusk @awa @kiwimn17 @kyglo @pattylynn can share their experiences with fatigue and CVST or blood thinners.

Brockman, how did the further blood studies go? Any updates?

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