Help with CVST

Hi, this spring I was diagnosed with CVST. I suffered from migraines since I was 21. The day it happened I thought it was just a migraine but the pain was the worst I ever had. I was sick all day and had 30 seconds where my legs did not work properly. I was in the hospital for 7 days and then discharged with multiple blog clots in the brain. My understanding is that 5 in 1 million gets this. After all the blood work was done the doctors came to the conclusion that there was no reason for me to have this condition I.e. no problems with my blood, its not heritery, do not have any of the deseases that cause this. So, the doctors are at a loss. 6 moths later they want
To take me off the blood thinners without checking if the blood clots are gone. I get the impression that they have no idea how to treat me. The specialists do not want to see me again as my condition has been classified as a random event. Has anyone gone through this? I am really confused with no real answers.

Hi cbell,

Welcome to LADVT, as much as it is not the place where we gather and socialize...
For those not knowing what CVST, it's Cerebral Venous Sinus Thrombosis. Since most that are here deal with DVT(Deep Vein Thrombosis) or UBT (Upper Body Thrombosis).
Many of us (even if it is DVT that we have) also have no reasons (hereditary or diseased) to be producing blood clots like we do... They even have a name for it "Idiopathic DVT" in your case it would be "Idiopathic CVST". 
As much as it seems rather dangerous to take you off anticoagulants(one would think), 6 months is the standard lenght/period for a first time clotter. You can also get a second opinion if you like and if this would help you...What kind of specialist have you seen so far?

Yes, this seems to be a rare condition and finding information, studies and people to talk to about this is very hard. I was hoping to talk to someone else who has gone through this to see if they are having the same issues and could answer some questions the doctors can't.

All I can say is that I am extremely lucky that I did not suffer any permanent side affects only the continued headaches and hopefully they will go when the blood clots go.

As for the specialists I have been to: neurologist, hematologist.