Cerebral venous sinus thrombosis (cvst)

Hello,
First of all, english is my second language so I'm sorry in advance for any kind of mistakes.
4 years ago , when I was 25 years old, after having very strong headaches, an MRI showed I have 3 blood clots in my brain. It happened because I took birth control pills and apparently I have a genetic disorder that causes blood clots.
Ever since then I've been taking blood thinners so I'm no longer at risk but I still suffer from daily headaches.
Ever since then my life changed completely. I had to stop working and take a break from college. I'm trying to get used to it and learn how to live with the pain, and hopefully completing my college degree.
I was wondering if anybody else who suffered from a similar problem could tell me if there's any triggers to those headaches, or things I should avoid doing or eating? And also what helped you cope with it and accept this new reality?

Hello, I was diagnosed with CVST last year of March. I had ten blood clots to the brain and had sever swelling. I also had a change in vision, because of the swelling pushing on the optic nerve. I was put on a medication to reduce the swelling, but the vision change was permanent.

Thanks for your note! I was 35 when I was diagnosed and was otherwise a very healthy person. Like you, all of my blood tests came back normal for any pre-dispositions to blood clotting. I was on oral contraceptives, which they feel may have provoked this. I did not have any issues with vision. My only symptom was a horrible headache that wouldn't go away for almost 10 days. I finally had an MRI and was admitted to the hospital for just under a week and put on IV Heparin. I was on Warafin for 6 months following that. I have not had any recurrences (going on a year and a half now), but am still a bit concerned. I had a 2nd MRI at the 6 month mark and there was slight improvement, but it was not gone yet. I, too, feel very lucky to be alive and credit great doctors for catching this before brain damage or worse occured. Thanks for writing... Touch base if you have any more questions or if you come across any interesting info on this.

THANK YOU! This is amazing... Much more information than I've been able to find on-line. I really appreciate your forwarding this link to me. I printed out all 71 pages to read through tonight.

Mayo Clinic has been actively involved in working with the American Heart Association in the development of guidelines regarding your diagnosis. Although the guidelines do not specifically address recurrent CVST, if it would be helpful to you, please see this linked article http://stroke.ahajournals.org/content/42/4/1158.full.

Hi I was diagnosed with a large CVST last September. It came as a massive shock as I consider myself to be relatively healthy and young - 23 at the time. Been through 2 CT scans, 1 week of IV Heparin and 7 months of Warfarin. Had my blood tests taken 1 month after coming off Warfarin and they have come back all clear recently 🙂 Was your vision affected at all? I had really bad double vision for 3 months. My vision is still not perfect but am lucky to be alive! It's great to hear from someone who has had something similar. I think about it every day.