1. Community
  2. Blood & Immune System
  3. Coagulation Disorders

Cerebral Sinus Thrombosis

Posted , 71 users are following.

Guest
Guest

I'm 32 and recently suffered from the above. It was only detected after suffering 2 weeks of intense headaches which eventually affected my optic nerves in my eyes. I wear glasses and after 2 weeks of intense headaches my eyesight actually became much better which baffled me. I was sent away from GP with the diagnosis of a tension headache (which I don't hold any blame for) but luckily I pursued further and booked an immediate appt with an Optician who found that my visual field was affected in my left eye. I was advised to go to the Emergency Eye Casualty who continued with further tests on my eyes. They discovered the damage to my optic nerves but at this point were unable to find the source and I was seen immediately by a Neurologist who at first thought it was benign cranial hypertension. He arranged a CT scan and said that he did not expect to find anything but was very surprised to see the clot on the CT. I was admitted immediately and underwent a lumber puncture. I spent 5 days in hospital and was discharged on Warfarin medication for 3 months. I have since undergone a repeat CT scan. I believe I was very lucky as any longer I could have had a stroke. I was advised to stop the oral contraceptive pill immediately as they said this may have been the cause but also that I have recently underwent a breast reduction 3 months before.

4 likes, 460 replies

460 Replies

Prev Next
  • nisasa45524
    nisasa45524 Guest

    Posted

    I had sinus venous thrombosis in 2013. Had a baby in 2015. Took blood thinner while pregnant. Doing fine now but always worried. My doctor said the best magic medicine for me is water. I encourage every one to drink water.
  • mollie85850
    mollie85850 Guest

    Posted

    Hi,

    Not sure if anyone still follows this but i suffered a vinus sinus thrumbous clot in january four days after i gave birth to my 2nd child. I also suffered a stroke and seizure due to 2 brain bleeds. Im on bloodthinners and keppra for 6 months and then will be rescanned. Ive had awful anxiety since it happened and still get very tired and some weakness and tingling in my arms and legs and pressure in my head. Did anyone find it possible to get back to their normal selfs? Feel like i never will!

    • sarah24206
      sarah24206 mollie85850

      Posted

      My suffered with anxiety really bad as well! I wouldn't sleep a good portion of the night in fear that I would wake up numb. But I can say, I am back to living my normal everyday. I had to adjust to drinking more water and watching what I eat more. Anxiety and fear still gets me a little when I get a slight headache and I catch myself pinching myself still just to make sure I can feel my right side but over all, I thank God for answered prayers and continue to heal physically and emotionally daily. smile You're not alone! I didn't find this forum until after it was confirmed to be dissolved. So all that time I felt most definitely alone and like an anomaly.

    • mollie85850
      mollie85850 sarah24206

      Posted

      I had never heard of it happening before it happened to me so it was the shock as well i still find hard. I still wake up with numb hands and arms quite often but my consultant thinks it might be carpel tunnel due to pregnancy and not clot related. Its so frustrating cos everytime i try to get back to normal i end up feeling awful again. I keep telling myself i should be better by now. My 6 months is up in july so praying to hear my clot is dispersed too
    • sarah24206
      sarah24206 mollie85850

      Posted

      Exactly! My husband and I went through it all as well. Sheer shock and I was definitely overwhelmed. Never knew this could happen. It never even occured to me that anything like that can happen. But here we are. The anomaly's. It took a while to get back to feeling normal. I won't say it didn't. I our brains suffered trauma so will it ever remain the same, not really. I've lost some memory and still get head aches but that's a long term symptom from mine. You will get better! With lots of fear and anxiety, you will make It to normal!

    • mollie85850
      mollie85850 sarah24206

      Posted

      i was exactly the same! Try to tell myself im very lucky to be here but sometimes it still gets hard with the anxiety! But im getting there with the fear slowly. I remember very little of the few weeks after it happened which is hard cos i dont remember much of my daughter as a newborn but just need to get back to normal and get on with my life! Do they no why you suffered a clot?
    • Cindyjmk
      Cindyjmk mollie85850

      Posted

      I had a major bleed after being put on blood thinners for my clot.  Ended up having to have emergency brain surgery. It’s been 4 1/2 years now and I’m still not back to the original me.  But I’m alive, by the grace of God!!!  
    • sarah24206
      sarah24206 mollie85850

      Posted

      I'm slowly gaining memory back from being pregnant and a few things here and there after I had my daughter. I could not agree more, we are super thankful that I am still here and living wonderfully but the anxiety does make it hard at times. My clot was due to the pregnancy. And my hematologist did tell me that blood thinners are known to cause head aches as well. So not only have the trauma happen to the brain but for the thinners to cause a few headaches. My headaches always were onset when I was stressed and not drinking enough water. It still happens so I make sure to drink lots of water. And I presume your bleeds were caused by the pressure building up from the clot that pressed the vein to "burst" or "break"?

    • mollie85850
      mollie85850 sarah24206

      Posted

      Yeah it seemed to be the bleeds where a result from the clot. I had 2 or 3. Im on blood thinners and seizure medication until july. Have you been left with any weakness or anything? I still get weakness and strange sendations in my arms and legs. It's so hard with wee ones too cos you just want to be a normal mum! Thats good to no about blood thinners causing headaches. Im on propanolol for migraines and anxiety and it's helped a bit.

    • helenvf
      helenvf mollie85850

      Posted

      Hi Mollie

      Anxiety is a big factor with this as we have been through something scary. This together with feeling exhausted makes you emotional too.

      It takes time but all the symptoms do improve over time. Just make sure you rest lots along the way.

    • johnlortz
      johnlortz mollie85850

      Posted

      Hello, 

      It has been about 18 months since we found out that my wife had CVST, and it has been a journey. She had just given birth to our second child, and thats when she started having her headaches. She thought it was a sinus infection, so she kept on pushing along, but the headaches became worse. Her left leg started to twitch, so we knew at that time something wasn't right.  We started to the hospital that second, and she experienced a seizure on the way to the ER. Obviously I was terrified and our newborn was in the backseat. I called the ambulance, and they picked her up and rushed her to the hospital. It wasn't long after, that the Dr came to talk to me and let me know she had a clot in her dural sinus. Thinking back, Im so glad they were able to diagnose it so fast. She spent a few weeks in ICU and then acute care after that. She was put on warfarin and keppra for a while, but we were unable to get her INR levels right. They switched her to Arixtra which is an injection blood thinner, but we went with this one so she could continue breast feeding while using this one...this was very important to her. 

      It has been a journey regarding her building her strength and energy back up. She utilized a walker for a long time after the event, and her walking was showing much improvement for a while. But after about 12 months, the Dr took her off the keppra, and her walking showed immediate improvement. She still has residual effects when she goes in high sensory places with alot of movement...malls, restaurants, etc. Her head hurts a little, and her left leg starts to get weak. She has been getting stronger, and we are hopeful she continues to get better. Last month she had a checkup with her neurologist, and we found out that her clot had dissolved which we were very happy about. We will just continue working on her getting stronger, and hoping the residual stuff improves. She has recently accepted a job offer starting in August, so we will see how that goes. I feel she is getting closer to where she was, but no doubt there is still some work to go. 

      Please give me an update on your situation, and I wish you the best.

  • mollie85850
    mollie85850 Guest

    Posted

    To be honest i dont really no though i had a few of them. I alway forgot i have to recover from them too not just the clot! I ended up back in hospital cos i started to show more stroke symptoms and they where worried they where making the bleeds worse but they where reducing. My headaches and symptoms have been more noticeable the last few days but think its tiredness and stress. I feel like 2 steps forward 3 steps back! Im 26 and just want to get on with life. how did they treat your clot then? If the blood thinners caused bleeding?
    • Cindyjmk
      Cindyjmk mollie85850

      Posted

      The blood thinners did treat the clot. But I had my bleed before the clot was gone. My neurosurgeon tried to get to the clot during my surgery but I became unstable during and he had to stop.  I stayed on thinners a while after and slowly the clot went away.  My bleed was very bad.  It literally like exploded and my brain was moved two inches to the left, smooshing the left side of my brain. That’s why I had to be air lifted to another hospital and have emergency surgery. Was a tough time! 
    • johnhopps
      johnhopps Cindyjmk

      Posted

      I haven't chatted with many who's clots ruptured in the brain. Seem to have similar stories. Mine is I had terrible pain in head for a month. ER didn't spot clot with CT scan , said it was an ear infection. Wife found me seizing in bed one morning. Was on alot of meds including dexamethasone to reduce the swelling of brain. It's almost 6 years.

    • mollie85850
      mollie85850 Cindyjmk

      Posted

      Omg that's awful! I think its all just so scary. I just have to keep telling myself we're very lucky to be here

    • helenvf
      helenvf mollie85850

      Posted

      There is a Facebook page for CVST sufferers. Has brilliant advice from fellow sufferers - people from all around the world so always someone around to help!
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.