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Cerebral Sinus Thrombosis

Posted , 71 users are following.

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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

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  • blondebear
    blondebear Guest

    Posted

    Hi, Im a 31 year old female uk who had a CVST in Oct 2015. Is anyone still folloiwing this discussion? If so I'd like to chat about our experiences smile
    • Tiger12
      Tiger12 blondebear

      Posted

      Still following. What do you want to know? I was 45 when my CVST appeared. 
  • mikeh62
    mikeh62 Guest

    Posted

    Yes I am still here! Off warfarin now and seems OK so far.... How can we help you?
  • johnhopps
    johnhopps Guest

    Posted

    Still following thread. Happened to me in 2012. Will never forget it.
  • johnhopps
    johnhopps Guest

    Posted

    It appears in most of the comments that the clot was found, warfarin was started and the clot dissolved. With mine it wasn't found. The vein ruptured in my head. With mine its cvsth. With the h for hemmorhage.
    • asperez98
      asperez98 johnhopps

      Posted

      I'm still following. My daughter (15) still has clots. The blood thinner isn't reducing them but there aren't any new ones.
    • Cindyjmk
      Cindyjmk johnhopps

      Posted

      So your clot never was found? I'm curious about your hemorrhage because I also had a hemorrhage. I'm told I'm a miracle to be alive. You?? Did you have surgery??
  • kmwhite0913
    kmwhite0913 Guest

    Posted

    Still following. Two clots. One 2009. The second 2014. Was off warfarin in between. First was transverse dur sinus and occluded jugular. Superior Sagittal to straight sinus to jugular bulb on opposite side. Now minor scarring in first. Superior Sagittal doesn't appear on MRI but numerous vascular structures have taken its place so good resolution. Back to work after nine months off the second time. I'll tell you anything you want to know.
    • Cindyjmk
      Cindyjmk kmwhite0913

      Posted

      2 clots??? Wow!!! I was told the likelihood of getting a second clot was very extremely slim to none.
    • kmwhite0913
      kmwhite0913 Cindyjmk

      Posted

      As was I.  That's why I went off warfarin.  

      Second time, more extensive blood tests revealed I have dysfibrinogenemia which can be a clotting disorder or bleeding disorder...mine is clotting.  

      I will be on warfarin for life now....they say the likelihood of another clot in the brain is very likely if I go off.

      Interestingly, if you get a clot in the brain, IF you get another clot, it's likeliest to be the brain again.  

       

  • johnhopps
    johnhopps Guest

    Posted

    Km. Wow twice.and you don't have factor v ? Inpray not a second time. Will if it ever happens again I'll ask for pradaxa. That warfarin didn't raise my inr. Coumadin worked but also put on a spare tire . of course they thought I was eating away.
    • kmwhite0913
      kmwhite0913 johnhopps

      Posted

      Spare tire is extensive.  Now thyroid issues are being diagnosed, too.  They're looking at metabolic syndrome and treating it so hopefully I'll get some help, as warfarin/coumadin are musts for me.  I want to be able to reverse it, as I seem to have so many other issues that arise, too.  (First clot I also developed an arterial bleed that had to be burr hole evacuated at Mayo.)  

      I don't have Factor V.  I do have dysfibrinogenemia we discovered.  They don't see that as huge factor in most but in me it is.  Father died at age 24 of pulmonary embolii.  The thought is he had the same.  My daughter also has very low fibrinogen, as well.  

    • johnhopps
      johnhopps kmwhite0913

      Posted

      You may be able to try pradaxa. It isn't generic so $$$$. Don't have to watch vitamin k intake and haven't heard of spare tire complaints. Keep us updated.
  • blondebear
    blondebear Guest

    Posted

    Thanks for replying everyone. My story is that in oct 2015 I collapsed with a seizure whilst making breakfast. Luckily my husband hear a noise and came through and rang an ambulance. I got taken to A&E. Initially they thought I was fine. The only symptom I had was headache. I’d had a severe  on left side for4 days previous but not enough to keep me off work. I generally would consider myself quite fit and healthy, im 50kg, 5ft 3, eat healthy, dont smoke and exercise regularly. Medical wise I have had ulcerative colitis for 7 years and an underactive thyroid.

    They then tested by blood pressure with me standing up and I collapsed again. They then sent me for a CT scan where they diagnosed a clot in my brain. The next day I got a MRI brain scan where they confirmed CVST. They think it was caused by the oral contraceptive Yasmin ( was on it 12 years)  in combination with my having Ulcerative colitis.

    I’m now on warfarin 11mg mon-fri and 10mg sat-sun and keppra anticonvulsant. Hopefully Im only on them for 6months.They’ve had issues getting my INR therapeutic I have a very fast metabolism! Ive got a review with my consultants in 2 weeks so hopefully they’ll have good news , im hoping for another MRI to see if its gone

    So nearly 4months on I work 5 days a week and try to go to the gym 3 days a week. I cycle to work as it was advised not to drive for 6 months. I have good days and bad days. I find I get tired more easily than before but I’m hoping that is just all the meds. I find with the keppra I wake about 4am quite frequent and cant get back to sleep. No more headaches though. From reading on here I feel overall I’ve been very lucky as I appear to have no complications (so far anyway). I obviously worry though and really just want to see how other people felt 4 months in. 

     

    • Tiger12
      Tiger12 blondebear

      Posted

      I am almost 4 years out. I still suffer from minor headaches, although now I only get them when the weather changes (rain or snow, or when my body gets overheated). I see my neurologist every 6 months for med checks. It took a while to get it to that point though. I must have gone through 5-6 MRI's to try and figure out why I was still getting headaches. Still can't quite figure out why, but at least she knows that all of her patients like me get them for the smae reason and I am better off than most. My clot has been gone since the 18 month mark and all that is left is some scar tissue. 
    • Cindyjmk
      Cindyjmk Tiger12

      Posted

      Could the scar tissue be what's causing your headaches?
    • Cindyjmk
      Cindyjmk blondebear

      Posted

      Does the Keppra give you any side effects such as nasty mood swings or anger or violence? It did me. Also I became somewhat suicidal. My neuro told me Keppra has that effect on some people so he took me off. I hadn't had any seizures anyway and it had been long enough since my hemorrhage/stroke that he didn't think I needed it anymore. They also thought my bc pills along with being dehydrated is what caused my clot on my brain. It was really no time after finding my clot that I had my bleed and surgery. It's been 2 years since now.
    • Tiger12
      Tiger12 Cindyjmk

      Posted

      Not sure about that. The fact that all of her patients with my condition (CVST) suffer from the same type of headaches, makes me believe that it's more common than we think. We are currently in the process of decreasing  one of my meds. I used to be taking 600mg of gabapentin four times daily and am currently down to 300mg three times daily. We are hoping that in 6 months we can begin the process of taking me off of gabapentin. So far so good, even with continuing to exercise 6 days a week. Again, the only time I tend to get the headaches is when the weather changes (rain or snow), or when my body gets overheated. I hired a personal trainer last April to help me with losing weight and learning to control my breathing. I have learned the signs of when my body is beginning to get too hot and I know when to call it quits with the exercise for the day. This in itself has helped drastically with my headaches and my traineer also keeps tabs on me. She asks me every time I see her how my head is doing and if I have even the slightest of headaches that day, we take it a little easier in our session. It's all a matter of mistening to your body. 
    • kmwhite0913
      kmwhite0913 blondebear

      Posted

      FIrst time, 4 months in I was much like you and back to work, active, etc.  Second, it took every day of 9 months to be able to return to work.  Still feeling recovery in some ways.  Intracranial pressure still rises if I do things like Yoga, but I can do an hour of Nia dancing without stop.  I just have to listen to my head every step of the way and listen to the exhaustion and take it easy when I can.....without being stagnant and risking other health issues/more clots.  

      Follow your intuition.  

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