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Cerebral Sinus Thrombosis

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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.

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  • shannon45769
    shannon45769 Guest

    Posted

    In June my CT scan showed that my clot in my brain has gone but in February I had a nasty bump on my head and every since my headaches has been bad. I feel like my left side of head is swollen and my eye really hurts. It hurts all the time but kills me every morning, afternoon and in the nights. Anybody been through this and knows what to do? Please help
    • Tiger12
      Tiger12 shannon45769

      Posted

      Have you been to your doctor about this? Maybe even go see an eye doctor since this one involves your eye hurting? I haven't been through this but these would be my suggestions especially since it is now April and it is still hurting. 

    • helenvf
      helenvf shannon45769

      Posted

      I'd definitely go to the doctors and get this checked - especially if you are anticoagulation.

  • tavga90904
    tavga90904 Guest

    Posted

    Same situation. im going to read some thread here. hoping for some answers.
  • melissa37170
    melissa37170 Guest

    Posted

    When I had double vision I got violently ill. The blood thinners were to strong and causing a bleed in my brain. If you have double vision you should seek medical help ASAP!!!
  • Gianna85
    Gianna85 Guest

    Posted

    I'm so glad I've found this discussion! There really isn't a lot of information online about this condition and the effects it has following diagnosis. I'm 32, living in UK and I've had a similar experience to many of you on here; sudden severe headache, weeks of agony, missed diagnosis of migranes and even sinusitis, double vision, stroke like numbness, confusion and nausea. I had a CT scan after 3 weeks of symptoms which showed a clot on my sagittal sinus. I'm now 3mths further along, taking warfarin and slowly getting back to normal. I'm still experiencing headaches, and the anxiety that comes with that after this whole experience. It's been very interesting reading this whole discussion thread knowing it's normal to feel like this. If anyone is still on this thread I'd love to know more about how long you experienced after-effects for and what life is like now. I'm hoping i'll get another scan to see the status of the clot. So far I've had no follow up for neurologist but am seeing the thrombosis team at the Churchill hospital, Oxford tomorrow to assess my progress and medication.

  • Gianna85
    Gianna85 Guest

    Posted

    I'm so glad I've found this discussion! There really isn't a lot of information online about this condition and the effects it has following diagnosis. I'm 32, living in UK and I've had a similar experience to many of you on here; sudden severe headache, weeks of agony, missed diagnosis of migranes and even sinusitis, double vision, stroke like numbness, confusion and nausea. I had a CT scan after 3 weeks of symptoms which showed a clot on my sagittal sinus. I'm now 3mths further along, taking warfarin and slowly getting back to normal. I'm still experiencing headaches, and the anxiety that comes with that after this whole experience. It's been very interesting reading this whole discussion thread knowing it's normal to feel like this. If anyone is still on this thread I'd love to know more about how long you experienced after-effects for and what life is like now. I'm hoping i'll get another scan to see the status of the clot. So far I've had no follow up for neurologist but am seeing the thrombosis team at the Churchill hospital, Oxford tomorrow to assess my progress and medication.

  • HTRaptor
    HTRaptor Guest

    Posted

    Hi,

    I live in the US. In March of 2017, I found myself with a week of awful headaches, not able to sleep, and overloading on pain pills (nothing helped). The final day everything happened in chaos. I was with my mom when I started to lose the ability to respond, I could barely walk, my thought process went on the window, and my eyesight became slightly weird. I didn't understand anything that was going on and slept for several days. I narrowly missed surgery for a shunt with my brain swelling (they quickly identified I had CVST after several scans) and have progressively getting better. My headaches are minute, my iron levels still fluctuate and I do have some minor deficits I've noticed (communication issues, emotional issues, I've been physically weaker since the incident) but I've definitely improved. On another note, they never found the cause of my CVST. They had several hypotheses: dehydration, hormones from a birth control I'd been taking, any other factors they could claw at, but never a definite answer. It always leaves me on a tight rope, scared to ever leave my blood thinner (Xarelto/Riveroxaban) when no definite reason was ever identified. It gives me comfort seeing others in forums like this. It was a very traumatizing time of my life, and I'm still scared to ever jump back into the normal part of my life when so much is left unanswered. 

    • Cindyjmk
      Cindyjmk HTRaptor

      Posted

      Hi! I too suffered from severe headaches and they found a CVST.  I was put on Warfarin.  They also never told me definitely what the cause was but said BC pills or dehydration. I was in the hospital a little over a week.  Once I got home, was home about two weeks, I believe, and ended up having a major hemorrhage in my brain.  An artery ruptured. It nearly killed me. The only thing that saved me was time.  My daughter was with me at the time and noticed I was acting kinda weird and I was rushed to the ER and they found my bleed on the scan and airlifted me to another hospital where I underwent emergency brain surgery.  They say my neurosurgeon is the best. Wish I remembered him.  He literally saved my life.  Evidently he told my husband he couldn’t guarantee I would survive surgery.  I have some deficits from it as the pressure from the bleed pushed my brain two inches to the left, smooshing my brain and killing some cells.  Some of my deficits are, I’m off balance, I am emotional, have post stroke pain and fatigue, and actually post stroke phantom pain.  I have lost memory and still continue to.  My attention span isn’t what it was. Among other things.  But I’m alive and that’s what matters!!  But it has been, and still is, the scariest thing I’ve ever been through!!  
    • Cindyjmk
      Cindyjmk HTRaptor

      Posted

      Hi! I too suffered from severe headaches and they found a CVST.  I was put on Warfarin.  They also never told me definitely what the cause was but said BC pills or dehydration. I was in the hospital a little over a week.  Once I got home, was home about two weeks, I believe, and ended up having a major hemorrhage in my brain.  An artery ruptured. It nearly killed me. The only thing that saved me was time.  My daughter was with me at the time and noticed I was acting kinda weird and I was rushed to the ER and they found my bleed on the scan and airlifted me to another hospital where I underwent emergency brain surgery.  They say my neurosurgeon is the best. Wish I remembered him.  He literally saved my life.  Evidently he told my husband he couldn’t guarantee I would survive surgery.  I have some deficits from it as the pressure from the bleed pushed my brain two inches to the left, smooshing my brain and killing some cells.  Some of my deficits are, I’m off balance, I am emotional, have post stroke pain and fatigue, and actually post stroke phantom pain.  I have lost memory and still continue to.  My attention span isn’t what it was. Among other things.  But I’m alive and that’s what matters!!  But it has been, and still is, the scariest thing I’ve ever been through!!  
    • helenvf
      helenvf Cindyjmk

      Posted

      Hello

      Sorry to hear you have been through such an awful time but as you say you are alive!

      There is a really good group on Facebook for CVST sufferers if you are a FB user. Majority of sufferers continue to have symptoms for a few years but do make progress. The first 12 to 18 months are definitely the worst.

      My advice is rest, rest and more rest! Pace yourself otherwise your head will soon tell you when you have overdone things.

      Take care.

    • Gianna85
      Gianna85 HTRaptor

      Posted

      This sounds so similar to my experience, still no definite cause of mine either and latest MRI scan at Christmas showed the clot was still there and hadn't started being reabsorbed by the vein, so likely will remain in definitely. Apparently the prognosis is the same as if it did disperse though. So I'm 9mths on now and still experiencing head and neck pain fairly regularly but have been able to return to work more or less full time, although it has been tiring and tough. As you say returning to normal life is not easy, I find I can't plan anything as my pain and fatigue often prevent me from doing things I used to do, hate the unpredictability of it all. Hard to slow down when I'm.so used rodding lies and being spontaneous, took months to realise I needed to rest more. And it's hard when you look seemingly normal to everyone, not an obvious physical injury! Also unsure if I feel able to stop medication as no known cause, although I'd rather not be on warfarin forever I guess it could be worse. This forum has been so helpful and reassuring reading other's experiences, doctors have bareky given me any information on the condition or how to manage it! I will search for the Facebook group too, thanks. Hope you continue recovering and feeling better :-)

    • Gianna85
      Gianna85

      Posted

      I don't wtf rodding lies is but it was meant to be 'doing lots'! Stupid auto correct! 😄

    • helenvf
      helenvf Gianna85

      Posted

      The cause of mine was Noristerone - me along with a lot of other women affected by an oral contraceptive. I'm on warfarin now for life.

      Remember you have had a type of brain injury which takes a long time to heal and recover from. Everything is harder, more tiring, painful and more emotional than ever before, but with time it does get easier I promise! I'm 2 and a half years on now - I still get tired, still have headaches but nowhere near as bad as the first 18 months. I am living with this - and resting when I know I need to, and pacing myself. I have started walking now too! Take care and try not to rush your recovery.

    • amy94514
      amy94514 helenvf

      Posted

      Do you know the FB name? I’ve searched and am unable to find anything.

      Thanks!!

    • helenvf
      helenvf amy94514

      Posted

      Look for 'cerebral venous thrombosis/stroke survivor'.

      Hope you find it as useful as me!

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