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Cerebral Sinus Thrombosis

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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.

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  • ang2
    ang2

    Posted

    Thanks for your response John. I greatly appreciate it. So far he has been good in social situations, I think the anxiety starts to hit him most when he is at home and starts to feel twitches or light headed. His greatest fear is the actual seizure because it leaves him distressed and disoriented.

    I will take on board your suggestion to see a hematologist and hopefully in the coming months he will start becoming more accustomed to his condition until he fully recovers.

    I wish you all the very best in your recovery. Hopefully after 5 months this will just be a bad experience that will never occur again to either yourself or my brother.

    Take care and thanks again for responding. Ang.

  • Emis_Moderator
    Emis_Moderator

    Posted

    Hi John,

    I had to delete your post with your email address as we do not post these. If users want to contact each other directly please use the private messaging facility.

    Regards,

    Alan

    Emis Moderator

  • johnhopps
    johnhopps

    Posted

    If he's on a steroid, when he comes off it , he might get tired because the body stops making adrenaline while on steroids and when you stop there's a few days when the body is low. when he starts exerting energy like exercising he will prob get some minor headaches that will last a few weeks but he will know the difference between a little pain and the pain he felt due to the clot .
  • Haf
    Haf

    Posted

    I am so glad to have found all of you!!!! I was diagnosed with Cerebral Venus Sinus Thrombosis and have felt very lonely, anxious and depressed as I was not able to find anyone who has had it. Unfortunately my doctors do not have enough knowledge on it and it has been very very scary. Three doctors missed the diagnosis, severe headache, neck ache, sickness and my vision was distorted. I was told in A&E that it was just a severe migraine from which I have never suffered from before. I decided to visit the optician and it was him that actually saw that it was more than that, as he could see a problem on my optic nerve, eventually I was given an MRI, and it showed the clot. It has been 8 weeks since my diagnosis and I am still having headaches, neck pain, feeling of burning and pressure in the head, also ear ache and numbness in the face. Is this normal? I was on a heparin infusion for 8 days while I was in hospital and am now on Warfarin. I have not been seen by a neurologist at all, so had to pay privately to see one, who said he could not give me any advice until he had seen the scan himself, this was on the 6th of June and I am still waiting to hear from him!!!!
    • sarah24206
      sarah24206 Haf

      Posted

      I of course find this forum after the conversations were a few years back but reading all of these helped eased my anxiety! I was 3 weeks post partum when I started having severe headaches. Just thinking it was my body go in my back to its normal state and my hormones stabilizing, I didnt think anything of it but to take some pain meds and call it good. A week later, I woke up July 5th to get ready for the day and I lost total control/feeling of my right side. As well as lost vision in my right eye and a tingling sensation traveled from the right side of my head down to my right hand. I knew something was wrong so my mother met with my husband and I so she could help with our newborn daughter while at the ER. Thanking everyday for the ER doctor on that shift. He had a suspicion instantly what was happening. Instantly ordered a MRI. As soon as all the results came back, sure enough. Post partum CVST! My heart sank and fear took over. 23 years old with my husband, our pup and our 1 month old baby girl. I was scared and can say I still am. I was put on blood thinners as a part of my treatment. Head aches were off and on through the whole thing and 4 months later had another MRI done. It came back clear. Now on baby aspirin for another 3 months. Thanking god every day for how it all came out and thanking him for every day I get on this earth. I still live with anxiety of waking up numb or even getting small head aches. This forum helped ease my anxiety! Thank you so much!

      -Sarah

  • ang2
    ang2

    Posted

    Hi Haf.

    It is VERY important that you see a nuerologist. CVST is a condition that affects the brain which means that you are at a very high risk of having a seizure. You need to be placed on anti-epilitic medication.

    Wafarin is prescribed to thin the blood, but this is a process that also needs to be closely monitored. A doctor or specialist should be reviewing your INR levels (how thin or thick your blood becomes) regularly during your Wafarin treatment - are you seeing a doctor about this?

    My brother did experience similiar side affects when he first started on the Wafarin but this slowly diminished as his condition improved. I do however suggest that you inform a doctor of these issues.

    It is a very scary experience, but if you research and understand the condition (my brother and I did a lot of internet reading and joined blogs like this!) it will help you manage it and get the right support.

    Although I did not experience it directly (my brother had it) I totally understand all the emotional feelings you have but just rest assured that you are not alone and actually its not as uncommon as people make it out to be.

    After 6 months of his diagnosis, my brother has completely recovered from it. He has to stay on anti-epileptic medication for 5 years and Wafarin for at least another 6 - 12 mths but apart from that he is back to normal.

    All the best.

    johnhopps - Thanks again for supporting my brother through this.

  • Haf
    Haf

    Posted

    Thank you ang2 for your comments, I actually rang the hospital today to chase things up and was told that the neurologist still hasn't read my scan and notes. I am at the end of my tether with all of this, but I am so glad to find other people who have had the same as it is a very loney place to be when you haven't got the right supprt from your Health Profession. I am glad that your brother has recovered from it. Best wishes x
  • issyg
    issyg

    Posted

    Hi

    I am so glad I found this forum. I am a 39yr old female and was diagnosed with cvst 17days ago. This was after suffering severe headaches for the last 8 months, slight forgetfullness, dizzy spells and going back and forth to my Gp. They kept on changing my blood pressure tablets saying I was reacting to it. Eventually on the day I woke up with headaches, dizziness, nausea and vomiting. I was taken to AE by ambulance and initially given a ct scan to see if I had a stroke, this was dismissed and they started treating me for meningitis . After a lumbar puncture proved negative, I had an MRI scan 6 days after where a blood clot was discovered in a vein in my brain.

    In as much as I was scared, sad and heartbroken, I felt relief that the headaches weren't my imagination and I got a diagnosis. I was discharged after 10 days and now on clexine injection and warfarin . I think reality is now dawning on me I feel depressed and teary most days. The continuous tiredness and lack of energy isn't helping because I feel helpless and keep wishing I could go back to being my active self..

    My question is, how long will it take for recovery and going back to a life of no headaches? We had a family vacation booked for mexico in 3 weeks and even though I have been advised not to fly for a while, I can't bring myself to cancel the trip.

    My husband has been a solid rock in all these and I know I wouldn't have been able to cope without him. I feel guilty that I am burdening him with my illness. Does anyone else feel this way,

    How have you all coped with the changes and what's the best approach. Sorry if I haven't made much sense in my post. I am still living in a state of self pity and can't seem to plan for the future

    • oliver97411
      oliver97411 issyg

      Posted

      Hi issue,

      I was diagnosed with cvst a year ago and put on warfarin medication for 8months. I had an MRI SCAN done 3 times and still the granulation tissue is evident and stays there blocking the flow of blood out from my brain. Headaches still come and go from time to time but not serious. My specialist say nothing to do after stopping my warfarin medication. I'm just concerned if you experienced travelling by plane with this type of illness. Thanks.

    • Tiger12
      Tiger12 oliver97411

      Posted

      oliver97411

      I was diagnosed with a cvst 3 years ago and I was on warfarin for 1 1/2 years until the clot was gone. I do have scar tissue on that vein, but the clot itself is gone. I suffer from chronic headaches, especially when I get overheated. In regards to travelling by plane, my neurologist just a couple months ago gave me permission to fly, but just short trips (couple hours, nothing long distance). I don't know how long it will be before she allows me to go for longer, but I fully trust her. Her reasoning behind this is that she doesn't want me sitting idle for too long. I hope this helps. 

    • oliver97411
      oliver97411 Tiger12

      Posted

      Thanks Tiger12. I've tried flying for 2hrs and it was alright. My specialist told me that there's no problem flying long distance but I feel that I need to get a second opinion if Im going to take an 8 or more hrs flight. Thanks.
    • kristen94197
      kristen94197 issyg

      Posted

      Hi. New here. New to all of this. I am a 40 yo female and on May 13th dragged myself to the ER because I couldn't handle the extreme headaches anymore. Suffered for three days. Migraine IV meds werent helping. CT and lumbar puncture r/o bleed and meningitis. MRI and CTV identified clot. Told I had CVST and started Heperin. I suffered severe "spinal"!headaches as result of punctures and apparent "leak". Since I had started blood thinners they didn't want to patch the leak as they would have. Those severe continued headaches made it impossible to do or stand up. Did this happen alto anyone? I also I haven't heard that anyone else is taking Eliqiis (instead of warafrin) But maybe it's new? Anyway I'm three weeks out and have more normal moments but have struggled with the unknowns. I am super emotional and impatient with my body bc it's hard to understand it all. I can see I am lucky in that besides wanted to decapitate myself in pain I was asymptomatic. Just not sure what to expect and wonder how everyone is doing. Nice to find this site!
    • Tiger12
      Tiger12 kristen94197

      Posted

      Hi Kristen94197. Sorry you had to go through all of the other things before they found out what was wrong. I also had to go through a spinal tap, but that was after they discovered my clot and they wanted to find out the pressure in my head (I think). I do believe that Eliquis is a newer  blood thinner. If I remember correfctly, Eliquis doesn't require weekly finger pricks for INR testing. The end of this month marks 4 years since my CVST. I was 45 when I had mine and I am doing just fine, minus chronic headaches which are managed by daily medications. By chronic headaches, I mean headaches that occur when the weather changes, when I get too hot, when I don't drink enough water. Nothing to get scared about. I am able to go about my daily life without any problems. I am a preschool teacher and it hasn't interferred with mmy job yet. Any questions you have, please feel free to ask and we will all try to answer them to the best of our abilities. 
    • kristen94197
      kristen94197 Tiger12

      Posted

      Hi Tiger12. Thank you for responding. One month ago today I went to the ER and I am happy to report I am doing really well. When i saw you were a preschool teacher I smiled becuase I work with that age group too as a speech therapist. As you know, need tons of energy and affect. I went bacl to work a few days and was wiped. I have a week off and am resting up for summer. You're right about Eliquis in that I don't have to get blood INR tests. I still struggle with the uknowns, the faigue and some of the emmotional impacts but am overall doing great. Thank you for reaching out and I appreciate all of your stories. I am here for anyone as well. Best!
    • Tiger12
      Tiger12 kristen94197

      Posted

      Hi Kristen94197! I'm happy to hear that overall you are doing great. I started working with a personal trainer because I didn't trust myself enough to workout on my own. Even though the doctors are blaming birth control on my clot (nothing else added up), my trainer still had some questions she wanted me to ask my neurologist. One of the questions was if I was at risk for further clots. My neurologists response was: "you get overheated and dehydrated then yes, the risk of recurrence is greater." So just a word to the wise, make sure you keep yourself hydrated and don't let yourself overheat. I know how busy working in preschool can get and relish the summers off as a time to recharge the batteries. Let me know how things are going! 
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