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
  • emily96263
    emily96263 Guest

    Posted

    I am 17 and suffered a venous sinus thrombosis last year in May, due to a reaction to Yasmin oral contraceptive. I had suffered from severe headaches for about a month previously after starting the pill, and had a migraine where I couldn't stand anything light or any noise and was sick. I went to the hospital to be told by the doctor there was no link between the pill and headaces... The GP took me off the pill, and put me on norethisterone to delay my period during exams. A few weeks later I was on my way to school for an exam and had a seizure, to be taken to hospital and discovered I had a clot the length of my finger in my brain, I was in hospital for 10 days - the first few of which I didn't have a clue what was going on. I was put on heparin, warfarin and keppra for 8 months. Due to me missing my exams, I had to take an extra year at college - which while recovering and not being able to do much such as going out in the evenings aswell as not being in classes with my friends led me to feeling lost and depressed, aswell as breaking up with my boyfriend who'd supported me all the way through I felt I had no-one to talk to and had to cope with it all alone. Most of the time I think I am fine with it, however when people ask me how it has affected me and if I notice any differences to before I break down with no prior warning. I still get headaches and have days where I don't feel my best, however these are becoming fewer as time goes on, yet lack of sleep/water seem to affect me alot more than they did previously. At first when they tell you to not google it its the first thing you do - I remember uncontrollably crying when reading the wikipedia page on it. In the ways it has affected me I am alot slower when it comes to writing and processing - not the best thing at my age however my college do support me alot, but it has had its positives too as it means I am alot more aware of my life and realise that the time I have is short and I am lucky to be alive, however I am still scared of it reoccuring, aswell as being told that for me to have children in the future could be very difficult - but hopefully medicine solves that issue. I have never spoke to anyone before with this issue, and would be glad on advice to how others cope with this issue.
    • johnhopps
      johnhopps emily96263

      Posted

      All of the posters on this forum have experienced similar trauma.  Its great that you are rwcovering . the seizure can cause fear. You realize how helpless you can become in any moment. If I can mention something to make you feel a bit better about yourself. Thankfully for you the seizure occurred and the clot was found. People like me didn't have the seizure initially . my clot wound up closing a vein in my head to the point where the vein dilated then ruptured causing the clot and blood to go into my brain.  I then had the seizure and was in really bad shape. Best to your recovery
    • Tiger12
      Tiger12 emily96263

      Posted

      Emily, I agree with you when you say that you are afraid of it reoccurring. I sometimes feel the same way and it's been 2years since the discovery of my CVST. It took 1 1/2 years on warfarin before the clot dissolved and I gave been clot free for 8 months. I still suffer minor headaches, especially when I get really warm. My husband, family, and friends have all been really supportive with this and I can't imagine not having them around. Glad you came through relatively okay, except for the processing issue. I can't see any impairments that I have from this other than then occasional  losing train of thought. Just keep in tune with your body, and don't be afraid to talk to your doctor about any concerns.
    • Cindyjmk
      Cindyjmk Tiger12

      Posted

      Hi everyone. I am wondering if I am the only one who, after having a clot on the back of my brain and being on wafarin, ended up having a major hemorrhage/stroke which led to emergency brain surgery to save my life???
    • emily96263
      emily96263 johnhopps

      Posted

      Oh no, the seizure only occured due to the vein bursting and the blood flow in, I didn't know people who could have it before the haemorrhage. Luckily it was only a small bleed and everything could have been alot worse which there isn't a day that I am not thankful for. And to yours.
    • emily96263
      emily96263 Tiger12

      Posted

      Its pretty much put me and alot of my friends off taking hormones for a very long time, the risk just isn't nessacary. My family has been really helpful all the way through - its such an odd feeling being unable to do things such as walk or communicate well, I found standing for more than 2 minutes while brushing my teeth would cause me to faint, or showers. I still look back on the few months after and it upsets me, I hope this fades as time goes on!
    • DanielleLedger90
      DanielleLedger90 emily96263

      Posted

      Hello! 

      How is everyone doing? 

      Emily did they say your pill caused yours? They said that could of been a possibility with me but never gave me an exact cause of my clot which is a little frustrating. 

      Well I've been clot free for a year now and pleased to say that I am 14 weeks pregnant  specialists have put me back on fragmin ufff and aspirin.  Forgot how much it bloody stings!!! 

      X

    • emily96263
      emily96263 DanielleLedger90

      Posted

      They didn't say it definetly caused it, however I had only been on it for 3 weeks and had never had any problems before so it was assumed, but they couldn't find what was wrong with my blood to make me succeptible to it. And congrats! yeah the fragmin was so stingy, my stomach took liked I had been punched in various places due to the bruises!
  • sharon250
    sharon250 Guest

    Posted

    Hi

    I had a bleed and a stroke and still struggling now with balance coordination, headaches, concentration, dizzyness, tiredness and I am not as sharp as I was before. I am now raising a four year old on my own too, not easy. Went for follow up appointment yesterday and was not any solutions just told get on with it, easier said than done. I am an keppra as had seizures at the time and three months later and they decided to keep me on Warferin for life. There was not genetic diseases though. I am trying to be brave and get on with it but no way could haold down a job at this moment in time, I was a uni student in second year. I have since managed to pass the exams I missed and I am trying to finish my degree on line if I can claim pip's and esa to keep  roof over our heads now I am on my own. I am hoping the symptoms go away and i can get back to some normality. It has been a nightmare but at least I am still here to care for my daughter. They were going to operate but at the last minute I started to respond to treatment. Good luck everyone with your recovery.

    • Cindyjmk
      Cindyjmk sharon250

      Posted

      Hi Sharon!  They took me off warfarin because they said 98 percent of my clot was gone after my last MRI. Thank God. They just recently took me off of my seizure meds. Keppra totally messed me up. My doctor said he didn't think I would ever be able to do my job again but if I did it would be a long time before I could. I still also have balance issues, coordination, I get exhausted very very easily. My speech is still a little effected but more so when I'm tired. My headaches have started coming back more and my BP is going up. They just recently raised my BP meds. This is scary for me because the headaches and the BP are what were the original symptoms I had when they first found my clot. Good luck to you. I am very proud of you for being able to take care of your little girl. Keep up the good work and I will pray for you. All of you out there. smile
    • johnhopps
      johnhopps Cindyjmk

      Posted

      I also get exhaughsted quickly and its been 2 years since the hemorrhage. The hemorrhage or meds changed me.  I grew a lot of muscle but am weaker. I ran a couple of miles and my legs will be sore for a week.  I'm down to a low dose of Keppra still. My 48 hr Eeg came back normal. 
    • Cindyjmk
      Cindyjmk johnhopps

      Posted

      Awesome!!  I'm glad it came back normal!!  I am still wondering if I am the only lone one here who actually had to have surgery for my hemorrhage??  It was not fun, to say the least.  
    • Tiger12
      Tiger12 Cindyjmk

      Posted

      Sorry, I never hemorrhaged nor did I have surgery for the clot. The neurologist told me that if they went in to remove it, due the the area of the clot, it would do more harm than good. I have been clot free for 8 months and it has been 2 years since the discovery of the clot. I still get tired, which I didn't attribute to the clot until I was reading all of the posts here. I am limited in the exercises I can do (I can only walk or ride a bicycle, whether it be stationery or regular) and I have to watch how hot I get. My body has run warm since the onset of the clot and if I get too warm, the headaches come back for days at a time. My co-workers have stopped asking me how it is outside (I work in a preschool) as my answer is almost always different than everyone elses. 
    • johnhopps
      johnhopps Cindyjmk

      Posted

      My clot dissolved in the brain. I don't know when surgery would be necessary. I forgot to mention I mentioned to the neuro how tired I still get how sore I get from working out and she says where I had the hemorrhage should only effect language speech etc. Now effing way.  
    • Tiger12
      Tiger12 johnhopps

      Posted

      I have made the comment to my neuro as well about how warm I get and that I can't exercise more than walking or biking and she tried to put me on some medicine that would help with that, but it didn't work. I see my doc the end of next week so I'm going to see what she says this time. I do get headaches across the whole back of my head and when talking to the doc about this, she mentioned that her handful of patients that have a thrombosis like I do suffer the same headache and she can't figure out why as it is not in the same place as our clots. I ended up getting a couple of shots in the back of my head where the clot was and that seems to have helped somewhat, but I am still limited on the type of exercise I do. 
    • Cindyjmk
      Cindyjmk Tiger12

      Posted

      For both of you, I also get hot very easy. It comes on fast too and sometimes I can just be sitting here and get soooo hot.  I was told at first too that they couldn't do surgery to go in and get the clot cause it was too dangerous, more dangerous than leaving it alone and just going on warfarin. No choice but to have emergency brain surgery for the hemorrhage tho. Dr said it was like I had a tsnami in my brain, powerful enough to move right side of my brain 2 inches to the left. No choice. I try to stay positive but some days it's jist so hard. Blood clot almost gone last MRI. It's been so long and a lot longer recovery and family and friends have their lives, you know, so more and more loneliness.  And no idea when I can drive or work again. Just a very hard situation. 
    • DanielleLedger90
      DanielleLedger90 Cindyjmk

      Posted

      Hello! 

      How is everyone doing? 

      Emily did they say your pill caused yours? They said that could of been a possibility with me but never gave me an exact cause of my clot which is a little frustrating. 

      Well I've been clot free for a year now and pleased to say that I am 14 weeks pregnant smile specialists have put me back on fragmin ufff and aspirin.  Forgot how much it bloody stings!!! 

      X

    • Tiger12
      Tiger12 DanielleLedger90

      Posted

      Danielle, 

      for me, they came to the conclusion that it was the pill that caused my clot. They did the blood tests for the hereditary disposition to clotting and the test came back negative. 

    • DanielleLedger90
      DanielleLedger90 Tiger12

      Posted

      Oh really? 

      They said either dehydration or my pill.

      I also flew to turkey for two weeks

      just wish o could get an answer as I get told all yhe time that the clot in my head was rare for a 23rd year old.

    • Tiger12
      Tiger12 DanielleLedger90

      Posted

      They told me that the clot was rare. The clot was found when I was 45 and I had been on birth control off and on since I was 23. Since the blood test came back negative, they said the only other reason would be the pill. I no longer able to take any form of hormone replacement due to the clot. 
    • DanielleLedger90
      DanielleLedger90 Tiger12

      Posted

      Oh gosh so you was on it for a long time I was on it for 8yrs.

      yes I was told the same I can only have the marena coil fitted.

      if that's the case the pill needs taking off the shelves. 

      At no point did they ever stress the dangers u just see a small print in the instructions stating it could cause clots

    • Tiger12
      Tiger12 DanielleLedger90

      Posted

      They there is only a 1% chance of a clot. Every year, my doctor would ask if there were any problems and since there weren't , they didn't see any reason to have me stop. At least it's not hereditary as my daughter would have to be tested. 
    • Cindyjmk
      Cindyjmk DanielleLedger90

      Posted

      They told me they didn't know what caused my clot either for sure but that it was either pills or dehydration also.  I haven't had mine as long as y'all have. I know I have a longggggg ways to go. At least I know I'm on the road to recovery and that it is "normal" for feeling tired a lot of the time and hot and the headaches. My doctor who did my brain surgery cause of the hemorrage told me 3-5 years recovery. I'm just taking baby steps, one day at a time. Sure wish I could return to driving though but they've said at least a year and will have to reevaluate even then. My short term memory effected too. Anybody else with short term memory loss??

      And I agree, somebody ought to be doing something about bc pills. 

    • DanielleLedger90
      DanielleLedger90 Cindyjmk

      Posted

      When did you have yours? Mine was only june last year and I seem to have made good recovery in a year. 

      Stay positive it seemed to help me smile

    • DanielleLedger90
      DanielleLedger90 Tiger12

      Posted

      That is such a small % considering how many cases I have heard about lately! 
    • Cindyjmk
      Cindyjmk DanielleLedger90

      Posted

      We found my clot right before thanksgiving, November 2013.  I was in the hospital for 8 days, I think hubby said.  On Dec 4 is when it was noticed something was wrong so I was rushed to the hospital. They found that I had a hemorrhage and I had my brain surgery on Dec 5. They had to wait overnight trying to reverse the Warfarin and give me plasma so I could have the surgery. Doctor said I am lucky to be alive cause he said when he saw the initial scan the hemorrhage was so bad that it move right side of my brain 2 inches to the left. That's why he didn't think I would survive the night. So it has been coming up on 8 months since my surgery. Dr said part of the damage to my brain is that part of it is like a 3-4 year old capacity but that should be temporary and his best estimate for a full recovery is 3-5 years. I try to stay as positive as I can and have a lot of support but find that people feel for me but obviously can't truly relate to what it's been like and still continues to be like. And I have yet to find anyone on here who has had to have surgery for their bleed. It is helping me talking with all of you though. smile
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.