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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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  • Guest
    Guest

    Posted

    Hi there ,

    Just wonderd if you are in the uk?

    I have had contact with people who have had venous sinus thrombosis but not in the uk mainly in the USA.

    I had mine in 2003 , took them 4months to find it ! I was very ill , had warfarin for 7months , still having problems with my head now , they say now I have post traumatic migraines ! due to the trauma the brain had with the clot and the bleed I had .

    Would like to hear from you , see how you are now .

    best wishes Janet .

  • scottish_women
    scottish_women

    Posted

    in july last year I woke up with an headache which to relieve the pain I just wanted someone to remove my head....never had headaches before.....it has taken me until now to get back on my feet...however still get strange pounding in my head...particulary when under pressure which I thought would have been cleared by now..as the condition is so rare it is difficult to ascertain will this always be the case.

    I live in the UK and like to find our other folks experiences

    Scottish women

  • kizwhit
    kizwhit

    Posted

    i didnt get a pounding headache mine was a block of pain that covered the whole of the left side on my head and down my neck was a pain like no other. i was told mine was migraine. i will write my experience when i have more time because it was a struggle to get doctors to listen to me.

    even when i developed double vision i was told it because i was light headed. mine started 13th february this year so it's still on going.

  • Guest
    Guest

    Posted

    It makes me sad to read your experiences about misdiagnosis and being ignored by doctors in relation to this condition as my experience was the same.

    Mine was identified by MRI, for which I was referred to hospital but unbelievably due to a mix up it was forgotten about and never treated.

    I lived with pain in my head, neck and chest for some months, when the clot finally went to through my heart to my lungs. I was told after I left hosptial I must have had \"anxiety\", muscular issues and to take panadol. I'm not sure how I survived this, although now have residual vein damage and developed a heart problem. I still don't have any answers. The condition may not be as rare as people think, but little is known about it, including by doctors. The lack of awareness of the condition by doctors is a very dangerous thing.

  • Guest
    Guest

    Posted

    [quote:782d498d5c=\"head\"]Hi there ,

    Just wonderd if you are in the uk?

    I have had contact with people who have had venous sinus thrombosis but not in the uk mainly in the USA.

    I had mine in 2003 , took them 4months to find it ! I was very ill , had warfarin for 7months , still having problems with my head now , they say now I have post traumatic migraines ! due to the trauma the brain had with the clot and the bleed I had .

    Would like to hear from you , see how you are now .

    best wishes Janet .[/quote:782d498d5c]

    :? Hi, Im in New Zealand, I suffered CVT in 2002 in the mist of a twin pregnancy, I was sick for months but the hospital here ignored me, that was at 61/2 mnths. I just got sicker and sicker, but they didnt do a scan until after my girls were born. I was interested in your story as I regularly get \"migraines\" now. I have always had the very odd one since childhood, but they were different. They tell me the same thing Post Traumatic Headaches...this is frustrating. I know I'm not stressed, in fact the only thing that strsses me is the fact the Drs dont listen. These migraines are very real. How can we make them understand that these migraines are a direct complication from the CVT?

    Hope you have been feeling better, Christina

    • shannon45769
      shannon45769 Guest

      Posted

      Hi, I am 19 years old. Back in December 2015 I started having headaches whilst being pregnant and then in February 2016 I gave birth. Ten days after giving birth I got rushed to hospital with suspected meningitis but after two CT scans one normal and one with the dye. They found that I had a large blood clot in the brain and it was from pregnancy.

      Straight away they started treating me with heparin, Wafarin and clexaine. They also gave me a lumbar puncture just to make sure I didn't have meningitis which came back that I didn't. I was in so much pain due to the blood clot.

      Going through all of this and being a first time parent with a newborn was really hard. Since finding out about the clot I have been back a forth to the hospital in pain and having loads of nights in trying to sort out medication and an effective source of pain relief.

      I was suppose to stay on Wafarin for 6 months but i stayed on it for 7. I stopped taking it for 4 weeks and in that time I then developed a clot in my chest known as (PE). Now I am on anticoagulants for life.

      Everyday I have a really bad head and that has been going on since February time in 2016 and it doesn't seem to stop I might have the odd good day and bad but mostly bad. I don't know how to deal or cope with the pain. It's like a dull ongoing pain and I will also have the odd shooting pain.

      I'm on lots of different medication and it doesn't help with my head pain.

      Anyone been through this because of pregnancy? And does anyone know how long the pain of the headaches last? If so did anyone have another child and what was the outcome?

    • ClaireyApril
      ClaireyApril shannon45769

      Posted

      Hiya, 

              I had a CVT which was agony , I was abroad at the time & suffered a brain bleed flew back not knowing how serious I was - I'm on warfarin for life due to finding a mutant gene from blood tests which effects clotting . 

      The first year was the most painful I'm now 3 years on & I still have good & bad days with headaches throbbing etc but less severe & more good than bad days. . The trouble in the UK is they don't give you follow up MRI/CT scans (too expensive) unless you show signs of deterioration again so you are left guessing if the pain & pressure is a blood clot retuning or its residual from scarring from the original clot. 

      Every body's  journey is different & the doctors can't tell you when or how long your blood clot will take to go as it's different with each individual . 

      A specialist told me that the brain takes time to heal from any trauma but it does heal ! 

      Stay hydrated that really is important . 

      Blessings for your recovery x 

    • rebecca60920
      rebecca60920 shannon45769

      Posted

      Hi there!

      I am from the UK and i had my CVST January 2016 due to pregancy. The pain was incredible - the hospital (Arrowe Park) were amazing!! they gave me pain killers staright away through a canula did obs and then sent me for a CT scan were they oicked up that i had a blood clot on the brain. I wa treated in hospital for approx 5 days were they supported me and medicated me with pain killers and anti colgaulants. i was discharged with warfarin for 6 months. i suffered with headaches ever since! the headaches were 5 or 6 days out of 7. I went back to a follow up appontment with my Neurologist and we spoke about the headaches. They call them cluster headaches/migranes. its basically because of the trauma to your brain with the clot. My neurologist put me on propranolol - normally used for other things but has good rate of success with treating migrnaes. i was put on low dose at first like 10mg - didnt do much now im on 40mg twice a day and im practically heache free!! i also realised i had triggers! didnt bwelieve it until i went without it ... coffee! i havent touched a cup since. a year of heaches to practiclly free of them is such a good feeling. My advice - we have one life and we have to look after it, if it wasnt for my husband emailing and speaking to the neurolgist after the clot had happened i would still be suffering today. Speak up and dont be fobbed off - you know your body better than anyone else no matter how qualified they are! 

      i really hope your headache free now or soon. 

      Rebecca

    • melissa37170
      melissa37170 shannon45769

      Posted

      Hi. I suffered a CVST in 2012 after the birth of my daughter. I have had 5 years of pain. I have taken countless meds and and currently taking Botox Injections. If you want to chat more, feel free to contact me.

      Melissa.

    • johnhopps
      johnhopps melissa37170

      Posted

      5 years after CVST hemorrhage for me. Body chemistry will not return to normal. Cant shift the weight. Thigh soreness always for days after certain excercises.
    • melissa37170
      melissa37170 johnhopps

      Posted

      I always wondered about this!! If i dont sleep my body aches likes crazy. I have tried excersing to, im usually so bagged from life that I find it hard to want to add extra ways that will cause fatigue.
    • johnhopps
      johnhopps melissa37170

      Posted

      I would jog alot prior to hemorrhage. First time After the hemorrhage , I walked my dog a mile and legs were sore for 2 weeks. Now I walk on incline on tread mill as more weight is put on calfs and hit boxing bag. Last week I did stationary bike and legs are still fatigued.
    • Tiger12
      Tiger12 johnhopps

      Posted

      It took me 3 years before I started working out after my CVST because I was afraid of setting off headaches. I finally hired a persoanl trainer/nutrionist and she has done wonders for getting me to where I am now. I have completed several 5k's, I am deadlifting 125#, back squatting 135#, bench pressing 65#, and a whole bunch of other things. Everyone is different and as of this June I am 5 years out from my CVST. Sure, there are times when my head is bothering me and I don't want to push it so I don't workout that day, but typically I workout 6 days a week for anywhere from 30-60 minutes. It can range from light cardio to heavy weightlifting. If you want to get back into exercising and can afford it, try a person trainer and explain your background. a good trainer should be able to help you. 

    • johnhopps
      johnhopps Tiger12

      Posted

      Actually, I never got out of excercising. The illness and/or medications especially the steroid dexamethasone which I was on to reduce the swelling of my brain turned my into the incredible hulk without lifting a weight but also put fat on me. I now only do cardio as I do not want any more bulk.
    • heather45340
      heather45340 rebecca60920

      Posted

      Hi Rebecca, I hope you are well. My daughter suffered CVST in November 2016. Her baby was 9 weeks old at the time and she suffered a horrendous headache for three days before waking up and finding that she had lost all feeling in her left side, she was taken to Royal Preston Hospital, where she was assessed. She had a CT scan and it was discovered that she had two clots in her sinus vain in her brain. She suffered two seizures and then was taken to the neurology ward where she was treated with blood thinners through a cannula. She was discharged after 6 days and put on warfarin and Keppra for seizures. On May 5th 2017 she had a repeat brain scan and her blood clots have dispersed..... this past six months has been a journey for all of our family. My daughter although making a fantastic recovery has suffered from horrific anxiety.. coping with a new baby and worrying about every little symptom incase it developed into something more sinister. She has suffered headaches and tiredness too. I actually read your post about two months ago, it stood out to me because my family are all from Birkenhead and my daughter was actually born in Arrowe Park. Your story had so many similarities to my daughter and you actually gave me hope that she too would get better. She is now back at work as a teacher and off warfarin and rebuilding her life. Thank you for sharing your story and giving me belief that it is possible to get over this terrifying experience, that came completely out of the blue. Heather
    • jac84104
      jac84104 heather45340

      Posted

      Hi Heather, i am 11 1/2 post Dural Sinus Thrombosis- misdiadnosed 6 times - almost died in front of my 11 yr old Child. 

      I have been back & forth / numerous ct Scans- since. Anxiety has detroyed me. I wasa fitness Trainer when diagnosed now all i do is cry.

      I get dizziness, tingles, light heade / drunk feeling, tinnitus & more.

      Im a mess. 

      Its a life changing event & i dont care what the Soecialists say - it has life long lasting damage.

      Please hug yr Daughter from me.

      Xx

    • amy94514
      amy94514 jac84104

      Posted

      How long has it been since you were diagnosed? I was diagnosed in October 2017 after having my lower wisdom teeth extracted. I got double vision about a week after my extraction. I had double vision for almost two months, nonstop. Plus the headaches, head pressure, tingling in my hand, depression, and fatigue. My blood clot is/was behind my right ear and was discovered in an MRI w/ dye contrast. It's been almost 3 months and I have improved a great deal. I can finally drive and return to work. I still have a lot of pressure in my head (especially in the evenings) and sometimes get some tingling in my hand. It has been 15 days since you wrote this so I hope you are feeling better. It is a process and I know how you feel. You feel very alone and scared. 

    • Gianna85
      Gianna85 amy94514

      Posted

      You've made good progress in short time, well done. I'm really interested that you had your lower wisdom tooth extracted shortly before developing cvst. I had a my furthest back lower molar tooth extracted about a month before symptoms of cvst- severe headache, numbness and double vision. Did the doctors say this was related to your tooth? Mine thought it was unlikely to be related and cited the contraceptive pill as the cause, even though I'd been on it about 15yrs with no problems. I had my cvst back in August and am still recovering and off work, tired all the time with headaches, head pressure and tingles in hands, legs and nose. Waiting for recent MRI scan results to check progress of clot. Will hopefully be positive news and help with my anxiety over this whole situation.

    • amy94514
      amy94514 Gianna85

      Posted

      My Hematologist believes the extraction caused the clot. He believes the inflammation from the extraction affected the coagulation causing the clot. I was also on oral contraceptives for about two years prior. The tooth I had removed was an abscess and was on the nerve. It was a complicated extraction which I was put to sleep. I’ve been back to work for about month. I have the same symptoms as you but they change day to day.  I hate the tingling in my hands. It scares me. .The nonstop double vision is gone but when I get tired it feels like my eyes could double, if that makes sense. I also get black orbits when working on my computer or in bright lighting. My Hematologist told me the clot causes neurological damage and it takes time to heal. I had a D-Dimer test done but am still waiting for the results.
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