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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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  • Tiger12
    Tiger12 Guest

    Posted

    Within the last month I have started suffering headaches on a regular basis (like every day). I went to my neurologist and she gave me an injection of a nerve blocker right behind the right ear (which was where the blood clot was) which had helped in the past. This time it didn't help but a few days after the injection, I came down with a bad sinus infection and double ear infection so we thought that might have something to do with the pain. The headache didn't go away even with the antibiotic for the infections so my neurologist ordered an MRV with contrast. That test was done this past Thursday and the test came back negative for any further development for clots which is a VERY good thing. What I'm wondering is if any of you have found anything that is giving you relief from your headaches? I take 2 ALEVE and it barely cuts the pain, FIORICET takes forever to work and also barely cuts the pain, MOTRIN hardly works and Tylenol doesn't work at all. I see the Neurologist on Monday as well as an ENT on Monday (I have had severe ringing in the ears since the development of the CVST 2 years ago and I want to see if anything can be done about it). Sorry for the long poat, but I'm desperate to see if anyone has the same probkem I do. 
  • mikeh62
    mikeh62 Guest

    Posted

    52 year old male. I was diagnosed just over a month ago and I have to say, very efficiently. My symptoms were quite mild and so I felt worth posting.  I saw my GP after a week long mild headache and she agreed to refer me to a specialist. I had no other symptoms. I was fortunate to have private health cover available and was seen within a week. A week later I had an inconclusive MRI and a few days later a CT venogram. I kid you not, the specialist phoned me at home (from his home) about 4 hours later and had me drive straight to a local specialist neurology unit at an NHS hospital to be admitted. I went on heparin over night, with blood pressure and other checks every hour. I then had injections in the midriff followed by Warfarin, which I will be on for 6 months, followed by another scan to check the lots have been reabsorbed. I was back at work after 3 nights in hospital and a week at home.

    Each Dr & Neurologist I saw took me thru the normal physical tests and could not believe that all muscles seemed to be under my control and reacting normally. It really was just the headache that I could have happily lived with. I remember just one day feling pretty bad, with a worse headache but that was all.

    So it all happened very quickly because of private medical cover. Without it, I would probably still be waiting to be seen and lord knows where I could be.

    I get some mild headaches, but not enough to justify painkillers.

    I consider myself very lucky indeed.

    Good luck to all felloe sufferers of the rare and easily missed condition.

  • Cindyjmk
    Cindyjmk Guest

    Posted

    Hi Mike!  You are indeed lucky!  Be very cautious while on Warfarin.  I was also on and had a major bleed in my brain and a stroke.  I wish you well!!!  smile
  • mikeh62
    mikeh62 Guest

    Posted

    Well that wiped the smug grin off my face! neutral

    No-one has told me what to look out for while on Warfarin other than actual bleeding and bruisng without an obvious cause or 'the worst headache I ever had'. Do you know of any other tell tale signs of potential problems?

    I would always prefer to know as much as I can rather than sticking my head in the sand (probably not the best choice of words!)

    • johnhopps
      johnhopps mikeh62

      Posted

      With me the warfarin wouldn't raise my inr between one and two no matter how much they gave me. They changed me to the brand name and it worked. It also made my obliques grow and no matter how much I exercise the weight won't come off 2 years later. Good luck 
  • hums1
    hums1 Guest

    Posted

    Hi. I've just been diagnosed with cvt. after suffering from horrible headaches. Being treated with anti coagulants   Supposed to take them for 6 months. I'm 51 and pretty fit. Probably got it due to oral contraceptives.  Was wondering what care I shd take. Activities etc. I used to do yoga. But doctors advised me against excercise.    But I'm still confused as to what I shd be doing and what to avoid     
    • johnhopps
      johnhopps hums1

      Posted

      I don't see anything wrong with exercise once the clot has dissipated. My vein in head ruptured after clot blocked it. I had to wait til Dr's were confident vein wouldn't reopen. After that I continued exercise while on coumadin. Jogging may at first cause head pain that will linger a bit. I recommend a non impact excercise like stationary bike or treadmill ( walk with incline ) not run.
    • Cindyjmk
      Cindyjmk hums1

      Posted

      I was diagnosed when same when I was 50. Put on Warfarin. Was in hospital for a week. A few days after coming home from hospital I had a hemorrhage/stroke and nearly died. Had to have emergency brain surgery to save my life as soon as they thickened my blood back up. So be very very cautious!!!!
    • Tiger12
      Tiger12 hums1

      Posted

      I was diagnosed with a cvst when I was 44 and in the hospital for a week.  They also suspect the cause to be oral contraceptives. It was three years ago and I have just now begun to exercise again with the help of a personal trainer. I would advise you to wait on the exercise until you are off the anti-coagulants for sure as they will make you more suseptible to bruising. I wasn't clear of a clot until 1 1/2 years after the diagnosis but I still suffer from minor headaches. I see my neurologist every 6 months for medicine checks and when asked previously about what exerices I could do, she said anything that wouldn't give me a headache. Up until now, everything but walking and riding a bike would cause headaches. My advise to you is to take it very slowly. I agree with johnhopps, nothing with impact as that would cause jiggling in the head and that would definitely cause headaches and possibly more issues. I can't tell you how many MRV's I have had because they couldn't figure out why I continued having headaches. They wanted to make sure the clot wasn't reforming others weren't forming, but that isn't something you want to go through. Listen to your doctors. I couldn't even do yoga as the movements bothered my head. Your body will tell you in time what it is up to doing. 
    • Tiger12
      Tiger12 apples98

      Posted

      I get tenderness and occassional twinges behind the ear where I had the clot, but other than that, no. Since the CVST, I have severe ringing in the ears which they can't figure out why either. I have been to an ENT and he can't figure out why I would have that as a result of the CVST. I do have some hearing loss at the highest frequency which he says may be the cause of the ringing, but he doesn't feel the CVST caused the ringing. 
  • Ritz16
    Ritz16 Guest

    Posted

    Hi There.. Iam Ritu from India and suffered same as you have mentioned...how do you feel now. Has it relaosed again?

    Pl do share your experiance and medications

    • apples98
      apples98 Ritz16

      Posted

      Hi did you ever find out anything that made you feel better I kind of have the same symptoms
  • Tiger12
    Tiger12 Guest

    Posted

    Hi Ritu. I am actually feeling really good. I am about 99% headache free. I typically only get headaches when my body gets overheated or when there is a huge change in barametric pressure (like when there are storms coming). I have been exercising now for 4 months with being able to keep the headaches at bay with the help of my personal trainer. She has been a great help in all of this as she looked up my condition and learned about it before we started working together. If she has any questions about it, she asks me and if I don't know the answer I send an email to my doctor and ask. I also let my trainer know if any of the exercises bother my head, but so far so good. I think the stronger I get, the less likely I have that they will come back from exercise. I am extremely cautious not to let myself get overheated. The clot itself hasn't come back and according to the doctor, they don't expect it to come back. I am on two different medications for the cost. The first one is gabapentin (otherwise known as neurontin). The second one is topiramate. The doctor has prescribed a pain medicine for when the headaches get really bad but I haven't had to take that in months. It's called butalbital/acetaminophen/chaff tabs (otherwise known as fioricet). 

    I hope oped this helps. Any more questions, please ask. 

  • Bubaloo
    Bubaloo Guest

    Posted

    Hi I have recently had a cerebral venous thrombosis and would welcome some advice.

    I have been on anticoagulants now for 2 months and the dizziness and nausea are much better. However I am still having headaches every day. I am still waiting to see the consultant neurologist but the advice via email is that they think the headaches are not due to the thrombosis but due to migraine and I should avoid all pain killers because of the possibility of medication overuse headache.

    so I am struggling with pain but also with a feeling that the specialists dont seem to take my symptoms seriously.

    has anyone else had this experience ?

    • johnhopps
      johnhopps Bubaloo

      Posted

      I suffered from a cvst hemmorhage. Clot closed vein then vein ruptured in head. Drs are probably correct when it comes to using aspirin with warfarin as aspirin is a blood thinner itself. I would take acetaminophen (Tylenol) which doesn't thin the blood. Don't use more than the daily max though.
    • Tiger12
      Tiger12 Bubaloo

      Posted

      Hi Bubaloo, 

      I had a CVST 3 years ago and was on blood thinners for 1 1/2 years. I still have lingering headaches but when the CVST first happened, the headaches were constant. The first neurologist I had I couldn't stand so I asked my family doctor for a recommendation and she sent me to the doctor I currently have and I absolutely love her. She has me on prescription pain killers if I need them and has no problem with me taking Tylenol, Motrin, Aleve, etc.. My neurologist isn't calling the headaches migraines but yes, they are related to the CVST. All of her patients like me are suffering from the same headaches and she isn't quite sure why. I am still on a nerve blocker and another medicaine that has reduced my headaches deeply. The medications I am on are Gabapentin and Topiramate. I very rarely need the presription pain killer anymore. 

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