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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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  • Ahmad.M
    Ahmad.M Guest

    Posted

    Hello everybody,

    I'm 18 , currently I'm suffering from CVST (left transverse & sigmoid sinuses and IJV)

    After 2 weeks of having an extremely painful migrane that's accompanied by pain down my neck to my shoulder and sensitivity to both light and sound ,

    I had an MRI scan followed by MRV and both confirmed the presence of the clots.

    The doctor prescribed Xarelto(rivaroxaban) for me and I have been on it for almost two months with no significant improvement (only the light/sound sensitivity is gone).

    So.. when do I expect enough improvement to be able to be going to college ?

    doctor didnt find what caused the cvst , but could it be extreme stress ?

    • Tiger12
      Tiger12 Ahmad.M

      Posted

      Hi Ahmad, 

      I'm almost 4 years out of having my CVST. Mine was on the right side and was a complete blockage of the juggular. My CVST occured then end of June and I teach, so it didn't disrupt my work schedule at all. I was able to return to work in August. I still suffered from headaches and had to watch how warm my body got because if my body got too hot, the hedaches increased. 

      I wish I could give you a time frame for when you would be able to return to college. I was able to manage my headaches with motrin and aleve and I am also on multiple other medications from my neurologist to help manage the headaches. I still suffer from headaches but they aren't as bad or as frequent as they used to be. 

      Any other questions that you have, I can try to answer.

    • Ahmad.M
      Ahmad.M Tiger12

      Posted

      thanks for replying ,

      I would be truly grateful if you made me a list of what else to avoid to prevent the headaches from increasing

    • Tiger12
      Tiger12 Ahmad.M

      Posted

      Hi Ahmad, sorry for the delay in responding. I also tend to get headaches if the weather changes so there is nothing you can really do about that. I also have to make sure I drink enough water as I have noticed that when I lack water intake, my headaches increase. That is really about it with me. I don't know if anyone else has any othe ways they prevent their headaches, but for me again it's making sure I drink enough water and watching how hot my body temperature gets. I hope this helps. Any other questions, please feel free to ask and I hope I can help. 
  • melanie_11602
    melanie_11602 Guest

    Posted

    Hi all! Is anyone still following? I'm 21 and was diagnosed with superior sagittal sinus thrombosis almost 3 months ago. Before being diagnosed I had headaches on my left side of my head for about 4 months so I went to my doctor and he ordered a cat scan which cane back negative so he just told me it was tension head aches and prescribed me pain killers. A couple weeks after that I had a seizure out of the blue. Was rushed to the er where they did a mri and found the clot. I was put in the icu and started heparin. I was admitted for a week, then discharged with warfarin. Since then my inr levels have been up and down, and no more seizures thank god! I'm also on keppra to control seizures. I see my Nuerologist in June and I think we are going to do a mri to see the status of the clot. I'm still so scared of having another seizure, I have a 3 year old which I stay home with everyday so it's very scary being alone with him since this whole thing happened. I'm supposed to be on warfarin for 6 months, so let's see what happens. Such a scary experience! Glad I found this site! !
    • johnhopps
      johnhopps melanie_11602

      Posted

      Yes we do follow. What happened to you was very scary. The Keppra will slow down any abnormal activity. The clot will dissolve. The ER failed to find my clot with a regular CT scan also. A CT angiogram is what would've found it. My vein actually ruptured and bled in brain. Slightly different. Anymore questions don't hesitate to ask.
    • melanie_11602
      melanie_11602 johnhopps

      Posted

      Oh wow, thank god you're ok! With my situation I didn't have a hemorrhage, which is good. I still have some head aches here and there but it's only been not even 3 months since diagnosed so I guess that's still to soon for all symptoms to go away. How long did it take yours to dissolve? I'm hoping on my next mri I have some good results
    • johnhopps
      johnhopps melanie_11602

      Posted

      The clot was absorbed by the brain. I had brain swelling sue to the hemorrhage and was on steroids also to help reduce the inflammation.
    • melanie_11602
      melanie_11602 johnhopps

      Posted

      That's great it was fully absorbed. I heard sometimes the clot never goes away and you just basically have to live with it. I hope mine fully absorbs also. In my case I had no bleeding or swelling, I guess I was very lucky! These situations are very traumatic and definitely life changing
    • johnhopps
      johnhopps melanie_11602

      Posted

      Don't think there's "living with the clot" . That is too dangerous as it can always break away and travel to lungs/heart. The warfarin which they call blood thinners don't actually thin the blood. They prolong the time the blood takes to clot. Your clot will gradually dissolve.
    • Tiger12
      Tiger12 melanie_11602

      Posted

      I am also still following. I was 45 when they discovered my clot. I had a extremely bad headache behind my right ear for 3 days when I finally went to the doctor because I started having an upset stomach that went with it. She said I was too old to have my first migraine and sent me for an MRI. This is when they found a fully blockage of my juggular and they sent me straight to the ER. I was in the hospital for a week while they did other tests and put me on heparin. They then put me on warfarin and discharged me. I was on warfarin for about 18 months before the clot dissolved and I was able to come off it. My neurologist ordered periodic MRI/MRV's to keep tabs on the clot and because I still suffered from headaches. I understand your fear, and like johnhopps said, please do not be afraid to ask any questions. 

      Just as an FYI, I didn't suffer any consequences folrm the clot other than minor headaches which are controlled by meds. My neurologist said it's nothing to worry about. I exercise like everyone else and do everything everyone else can. I just have to be careful not to become dehydrated and overheated because of the possible recurrance of my venous sinous thrombosis. Other than that, I can do everything everyone else does. 

      And and far as I know, they should keep you on a blood thinner until the clot is gone. Double check with your neurologist on this. And don't be afraid to ask them any and all questions. If you don't feel comfortable with your neurologist, don't be afraid to find a new one. I "fired" one and found a new one that I absolutely love. She will answer any and all questions I have and not act like they are stupid. 

    • melanie_11602
      melanie_11602 Tiger12

      Posted

      Good to hear that you fully recovered. Same here I haven't had any problems besides the clot thank god for no bleeding or anything! How are your doing now after the clot?
    • Tiger12
      Tiger12 melanie_11602

      Posted

      I still suffer from minor headaches which they classify as tension type headaches. They are managed by daily medications and aren't too bad. There are times I think I have a built in barometer as I can tell when the rain or snow is coming just by my headaches (lol). Since the clot my body has had a very hard time regulating it's temperature. I run warm all the time (even in winter) so I have to watch how hot my body actually gets so I don't overheat. If I do overheat, I get a headache that sidelines me for about 2-3 days (I'm not hungry, I'm tired, I'm warmer than usual). I work with a persoanl trainer that knows my history and has been phenomenal in helping me lose weight and get back into shape while keeping my headaches at bay. 

      Just recently my trainer wanted to know if there was any more risk for me with getting warm and my headaches than the typical person. I asked my neurologist and she said that there is a risk of return CVST with dehydration and getting overheated. So be careful with that. 

      I'm glad to hear you haven't had any additional problems. We are quite lucky! Please feel free to ask anymore questions. I will be celebrating 4 years at the end of this June. 

    • melanie_11602
      melanie_11602 Tiger12

      Posted

      That's cool you could sense the weather lol. It's great you don't suffer from to many effects from the clot. I've read some scary stories from people like us and I consider myself very lucky. I haven't had a second mri yet so I think I'm getting one in June. Hopefully it shows something good. It's been almost 3 months since I've been diagnosed and most of my headaches went away. I just really suffer from being tired because of the keppra. Sometimes feeling weak also. I will definitely update after I get my mri. Paint for some good news!
    • Tiger12
      Tiger12 melanie_11602

      Posted

      I too have heard many scary stories and consider myself very lucky. The clot was discovered on the day of my husband and my 20th wedding anniversary. What a way to spend out anniversary, in the hospital with a full blockage of the juggular not knowing what was going to happen next. Thankfully my doctor thought outside the box and sent me for the MRI when she did and literally saved my life that day. Keeping my fingers crossed for you that you get good news in June! Keep up updated. 
    • melanie_11602
      melanie_11602 Tiger12

      Posted

      Oh wow that's nuts! I was putting my son in his car seat when I suddenly fell over and started having a seizure. Thank god my friend was there because if she wasn't I don't know what would have happened. I went to the er with the ambulance and that's when we discovered the clot. Very scary time for me! My clot was also extended into a cortical vein and my Nuerologist said that's what caused the seizure. I definitely will keep up to date on everything. Do you know what caused your clot? They did so many tests on me to see if I had any type of disorder that makes me clot naturally but everything came back negative except my protein s and protein c came back a little low but my Hemotologist said that could be caused by the warfarin. I was also on the depo birth control shot, but that has no estrogen in it and it isn't really common to cause blood clots. So I'm not really sure what caused mine.
    • johnhopps
      johnhopps melanie_11602

      Posted

      When I went to the ER they said my ear canal was red and probably had an ear infection. It's possible the ear infection traveled to sagital sinus vein then clotted.
    • melanie_11602
      melanie_11602 johnhopps

      Posted

      Yeah you know what's crazy, I also had ear pain. I went to the doctor for that also (before I knew about the clot) and he just told me I had to clean it. It's crazy how these clots are misdiagnosed alot of the time. Like I said my CT came back negative, so if I never would if had a seizure that day I would if still never knew about the clot. I'm just thankful it was a seizure and not a stroke!
    • melanie_11602
      melanie_11602 Cindyjmk

      Posted

      Really? Did you notice any signs of dehydration prior to finding out about your clot?
    • Cindyjmk
      Cindyjmk melanie_11602

      Posted

      Well, my legs and feet got all swollen and started getting bad headaches and my blood pressure went up.
    • Tiger12
      Tiger12 melanie_11602

      Posted

      They also did the blood tests to see if there was any reason for the clot and they all came back negative. They are blaming it on birth control so since I wasn't going to have any more kids, they took me off of it and they aren't giving me any mreo medications with etrogen in them. I had been off and on birth control since I was 25 and had no prior issues. I was completely healthy so that's the only thing they can come up with. 
    • melanie_11602
      melanie_11602 Tiger12

      Posted

      Yeah basically same thing here, no other reason but the birth control I would say. After this experience I probably won't ever get on birth control again. To risky.
    • Tiger12
      Tiger12 melanie_11602

      Posted

      It's a shame though. They say that clots only happen in only 1% of the people who take birth control. I guess we may be part of the 1%. I'm glad I don't have the genetic predisposition because that means I didn't pass it to my daughter and son and they don't have to get tested for it. I'm just glad you are okay and suffered no more than the seizure. After reading some of the other posts here, we really lucked out. 
    • melanie_11602
      melanie_11602 Tiger12

      Posted

      Oh yes we definitely lucked out. I've read many stories where people nearly died. Its weird because most of the stuff I read it seems like people all of a sudden develop a really bad headache and that's when they find the clot. But my head aches went on for about 4 months before they found the clot. I'm so surprised with it being in my vein that long it didn't rupture or cause more serious problems, 4 months is a while for a blood clot to be there without treatment.
    • sharon250
      sharon250 melanie_11602

      Posted

      I have had a nightmare since mine three years ago. Mine went to a bleed and full stroke, had seizure at time and another three month later. I have a scar on the brain now get terrible bouts of dizziness and being unbalanced. My vision went cloudy In one eye last week on way to work. I am on warfarin for life and epilepsy drugs that are horrible. It has been an absolute nightmare and wish it all would just stop. Every time I feel like I am getting somewhere I end up back at hospital again with something to do with it. I am a single parent now, was a nightmare learning to walk talk and use my right side again and look after a three year old. I truly curse the pill and every day wish I could turn back the clock and not take it. It truly has wrecked my life. If you have been left with no after effects then you have been very fortunate, I know psychologically it's hard but if anyone has fully recovered truly be grateful and enjoy life as I am still battling every day just to be normal. X

    • johnhopps
      johnhopps sharon250

      Posted

      Hi Sharon. My medical condition went as far as yours. Although I appreciate everyone's response, most of the people thankfully didn't experience the hemmorhage part like you. I did also. I had a clot in the sagital sinus vein then hemmorhaged in the left temporal lobe. I was literally on my way out like you. I'm interested in sharing post stroke symptoms and body changes with you. Thank you

    • ClaireyApril
      ClaireyApril sharon250

      Posted

      I too suffered a brain bleed ! , two years on I still suffer symptoms ! A whoosing  swimming effect sometimes , hammer drill headaches etc - on my low days I feel sorry for myself as it seems I'm never going to be symptom free ?? - but then I think I've been lucky to survive this ?? 

    • johnhopps
      johnhopps ClaireyApril

      Posted

      To date the illness still somehow has taken my fitness level to the drain. I'm big in muscle and fat. Used to be very lean. Haven't changed diet and exercise. Off the Keppra warfarin and dexamethasone.

    • ClaireyApril
      ClaireyApril johnhopps

      Posted

      Yes I've come through this journey a different person mentally & physically ?? I underestimated the effects of the CVT plus the Warfarin ??- but what doesn't kill you only makes you stronger ??

    • Tiger12
      Tiger12 ClaireyApril

      Posted

      I didn't suffer a brain bleed but I do agree with you in what doesn't kill you makes you stronger! I really lucked out with mine in that they caught it soon enough. I did spend a week on the stroke ways and they were doing stroke checks I swear every hour. One symptom I keep forgetting to mention is a continual ringing in the ears. I didn't have it before and it appeared after the CVST. They still don't know why but it's something I will have to live with the rest of my life along with the chronic headaches (which are manageable with Motrin and aleve, along with a few prescriptions). I can deal with this as well as I am healthy otherwise.

    • sharon250
      sharon250 ClaireyApril

      Posted

      Yes I can't believe it's three years and I am still nowhere near right. I feel spaced out a lot, dizzy and get unbalanced for weeks walking then o.k. at other times. I panic that might have another seizure and the keppra is awful I am so volatile on it but when they tried another drug after three months of the clot it caused two more seizures so I put up with the side effects to control the seizures. Are any of you on kappa and drink. I only have a couple but would love to have some good night's out and have more? Xx

    • johnhopps
      johnhopps sharon250

      Posted

      How bout soreness after doing maneuvers you don't do much or soreness in the thighs. I ran 9-12miles per week prior to the hemorrhage. A month after coming home from hospital I walked my dog a mile. For the next two weeks my thighs were very very sore. It's been 4 years and although somewhat better , not the same.

    • ClaireyApril
      ClaireyApril Tiger12

      Posted

      Yes I have constant ringing in the left ear as my clot was on the right all my left side was effected . Also it seems silly but I can't even look at things that are moving fast because it makes my head go swimmy ?? -

      I had a brain bleed but luckily not a seizure so I'm very fortunate not to be put on Keppra-

    • ClaireyApril
      ClaireyApril johnhopps

      Posted

      Hi John,

      It's very difficult to determine my weakness now just down to my CVT as I had suffered from M.E ( Chronic fatigue syndrome) for the past 8 years & just as I had started to feel better I had the clot so it's all intertwined now .

      I have to pace myself , so I do some chores then rest I can't do things back to back without it bringing on a drain ??

    • ClaireyApril
      ClaireyApril sharon250

      Posted

      I suffer from dizziness at times especially if I'm stressed , dehydrated etc .

      I love this forum as I thought & felt like family , friends etc couldn't even begin to understand ! I've had two conditions in my life where the symptoms are felt more on the inside (like people can't see a rash or broken leg etc) - M.E ( Chronic fatigue syndrome) & CVT! I've lost friends because I've changed so much & I grieve for the old Claire I used to be ??

    • johnhopps
      johnhopps ClaireyApril

      Posted

      Yeah. I've hid myself from friends cause I don't wanna here oh you gained weight. I don't want someone to be the straw that breaks the camel's back. I respond I got sick was put on meds and the weight never came off. I do all the same. I could tell that people just don't believe me. I rather see people who only know me post hemmorhage.

    • ClaireyApril
      ClaireyApril johnhopps

      Posted

      Yea illness can change your world & the people in it - I tell everyone about CVT especially the nurses who check my INR levels as quite alot of medical staff haven't dealt with this condition - I had one student nurse who wanted to know all about it , I was glad to tell her as you never know knowledge about it might save a life

    • melanie_11602
      melanie_11602 sharon250

      Posted

      Why are you still on keppra after 3 years? Do your have eegs that are abnormal?
    • sharon250
      sharon250 melanie_11602

      Posted

      I had seizures at the time then my arm went funny three months after when digging in the garden a and e thought muscle spasms but Neuro said could have been seizure as there is a scar from bleed. He changed my drugs then the night I took a higher dose I had seizure where my jaw locked up four months after stroke. He said I need to stay on it. Originally I was told off warfarin and keppra in six months to a year. Three years later still on both. My moods are terrible on it can be fine then just sink so low out of the blue ....it's mad lol xx

    • johnhopps
      johnhopps ClaireyApril

      Posted

      I bought one of those 4 foot put together pools and was crouched alot to keep the water at my shoulders. My thighs are tired/sore from that. That is permanent damage the hemorrhage has caused.
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