Cerebral Sinus Thrombosis
Posted , 71 users are following.
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
melanie_11602 Guest
Posted
Hi all, as you know I've experienced a blood clot in my superior sagittal sinus 6 months ago. However my recent MRI showed the clot has dissolved and they don't see any scarring either.. I did not suffer a hemorrhage, just a seizure which left no damage or anything.. Anyways I'm still on blood thinners, I have an appointment next week with my Hemotologist hoping to come off the thinners, this will be my 6 month of treatment. My question is has anyone still had headaches post blood clot? I still have some pressure headaches right in the back of my head sometimes. I've read that headaches are common after having a clot.
shannon45769 melanie_11602
Posted
Hi Melanie, they found my blood clot in the brain in February and when I had another scan in June the clot had dissolved. I still have really bad head pain and nothing is stopping it. I can't cope anymore.
Funky_bartos Guest
Posted
I didn't suffer with headaches at all to begin with,my vision was strange tho,I felt as if i was looking through somebody elses eyes.I had been out drinking on a Sunday evening back in 2010,I had what I thought was a 4 day hangover.I had a shower and was getting ready for work when my left arm started flailing uncontrollably! I hit the deck and I knew I had had a seizure! I phoned for an ambulance and the operator thought I was drunk and playing a prank,I eventually got to hospital and was told I'd just passed out and was sent home,an hour later I was sat talking to some friends explaining what had happened when all of a sudden I hit the deck again,my friends made my mum aware that I had suddenly stopped talking and luckily my sister was at he to drive me back to the hospital! This time I had smashed my face and bit my tongue.I spent 7 weeks in that hospital bed under one of the top Neurologists in the UK.I was prescribed anti seizure medication and put on fragmin and warfarin,I will be on the warfarin for life but I am struggling with other effects since,I had crippling headaches for the first 18 months but rarely get headaches at all now.Despite it being 6 years ago it's everyday things that are getting to me,I still can't get my driving licence back because nobody can decide whether I'm safe or not,despite being seizure 3 since 4 days after the initial one,also I'm having a job trying to find out whether I can fly or not,nobody seems to know or want to make a decision, it's taken over my life but not in the way you'd expect!
melanie_11602 Guest
Posted
Hello, I hope some of you are still following this discussion.. well I stopped taking warfarin today after 6 months for a cvt.. I'm a little scared because I feel like my guard is down and I have nothing protecting me from getting another clot. Does anyone have any advice? Anything I should look out for? I'm nervous
Tiger12 melanie_11602
Posted
Hi melanie, I was the same way after stopping the warfarin. Thankfully I had very good doctors to fall back on any time I had questions regarding this and didn't get fristrated any time I came into the office with symptoms. I was still suffering some pretty severe headaches when I came off the warfarin as well as some pretty bad tenderness in the area of the clot. My advice to you would be to keep vigilant on how you feel. You know how you felt when you had the clot so if anything changes, go back to the doctors and make them listen. But don't be so vigilant that you don't enjoy life.
melanie_11602 Tiger12
Posted
Hi all, I hope you remember me and my story. I am now 9 months post cvt. I'm off thinners since august and was doing great for a while. Until last week when my anxiety went off the roof. I've been having a weird feeling in my ears. It feels like they want to pop. It's on and off, not constant. Barely any pain they just fell like pressure in my ears and sometimes around my nose. This been going on for about 2 days now. I'm trying to stay calm. Everytime I feel something not right I automatically think I have another blood clot.
Any advice on this?
Do any of you experience ear aches after thrombosis?
Its very scary to think about another clot and it's giving me severe anxiety.
Anything will help. Thank you
Lillylee melanie_11602
Posted
Hi Melanie! When I finally got off of Warfarin months ago and on to baby aspirin, every time I experience a migraine, they automatically scan my brain. I think that's just how it's going to be from here on out. They have to make sure it's just a migraine.
As for the ears....I've lost hearing in my left ear (clots were entire left side of brain) and I have a constant, loud ringing that drives me crazy. I notice when I get stressed out the ringing gets louder and I can hear a "whoosh" sound sometimes. I go in to an ENT to run tests every 6 months. It's unfortunate, but it could have been so much worse of course. But I would absolutely suggest seeing an ENT for your ears. They will run tests (they're easy) and you get immediate results. At the very least, to put your mind at ease.
shannon45769 melanie_11602
Posted
Hi, I stopped my Wafarin and then in four weeks developed another clot in my lung(PE). I'm now on Wafarin for life
Tiger12 Lillylee
Posted
I have also suffered loud ringing in the ears since the clot was discovered now almost 5 years ago. They still can't figure out why the clot caused the ringing and at first the ENT asked me if I had the ringing before the clot. When I told him no, he got a puzzled look on his face. I do have hearing loss at the highest level in both ears (the clot was behind my right ear).
I just saw my neurologist in January and I still have tenderness behind my right ear. She is confident iwth my knowledge of my head now that she is letting me "play around" with the dosage of one of my meds to see if we can get it to a lower amount. So far I have been able to decrease it by 300mg but my head is having some issues going down an additional 300mg. I would love to be off my meds completely, but every time I try to lower my meds, the headaches start to come back more so than usual.
maham06574 Guest
Posted
Hi, i was diagnosed with cvst this August. The symptoms i went with were twitching on the left side of my face from my eyebrow to my collarbone. Turned out that my Cerebral pressure was raised and after mri and mrv i was diagnosed with cvst and early stage pappiledema. I was admitted and put on clexane injections for a week and then on xarelto for 3 months. I had my mri last week and it seems that the clot has dissolved even though the pressure is still slightly raised and there are prominent extra cerebral spaces and the pituitary glad is also being suppressed. My neurologist has put me on loprin for a month and told me that I'm good to go. However, the twitching still continues and has now become more frequent, even though it had lessened considerably before. Now, instead of just twitching, the left side of my face gets stretched and paralysed and my left eye completely gets shut.
Wondering if anyone else can guide me about this situation?
lisa08398 Guest
Posted
HI
looking for some advice. My sister was diagnosed with CVST 2 weeks ago after losing the feeling in her right side she went to A&E who did a cat/MRI scan and that is where she was told she had quite a significant clot in the vein of her brain. She was transferred to another hospital were they did a further 2 scans (MRI & CT I think) and they said the clot was big (taking up 80% of the vein in the brain) she was hospitalised on the Friday and when visiting on the Saturday with my family she had a seizure which was petrifying for us, her headache was very severe and she had really bad light sensitivity were she could only speak to us with her eyes closed. After the seizure she had another one that night but since then (2 weeks this Saturday) she hasn’t had another. They have discovered she is very anaemic too and has a terribly low B12 deficiency which they said could be linked to the clot in some way. She has been in just over a week and her headaches are still really bad, they have quadrupled her dosage of morphine to see if it will stop the vibrations in her head.
Any advice? The doctor has told us the clot is really big but *should* be treatable. What is your experience like? If you don’t mind me asking? We are all extremely scared she is only 37 and finding it really hard to deal with.
How long were you in hospital?
Any advice or anything would be appreciated.
Thanks
Lisa
Lillylee Guest
Posted
Wow, it is amazing to find people who have had this! To talk to! May of 2015 I had CVST in the transverse sinus, saggital, sigmoid sinus and internal jugular veins. (The entire left side of my brain was one big continuous clot). I had the worst headache of my life - felt like my brain was going to blow up (It was kind of!). Thanks to the small miracles of everyone involved, I was on heparin quickly and lived to tell the story, instead of someone finding it on autopsy, like what unfortunately happens too many times.
I'm going to Disney/Universal soon and I'm a roller coaster fanatic. I called my hemamtologist and he said no roller coasters. Anyone venture a guess as to why? I'm on baby aspirin now (finally off of warfarin). I have Factor V Leiden. Was taken off of contraceptives when the clots happened.
I did suffer hearing loss in my left ear and have constant loud ringing. (Same side the CVST happened). It's so hard to find information about CVST. But I was wondering if anyone had asked their doctors about the dangers of roller coasters? I'm guessing that with possible scar tissue, making an already tiny vessel narrower, that with the bumping of the head on the ride a piece of scar tissue could dislodge and clot somewhere? Or hemmorage? Since it's the holiday season and the docs are all busy, I was just relayed the info from the doc's office person, so that's why I'm not sure on the 'why'. Just know that I can't.
I'm excited to find you all! All of you unicorns! :-)
Tiger12 Lillylee
Posted
Hi Lillylee,
In 2012, I suffered a right transverse sinus, sigmoid sinus, and internal jugular CVST (complete blockage of the juggular). I also had the worst headache of my life and thankfully my doctor sent me for an MRI that day and caught the clot and sent me straight to the emergency room. They put me right on a Heparin drip and I also lived to tell the story.
The only things I suffer from as a result of this is High frequency hearing loss and ringing in both of my ears. I also still suffer from minor headaches (which are manageable through medications and watched by my neurologist). I was given the blood tests to try and figure out why the clot occured and all results came back negative so they are also blaming contrceptives (which they pulled me off of as well).
In regards to the roller coasters. I am also a roller coaster fanatic and last year went to Disney. I checked with my neurologist about going on them and she just said to be cautious. She told me that I could go on them, but if they ended up giving me a headache, to stop. She said that the banging of the head against the pads would cause a headache, but that would be about it. It took her until about 2 years ago to give me the go ahead to fly on an airplane (didn't want me sitting too long for fear of clots forming in my legs) so maybe because you are only a year ad a half out from your CVST, there could be the reason you gave? I'm just saying that I rode the coasters at Disney and only suffered some minor discomfort. I was really careful to try and not let my head bump around too much during the rides (I know, it's VERY hard to do that, but possible).
Any other questions, please ask!
Lillylee Tiger12
Posted
Thanks for your response! It's so crazy that we had very similar situations, just the opposite sides of the brain! My doctor had no problem with flying after a few months, but a hard NO with roller coasters. Strange. And I have had problems with flying for sure. It was hard to do Disney without the fun of the roller coasters!
Did your doctors give you any info as to when you're "in the clear" as far as another clot occurance? I take the d-dimers and they come up elevated and it freaks me out. Any time I have unfamiliar pain in my legs, chest or even head, I have to get it scanned. So much MONEY!!! Do you know of anybody on the forum that's had a second clot?
helenvf Lillylee
Posted
I've read somewhere that within 2 years is quite common to have a repeat clot. Even when the clot has gone the brain still takes a long time to recover from the damage.
carrie32745 Lillylee
Posted
Hi,
It will be 2 years in May that I had mine in the brain.
I had actually few tiny clots, veins are so small in brain it's common to have few ones apparently
I'm in California, and one of the neurologist who's following me and do research about clogs and brains said that it does happened there is reoccurence, but it's rare, and she knows because that's her line of work so she will always see those cases versus a regular doc who wouldn't.
There's no way to predict or nor it's healthy to keep wondering, trust me I have been down that road and I have a predisposition for it as I have a blood mutation
But I went 42 years within any then got this one, rare in the brain, so I take that now as a warning to be healthy and do my best to prevent, that's all I can do.
Prevention she told me are, drink lots of water, stay well hydrated, not overly of course but stay hydrated.
Move, that's important, don't stay seat for hours on end.
I'm taking multi vitamins higher in omega and fish oil which are good for fluid the blood. Not sure it doesn't much but a little tiny help wouldn't hurt
I eat my greens of course
Yes of course you never know what will happens, maybe another one or not, but it's best not to focus on this as it will eat you up.
I also very headache and numbness at times in leg or else and right away get paranoid. I actually had last week pain in the same exact spot where my clogs were in the right back of my head and panic because it was spot on, after few days my. Neurologist said ok MRI and it came back just fine, personally I didn't get so lucky my clogs are still there but now part of the veins wall, apparently it's common they don't always dissolved with warfarin or other blood thinner, sometimes they stay and the veins just make it works.
Complexity of the human body I guess
Wish you luck and all the best