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
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ClaireyApril melanie_11602
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I was never put on Keppra as luckily I never suffered a seizure .
Side effects on Warfarin for me was weight gain & after a while the condition of my hair went down hill 😕 a lot drier etc . Plus I had to go on iron tablets as I'm still having periods so you can imagine on Warfarin you just have really heavy ones which made me anemiac - us women have to watch that on Warfarin.
johnhopps ClaireyApril
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ClaireyApril johnhopps
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Yes ditto ! Why oh why are we always kept in the dark when we're are the patient! ??
ClaireyApril Guest
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I was 48 when I suffered a CVT . I came down with a virus which un be known to me at the time turned to mastoiditis & I remember at the time feeling like I was developing meningitis because the pain in the lower right side of my head was unbearable ! I was being sick couldn't even keep water down was getting severely dehydrated which then had a knock on effect. Ended up seeing an out of hours doctor at the hospital who was going to admit me but she made a phone call to her superior who advised her to give me antibiotics & pain killers , in hindsight I wish they had admitted me because it would have stop me deteriorating.
I felt better but it was the antibiotics masking the underlying problem that was slowly building up & so five days later I'm on a plane going to a hen weekend in Spain on the plane my head began to become excruciating with pain/ pressure I arrived & the girls put me to bed where I stayed for two days getting worse ! They were all down by the pool when I experienced a gun shot go off in my head & I knew instantly I had suffered a brain bleed! I thought if I don't die in seconds than I have a chance.
I told my sister who insisted I go to hospital & I said I just wanted to get home, we were all flying the next day so I got back on a plane !!
Consequently I went severely downhill , went to the doc the next day as I couldn't feel the left side of my face & told him I felt I had a brain bleed on hol & he said I wouldn't be able to walk into his office if I had! he sent me home with anti depressants & beta blockers! Thinking it was a bad migraine I had!
Woke up the next day couldn't speak hammer drill headache so my husband phoned up & I was sent straight to hospital! In A& E they performed a lumbar puncture & confirmed I had suffered a bleed on the brain so was admitted . Put in stroke unit had MRI & a CT scan they missed my clot ! They mis managed my condition as they put me nil by mouth which is the worse thing to do with this condition is to get dehydrated!
Luckily the top neuro hospital in Southampton requested I got transferred & they found I had CVT & saved my life!!
When I came home my doctor phoned up to apologise to me & said that he had never had a patient walk into his office with my condition that's how rare it is so I did forgive him .
Two years on I'm still on wafarin still get headaches but I'm lucky to be alive !! They found I had a genetic blood clotting disorder so the illness, dehydration, flight atiltude all contributed to leading up to CVT!! My two children have to be tested because my daughter has to be monitored if she has the blood genetic disorder if she becomes pregnant.
I hope everyone recovers well, it takes time & patience but it has made me be thankful for life ! So please to have found this site i feel I'm not alone ! X
melanie_11602 ClaireyApril
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ClaireyApril melanie_11602
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I'm still on Warfarin 2 years on ! My haematologist tried to wean me off Warfarin after the first year but I only lasted a week when my headache came back with a vengeance & I needed to go back into hospital where the scan showed a clot but the doctors couldn't tell if it was the old clot or a new one!
So I'm on Warfarin until I am symptom free i.e headache & pressure in the head. It's worse when I'm dehydrated or if I've overdone it drinking whilst socialising & the weather pressure can effect the pressure in my head so much that I long for a thunderstorm 👍😊!
I underestimated how long it would take for my blood clot to dissolve ! The doctors told me they can't give me an answer when it will go as everyone is different & it's too expensive to do follow up MRI scans / CT scans on the NHS in England so it's anyone's guess with just relying on freedom from symptoms .
Good luck with your recovery , you are so fortunate you didn't have a underlying genetic blood disorder X
Tiger12 ClaireyApril
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Sorry to hear that you have been on Warfarin for 2 years! UGH! I hear you though about the weather affecting your headaches as I have the same thing happen with mine. I also can't drink anything but water or I get headaches. I periodically try a drink of seomthing different (lemonade, soda, wine, seomthing even harder than wine), but they all give me headaches. I also get headaches when my body gets overheated.
In talking with my neurologist, she said I am more at risk of getting clots if become dehydrated AND overheated so that is something you might want to keep in mind since you already have a problem with recurring clots.
I don't have a genetic predisposition for clotting, but if you have any questions, I can try to answer them. I have been clot free for 2 1/2 years. I am still on meds for chronic headaches which have now been diagnosed as migraines without the aura.
melanie_11602 ClaireyApril
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ClaireyApril Tiger12
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Thanks for the info & great I'll shall be asking more questions later so thank you for that.
I know I shouldn't drink because I do pay the price but sometimes I just think life's for living & heaven/hell wasn't ready for me !!! Ha ha -
Hope your follow up MRI scan is great news let us know X
ClaireyApril
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ClaireyApril melanie_11602
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I'm not that strict with my warfarin as I should be ! I eat anything drink anything but just in moderation as I'm not disciplined!! I love my food & the odd drink at get togethers with the family- the only drink that needed made me end up back in hospital was Gin! I used to love a Gin & Tonic but that spirit really set off a hammer drill pounding in my head! It was unbearable & lasted hours!!
Anyway I sound like I'm a right lush!! Hee hee - we are all lucky to be here & not disabled , blind etc so I do count my blessings - hope you're MRI results are great let us know X
melanie_11602 ClaireyApril
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ClaireyApril melanie_11602
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Tiger12 melanie_11602
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That is AWESOME news! I'm guessing they are going to start weaning you off of warfarin? Do you still have to go in for follow up visits?
melanie_11602 Tiger12
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I'm not sure, my Nuerologist is supposed to fax over my mri to my Hemotologist. I'm not sup posed to see her until august but I'm not sure what she will do now because my mri came back good. Also she told me that your don't get weaned off warfarin.. you just stop?
melanie_11602
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So I spoke with me Hemotologist today over the phone, she said even though my clot cleared that she wants me to stay on the warfarin until my appointment in august. Is that normal? I thought since it cleared then I would stop taking the warfarin. Maybe it's for precaution? Also she keeps blaming my clot on being over weight so I'm trying to lose about 20 pounds before I see her! I'm not THAT over weight, maybe about 30 pounds. She says it's being overweight and the birth control (depo shot) because no genetic clotting disorders were found. They tested me for EVERYTHING. Also my Nuerologist is going to send me for a eeg test in September to see when I can come off the keppra
Tiger12 melanie_11602
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They may be doing this as a precaution. I was also overweight (about 40 pounds) but they never blamed it on that. They blamed it on birth control (ortho-evra). My family doc told me to lose some weight only because I was borderline pre-diabetic. I wouldn't worry too much about it. They're just trying to be cautious as they don't want this happening again. I can tell you one thing, my doctors will never put me on another hormone medication because of the CVST. So, when I do hit menopause, I have to go through it without the help of prescription meds.
melanie_11602 Tiger12
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Yes my doc keeps saying it was my weight and birth control so I am trying to lose some before I see her so maybe she can see I'm at least trying. I also know that most people who had cvst are on blood thinners for at least 6 months even if the clot dissolved. Also the recurrent rate is very low specially for those who don't have a genetic disorder. Did you have a seizure with yours? I'm sorry if I already asked. There's so many blogs that I look at so I get confused
carrie32745 ClaireyApril
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Hi!
I'm jumping on the thread even I also posted one no one replied
(( boohoo
Sooo I'm very surprised you are still in warfarin
are the doctor really planning on leaving you on it without regular MRI at least to see the progress?
I'm surprised, haven't not told you that in same cases the clots never get dissolved
It doesn't make any difference if it doesn't, mine hasn't and won't, I think they said if there isn't any changes within a year size wise of your thrombosis then it just will stay and become part of the walls of the vein it's at, if that makes sense.
My vein is still obstructed as my latest MRI shoes, and I have done 3-4 now since I got it, May 2015. It slightly got smaller within the first 3 months on warfarin but then since 7 months it hasn't changed at all. Doctors have said that it won't do anything anymore to be in warfarin beside preventing another which may or may not happen. 3% risk of reoccurrence over 6 years period.
But, 2% risk of internal bleeding each year on warfarin.
You can discuss that maybe, I'm in the US so maybe they see things differently in UK.
I just stopped warfarin last week because it was now 13 months I was on it and all research being done, so little sadly, only recommend 6 to 12 months treatment for cerebral thrombosis.
Not saying this to sound scary at all, just trying to give the views that are in the US for the same thing.
It's so scary for me either way but if it wasn't going to dissolved then I would take my chances on being off warfarin and live life.
Prevention like drinking lots of water and stay moving, not constantly but being reasonable.
Since I got told I have contacted all top neurologists and researchers and hematologists and they all pretty
Much same the same. It was up to me to decide to stop warfarin.
I also have a blood genetic disorder which funny enough doesn't make my "chances" higher to get another one so that's the small good news
I hope I didn't sound negative or scary again, just hoping to educate as well from what I hear about it.
ClaireyApril carrie32745
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Hi Carrie,
Oooops sorry I didn't reply to your earlier post , thank you for your information it really is great that we can get advice/ info between transatlantic patients as I think the USA doctors seem to be more thorough as the US citizens pay for private health care , the UK has a wonderful NHS but it is buckling from lack of resources which filters through to the patients & how much time the doctors can give you. Hence why no follow up MRI scans because of the cost ??
I align with what you say & I will try to wean myself off Warfarin but I ended up back in hospital after the first year so I'm a little bit hesitant - the docs here don't like you to be on it for life when you are only middle age they have told me when I'm ready I can choose to take half an aspirin a day for life which studies had shown its just as good but less side effects .
Thanks again Carrie I hope your recovery goes well ????
Tiger12 carrie32745
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Hi Carrie, My clot did dissolve after 16 months of being on warfarin. I don't have a gentic disorder or anything like that. According to my neurologist, I do have a small "scar" where the clot was. I am also in the US and was never told that the clot wouldn't dissolve. We did regular (every 3 month) MRI/MRV scans to keep tabs on the clot and finally after 16 months the scan showed nothing.
When it comes to prevention, yes, keeping hydrated and not becoming overheated are two MAJOR factors. I have also lost weight and become more physically fit.
melanie_11602 ClaireyApril
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Hi, so I have a question. Have any of you had a glass of wine or any alcohol while on warfarin? My 22nd birthday is in 2 weeks and my friends want to go out for a brunch and I was wondering if you guys think it would be alright to have a mimosa or two? I have had a glass of Moscato here and there and it hasn't done anything. Also like I said before my clot has dissolved but I'm still on the warfarin until next month hopefully and I also take keppra 500mg twice a day.. what do you guys think?anyone with experience?
sharon250 melanie_11602
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HI
I am on both those drugs I didn't drink for two years but now have a few drinks. Alcohol lowers your seizure threshold so I have been wary to push it. I make sure I drink plenty of water for few days to stay hydrated. I miss having a good drink every now and again and do get tempted to try my luck!! x
Tiger12 melanie_11602
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I don't drink just because I get headaches from any type of alcohol I do drink (this is a new thing since the clot). However, to answer your question, They really recommend you not drink while taking Warfarin if I remember correctly (it's been 2 1/2 years since I've been on it). If you do decide to have a drink, I would make sure to drink plenty of water the next day.