Cerebral Sinus Thrombosis

Hi , I would be SO GRATEFUL if someone could reply to this.In a nutshell , for the last 7 months I have felt dreadful- headaches , fatigue , eye problems etc .I was sent for an MRI which I was told by my G/P was normal .I paid privately to see a neuro and he said MRI normal , no neurological problem - maybe sleep apnoea ?!! I thought that was a daft suggestion and so I kept my NHS neuro apt which by now had come round .To my surprise when I said to him " I do know I have benign arachnoid cyst " he said with emphasis "No you do not ! you have a Venous Sinus ." This was the day before yesterday .He gave no explanation and I was hurried out the door with him saying you may have pressure in your skull but also I think you may need your cortisol level testing . I went for the blood test yesterday , have no further appointment with the neuro booked ,and am sat here wondering what the hell is a venous sinus ? have I had a stroke .? will I have stroke ?

I woke up in 2011 with a huge blood clot on my pillow that my G/P just shrugged off ,and between then and the last 7 months of hell , I haven't had any head problems .

I have felt better this last 2 weeks but now I am wondering what on earth is a V/S ? it'll be a bit before I can ask My G/P as I have to wait for my blood test to come through .Meantime - anybody got a clue ?( I am flying in December too !! )

very grateful for any answers

Lemmony

Hi! So glad I found this site... im a 23 yr old female who was diagnosed with this 6 months ago. I was enjoying the last few days of my holiday in Turkey when I had sneezed and from that sneeze got a headache in the left side of my head at the time it was mild and just shrugged it off.. later that night I got really sharp pains in my left ear then a really bad headache... the worst I've ever experienced!I cried the whole time I had this pain pressure feeling in my head... My head literally felt like it was going to pop. I managed my flight home in agony and went straight to a and e. Wasnt until I was sick they decided to do a ct which showed a 5cm clot in the left side of my venious sinus. The doctors told me what they had found I was so scared they told me I was lucky not to have had a stroke.. I spend 6 days in hospital then was sent home and on warfarin for 6 months n thats it no explanation to all my questions of how or what was going to happen to me was horrible. After 6 months of my warfarin inr up and down I recently had my mri on 4th of dec just got my results back and its cleared im now off my warfarin back end of jan for a follow up.

all the time I had this I was sooo scared I kept googling am I going to die etc. Its do scary to go through and wish id of found this site to help me and not feel so lonely.

I was on the oral contraceptive pill which they took me off when I was first diagnosed... other then that dont know what caused it.

I still suffer with a bit of a twitchy left eye every now and again which I think was caused my the clot... but apart from that I feel fine.

ide of my venious sinus. The doctors told me what they had found I was so scared they told me I was lucky not to have had a stroke.. I spend 6 days in hospital then was sent home and on warfarin for 6 months n thats it no explanation to all my questions of how or what was going to happen to me was horrible. After 6 months of my warfarin inr up and down I recently had my mri on 4th of dec just got my results back and its cleared im now off my warfarin back end of jan for a follow up.

all the time I had this I was sooo scared I kept googling am I going to die etc. Its do scary to go through and wish id of found this site to help me and not feel so lonely.

I was on the oral contraceptive pill which they took me off when I was first diagnosed... other then that dont know what caused it.

I still suffer with a bit of a twitchy left eye every now and again which I think was caused my the clot... but apart from that I feel fine.

I hope my little story helps someone who was just as worried as me.

x

Hey, my CVST was diagnosed on the 30th March 2011 at the age of 22, I was rushed to A&E in an ambulance after having a headache for 3days the hospital only done a MRI after my mother told them that blood clots run in my family (Sister, cousin and two uncles) this is when they found 3 clots (2 on the left and one on the right)

I had lumber punctures done and was moved to a Neurology Hospital where I spent a whole month, some times i slept for 2-3 days at a time, I couldn't shower/wash my self, I was pricked with needles 4/5 a day, surgeons were speaking about inserting a shunt (which i wasn't very keen on)

My eye sight deteriorated due to the pressure on my optic nerve, double vision and sometimes sight going completly.

I had a D-Dimer test done and my test came back to reveal that i was not at a risk of getting any more clots (I was given this information at a doctors appointment) the next day i was in A&E and was diagnosed with a DVT of the left Calf.

I've been signed off work since April 2011, due to my headaches, eye sight, forgetfulness- most days i'm fine but then others I have to debate if A&E is the best place to go or just sleep it off.

So yes, two years down the line and i'm pretty much the same as was back then!

Sorry for the rant, people don't understand what i'm going through when they haven't gone through it themselves.

Hi Leanne so sorry to hear your story. I can understand it must be so frustrating.

Are you permanent on warfarin then to stop any more clotting?

I have been off the warfarin for a couple of weeks now but im the back of my mind I worry if it will return because they dont scan or anything once its cleared??

Im back for a follow up with Neurological at the end of jan and some blood tests I think.

atleast you can come on here and talk to us who understand

Hello forum support group,

I was diagnosed CVST in October 2013 and since then taking wafarin. I am so scared whenever i have headaches now, i feel i am going to have a stroke or die. How can we be sure that taking wafarin should take care of our condition? Did anybody have any problems even after taking wafarin? Should i go see a doctor whenever i get headaches? Please help!

Nisasa

Hi Nisasa

As long as you are on warfarin the clot cant get any bigger and no other clots can form

I use to get slight headaches when my inr levels dropped below what they should be this was every time I was

on my period. But first few months after I started my warfarin I still got slight headaches

Doctors told me that if I get a headache to take paracetamol and if it goes with

taking them then not to worry but if the headache continues then go to docs.

x

Thanks a lot, Danielle, for your quick reply. Your reply helped me sleep through the night.

Hi nisa. In May of 2012 I had severe headaches and went to the er twice just being diagnosed with an ear infection. A cat scan without contrast missed a clot in my sagittal sinus vein. On June 7 my wife found me.having a seizure in bed after the vein ruptured. At 33 non smoker eat well excercise a lot my life was almost over . That same hospital that missed the clot stabilized me and was transferred to nyu langone . I was on warfarin for 6 months and all hemotology tests came up negative for clotting. I now take an aspirin per.day. You will be fine . Thankfully they caught yours.

Hello john, thanks a lot for your message. You cannot believe how much it means for me. Just so nice to see somebody replying you and support you. Thanks! Why do you take aspirin per day? My doctor did not say that to me.

Almost the same thing happened to me. After severe headache one day, they did a not contrast CT scan and could not detect anything. After couple more emergency visit, they did not do MRI. After a week when i said i am still miserable, they did MRI and found a 6cm clot. I am just lucky that the clot did not rupture but, I am really surprised and and angry that they did not do MRI soon enough. Anyways, I pray that we all get better sooner than we think.

How often do you go to check you blood for INR level? What steps do you take to maintain your INR level? I do not take any food with high vitamin K as I am not that organized to have equal amount of vitamin K every week. So for 6 months I decided to go with very less vitamin K level food.

Good wishes vibes to you!

I take an aspirin because im off warfarin .

I live in the US and was diagnosed with a CVST back in June of 2012. I had a headache for two days but never went to the doctor about it. On the third day, it was bad enough that I had my husband take me to the doctor because I knew so something wasn't right. She told me that I was to old to have my first migraine (I was 45) and sent me for an MRI where they found the clot at the base of my brain. I spent a week in the hospital and then spent the next 16 months on warfarin when another MRI showed the clot was gone. Since then I have been suffering from minor headaches across the back of my head but mainly on the right side where the clot was. I'm in constant contact with the doctor and we are playing with meds to try and get rid of them. My friends say that since the headaches are in the back of the head they are stress headaches, but I know that isn't right. Anyone else suffer from constant low-grade headaches?

Hi Tiger12 my CVST occurred in 2007 my side-affects were headaches which are trigged by changes in the atmosphere they can be low grade for days then get stronger... Two years ago I had another MRI just to make sure nothing else was underlying and it was diagnosed as migraines I was surprised at this as I always thought migraines where different from what I had but it was explained that migraines cause a swelling of the blood vessels.....so I now take a migraine preventative daily medication and I have to say it has changed my life. The consultant explained that it takes time for the injury your brain suffers to heal and where the clot was sometimes there is a weakness and pressures such as the atmosphere can cause migraine headaches. Its worth keeping a diary of when you have the headaches and what the weather is like I know it sounds mad but when it was suggested to me I laughed but after 4 wks you could see the pattern of headaches was linked to the atmospheric pressure. Hope this is of assistance

I’m from Spain, I have 24 years old and last November I suffered a cerebral thrombosis. The reason, at first, the contraceptive tablets (Yasmin and Dretine). I started taking them in June 2013 for medical prescription. I was diagnosed with PCOS (polycystic ovary syndrome) and the gynecologist prescribed me pills. For five months I didn’t have any side effect.

From the night of Halloween I was ten days with headache, earache, pain in the neck and pain in the eyes in addition to have vomits. I was two times to the hospital but only they were centring on the vomits, and they said I had a gastritis. There was a day that I didn’t vomit and I took the opportunity to go to the ambulatory for the headaches but the doctor could not tell me the cause of these symptoms and I was diagnosed with sinusitis. That night I had to go to hospital after I fell my left hand ell asleep and, for a few seconds , also the left arm and neck. Again, I was given Omeprazole and made me a blood test. Everything was fine until, when I was going to be discharged and as I put Paracetamol, I had a seizure. I was referred to another hospital where I was diagnosed with cerebral venous thrombosis.

I was 20 days in the hospital, 10 in the UCI and 10 in plant. They treated me with heparina, fenitoína and acetazolamida (also I had papiledema). The first two weeks after discharge I was with strong headaches and blurry vision, I went to the ambulatory scared and they derived me to the hospital. There they made me an angiografía and said to me that everything was going to better, the thrombus was falling apart and it was re-canalizing.

After three months I'm with warfarin and phenytoin. Papilledema disappeared so I stopped the treatment with acetazolamide. I still have bad headaches almost every week. I'm dizzy every time I go by subway or bus or I take an elevator. I have memory problems and my thoughts goes much slower (I remain several seconds thinking about saying something). Occasionally I notice tingling in the face, hands, arms or feet. I have many bruises on the legs by medication.

Also, I'm a student of some languages and now is impossible for me to go to class: it's difficult to me to attend very much, do tests and, especially, do oral exercises with companions because I have the sensation that I'm stupid because it's difficult to me to express very well and they don't know anything of what has happened to me. I'm afraid of having another thrombosis or another epileptic fit. It's hard to live like that. And in my environment nobody understands me. Everyone tells me that I looks good, I shouldn't be afraid because all the evidence says I'm improving and it's normal to have these symptoms because I'm still recoverin ... Everyone tells me that it looks good to me, I should not be afraid because all the evidence says that improved, it is normal to have these symptoms because I'm still convalescent. But the feeling of emptiness that has oneself not to be the same person that I was before is incomprehensible by others. It's for that I'm very glad to find this site, where people like me can understand me.