Cerebral Sinus Thrombosis

Hi, I was diagnosed with the same Venus sinus thrombosis. Did they put him on blood thinners? They put me on blood thinners right away called Coumidin along with shots.  Did they do an MRI or a MRV ? They also told me to relax and no strenuous activity. I had to do blood levels every day to monitor the blood thinner level so not to get too thin to cause a rupture, and to not get too thick to cause the clot to get larger.  I actually did have a hemorrage about 2 weeks after I was first diagnosed and had to have emergency surgery which saved my life. Please stay on top of this because it is very dangerous. If you have anymore questions please let me know. God bless!!! 

Hi, thanks for you reply. They haven't put my son on any blood thinning medication, when I asked my gp why, she just said that the neurologist does not think he needs it as he hasn't had any headaches since the first major seizure. He had a ct because he cannot have mri due to having a cochlear implant in his head. How long ago were you diagnosed and how old are you (if you don't mind me asking!) did the haemorrhage happen whilst you were on the blood thinners? Hope you are feeling well now, thank you once again for your comments, take care x

I'm confused with what they are doing to help the thrombosis. I was diagnosed with a "cerebral venous sinus thrombosis" just over 2 years ago. I had suffered intense headaches for 3 days in which they were progressively getting worse and one of my doctors sent me for a CT scan. The results showed the Cerebral Venous Sinus Thrombosis and I was immediately sent to the emergency room where I spent a week in the hospital being monitored for seizures and strokes. They had me on heparin while in the hospital and then started switching me over to Coumadin (the pill form of the blood thinner) just before I was to be released. I was on Coumadin for 14 months beore they took me off of it because the clot had decreased in size enough to where the doctors were comfortable that the clot wasn't going to get any bigger and continue to slowly decrease in size. They did the blood test on me and the result for that test came back negative so it was something else that caused my CVST. 

In regards to the exercising, working, new symtpoms, etc, I was advised at first that since I was on blood thinners not to participate in any weight lifting, etc due to the ability to easily bruise/bleed. I suffer from chronic headaches as a result of the CVST which is managed by medicine. As of today, I can only walk, ride a bicycle, or ride a stationery bicycle as anything further will cause headaches (only because if I do much more and my body temperature rises, I risk getting headaches). I do work a full time job as a teacher so holding a job is possible. 

I agree with Cindyjmk, please stay ontop of this and don't let the doctors try and push things aside. If you don't like the answers from one doctor or get a bad feeling about one, then switch, please. your sons health is way too important and your intuition will tell you. This site has been a great help for me so please feel free to ask as many questions (as menial as you may feel they are) as you want. We have been there and done that. 

 

I know you asked Cindyjmk this but I was 45 when I was diagnosed. In my opinion, I would get a second opinion about putting him on blood thinners. Did they say how long it would take the blood tests to come back? I'm guessing they are checking his blood to see if he has a predisposition to clotting. And if the blood tests come back positive, will they then put him on blood thinners to keep the clot(s) from coming back? Just a question to ask your doctor(s).

 

Welll, I am still chasing the gp to get the blood tests done, he says one has to be authorised by haematology so we're waiting for them to get back to us. I think I will ask the gp to refer for a second opinion as I'm still confused why he isn't in hospital on blood thinning medication! Were you still experiencing headaches when you were put on the heparin? I am so glad I have found this site, thank you for taking the time to reply back to me. Take care x

They put me on heparin immediatly upon entering the hospital. Where do you live if you don't mind my asking? I had to go see a hematologist when I got out of the hospital and she told me that once I was off blood thinners for a certain time period, I should come back for the blood test. So, since your son isn't currently on blood thinners, there should be no wait time to get the test done. I would keep calling to find out why the wait. 

I was 50 when I found out about my clot. So it's been coming up on a year now. Had gone to the ER cause of bad headaches. Admitted me immediately and started on blood thinners. They monitored me closely but I still had a hemorrage. My surgery was on Dec 5, 2013. I still have years ahead of me for recovery. I also am extremely limited what physical and mental capabilities I have. Still suffer from headaches although not near as bad as before. My balance is still off. When I get tired my speech is more noticeable. I still can't drive of course. My life is still so far from who I was before although I know I am extremely lucky to be alive. My headaches also get worse when I exert myself or get hot too. My clot was down 98 percent back in April when I had my last MRI. So now I'm off of the blood thinners. I would totally stay on top of your sons condition. My gp didn't handle mine, my neurologist did. Maybe that's a thought. Good luck!!!  

Hi, I  in UK. I have just heard back from our gp that my son has to have his blood tests done tomorrow. Thanks for your help, I'll keep you updated.

I'm so sorry, it sounds like you have had a pretty rough time of it. Thank you for sharing your experiences, it really helps to speak to other people on here who can offer advice and guidance. My son is having his bloods done tomorrow so I will keep you updated on how things progress, look after yourself. 

Hello. Sorry to hear about your son. I was also 23 when i got diagnosed with this last year. Im in the ul too but im very shocked that he's not on any kind of blood thinning medication!!! I suffered major headache 3 days before ct showed 6inch blockage i  my head. They treated me that day starting me on warfarin and fragmin to stop me from clotting any further. I was told i was very very lucky and told it could of ended in stroke or death if left a day longer. Sorry to worry u but your son should be in hospital on medication. Keep us posted x

Sorry meant to say im in the uk too

Hi, thanks for your reply. Just wandered if it's because my son has no symtoms at the moment, I know there is a lot on controversy about whether to give blood thinning medication as it could cause a further bleed. He has his blood tests tomorrow so hopefully we'll have the results soon. Did you find out what had caused yours and have you fully recovered now? Take care x

I had mine at 16 with a haemorrhage and seizure, I'm now 18, and was on blood thinners for 6 months after until the risks outweighed the benefits - but even as non professional I'd say this that I felt alot more at ease being on them because I knew it lowered my risk. I hope your son is coping okay, especially as he's so young, I know having to think about everything I do now when my friends are having fun is a massive problem as it affects thing like my stamina alot. I'm from the UK aswell. 

I had complete blockage of the jugular which is now about 95% clear as of the last scan back in March. I feel for everyone here especially you younger ones because you do have to watch yourself. I get headaches when I exercise too hard, when I let myself get too warm, when I dont drink enough water, among many others. I live in the states and it seems to me that it is a little easier getting what we need done over here (although I may be wrong with that too). I do know that this forum has helped me drastically so keep in touch. Someone will be able to answer a question you have eventually. 

Hi Worrier!

I'm sorry that happened to your son. It's been 10 months since my clot, when I was 24 years old, so I can understand your situation. 

However, I don't understand, as you, why the doctors consider that your son didn't have the symptoms to take anticoagulants. In my case, I had headaches for 10 days too and the seizures occurred in the hospital. It's true that I presented too an ocular papiledema but I think the anticoagulants are primordial in order to break up the clot.

I took anticoagulants for 6 months and then I had the blood tests. I visited the neurologist two weeks ago and he told me I'm heterozygous. Nowadays, I'm clear but I continue with the headaches (I had migrain before the stroke) and I'm going to end the antiepileptic (Epanutin, fenitoin) in two months (the birthday of the fisrt crisis).

In your case, I think maybe they take the blood tests before prescribe the anticoagulant but you should visit another doctor to have a second opinion because it isn't normal...

Good luck.

The hematologist did a d dimer test on me after 6 months when I came off the warfarin. After it came back normal he took me off the med and told me to take a full aspirin daily which I've done for almost two years now. I had a month of thunderclap headaches and in the e.r. twice I was diagnosed with an ear infection and released. My clot in the brain then caused a hemorrhage and I was caput. 

I didnt have any major symptoms though just a bad headache. Normally seizures are classed as a symptom. I hope he gets sorted please let me know. Yes i think with my age i recovered very well i was off the medication after the clot had dispersed after 6 month. I am now 23 weeks pregnant with my first baby. I live a normal life with no side effect to my clot x

Oh and no they have never found out what caused it. They said my contraceptive pill could have been a major cause x

 

That's very reassuring that you are now fully recovered and lovely that you are expecting your first baby, congratulations! My son had his bloods taken this morning so hopefully we will know more when we get these results. Look after yourself ...and baby x

Thank you Like i said i think i have been very very lucky and the care i had from the anticoagulation here in Hull East Yorkshire was brilliant. I didnt do very well when i was on the Warfarin my levels was constantly up and down! But i stayed positive and had a full recovery- no one knows if i could clot again which i could or i could just have same risks as any normal person. I really hope he gets his results soon as time is golden when suffering with this... tell him to rest and take it easy drink LOTS and LOTS of water until he finds out xx

 

Thank you Like i said i think i have been very very lucky and the care i had from the anticoagulation here in Hull East Yorkshire was brilliant. I didnt do very well when i was on the Warfarin my levels was constantly up and down! But i stayed positive and had a full recovery- no one knows if i could clot again which i could or i could just have same risks as any normal person. I really hope he gets his results soon as time is golden when suffering with this... tell him to rest and take it easy drink LOTS and LOTS of water until he finds out xx

 

Danielle, that's exactly what they told me. the blood tests came back negative so they are blaming the birth control pills.

 

Prayers for your son this morning. I hope you all get some much needed answers. Please keep us up to date as to what happens. 

Ah really?? yeah all mine came back clear too!

I guess it's more common than they want people to believe. Congrats on your first baby!

 

Yeah- not long after mine i kept reading in the paper about young girls sadly passing away with a clot due to the pill. Its getting more common now! Scary! Aw thank you I think with all that i've been through it made me realise that life is too short and you have to do all the things you want to do, so me and my bf of 7 years decided it was time x

 

Thank you Worrier5 for your kind words of encouragement.  My doctor said 98 percent of people who have what I had don't even survive. I am one of the lucky ones. My surgeon said my hemorrage was so powerful that the right side of my brain moved 2 inches to the left side. He didn't think I would make it until even they could thicken up my blood to do the surgery. He said part of my brain right now is like a 3-4 year old but that is temporary. He predicts full recovery in approx 3-5 years. To answer someone else's question, I forget who, they seemed at first to think birth control caused mine. Another suspicion was dehydration. In the end, although they did take me off of birth control immediately, they seen to think it was getting dehydrated that did it. I've noticed also my headaches are worse to this day if I don't drink enough water also as someone else said. Stamina sucks!!  Coming up on a year now and I still can't bend over to do anything. That causes headaches and loss of balance. I can't really do much housework, my job, drive, laundry, anything that exerts me. And I still haven't found a single person who had a bleed and had surgery.  Also I had stroke which I found out goes along with bleed. I am just simply a lucky girl. God is good!!!  I thank him every day for getting me in the right hands of my surgeon who saved my life. Please do keep us posted on your son's blood tests this morning. I'll be watching. And for all the rest of you, God bless you!!!!!

Just wandering how many ct scans you had and how far apart they were, my son had one when he first went to A&E after his seizure on 3rd September and I was thinking I would like him to have another, even if I need to pay. I will definitely tell him to drink plenty of water, thanks for that advice. Take care. x

I had really painful head pains for 2 days before going to A and E. Once i got seen to the took some blood and i started been sick so they sent me down straight away for a CT scan. i had one then they did another with some dye injected into my blood and had another. i sat for half hour and waited for the results then got called in and told the news i was told i had to get straight into a hospital bed and started treatment straight away! I was in for just over a week before i was let home. I was still not with it when i went home after about 3 months i started to feel a bit more myself. I then had an MRI scan after 6 months of treatment to check if it had dispursed- which is had. then came off the meds. I have still been under a specialist since i go ever 5 months to see him and have a catch up etc. I am sooo suprised he hasnt had one yet as seizuers are the biggest symptom with clots! sooo shocked x

 

Hi Worrier5, I was just wondering how your son was doing? any word about the tests?

Hi Worrier5, I'm also wondering how things are going with your son??  

Well he had the c/t when he was in A&E after his first seizure and another c/t with the dye is scheduled for mid November. At the moment he seems to be okay, he hasn't had a headache for two weeks and is just adjusting to the Epilim medication. We are hopefully getting the results from some of the blood tests tomorrow so I will keep you updated. Take care x

Hi, well he had all the blood tests taken on Thursday so hopefully we will get some results tomorrow, I will let you know. Thank you for your concern, look after yourself x

Hi, sorry I've not been on here over the weekend. My son had the blood tests taken on Thursday and we were told some results may be back tomorrow, I'll let you known if we hear anything. Thank you for your message, look after yourself x

Cant believe they are spreading it out over time for him to have the checks etc. Im glad he us doing well at the minute. My advice is if he gets the slightest headache or feels bit ill then he needs to go to A and E straight away. Might push them to do the scans! !! X

It does seem a long time apart, I might ask if we can have one sooner, I know the neurologist wants to give it time for the clot to be re absorbed. I will definitely take him to A&E if he gets the slightest symtom! x

Good keep us updated x

Hello all, Ive just had a good cry that I have found a current forum with real stories that mirror how I feel.

I am 28 and live in East Sussex, UK. I gave birth to my second child 10th Sept 2014. On 18th of Sept I was on day two of terrible headaches and suffered two seizures. I was taken by ambulance to hospital and immediately treated for eclampsia with a magnesium drip. *Touch wood* I have not suffered any further seizures in the two and half weeks that have passed but I am still so anxious that I will. I underwent a CT scan whilst in hospital purely because a junior doctor suggested it - Thank god. We were initally told it was clear until another doctor reviewed it and found an "extensive sinus thrombosis". I was treated in hospital with 5 days of clexain injections and now warfarin for the next 6 months. I spent 8 days in hospital before beinging discharge with a few lines on a bit of paper which gave a diagnosis and treatment plan but did not state how I am to manage day to day, what can I do or not do.

I feel so alone, the headaches can be unbearable unless I have oramorph on top of paracetamol and I feel like the doctors are not sure what to say to me re the future. My Gp says he has never treated anyone with what I have and the neurologist saw me at my bedside whilst I was still unwell for all of two mins - the rest of the care came from the medical team. I am scared to be left alone with my 3 week old and 5year old incase I seizure or fall ill, and no one will tell me what my risks are. I feel weak and so emotional. My eyes feel strained and I have been told I have swollen optic nerves but must wait for an appointment to review. 

I feel grateful for the fact that I am here alive and didnt have this clot for as long as some of you poor folk but scared of the unknown and sad because it is affecting my relationship with baby, husband and 5 yr old who is traumatised by seizure. 

This is the only forum I have found but am looking for support and answers if anyone has any sites they could link me to?

Thanks

Zara

Hi Zara!

Aw bless you. I felt the same i felt so alone and scared the internet didnt help with me sat trying to research it as it came up with death and made me worry even more! 

This forum is great. You can chat to real people who have had the same thing. Its nice to hear reassurance too as most doctors dont know much about it i know mine never and i struggled to understand what was going on and why.

Try not to worry and try to get your life back on track with hubby and baby as the medication will keep you safe. Keeping your blood think will stop any further clotting or current clot getting worse and in time should naturally disperse. Mine did within my 6 months of warfarin. 

Did they say what caused it? Im guessing it was pregnancy/birth as this makes any woman high risk. Its all the hormones! 

Please keep positive and dont be afraid to tell us your feelings or worries thats whst we are here for.

Im 24 and had a clot last yr from my pill. Ive

Sorry my phone crashed! Ive been off meds now since dec after my clot had gone and now currently 25 weeks pregnant. 

Danielle x

Hi Danielle, 

Feel a bit of an emotional wreck at the moment so its so nice to hear from people with experience or currently going through it! Congratulations on the pregnancy! Im becoming braver each day but the anxiety will suddenly take hold and I'll break down again. 

I saw about 5 different doctors who all gave me different answers until I was transferred to medical ward. Some say I developed eclampsia after birth as I was tested for pre eclampsia several times due to high blood pressure but it was never a positive result until day 8 post partum when I had seveal seizures but some doctors are ruling that out but offering no other answers! 

Did they offer you any practical advice? Ive not been told what to do about driving or anything. All I got was use common sense, dont bath or swim and always leave your bathroom door unlocked.

Hi, just to keep you updated ...my son had all his blood test back and no sign of any genetic reason why he has this. He was taken off the Epilim and put on Keppra 250mg twice a day due to his platelet count plummeting to 47! Now his fingers and hands have started to get blisters and peeling of the skin as a reaction to this medication ...just wandered if anyone else has experienced this? 

I hope your headaches are finally being managed and you're feeling a bit better, take care of yourself x

Hi, just reading back through the messages on here to see if anyone else is on anti epileptic medication and if they have any side effects. Do you know the medical reason why you were told to drink lots of water? My son was also told to do this but wasn't given a reason why!

i hope you are feeling well, take care x

The reason I was told to drink lots of water is to keep hydrated. I stil lget the headaches but I do find that they are not as intense when I drink as much water as I can in a day. Hope this helps. 

Hello!

Hope your son is doing ok? Yes was told to drink 2 ltr of water a day. Dehidration can cause a blood clot too i was told. They either said mine was from that or my pill but was aiming more at the pill.

I am fine hope you are too x

 

Is your son okay??  I was on Keppra.  It made me extremely aggressive and violent.  No joke!!!  I was taken off because I got so frustrated that I became suicidal. My doctors also think dehydrate caused my clot. 

Same with me Tiger12. 

Danielle, after ruling out the genetic predisposition to cloting, they are blaming my clot on the pill. I 

Hi, well he's not had any headaches for about 6 weeks now but he's very forgetful and tired, it's hard to know which are effects of medication or symtoms of clot. He's on Keppra 250mg x 2 at the moment after being taken off Epilim due to his platelets going very low to 47, the only effects so far are peeling skin on his hands and fingers. Are you on any medication at the moment? Hope you're feeling well x

Hi, he is ok, still taking the anti epileptic meds which I think make him a bit forgetful, or maybe it's the clot? Said he had some neck pain at the weekend and I was a bit worried but it seems to have gone now. It's really difficult to distinguish which are new symtoms of the clot and which are side effects from the Keppra tablets. I'm constantly nagging him to drink more water and I think it's working! Thanks for the message, it's good to hear you're doing well, look after yourself x

Hi worrier,

I have private messaged you!

Just as I was leaving the consultant with a prescription for keppra I saw your post!  He hasn't given me any directions other than a slow increasing amount over the next month. 

Zara