Cerebral Sinus Thrombosis

Hi all. Just an update on me. Everything the same. Have to go for a 48h our EEG for my 2 year anniversary. I'm still on keppra. No seizures. My legs are still sore because I do cardio. I guess they'll never fully heal. The weight from the tons of meds I was on still hasn't all come off. I doubt it's the keppra since I'm in a really low dose. Later

Hi all just wanted to update you all on how im doing!

So its been 9 months since my clot in my brain (venius sinus thrombosis) I got my mri results back at christmas which showed that my clot had gone yeyyy! I then went for lots of blood tests in feb to check for sticky blood etc. Those do take a while to come back but I am assuming nothing was found as I have to go for a check up chat in 5-6 months.

So for those who are currently sat worring... dont stay positive and keep smiling. I hope everyone else is doing ok?

Me and my boyfriend are doing to start trying for a baby now ive got the all clear... which means when im pregnant I will have to have the nasty fragmin injection again I suppose its worth it!

Danielle x

That is great you doing so well, it is a long journey to get back to normality for sure after being so ill. I have not been so lucky, although I am lucky to still be alive, three months after I had a partial seizure that affected my arm. They introduced another epilepsy med but that made me have two seizures where my speech went funny. I stopped the med and took a higher dose of keppra instead even though it makes me grumpy and dizzy and feel spaced out. I have had genetic tests all clear, however they are now talking about me staying on warfarin forever which was never mentioned before, they originally said a year as they said was the pill which caused it. I have a four year old so having scar tissue epilepsy from the bleed is not good as I am nervous I will have a seizure when looking after her.I am trying to re sit my uni exams but the stroke after effects and the epilepsy drugs make it hard to think straight or take in lots of info. I expected a good recovery but has been a rather bumpy road, it has though been seven months since the seizures, I just pray that there will be no more

Sorry to hear that Sharon.

I was very lucky to have caught mine early I was told I was probably hours away from a stroke which could have had life changing changes.

please stay strong x sometimes I think just coming on here and speaking to people in the same boat can make you feel much better.

I have everything crossed that u have a speedy recovery x

Yes thank god they found yours before the stroke, I would not wish it on anyone. It is great you are moving on with your life now, I wish everyone that has suffered this illness all the best for the future as it is very scary. It really does make you appreciate life a lot more! It is amazing how many young people are suffering strokes, I had no idea until I started reading up after my illness.

I think the immediate care is good but I have been pretty much left to it since, trying to raise a four year old when most of the time I feel terrible. It is weird I can have a couple of good days where almost normal then a week of bad days where I am dizzy unbalanced and bad headaches. I do not know if it is still the after effects or if it is the warfarin and the epilepsy drug keppra.

Anyway here is hoping for everyone that the good days get more frequent and the bad days less!

We. all had some serious bad luck. When someone thinks theyve gone through something bad but it really isnt that serious I laugh to.myself and say they dont even know what bad is. Cheers to all. We need to all have a virtual get together on facetime or similar and have a few drinks.

Did you have fits or anything Sharon?

I feel fine now with no side effects. .. I do panic when I get a slight headaches but they soon go.

the only thing I suffered with for a few months was a twitchy eye at the same side as my clot and also earache at that side.

Yeah John I never moan about a cold or flu anymore!!!

Ive found ready everyones stories that everyone was affect in different ways ive not come across anyone who had a thunderclap head pain like me??

Big hugs to everyone x

I obsessed about a minor headache after. Was so afraid. The thunder claps were so bad. It hurt tilting head to tie shoelaces. It all started from ear infection.

I'm glad to read that everyone seems to be improving. It will be two years for me the end of June and I am still only able to walk for my exercise. I tried doing the rowing machine and yoga but had to stop due to an increase in headaches. It seems that any kind of exercise that involves some form of jumping, weights, or upside down causes more headaches. I will be seeing my neurologist on the 18th of this month and I am going to be discussing this with her to see what she says. I also plan on discussing with her why the change in my body temperature since this happened. I have run very warm since the clot was discovered and it's getting quite frustrating.

I also plan on asking her when I can fly again. I have been on a no fly ban since this whole thing started due to the possibility of increased headaches.

Any suggestions for exercises? Does anyone else have this issue?

I am good with ex but I have major soreness if I.work.out legs or do stepmill or jog. The thighs cant take.the brunt of impact. I can bike and hit.boxing bag. I.stopped doing weights cause for whatever reason.I put on a total of 30lbs or fat and muscle combo. I.do.cardio.and dont.eat much. The decadron and.coumadin blew me up. Im only on keppra at a low dose . Im.gonna ask doc to.change to topomax just in case its the keppra causing that side effect. I used to get headaches after excercising but no more. I have flown also. 3 1/2 and 2 1/2 hr flights. no.issues.

Yes I had a seizure at the time just as I got to A and E. I then had a seizure three months after and they said it was from the scar tissue that formed from the bleed. So no driving for a year after the seizure. Not had any more for seven months as on higher dose of keppra 2000 a day, but still getting loads of symptoms that come and go. Side effects from keppra are horrid. Just been for more bloods this morning as been really dizzy and finding it hard to walk in straight line and tired and back aching loads.. This has happened before and I was vit d deficient as epilepsy drugs can deplete levels I also got loads of leg pains too. This improved on the supplement. I stopped the supplements few months ago so I am hoping it is that again. I fully expected to be back to normal by now as been eleven months, but it just seems to go one step forward two steps back. My patience is getting tested to the limit!!

I am trying to resit uni exams I missed last year but even revising for an hour is hard and I cannot concentrate, so no way could work at this moment in time. My energy levels are good one day and I think great I am better, then I will feel rubbish for the rest of the week. It is post stroke fatigue I was told. Just looking after my daughter wears me out. Fingers crossed things will improve quickly. I am pleased to hear of everyone that is doing well it gives me hope for the future.

Hi everyone I'm so happy to have found this discussion board!

I developed a CVST when I was 37 weeks pregnant with my son.  I came down with the worst headache I've ever had and went to the antenatal clinic where they tested for pre-eclampsia and iron/protein deficiency etc. All tests came back negative and I was sent home with pain killers. This went on for a week I kept going to hospital and being sent home until they eventually agreed to do an MRI scan - obviously risky being pregnant but at the time I felt like I was going to die!

The scan picked up a brain abnormality called Chiari Malformation which was at first blamed for the headaches. I was told I'd have to have a c section on Xmas Eve 2012 as giving birth naturally could have killed me!

So I had my baby and stayed in hospital for a few days  before going home. I ended up in A&E a week later as the headaches had been getting worse. I had another MRI where the blood clot was finally picked up (I've since learned that it was present on the first scan but not picked up on as they'd focused instead on the abnormality which isn't even life threatening) 

It's taken almost 18 months for me to start feeling normal again and even now I still suffer with anxiety and depression, although these issues have improved a lot since insertaking cognitive behaviour therapy.

The hardest part for me was have to spend a few weeks in hospital after having my son and have to leave him at home with his dad and my mother in law and this is what I had a really difficult time coming to terms with - I think I spent almost three weeks in hospital in tears and being a new mum my hormones were everywhere as it was!

I'm now back at work part time although I'm doing shorter shifts and I'm really lucky that my employers have been amazing and have really helped with my return to work. In a way I was lucky that it happened when it did because I had over a year off work in maternity leave so I had plenty of time to recover before having to go to work again but I do still have bad days and have neck pain and headaches.

I was prescribed amitriptyline almost a year ago after spending 6 months having clexane injections daily and trying lots of different painkillers but feel as if I have been forgotten about now. I haven't had an MRI scan for over a year so I have no idea what's going on in my head anymore and my specialist seems happy to leave me on this pain relief without having a follow up appointment to see how it's going!

I've managed to get an appointment with him in a couple of weeks time (I had to book this almost 4 months ago and this was the nearest one they could give me!)

Have to stop myself from getting angry with the NHS as they have done a lot for me but I can't help but get annoyed now!

Hi all. I am happy to find you all. My situation is that this past November I started having bad headaches. My doctor suspected migraine which I have never had before ever.  One day the headache got so unbearable that I had to go to ER.  They did a scan and said I had a blood clot in back of brain. Admitted me immediately. Called it a sinus venous thrombosis I believe.  I spent  about a week in hospital then came home on Coumidin. I don't really remember much of this even.  It's from my family filling me in. Anyway, a couple weeks later I woke up one morning and couldn't breathe the same time I was taking a drink of water. I didn't think much of it other than it a little strange. My daughter came to spend the day with me. Before I knew it she was asking me what is wrong and saying I am acting funny. I didn't feel anything at all. 911 was called as it was suspected I was having a stroke. I get to hospital, another scan and come to find out I had a huge hemmorage in my brain. I was immediately given vitamin K  and plasma to thicken up my blood and air lift to another hospital where I had brain surgery the next day. I spent  8 days I think there I'm told. I was put on keppra anti seizure meds. They have not been nice to me which have resulted in me not being nice to others. I have been told that is a nasty side effect of keppra. I have had lots of ups and downs since this all happened. My surgery was December 5 of this year. It has now been 6 months. I recently found out on a post op check up that my doctor who did my surgery, upon seeing my first scan, didn't think I would survive the night, or if I did, not the surgery because the hemmorage was so bad that it moved the right side of my brain 2 inches over to the left side. He also told me part of my brain is the capacity of a 2-4 year old, just parts, and that the brain is so complex he predicts a complete recovery for me but I am probably looking at 3-5 years. I feel so lucky to be alive. I am told I am a miracle. However now the tremors have started. My neurologist recently did an EEG and find what he calls "blips" between the tremors that are so short in time, like a tenth of a second, but says that if I were to have multiple ones in a row, I would probably have a full blown seizure. So between that reason and the fact that I am a miserable nasty hateful and now have turned violent  which my doctor says the keppra can cause this, we are in process now of switching me to a different anti seizure medication.  He actually tried me on one last week but I wound up another trip to ER cause I got so dehydrated which can be side effect of this medicine. Evidently I wasn't drinking enough water. Ugh!  Doctors seem to think dehydration could have been a cause of whole thing. Also did take me off birth control cause that too could have. Anyway, I am reaching out with my story because I am so miserable and frustrate and still weak and recovering and feel sorry for myself and don't want to. I am hoping coming off keppra will help with some of my misery and anger feelings which have gotten pretty bad. I am lonely. I have no idea when I can drive again which makes things extremely difficult for my husband and his job and our 13 year old. I am told I may never be able to go back to work again. I still talk kind of funny, more so when I am tired. And I am still way off balance. I have to have help walking anywhere. Activities extremely limited of course. Whole lifestyle changed of course.  I am still not even able to cook, clean, anything to exert any energy as it exhausts me and I will simply fall so it is dangerous to me. So I'm wondering if anyone else has experience anything close to my situation and if so how long did it take to get back some normalcy? I am praying it won't be the maybe 3-5 years the doctor said it might take.  It is hard to stay encouraged at times and keep my chin up. Thanks for any advice anyone has to offer.