Cerebral Sinus Thrombosis

The warfarin only increases my inr to about 1.4(needs to be around 2.0). Was switched to brand name coumadin and INR went up. While INR went up so did weight . That was while doing an hr of cardio per day and watching calorie intake. The drs and nurse practitioner will say it's not in the literature. There is a whole another forum on this site for that. No other warfarin side effects. I'm confident Keppra gave me an occasional canca sore.

I got extremely angry and violent when I was on Keppra, even suicidal. That's when my neuro took me off.

My inr has been up and down since I started taking it. Never really stable. I probably won't ever be stable on it. I don't get to many effects from the Coumadin either, I just tend to feel cold alot not site if that has something to do with the Coumadin. Keeps is definitely making me tired, but controlling any possible seizures so I rather deal with the side effects then have seizures

I find myself to have mood swing sometimes, and sometimes I even get emotional out iof no where. From what I've read alot of people hated being on it. I'm not liking it to much myself. Definitely don't like being tired all the time, specially being a stay at home mom. My son is 3 so he requires alot of attention

How long did you have to stay on keppra? Did you have to do eeg?

Today I'm having this pressure like feeling behind my left eye. When I look to the sides or up it feels like a little bit of pressure. I'm not sure what's causing this. I used to get that back when I didn't know about my clot but now my clot has cleared and I have that pressure again.. did anyone ever get that?

I used to get that when I was really tired. They had me go to an eye specialist for special tests just to be sure and everything checked out okay. Was the clot on your left side? Mine was on my right so that's where I tend to feel the pressure the most. Is the weather going to change? That might have something to do with it. Just throwing ideas out there. If it continues through the weekend, call your doctor on Monday and let hem know of the symptoms. See what they say.

Yes it was in my superior sagittal sinus, and extended into a left cortical vein.. I'm not sure what it is. It doesn't hurt just pressure when I look certain ways

I suffered terrible pressure  behind my eyes when I was first was diagnosed with CVT i couldn't open my eyes as I was so light sensitive & my eyes kept flickering involuntarily - when I left hospital I had to see an eye specialist as the pressure altered my optic nerve slightly but he gave me the all clear thank goodness - he told me how much the body can deal with trauma & steps in to limit damage & with time heals itself . 

Hi I have a question. It might sound dumb but I guess it's worth asking. So ad you all know my clot has dissolved but I'm still on thinners and keppra for probably another 2 months for precaution but this is my question. We have the state fair going on now in nj and I wondered of you guys think it would be ok to go on rides and stuff? Have any of you been to like great adventure or anything since your clot? Just wondering lol

HI! First let me ask how the pressure behind your eye is doing? In regards to the state fair and the rides, I think as long as your head allows it, I think it would be perfectly fine. By head allows it, I mean that if you don't get a headache from the ride, you  should be okay. If any ride gives you a headache, then obviously, don't go on it again. You may find that any of the rides that spin are the ones that are less tolerable by your head and you may want to stay away from those. I don't know if you like roller coasters or if there are going to be any at the state fair, but I noticed that the side to side banging back and forth from those also caused headaches for me. However,  because I LOVE coasters, I decided that the minor headaches I would get from those were worth it. I hope this helps. 

The pressure behind my eye went away. It only lasted like 2 days, maybe I was tired or something. I'm not really sure. Yes your response helped me, I guess I will just do whatever my body allows me too. I am feeling a lot better though, no headaches pr anything

Hiya,

My biggest challenge was my twin brother was getting married in Florida a year after I was first diagnosed & I still had the clot .

I asked all the medics if I could go on a high altitude flight across the Atlantic , none of them wanted to commit & I don't blame them as there isn't enough study/ info on CVT so i took a chance & going there my symptoms flared up but on the flight back I was ok & in my mind I thought the altitude might have

dispersed the clot , it didn't unfortunately but I'm still here so I think you have to live & listen to your head as it will let you know what it likes & doesn't like . Go for it & have fun you'll know your limitations ?? .

Have you ever changed the times that you take your warfarin? For example, I take my warfarin at 11 am everyday but say I wanted to start taking it at 10 am would that be fine?

I did that once and as long as it's not a huge time difference it's not a problem.

Hi John,

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

Good morning,

Sorry to hear of your sisters diagnosis. My situation was very similar however slightly different. My vein ruptured due to the clot which cause a bleed in the brain. Thankfully it sounds like that hasn't occurred with your sister. I can only expect for your sister to be on heparin or other blood thinner or clot buster. As the clot dissolves , she should start to feel better.

thanks for your reponse John, we received some good news today that she will be getting out on monday after being in 2 weeks. She will then take the medication for 6 months before going back to a consultant were she will likely get another scan to see if the clot has dissolved. I am worried thoguh about her as she is usually *before knowibng about the clot* is a bit of a social drinker and worried that she continues to drink the way she did before the clot. How do you feel now? how long ago was it you had yours?

Thanks

Lisa

Hi Lisa, excuse me dropping in! I had a clot though only symptoms were a persistent headache. I was lucky to get an MRI & CT Venogram (?) within a couple of weeks, and invited to attend my local A&E within hours of the second scan.

I was in hospital for a week, first on heparin and close monitoring, then on warfarin, and then home off work for a week, before returning to normal life and staying on warfarin for about 12 months. I was on longer as the clot did not seem to reduce.

After 12 months it still had not reduced apparently so we stopped the Warfarin anyway, and two years on from it's discovery, I have been pretty much fine.

Every time I get a headache I worry of course, but part from that, it does not impact my life at all.

I realise I have been very fortunate, and am thankful that I got scanned so quickly.

Hope it helps to put your mind at rest.

Wow Mike my situation has been the same then you.

I was sitting on the couch, got up and 3 steps on I felt like fireworks in the back of my head, actually more like earthquake. It didn't go away and felt like my heart was bitting just there for 2-3 days. As I didn't had any other symptoms the call nurse/doctor simply said I must have a severe migraine and check back 3 days later. (It was the weekend)

Forward then I had a scan then right away sent out to a neurologist who send me off to the ER with request for MRI stating I was having all the signs of a venous sinus thrombosis.

Been like you on warfarin for a year, did about 3 MRI during that time to see the state of the thrombosis, slight reduced size but nothing else.

It was up to me to stop warfarin or not, not much research done about long term use of it for this type of thrombosis, in the brain, so I weight in risk/protection and decided to be off it.

Been 6 months or just about and got another MRI this past weekend to see if it made a difference and it showed it flowing better but nothing really any different.

I got personally a blood mutation so I get worry from time to time but that's life, I have to learn to live with it no matter what.

The upside is that my neurologist who does research on it, so do speak said it's common for the thrombosis not to dissolved because the veins are so tiny, the clots can't travel and just become part of the wall of the vein overtime, like concrete when it dries, nothing can be done.

The downside she said she has seen reoccurrence but it's a slim chance so I stay positive, do what is recommended, move, don't stay in the same position too long and importantly, drink lots of water. (Not overly but good amount).

Nice again to read on this site others situation, it's comforting knowing you re not the only one.

And mike it's "nice" to hear someone who had same situation.

All the best to all

4 and a half years ago. Since my vein ruptured I had a brain hemorrhage. It definitely effected me physically. Muscles get sore and fatigue quicker. The medication I was on put on pounds which stI'll refuse to come off.