Cerebral Sinus Thrombosis

Hiya

I am in the Uk I am 50 and had a stroke from longstanding venous sinus thromboses which I have had undetected for many years in May 2008. Just got a diagnosis in December 2009 after 18 months of mistreatment for IIH when my neurologist didn't connect the two and only after referral to another neurosurgeon for surgery for a shunt, a cerebral angiogram was done and multiple dural fistulas were seen, consequences of past thrombosis. I have constant agonising headaches.toothaches earaches neckaches,dizzy. sick cant see feel like my head will burst and am like an old woman its just pain pain pain. I am also going to lose my job due to this. So not happy at all because of the delay I am virtually untreatable now. Not much to look forward to really. the drs think its to do with being on the pill. Waiting to see what they might do with me when I see the new neurologist at the end of the month, but I know it will be lumbar punctures and more hospital.

Hi there SummerSkye,

Only just seen your post a few days ago then forgot my pass word ! so now I am on again ok thanks to the great help from the team here .

I was so sorry to hear of the problems you have been having , how are you and how did you get on with your neuro at the end of Jan ?

Its terrible that your Thrombosis went undetected for years !

I thought it was bad enough that mine took 4months to find .

I was taking Tranexamic Acid tablets for heavy periods for about 17 months prior to being ill in April 2003 .

They have been linked with this kind of Thrombosis but of course there is no such infomation on the leaflets about that .

I was treated with Heaprin and then Warfarin for 7 months .

It was after the clot had gone that doubts started to creep in as to what was still going on in my head as I was still having problems .

It was not till 2006 that I was told by Consultants in the National Hospital in london that I was having post traumactic mirgrianes due to the blood clot and the bleed .

I tried Amitriptylene for a couple of years but it made no difference so do not take anything now .. Just have to put up with the headaches .

I think that I realize that from the research that I have done that the out come may have been better if the doctors have found it sooner but cannot blame anyone as its very very hard to diagnose.

I have a CT scan first but it did not show anything then they did a lumber puncture and a MRI and then they knew what was wrong !

I had a veno gram done in Addenbrookes as they did wonder if I too had IIH but it was clear just scar tissue and it was very painfull indeed ...

Please do make contact if you would like to chat as there is not many of us about !

I am 53 and live in Norwich in Norfolk am married and have two grown up children .

I work partime do not do as much as I could do before .....

Take care .

Best wishes Jan.

Hi I'm am 23 and was diognosed with CVST in April last year, I was mis diognosed by my doctor as he told me I was suffering from migraines I was then on strong pain killers which masked my symptoms until I didn't take them for a few hours and become violently sick very quick and become weak, my friend took me to a and e where I had ct scan and they found this condition I have since had 3 lumber punctures also been on warfarin for nearly 9 months now. i had ct scan after being on warfarin for 6 months and there was no change, my bloodclot or clots are still there. I am currently waiting on a MRI scan. Anyone in a similar situation or that has been in the past, would be very grateful if anyone can shed any light on what happens in the future, I would like to have more children in the future is this even possible???

Hi in live in Scotland I had a venous sinus thrombosis in 2007 when I was 44....and they think it was the contraceptic pill .everything came completely out of the blue woke up with a head ache that I can't even describe apart from asking the doc to remove my head. My right pupil became very enlarged and I couldn't stand any light ......very sick and everything else as I was told my body went into shock....I was admitted to my local hospital with suspected meningitis....they gave me antibiotics immediately and isolated ...but after 6 hrs they realised that something was wrong....there first option was to do a lumper puncture but my family were not keen and so gave me a CT...immediately when they realised that the clot was there they transferred me to a centre of excellence hospital...acute stroke ward and straight on to heprin and then 12 months of warphin.....the clot was slow to dissolve .....which was very frustrating. It took far longer than they envisaged but even 4 months later it was still there.......hence being on warpin for so long

Any adrenaline my body produced left me with the sensation that my head was going to explode and I felt pressure was building up.....I could tell 30 mins before I needed to go to loo that I would need to go...any acceleration in the car felt as thou my head was going to explode.....I could even tell if it was going to rain, the weather pressure triggered migraines which could come on at any time and were a frequent as the weather changed in any of the seasons.I had numbness in the right side of my face and the sensation that water was running down it. I had to give up my job and my whole live has changed but I have been given a second chance as things could have been a lot worse.

My doc is great..she gave me amitriptyine 10mg for the feelings in my face and after 3 years to ascertain that it was migraines I now take a drug to prevent migraines.

I have to say that it has been a year now since I have been on the anti migraine drug and my live has improved so much it hard to believe that one wee tablet every night can make such a difference.

It has been a long road but after 4 years my life is now directed by me and not the weather..

hope this helps

L

Hello all. My brother is 35 and was recently diagnosed with CVST born from a severe ear infection. It wasn't until he had a seizure / stroke that they identified the clot and bleed. It took them a week to find the best treatment, firstly with Wafarin then the addition of tegratol to stop seizures which were causing him to bleed out more. I guess my question to you all is more about how you managed your condition from a psychological perspective. He is doing a lot better, no apparent damage or disability apart from a little forgetfulness and loss of concentration here and there. The emotional stress however is becoming incredibly overwhelming. Always waiting for the INRs, long periods between visits to the Nuerologist for follow up scans, etc. I'm from Sydney Australia so if any of you could recommend some names of useful, supportive specialists both neurological and psychological it would be greatly appreciated. I have yet to find male forums where he can connect with others in a similar situation that can help him out. Also, just curious, how long generally does full recovery take?

Hi. In June 2012 at 33 I Also suffered a stroke/seizure from cvst. In may which was a bad allergy month here in New York I got bad headaches which I never got prior. I went to the emergency room and was diagnosed with am ear infection after a regular cat scan showed nothing. I returned in 2 weeks with the same complaint plus throwing up and a temperature of 93 farenheight . That day I was tested for meningitis and nothing was found. I didn't even remember to ask for a cat scan angiogram which I declined the first time. 3 weeks later I suddenly was unable to read the puzzle of wheel of fortune . I couldn't get the words out of my mouth. I then had a seizure and was in a coma for over a day. I also had a second bleed. It took a while to get back into shape. The first 1 mile walk I took 3 weeks after getting home made my legs sore for 2 weeks. I still am on an anti seizure med due to a scar on the vein. I think I may be taken off it in 5 months. As for the inr. See if there is a lab where you can get the results in a few minutes. A hematologist should also test your brother for any hemophilia blood clotting disorders . If that comes out ok your brother will be taken off warfarin 6 months from the day of incident. If he's on a steroid like I was on dexamethasone make sure he's taking protonix to protect his stomach. My wife was recommended to give me Prilosec OTC . No good . The steroid starting cutting up my stomach and I was hospitalized again after throwing up blood. Amazingly I'm back to normal. Psychologically I was great when I first got home then when I started going out and it sinked in what happened I started having anxiety. Don't even mention it to him . Any questions don't hesitate.