I'm 32 and recently suffered from the above. It was only detected after suffering 2 weeks of intense headaches which eventually affected my optic nerves in my eyes. I wear glasses and after 2 weeks of intense headaches my eyesight actually became much better which baffled me. I was sent away from GP with the diagnosis of a tension headache (which I don't hold any blame for) but luckily I pursued further and booked an immediate appt with an Optician who found that my visual field was affected in my left eye. I was advised to go to the Emergency Eye Casualty who continued with further tests on my eyes. They discovered the damage to my optic nerves but at this point were unable to find the source and I was seen immediately by a Neurologist who at first thought it was benign cranial hypertension. He arranged a CT scan and said that he did not expect to find anything but was very surprised to see the clot on the CT. I was admitted immediately and underwent a lumber puncture. I spent 5 days in hospital and was discharged on Warfarin medication for 3 months. I have since undergone a repeat CT scan. I believe I was very lucky as any longer I could have had a stroke. I was advised to stop the oral contraceptive pill immediately as they said this may have been the cause but also that I have recently underwent a breast reduction 3 months before.
Hi there ,
Just wonderd if you are in the uk?
I have had contact with people who have had venous sinus thrombosis but not in the uk mainly in the USA.
I had mine in 2003 , took them 4months to find it ! I was very ill , had warfarin for 7months , still having problems with my head now , they say now I have post traumatic migraines ! due to the trauma the brain had with the clot and the bleed I had .
Would like to hear from you , see how you are now .
best wishes Janet .
in july last year I woke up with an headache which to relieve the pain I just wanted someone to remove my head....never had headaches before.....it has taken me until now to get back on my feet...however still get strange pounding in my head...particulary when under pressure which I thought would have been cleared by now..as the condition is so rare it is difficult to ascertain will this always be the case.
I live in the UK and like to find our other folks experiences
Scottish women
i didnt get a pounding headache mine was a block of pain that covered the whole of the left side on my head and down my neck was a pain like no other. i was told mine was migraine. i will write my experience when i have more time because it was a struggle to get doctors to listen to me.
even when i developed double vision i was told it because i was light headed. mine started 13th february this year so it's still on going.
It makes me sad to read your experiences about misdiagnosis and being ignored by doctors in relation to this condition as my experience was the same.
Mine was identified by MRI, for which I was referred to hospital but unbelievably due to a mix up it was forgotten about and never treated.
I lived with pain in my head, neck and chest for some months, when the clot finally went to through my heart to my lungs. I was told after I left hosptial I must have had \"anxiety\", muscular issues and to take panadol. I'm not sure how I survived this, although now have residual vein damage and developed a heart problem. I still don't have any answers. The condition may not be as rare as people think, but little is known about it, including by doctors. The lack of awareness of the condition by doctors is a very dangerous thing.
[quote:782d498d5c=\"head\"]Hi there ,
Just wonderd if you are in the uk?
I have had contact with people who have had venous sinus thrombosis but not in the uk mainly in the USA.
I had mine in 2003 , took them 4months to find it ! I was very ill , had warfarin for 7months , still having problems with my head now , they say now I have post traumatic migraines ! due to the trauma the brain had with the clot and the bleed I had .
Would like to hear from you , see how you are now .
best wishes Janet .
:? Hi, Im in New Zealand, I suffered CVT in 2002 in the mist of a twin pregnancy, I was sick for months but the hospital here ignored me, that was at 61/2 mnths. I just got sicker and sicker, but they didnt do a scan until after my girls were born. I was interested in your story as I regularly get \"migraines\" now. I have always had the very odd one since childhood, but they were different. They tell me the same thing Post Traumatic Headaches...this is frustrating. I know I'm not stressed, in fact the only thing that strsses me is the fact the Drs dont listen. These migraines are very real. How can we make them understand that these migraines are a direct complication from the CVT?
Hope you have been feeling better, Christina
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.
Thanks for your response John. I greatly appreciate it. So far he has been good in social situations, I think the anxiety starts to hit him most when he is at home and starts to feel twitches or light headed. His greatest fear is the actual seizure because it leaves him distressed and disoriented.
I will take on board your suggestion to see a hematologist and hopefully in the coming months he will start becoming more accustomed to his condition until he fully recovers.
I wish you all the very best in your recovery. Hopefully after 5 months this will just be a bad experience that will never occur again to either yourself or my brother.
Take care and thanks again for responding. Ang.
Hi John,
I had to delete your post with your email address as we do not post these. If users want to contact each other directly please use the private messaging facility.
Regards,
Alan
Emis Moderator
If he's on a steroid, when he comes off it , he might get tired because the body stops making adrenaline while on steroids and when you stop there's a few days when the body is low. when he starts exerting energy like exercising he will prob get some minor headaches that will last a few weeks but he will know the difference between a little pain and the pain he felt due to the clot .
I am so glad to have found all of you!!!! I was diagnosed with Cerebral Venus Sinus Thrombosis and have felt very lonely, anxious and depressed as I was not able to find anyone who has had it. Unfortunately my doctors do not have enough knowledge on it and it has been very very scary. Three doctors missed the diagnosis, severe headache, neck ache, sickness and my vision was distorted. I was told in A&E that it was just a severe migraine from which I have never suffered from before. I decided to visit the optician and it was him that actually saw that it was more than that, as he could see a problem on my optic nerve, eventually I was given an MRI, and it showed the clot. It has been 8 weeks since my diagnosis and I am still having headaches, neck pain, feeling of burning and pressure in the head, also ear ache and numbness in the face. Is this normal? I was on a heparin infusion for 8 days while I was in hospital and am now on Warfarin. I have not been seen by a neurologist at all, so had to pay privately to see one, who said he could not give me any advice until he had seen the scan himself, this was on the 6th of June and I am still waiting to hear from him!!!!
Hi Haf.
It is VERY important that you see a nuerologist. CVST is a condition that affects the brain which means that you are at a very high risk of having a seizure. You need to be placed on anti-epilitic medication.
Wafarin is prescribed to thin the blood, but this is a process that also needs to be closely monitored. A doctor or specialist should be reviewing your INR levels (how thin or thick your blood becomes) regularly during your Wafarin treatment - are you seeing a doctor about this?
My brother did experience similiar side affects when he first started on the Wafarin but this slowly diminished as his condition improved. I do however suggest that you inform a doctor of these issues.
It is a very scary experience, but if you research and understand the condition (my brother and I did a lot of internet reading and joined blogs like this!) it will help you manage it and get the right support.
Although I did not experience it directly (my brother had it) I totally understand all the emotional feelings you have but just rest assured that you are not alone and actually its not as uncommon as people make it out to be.
After 6 months of his diagnosis, my brother has completely recovered from it. He has to stay on anti-epileptic medication for 5 years and Wafarin for at least another 6 - 12 mths but apart from that he is back to normal.
All the best.
johnhopps - Thanks again for supporting my brother through this.
Thank you ang2 for your comments, I actually rang the hospital today to chase things up and was told that the neurologist still hasn't read my scan and notes. I am at the end of my tether with all of this, but I am so glad to find other people who have had the same as it is a very loney place to be when you haven't got the right supprt from your Health Profession. I am glad that your brother has recovered from it. Best wishes x
Hi
I am so glad I found this forum. I am a 39yr old female and was diagnosed with cvst 17days ago. This was after suffering severe headaches for the last 8 months, slight forgetfullness, dizzy spells and going back and forth to my Gp. They kept on changing my blood pressure tablets saying I was reacting to it. Eventually on the day I woke up with headaches, dizziness, nausea and vomiting. I was taken to AE by ambulance and initially given a ct scan to see if I had a stroke, this was dismissed and they started treating me for meningitis . After a lumbar puncture proved negative, I had an MRI scan 6 days after where a blood clot was discovered in a vein in my brain.
In as much as I was scared, sad and heartbroken, I felt relief that the headaches weren't my imagination and I got a diagnosis. I was discharged after 10 days and now on clexine injection and warfarin . I think reality is now dawning on me I feel depressed and teary most days. The continuous tiredness and lack of energy isn't helping because I feel helpless and keep wishing I could go back to being my active self..
My question is, how long will it take for recovery and going back to a life of no headaches? We had a family vacation booked for mexico in 3 weeks and even though I have been advised not to fly for a while, I can't bring myself to cancel the trip.
My husband has been a solid rock in all these and I know I wouldn't have been able to cope without him. I feel guilty that I am burdening him with my illness. Does anyone else feel this way,
How have you all coped with the changes and what's the best approach. Sorry if I haven't made much sense in my post. I am still living in a state of self pity and can't seem to plan for the future
Hi issgy . Your story is very similar to mine. I had extremely bad headaches for 2 months and went to the emergency room twice. First time I got a cat scan which came back ok . Second time I was throwing up sweating and had a 94 temperature, I had the lumbar puncture which came back ok. What they should've done was do the cta cat scan with dye (angiogram) . They would've found the clot. This isn't common so I take it that they aren't on the up and up and I will never go to that hospital again. I sort of blame myself because I knew something was wrong. I keep myself knowledgable about health and a clot is something I always thought was affiliated with the legs and when I was researching my symptoms , clot never came up . Anyway I was diagnosed with an ear infection which I believe I did have and is the culprit for the clot. The difference between me and you is that after 8 months they found your clot and probably broke it apart with heparin . After 2 months I suddenly couldn't speak what I was reading then the sagittal sinus vein ruptured in my head. A seizure came along with that and so did a ton of medicine.. Steroids to reduce brain swelling, protonix and carafate because my stomach couldn't handle the steroid dexamethasone. Warfarin which I was doing well on but when they saw it wasn't having much of an effect on my blood, they doubled the dose and 20 pounds on the love handles arrived within weeks. Phentoin and keppra for the seizure. I am still on the keppra and can only come off it after being seizure free for 2 years but I asked my dr what if I come off it and have a seizure. So I'm afraid to come off it cause I might be out a job if another seizure occurs. I busted my rear end and the hemorrhage def cause an alteration with my muscles. I think the damage to them caused them to grow and I still have sore legs after a run or bike for a couple of days my hematologist ran all test and could not find any blood clotting disorder and recommended aspirin every day . I wish that clot was discovered like yours was. Yours could've been a lot worse . I don't know how you had a clot for 8 months . That is a long time .