Cerebral Sinus Thrombosis

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 .

Hi John Hopps. Thanks a lot for your reply. Wow your body has been through a lot. I hope you recover soon.

I don't think I had the clot for 8 months. I doubt I would have survived for so long . The doctors are baffled and can't fathom what could have been causing the headaches for that long. They started giving me 40ml heparin from day 2 of my admission but didn't discover the clot until day 6. I have been told it can take months for the clot to re absorb into the blood stream. Now on 100 ml heparin and 5 mg warfarin till further notice.

Talking of meds I am on amplodine, benthroflumize, dozaxocine for high bp. Then they gavel me tromadol and paracetamol for headaches. I have stopped the tromadol because I feel like a zombie with it, dozaxocine makes me hallucinate and amplopidine gives me insomnia . All in all I hate all the drugs and wish I could stop taking them all

. It's such a horrifying experience and I know I should be grateful for this second chance. I just don't know how to be positive at the moment. I guess it's early days and hopefully I will learn to appreciate that it could have been worse.

How soon did you go back to work and what's your energy level like. Also does anyone know how long I have to wait to get on a plane? Even for short flights.

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Hi issgy. Every experience is different and agree with Johnopps in that it could have been worse, so you really need to get into a positive mindset (I know it's easier said than done). Its really the only thing that will make you get better quicker. My 35 yo brother was admitted to emergency after having a seizure in the bathroom. He had been sick for a couple of weeks with diarrhoea and headaches (particularly behind his ear). GPs had been treating him for an ear infection for over 2 weeks prior to the seizure. Once he was in emergency, they did a scan and found the clot which had haemorrhaged. They placed him on wafarin and kept him in hospital for 6 days.The night prior leaving he had another severe seizure, The wafarin thinned his blood too much and he haemorrhaged even more. Whilst trying to control the seizure in emergency he began to suffer from acidosis which rapidly attacked his kidneys. They later discovered that he had an allergic reaction to the dye/contrasts used for the MRIs which were slowly deteriorating the function of his kidney. In the space of week, my brother had essentially gone from suffering from a stomach bug to being in critical condition, in an induced coma with 70% chance of not surviving the night if not placed on dialysis within an hour. In that hour his kidneys kicked in and they managed to get him into a stable condition without dialysis. They placed him on Tegratol for the seizures and kept him under observation for 2 weeks. When he was finally discharged, he lasted at home for just over a week before he could not walk or see properly due to extreme dizziness. Back to the ER. He had been overdosed with Tegratol. They lowered the dose then sent him back home. By this point he was severely depressed, still suffering headaches, always tired, twitching constantly when lying down and shaking during the day. He would tell me that he could feel the blood running through his brain, almost as if the pressure would slowly be releasing. This was the first 3 months. By the 4th month, the twitching were few and far between and the shakes had stopped. Still had the odd headache but he had gone back to his old routine of going out with his friends. His mood was starting to improve. He began taking fish oil tablets around month 5 which really gave him more energy and motivation. It's now month 7. He has gone for his check up, and although he has some scarring of the brain, there is no severe damage. The clot is completely gone and he is back to normal - as if nothing has happened. He is working again and driving around in his sporty car. He must stay on the wafarin for another 6 months and tegratol for another 5 years . I guess I wanted to tell you the full story to drive home the point that you are just in the early depressed and shocked stages. When treated properly this could end up just a bad experience. Be patient, stay positive, take care of yourself and keep calm. Have plenty of rest but do not stop your daily routine too much as it will only give you time to dwell/obsess about your condition. All the best x

Hi issgy. I was excercising within 2 months of the hemorrhage . It occurred June 7. 2012 . I've been back at work for 3 months and its delay was because of not being allowed to drive . my biggest complaint right now is the weight that refuses to come off and this keppra medicine make me a bit angry at times and I just want to curse at people which isn't like me. like ang2 brother I have a scar in my head which effects the electricity in that area. I want to have the medicine reduced but don't want to stop taking it. The first time I was allowed to excercise I walked a mile . As for the medications, I'd check to see what's necessary and what's not. Obviously warfarin is and Bp until the clot is gone. Hopefully after that they take you off the Bp med. you will have a test after 6 months while not on warfarin called a d-dimer test that test for any signs of clotting. If that comes out ok you'll be off the warfarin.........ang2, I email your brother sometimes . Same story ..ear infection..just bad bad luck but very lucky to get through it .....issgy ....I felt great that I survived it but after a month I started venturing out to the stores and felt very different like what the heck happened? These people don't know! Can they tell I'm different! And my return to work was full of anxiety.

Hi izzyg.

You have probably read my post above. It is a very lonely place to be as it’s such a rare diagnosis. It’s now been 3 months since I was diagnosed with CVST and I also had two TIA’s. I still have not been seen by a neurologist, I have only been seen by General Consultants. I have now eventually had an appointment to see him on 14th of August; 4 months after been admitted to hospital.

I was like you was very very tearful, I spent most of the day in tears, so you are not alone there. I was also getting very depressed looking for answers on the internet as that’s all I would get from my GP and General consultant was ‘it’s so rare’........ They still don’t know what caused it. I have now started back on a phased return in work; I’m still getting pain in the head, ear, neck and face and I get very tired and giddy. I also still get emotional, but not as bad as I was, going back to work has helped because being at home made me very depressed. It took me a long time to be able to go into a supermarket as I thought I would collapse! I also lost my confidence, but this is now improving. I am still on Warfarin. I hope it’s a comfort for you to know that YOU ARE NOT ALONE, as this is what I felt like. Write on here again and we can all support each other. xxx

Hi my CVST family

Sorry for the late response. Thank you so much Johnhopps, Ang and Haf for your words of encouragement . I feel a lot better knowing that life can relatively return to normal and that I am not alone . It seems we are all in our 30s so is it a common age for cvst?

Johnhopps thanks your journey so far has shown that it is possible to live a normal life after this as long as I learn to accept the changes or readjustments that need to be made. I am dreading going back to work because my career is very fast paced and quick decisions are required. How have you managed to do this?

Ang2 your brother is so lucky to have your support because it seems you have lived through every step of this experience with him. I am glad to hear he is coping well. I hope you are looking after yourself as well though because been a carer takes its toll as well.

Haf I am so sorry to hear that you haven't seen a neurologist in 4 months. That's so appalling. Are you in the Uk? I was lucky to get seen by one even before I had the MRI. She was the one that requested for the can. Now I am under the care of the stroke doctors and was in the HASU ward before I was discharged. I am going back in 5 wks to see them again.

Following the advice I got in here last week, I decided to start bringing some normality back into my life by taking small steps. On sat morning,, I got dressed in summery clothes instead of nightie and put some makeup and jewellery on. I actually felt a bit like my old self so thank you all so much. On Sunday I went to view a venue to hold my 40th birthday party next year as part of looking forward to the future. This actually drained me so I slept for hours after. Today I danced for 10mins with my daughters. The joy of their faces in seeing mummy back to normal really made my day. Now I am in bed suffering with headaches but its been worth it. I think I will take a rest for the next few days though.

So the depressive state is slowly disappearing . I am grateful to God and you fab people on here. Goodnight and chat soon.

I got this condition ten weeks ago, I had bad headache, ear ache and then started losing sensation in one arm. I just managed to get to A and E when I went into seizure. It was very frightening and I lost my speech, my use of upper right side of my body I could not remember my young daughters name and could not eat or drink or write. I was showing most of the symptoms of a stroke. It was touch and go and at one point I managed to tell my partner to look after my daughter as I did not have long left! Luckily my dad bought a photo of my daughter to the hospital the next day to inspire me and I fought with everything I had and managed to get out of hospital after a few weeks.

When I returned to my parents house at first I was over the moon as I never thought I would see my daughter again, then the fear set in I could just not see how I would ever return to normal life. The way I have tried to deal with it is to act as normal as possible, in hospital the second week I insisted on attempting to put on my make up even though my right hand was virtually useless and I kept poking myself in the eye. By the time I came out I could put it on perfectly, so I looked better even though I felt terrible. Then I started to read books the first week home to try to sharpen my mind and I kept pushing myself to walk around the garden, little but often. I also wrote a poem to the amazing hospital staff to help with my writing. I dressed my daughter every day also. One week after I was home I went with my dad to take my daughter to school, it was so emotional as I had been worried sick in hospital that she would never have her mum take her to school again.

I then went to a friends wedding two weeks after coming home it was my best friend and it was amazing to be there and dance with my daughter.

It has been a scary daunting experience but I have got back out there as soon as possible and faced my fears. I have even been swimming when on a spa day( my consultant gave me the ok) .

I do not feel like my old self yet, I get headaches, dizziness, tiredness, concentration and slight memory problems. I also have a lower tolerance level in general than before although I don't know if this is the Keppra I am on. My family have been amazing and I am staying with them, I am not returning to my own home though until I have an alarm button for my daughter to press for help if need be as I still am concerned I could fall ill again.

I have my future goals to work towards though and I have one more year to complete at university which I will return to next year. I am hoping the symptoms will continue to fade and one day this whole illness will just be reminder to not take anything or anyone for granted. If I could give anyone any advice to get through this I would just say from my experience don't get angry at things you cannot change and keep your focus on gently pushing towards changing the things that you can. Look back at how far you have come and be proud at how strong you are to be coming out the other side of this serious illness. I am stronger than I ever imagined and I use my wonderful daughter as my inspiration to get my life back on track. I wish all of you the best in getting back to "normal" or maybe an even better "new normal" with a changed perspective on what is important in life. Follow the medical experts advice and also listen to your own body, don't ignore the warning signs when you need to rest. Good Luck

I think we all need to get together on a Skype or similar. I don't use that but will do it if anyone's interested.

Also just a question . I have my own theory that just like when muscle grows from small damage to the tissue, that my muscles grew huge due to being badly damaged from the hemorrhage. Anyone have a similar muscular reaction?

I had it too in 2001 so scary. Severe headaches and sickness lead to being severely dehydrated, admitted to hospital after seeing doctor number 4 and after fluids in hospital felt ok again though my vision was strange which was dismissed my doctor and discharge with a sore throat!! 2 days later I had extreme double vision approx 3' apart very confusing! Back to hospital and put on heperin for clot after MRI scan and it turns out mine was caused by a mastoid infection which had leaked inwards causing the clot. Total of 3 weeks in hospital and after 3 months vision returned to normal and warfrin for 6 months, my head tingled and felt numb for quite sometime after. But I am so glad I survive that, my consultant said at the time if it had happened 10 years previously I would of probably died as they wouldn't of know what it was without the MRI scanner.