Cerebral Sinus Thrombosis

Hi Stephanie, how are you doing now? My hubby slept day and night for the first ten days, but is much better now. He was diagnosed 19th March 2017

Hello! I'm back to work now. I am a teacher so it's full on enough as it is without having a clot in your head.

I have been ok-no bothersome symptoms. Just tired and feeling a bit down and anxious at times. How's your husband going?

Hiya, he's having a good day today and is currently undercoating doors around the house Yes teaching is full on! I'm a nurse, similarly stressful!

Hubby is pretty laid back so far about the whole thing now that his headaches are gone. I'm feeling anxious (I don't suffer with anxiety or anything like that normally) about leaving him with all 4 kids next Monday even though it is only for the mornings for a couple of week before I go back full time.

I'm researching as much as I can about possible differential diagnoses for "?multiple PE's"

Hello, I'm just wondering if fatigue and all day sleepiness are common symptoms of this condition? My brother was diagnosed with this last week. Today is his first day at home after he was discharged from the hospital and he spent it in bed, no energy to get up and no appetite, and he was way more energetic the previous day. They couldn't find the reason for this illness in the hospital.... he had extensive CVST and is in his 30s. if people could please share the recovery steps after hospital discharge, it would be greatly appreciated. Is it constantly up and down for the first few weeks before a noticeable change for the better occurs? I would love to know so I know what to expect. Are there any tips on how to best support him in this difficult time? Thank you!

Did he bleed into the brain or no ?

Hi John, no he didn't bleed in the brain. I'm not sure what "extensive" means exactly in his diagnosis. He has double vision and was prescribed glasses. He injects himself in the tummy twice a day with some medicine they gave him in the hospital and also is talking diamox. I don't think he is taking warfarin yet. Thank you! And what a scary and devastating condition!

Hi Tanya, 

             Yes fatigue etc is common as your brain has gone through a trauma & it knows this , so makes you sleepy as rest will help recovery- my CVST was 3 years ago now with bleeding into the brain it's taken me 3 years to recover but everyone's recovery is different but when it comes to the brain it does  heal but it takes time x 

 

Hi Tanya, 

When it first happens, yes. Expect the fatigue as his body just went through something very tramatic. I went through a complete blockage of the juggular 5 years ago (with no bleeding). I looked up the Diamox that you said he is taking and they usually prescribe that for people to reduce pressure in the eyes and for people with seizures. Don't let the seizure part scare you. I am on 2 medicines that are for the same reason, but they help keep my headaches at bay. My appetite still comes and goes but it was worse right after it happened. My CVST happened the end of June and I was back to work when the school year started the end of August (I teach so I lucked out and didn't miss any work for this). The only aftermath I have from this is chronic headaches which are kept at bay by 2 different medications. 

I don't know much about the double vision as I never experienced that. I'm curious as to why they don't have him on warfarin. And what is the shot that he gives himself? 

Thank you so much for your reply. I'm so glad that you are feeling better since this happened, even though it took years! There is a long road to recovery for us it seems....

I've just checked what he injects and it is called enoxaparin. I think doctors said he needs to inject it for 1 week and then come back. They were talking about putting him on warfarin but I'm assuming this will be done after injections are finished.

He had a lot of pressure on his optic nerve and doctor did a lumbar puncture to release the pressure. It was 40 compared to 20 on average (for people with this diagnosis? Or healthy people? Not sure). Since lumber puncture was done has vision got better but the damage was done. We are just hoping that double vision will be a temporary thing.

Big Hugs to all the sufferers of this condition and their families.

Thank you Clair, your words are very reassuring.

I've read somewhere that women recover quicker than men after CVST for some reason.

I'm still very new to this and only just started doing some research about it. There is not much to go by at all. So this forum will be my best source of information!

In regards to the pressure on the optic nerve. I remember having some slight issue with my eyes and my regular eye doctor sent me to a specialist to have it checked out to make sure it wasn't anything serious (or anything having to do with the CVST). They did some pressure tests if I remember correctly and some indepth pictures and eveything came out okay. I was just put on some eye drops to help whatever issue I was having (I can't remember what the issue was at this point anymore it's been so long). 

Keeping fingers crossed that the double vision is a temporary thing and that once the clot disapates and time goes by, his vision will get better. 

There is a light at the end of the tunnel. I still see my neurologist every 6 months as I still have tenderness behind the ear where the clot was. She doesn't know why I still have tenderness, but is happy that my headaches are 99% gone. They've been 99% gone for about a year now and we are now wokrking on decreasing the dosage of one of the medications. 

Hi Tanya,

Thank you 😊, I wish your brother all the best for his recovery 👍, as you have found out being such a supportive sister that no one is ever alone in this mine field of a condition, this forum & the fellow people on here who have suffered with this really helped me to understand the complex condition & recovery because when it's to do with your head it's very frightening . Always ask if there is anything happening with your brothers recovery that you need answers to as we have walked in those footsteps & so can offer advice with what happened to us 👌 X

Hi Tanya,

?Yes my husband slept litterally all day for the first 10 days after it happened, then started to be able to get up in the mornings for an hour then the afternoons for an hour and it all gradually impproved. He has an extensive clot but it didn't cause a haemorrage (which can happen due to the pressure building up behind it as the blood has to slow through the sinus due to the clot). By day 15-20 after it happened he was more of less back to normal and was on warfarin until he saw the haematologist who swapped him to apixaban which he'll be on for the rest of his life. My hubby's only 53 and slim and fit but used to drink too much. Now he's limited to 14 units of alcohol per week for ever (and he's coping well with it). Let him sleep and keep things quiet around him (headaches were almost unbearable for first 10 days, then suddenly improved) until he's feeling better. He's able to drive, work and look after our kids as he did before now, and it's only been about 6-7 months since it happened. I remember how scared I was for him/us all at the time. Try and rest yourself to, to be able to be strong for him. 

Thank you so much for your reply. I'm very scared for my brother who is only 35 and also is fit and slim, and he gave up drinking alcohol about 4 years ago, but he was only a social drinker anyway. It seems to me that doctors don't know what caused it most of the time but blame it on any risk factor that they can find. Unfortunately in my brothers case there's nothing to blame it on ( although we are still waiting for some results from haematologist).

He didn't have a bleed but has extensive ctsv extending into deep cerebral veins, and also involving the right transverse sinus and extends into the internal jugular vein.

When you said that your husband slept for 10 days after this happened, was it from the time he was discharged from hospital or from the time he was hospitalised? How long did he have symptoms for before he got to hospital? Thank you so much for your answers again. And I'm so happy to hear that your husband is on the mend.

Tanya,

I was 33 when I had mine. For a month I had bad head pain. Went to ER twice and they didn't find it. One of the times I was in a cold sweat and throwing up. Don't know how I was released. A couple weeks later my wife found me. The Hemo talogist will run tests for factors genetic clotting disorders. They found none with me. No family history , no smoking , in good shape. Only said I had an ear infection which may have traveled to sagittal sinus vein. Thankfully his vein didn't rupture. I'm sure he's on warfarin or clot buster. Once that clears he'll remain on blood thinner for 6 months, then eligible to come off unless the dr finds a factor (5,7 leiden) etc.

Thanks for sharing your story John. My brother was in pain for 4 days, his wife called ambulance and they didn't take him to hospital, blamed it on the virus or a neck strain. A week later I called the ambulance and insisted that they take him although they hesitated again. So he was diagnosed with ctsv 11 days after the headache first started. I can't imagine that you suffered for so long, although my brother told ambulance people that I'm overreacting so he would probably suffer for much longer....I'm glad that I was pushy/begged with them.

Hi Tanya

Sorry to hear about your brother. I am 20 months on from my diagnosis and am nearly back to normal. Still get exhausted, headaches and occasional numbness but nothing like as bad as the first year. I remember the dizziness, bad head, earache and fatigue well!

After a couple of months I had odd good days which eventually became more frequent. Any sort of concentration (reading using phone/ipad) exacerbates the symptoms.

My advice is rest, rest and more rest and the good days will come.

Thank you so much for kind words and support. It means a lot to me as I have no one to talk to about it. And I'm so glad to hear that you are feeling much better. I think my brother also mentioned that he feels worse after reading anything. I'm just praying that his condition will improve soon.

I am sure he will but it takes time and lots of patience. Its such a rare condition that the doctors don't have all the answers. I have found more advice on sites like this and a Facebook group!

The fatigue is like a condition in itself- not only was I physically exhausted and drained but emotional too. I felt frustrated with the slow progress and at some points quite depressed. It's hard to keep positive when you have so many bad days and worry it could happen again.

BUT you do start feeling better and you do worry less and really appreciate life for what it is.

Hope the good days come soon.

Hi Tanya,

?He slept almost constantly from the day he went to hospital (having been woken at 2am with a 'thunder clap' headache, the first and pretty much only symptom, although once that happened he developed neck stiffness and aversion to the light etc) until 10 days later he was only in hospital for 2 days in the end. He totally turned a corner on day 10 and got significantly better.