Cerebral Sinus Thrombosis

Thanks very much for your replies. It helps to know that other folk have had ongoing headaches too. I am already on max dose topiramate but perhaps gabapentin is something to consider. Or perhaps the headaches will just continue to get better with time and warfarin.

 To be honest, just knowing what to expect helps. I haven't had very much information from the doctors about it at all. So thank you.

Hi hope you're feeling better I'm having similar symptoms did you ever get to the bottom of your problems any help would be greatly appreciated thank you kind regards

My daughter was 14 when dx'd with CVST, 15 now. Hers is a rare complication from mastoiditis. Never had ear pain. No ear infection. She's had a vp shunt placed to save her eyesight (serious optic nerve swelling). Because of the swelling she constantly heard a wooshing sound. She was in and out of children's hospital for 7 months.

She still has headaches. We make sure she remains hydrated and are constantly on her about fluid intake. She's now weaning off gabapentin. They already weaned her off topiramate a couple months ago. Her neurologist thinks she can manage with motrin at this point (which she can).

She's on 50mg lovenox injections twice a day. She can't be on pill blood thinner because of age. The Drs think she'll be on blood thinners for life. As a result of all of this she cannot resume sports (she was a softball player) and is limited in activities. We don't know when she'll be able to resume activities.

She's under the care of a neurologist, a neurosurgeon, and a neuro-ophthalmologist. She'll now have MRI/MRV every 3-4 months to monitor the clots. Not ready with a shunt as that hurts her.

My research indicates this is extremely rare so finding this site and so many people with the same condition was nice.

Did you get swelling on your face. I was suffering from earache then after intense headache.finally doctor got sinus thrombosis. I got swelling on my face and eck. How long it take to disappear the swelling.

I was diagnosed with cerebral venous thrombosis 7 months ago at age 39. I had been experiencing the most severe headache for a week, finally I couldn't take the intense pain and was going to call the Dr for an apt.  Before I made that call, I became incoherent and I was found slumped to my side and then had a seizure. I had another seizure at the hospital, and was still unconscious. Dr's finally diagnosed CVT after an mri-v, after ruling out meningitis, and nothing was showing up on the ct scan. I woke up 2 days after and was shocked to find myself in a different city and in the hospital .  I was on heparin, then warfarin. Also on Dilantin for the seizures and water pill and antibiotics due to sinus and chest infection.  After being released from the hospital I had a severe drug reaction, and was taken off Dilantin and given Fragmin to use instead of warfarin.  I was able to take 2.5 mg green warfarin pill again 2 months later, and developed huge hives daily on my arms and legs.  I was switched to the 5 mg peach coloured pill, and no hives!   I'm getting an MRI-V done again soon to rule out any remaining clots.  I haven't been able to return to work since this happened, and I am not sure how I will cope when I do, as my fatigue and mental strain seem to be so severe still.  I was wondering if anyone experiences symptoms similar to concussions after CVT?  I have sensitivity to light, can't stand loud noises and computers.  I am so tired all of the time, and I've been trying to exercise through the support of a physiotherapist, to regain some muscle strength, but I feel like I'm slipping backwards due to headache and fatigue, even though I'm not really doing anything too straining.  I keep looking up info online about expected recovery, but most info is just about medication. I still get headaches, not as often, but they recur, and my neurologist also said that it's probably just because I've had headaches in the past. I'm finding the isolation of being off work difficult, and not knowing when I'm going to feel more like myself.  Any thoughts on what has worked for others would be very helpful and residual symptoms. I get the impression from the Dr's that because I am young and healthy prior to the CVT that I should be better by now.  Wishing everyone good health.

Hi I Suffered CSVT last year Aug 2014. I was suffering from severe left side headaches which was travelling through my eye and ear and down the neck after taking strong pain killers for 2 weeks my husband took me to the walk in centre where I was checked and told I was having migraine attacks so was sent home with pain killers which didn't work at all. On the 3rd after going to walk in centre I was getting ready and remember feeling all numb which made me lye down and close my eyes I was Un responsive to my husband who was trying to ask what the matter was a few minutes later I got up my husband walked me down stairs ans sat me down I still couldn't respond to anyone's questions even though I fully understood them I sat and rested for about 1 hr then all of a sudden felt normal again I put it down to the head ache. I then set off to my mum's house who lived 20mims away when I got to my mums I sat down and just tipped to one side immediately my mum lay me on the floor and tried talking to me as they called the ambulance they sprayed water on my face which kept me awake. My family thought I was having a hypo as I am type 2. When the ambulance got there they asked me question and then asked to walk to the ambulance I immediately got up and walked myself. I got to the hospital and was examined and found I couldn't remember much about myself so later that night I had 2 CT scans one which confirmed I had a colt which leaked slightly and 2nd confirmed it hadn't moved or got any bigger. The following day I was transferred to a specialist neurology hospital where I stayed for 5 days under observation and started on heperin and warfrain it's now been 1 and half yrs my MRI scan has come back all clear with no scaring and yesterday I came off warfrain. Scary journey with other medical problems but I pulled through and I hope everyone else does aswell.

Hi There,

Same way it happened to me. I am from India 26 Male. After 4 years of working career in India, I shifted to Dubai and started my career here last year. However last July i had a pain inside my left eyes. Went to a clinic and they provided me some pain killer tablets. However pain was still there and I consulted them again, they took the X-Ray and said no issues inside and it just a pain and asked me to continue the same tablet. Late night the pain went severe and several times I vomited. Early morning I went to a hospital and after giving me the drip they took me for CT scan there they found its Cerebral sinus thrombosis. 1 week I admitted in the hospital and asked me to be on medication for six months (warfarin). In 10 days it will be over. But my insurance got rejected as they saying why it occur in young patient and they require an etiology statement from the doc. Provided several times but they are not accepting. I am in confused as if it getting rejected again then I have to pay the all expenses to my company as they paid at that stage instead of Insurers. Company informed me that I am not medically fit it seems so better to resign or find another job.

 

So I have medical debts + Job loosing + Health illness. This is what I got in 2015. What in  my prayers now is keep all safe with joy n healthy.