Cerebral Sinus Thrombosis
Posted , 71 users are following.
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.
4 likes, 460 replies
shannon45769 Guest
Posted
Hi, I am 19 years old. Back in December 2015 I started having headaches whilst being pregnant and then in February 2016 I gave birth. Ten days after giving birth I got rushed to hospital with suspected meningitis but after two CT scans one normal and one with the dye. They found that I had a large blood clot in the brain and it was from pregnancy.
Straight away they started treating me with heparin, Wafarin and clexaine. They also gave me a lumbar puncture just to make sure I didn't have meningitis which came back that I didn't. I was in so much pain due to the blood clot.
Going through all of this and being a first time parent with a newborn was really hard. Since finding out about the clot I have been back a forth to the hospital in pain and having loads of nights in trying to sort out medication and an effective source of pain relief.
I was suppose to stay on Wafarin for 6 months but i stayed on it for 7. I stopped taking it for 4 weeks and in that time I then developed a clot in my chest known as (PE). Now I am on anticoagulants for life.
Everyday I have a really bad head and that has been going on since February time in 2016 and it doesn't seem to stop I might have the odd good day and bad but mostly bad. I don't know how to deal or cope with the pain. It's like a dull ongoing pain and I will also have the odd shooting pain.
I'm on lots of different medication and it doesn't help with my head pain.
Anyone been through this because of pregnancy? And does anyone know how long the pain of the headaches last? If so did anyone have another child and what was the outcome?
Dreamz shannon45769
Posted
Hello Shannon, after my delivery in June 16, a week later I experienced intense headache for a whole of 2 weeks. One day, I experienced numbness on the left body and face and decided to see a GP. I was told that i am dehydrated that's all. Subsequently, I developed double vision, seen a doctor and was referred to the Emergency Dept immediately. The medical team drew tubes of blood and sent me for MRI/MRV and CT with contrast. They found the right side of my brain badly clogged. I was on Cleaxane for about a week then warfarin. The doctor attributed the clots to be due to pregnancy as the all other test results show negative. I was also told that during pregnancy, blood is thicker, hence the possible cause of the clots. I went the the Emergency dept again last week due to persistent headache but they said its tension headache not due to CVT. My doctor gave me the go ahead to stop warfarin yesterday after 6 months on it. The latest scan shows some clots have dissolved and some reduced in size. The doctor said staying on warfarin does not help anymore since whatever should dissolved will be dissolved during the 6 months period. He also shared that should I want to be pregnant again, he believe the whole episode will repeat again and I will have to be on cleaxane during the whole pregnancy period for the 10 months!
shannon45769 Dreamz
Posted
Hi, my headaches don't seem to go I have it all day everyday! My neurologist said it's common but I hate it so much. I am too scared to have another baby because they said I would have to go on clexaine and I don't want that. I wouldn't want another baby at the moment anyway because I'm in so much pain. If I'm honest I feel so alone with the whole thing. Nobody that I know knows what I truly feel and I think that they think I'm lying about the pain when I'm not.
Tiger12 shannon45769
Posted
shannon45769 Tiger12
Posted
I've been on gabapentin for nearly a year and nothing! Just want to be like a normal family and enjoy having a baby instead of being in pain
ClaireyApril shannon45769
Posted
Hi, yes I'm the same , unfortunately it's been 3 years since my CVT & I always feel sensations pulsating etc every day in my head it hardly lets you forget about it & then out of the blue I'll have a cluster of bad throbbing stabbing headaches for between 2 to 3 days & then it dies down again.
I have to cancel on friends & family at my bad times & they do get fed up with me but unless someone has actually experienced this condition I have to accept they will never know what it's like so I do forgive their frustration with me .
My only hope is to take each day as it comes & I look forward to the day I'll wake up & won't feel anything in my head 👍😊
Tiger12 shannon45769
Posted
Hi shannon45769,
How much Gabapentin are you on? I am currently on 600mg at breakfast and dinner and 300mg at lunch. At one point I was on 900mg 3 at each meal but have been able to gradually decrease the dosage. I am again in the process of trying to decrease the dosage, but my head isn't liking going down another 300mg. Keep trying different dosages until you find one that works.
Tiger12 ClaireyApril
Posted
Hi ClaireyApril,
I will be 5 years out from my CVST the end of this June and I still have tenderness behind my right ear. I see my neurologist every 6 months and even she can't tell me why I still have the tenderness, but until the tenderness goes away, I will continue to see her every 6 months.
I do get the stabbing headaches when I tend to overdo it and when I don't drink enough water. I also get pressure along the whole back of my head on a regular basis.
One thing I found that works (since over the counter meds don't cut it for me and I can't take prescription pain killers) is a warm bath. For some reason, soaking in a warm tub helps my head and I come out with the head not hurting as bad.
Keep working on your doctors as you are your own advocate. Only you know how you feel and you know your body. If something doesn't feel right, let them know and keep on them. Have you tried Gabapentin and Topirimate? The combination of the 2 of them has helped me drastically.
I know it can be frustrating to always have your head hurting. As you said, you have your good days and your bad. Hopefully the good outnumber the bad.
ClaireyApril Tiger12
Posted
Hi Tiger12
Sorry for the delay in responding I've had frustrating problems with my internet!
Thank you for your info on meds for the post trauma headaches I will talk to my doc about them .
Your symptoms are very similar to mine & it really helps when you know you are not alone walking this journey blind folded as I didn't even know this condition existed!!
Hope your continuing recovery goes well & thanks again x x x
Tiger12 ClaireyApril
Posted
Good Morning,
No worries about the delay. Things happen and you have to take them in stride.
I've had a rough couple of days with my head but I believe I can attribute it all to stress and the new moon. For some reason, a full moon and new moon seem to trigger my headaches as well. I don't know if anyone else has that issue, but right around the full moon and new moon time, my head becomes more tender and achy. Not enough to debilitate me, but enough to let me know that it is there (if that makes any sense).
Anyway, keep talking with your doc until you find meds that work. They are out there and those are just two that happen to work for me. Don't give up hope.
ClaireyApril Tiger12
Posted
Hiya,
Yes you have brought back a memory I was thinking about that connection to the moon cycles as well because it happens to me!
I'm worse with a full moon it really does effect the pressure in my head !
I told my mum about it & she said if the moon can be responsible for the tides of the vast oceans then why not our bodies that are 80% water.
Weather pressures & the moon definitely effect my head so like people with arthritis can predict rain coming , my head lets me know when the weather pressures are high & the full moon is coming ! 😳 X x
Dreamz shannon45769
Posted
You are not alone. You have us
Unfornately for me, I was warded last week as my eye doctor see swelling in my optic nerves and I had to go through all the tests again. Now I am back on cleaxane then warfarin. The doctor said most people whose clots are caused by pregnancy should fully recover. But I fall in the 15% whose clots do not dissolve fully. I have to be on warfarin for another 6 months. My fear is my vision are affected. My job is affected too. So tired of these.. may we all recover fully soon!
helenvf Guest
Posted
It's a relief to read about people going through similar symptoms!
I had a CVST September 2015 - started with severe migraines for 3 days then on the 4th day complete paralysis on my right side. I was admitted and discharged after being diagnosed with a hemiplegic migraine. 2 weeks later I was readmitted after having repeat episodes of paralysis. Luckily the clot was found and treatment started. The pain those first few months was horrendous- neck pain, headaches, dizziness, pressure in ears and numbness but then the odd good day. 19 months on and I still have exhaustion, headaches and numbness in my face and hand. Triggers for me is driving, working on computer for long periods, and using pad/phone of an evening. I'm on warfarin for life and am trialling amitriptyline for migraines and numbness. The consultants feel medication I took to delay my cycle while on holiday was the cause.
It's good to share experiences as the hardest thing for me has been not having answers - not knowing the long term - and not knowing if I will get back to what I was before! I'm 43 now and try not too plan to far forward and enjoy life. I saw a quote that keeps me going 'learn from yesterday live for today and hope for tomorrow '.
Best wishes all xx
Tiger12 helenvf
Posted
Hi Helenvf,
Sorry to hear that you had to go through all that before they found the answer. Glad that you found our group! Welcome aboard. I suffered a CVST 5 years ago at the end of this coming June and still suffer minor headaches and pressure along the back of the head. I'm lucky in that my doctor thought to send me for a MRI after I went to her complaining of a severe headache for 3 days and on the 3rd day the nausea started. That's when they caught the clot.
I was exhausted at first and I can only drink water. Anything else causes headaches, especially alcohol. A few other major triggers are a full moon and temperature changes. For example, right now it's snowing and we had a full moon last night so I have a headache and pressure along the back of my head. My head will tell me if it's going to rain or snow and I can also tell if it's going to be a fulll or new moon about a day before it actually occurs.
Feel free to ask any questions here and we can try to answer to the best of our ability. We are also here as comfort. We are all going through similar symptoms and like you, I am so glad I found this group because it means I am not alone.
helenvf Tiger12
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Thank you for replying- it's so good to share experiences.
How are you now with the fatigue? I am trying to keep patient but the tiredness and headaches are so restricting! I'm back at work now part time but don't do much else my days off are resting ready for work!!
Tiger12 helenvf
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Turthfully, the fatigue is not that bad. I mean, I workout at the gym (cardio and lifting weights (currently 125# back squats). I also teach preschool and they keep me hopping so when I sit down on the couch to watch TV and let my body relax, I do have a tendancy to nod off. But in general, the fatigue doesn't get in the way of me doing what I love to do.
helenvf Tiger12
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This gives me hope - thank you! I long for the day when I can get back to jogging. I'm 6 weeks into yoga which is really tiring but very relaxing.
I've found 'pacing' myself difficult- you only know when you have done too much when you feel rough afterwards- aaarrrhh!!
Thanks again for the hope!!
melanie_11602 helenvf
Posted
Hello all, I posted on here a few months ago.. I had a cvst in feb 2016.. was on thinners for 6 months.. Doctors did all tests on me to figure out why I clotted at such a young age (21) well they didn't find anything genetic so they blamed the birth control I was on.. anyway I'm doing ok now, I rarely get headaches but there is something that is bothering me at the moment.. this whole week since monday I have been sick with a cold. So I've been coughing my head off.. two days ago I started getting a terrible pressure pain on the right sidea of my head.. I thought it was just from coughing.. but it hasn't went away for two days unless I take motrin or tylenol.. it's getting me freaked out.. I'm thinking from me coughing so much I caused another clot.. maybe I'm just thinking crazy.. I don't know. But it's worrying me.. any advice? The pain goes from the back of my head on the right side to my ears and foreheaD and even a little into my right eye. I'm terrified
johnhopps melanie_11602
Posted
Before jumping the gun, I'd say to myself, is the pain I'm experiencing now anywhere near the pain I had with CVST. You know that pain was beyond a headache. Thunderclapps, waking you up out of sleep is what you probably had. If it gets anywhere near that pain, then get it checked asap.
helenvf melanie_11602
Posted
Hi Melanie - researching CVST an awful lot of women seem to have had this due to birth control- mine was too.
If you are worried I'd go to A&E - i went twice within the year following my CVST- each time it was nothing but I was reassured. Fingers crossed yours is nothing to worry about too x