Almost 2 years since I had a clot on my brain.

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In may 2015 I suffered a CVST about 2 weeks after giving birth prematurely. Unfortunately my little girl died at 3 weeks old and I still have to deal with the fact I had a stroke. I had extreme preeclampsia and clampsia after having my daughter and then 2 weeks after she was born I was at home and collapsed on one side in the shower. It was later found that I had a clot on my brain and I was given. 48 hours to improve or I was going to die. Pretty intense at 34 years of age. I came out of the stroke symptoms within 48 hours and made a full recovery .... however I have since been diagnosed with prothrombin 2 mutation and I'm in constant fear of it happening again. I have had headaches for the past 3 weeks and I'm terrified it's happening again. Apparently after a first cvst u are more likely to have another. My anxiety is through the roof. I had to deal with a. Traumatic loss of my daughter, then a stroke and then this year I lost my father. Is it all worth it. I hope so . I no longer can safely have a child and my daughter was my only child. I feel so lost and hurt and like I'm being punished. Guess I just need to talk to people who have had these worries in their lives and how you keep positive.



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  • Posted

    My stroke was three years ago on Tuesday. I had the opposite to you, most people, like you, have a clot. I had a haemorrhage, a bleed of the brain. That bad that they transferred me to another hospital and were going to cut my skull open to relieve the pressure, but thankfully, decided against it in the end.

    You're never quite the same after a major stroke, I was told by consultant after a few weeks, that they (consultants) were surprised that I had survived. You tend to think about it everyday and it is hard to let it go.

    Well, my view is it is better to be alive than dead. I had to have hospital rehab on my arm for nine months afterwards and it was at a specialist stroke rehab hospital. Looking at most of the others, let me knwo that I had got off lightly and to be grateful.

    Please don't expect too many replies. For some reason. people don't tend to come on here and talk about their stroke. I thought many would want to, maybe lots read but don't post. I'm on a lot of the forums here, because I have had other problems than just a stroke and people actively seem to talk on those forums.

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  • Posted

    Hi Claire so sorry for your loss  xx

    I had a bleed/SAH/Ventriculitus/Sepsis then to crown it all Hydrocephelus and a shunt put in.  Is there nobody who you can talk to?  I joined Behind the Grey about Strokes and people who had them.  It was good to know I wasn't alone.  I remember good times and sing badly, my poor family.  Try and get help and you do need to chat to someone it does help.  My Surgeon said no stress !! that's when my singing kicks in.

    Keep Well and all the best to you xxx


    Win xxxx Old Dear xxx lol

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    • Posted

      " I joined Behind the Grey about Strokes "

      I can never understand why that forum was only SAH and excluded ICH (as I had) which is so very similar.

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    • Posted

      Sorry you never got help from them RHGB, I was lucky as I had an SAH !!

      Never mind I just thought if  Claire needed help and any port in a storm as they say xx  Just to be able to give vent xx

      Good luck All

      Win xxxx

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    • Posted

      No need to apologise. I just always wondered why they only covered SAH and not ICH. They are pretty much identical, except ICH is a bleed within the skull and SAH just outside the skull. Ischaemic (clot) strokes account for about 85%-90% of all strokes and haemorrhages (brain bleeds) account for the rest, being SAH/ICH.

      I couldn't see any logic to separating the two, when between them, they account for little more than 10% of strokes.

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    • Posted

      I did have a brain bleed when I had my SAH, that is what made me pass out for a year nearly, I saw my parents but my Mum would not allow me to speak to any of them.  Maybe a dream but to me it was real.

      She made my brother finish his song and said "No more Barney" lol it was like a party. I am so glad to be alive and BTG made me feel not so alone as they had gone through it xxxxx  Wishing you well RHGB

      Win xxxxx

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