Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

14 Good

About Bev897056

  • Rank
  • Birthday 08/04/1982


  • Biography
    I am 30 years old, and have a partner and a 2 year old son
  • Location
    Horbury, West Yorkshire
  • Interests
    Walking and reading.
  • Occupation
  • SAH/Stroke Date
    March 2012

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Hi to all and hope your all getting on well! I had my gamma knife it was ok - gotta wait 2 years now until they know if the Avm has been sealed up! I have suffered with 3 more seizures and take meds now which seem to be going ok. It's just something I have to live with following scar tissue from the bleed! My work friends hubby died yesterday from a brain bleed so it brought everything back home, so I wanted to get back in touch with all you that chatted to me in my initial days of worry and make sure your all ok and battling on like me Xxxxxxx
  2. Hi to you all!!! It's been a while since I posted on here and just thought I would post coz there defs is life after the initial hell!! My new hubby n I recently returned from Greece where we got married!i am still having sceizures but am in 600mg tegretol to try keep under control! I am going in Monday to have gamour knife on my avm to try and obliterate the thing which will take time- should know in 2 yrs, but beats having my head cut open! I just wanted to say that life does go on.... I now work full time, love spending time with my family and don't sweat the small stuff because let's fa
  3. Hi Dave, yeah have a feeling it was that well in fact neuro surgeon told me it probs is and that's why they prescribed me meds. I since told him that I wasn't taking either keppra or the other drugs they tried me on because they made me feel like a zombie. He said he feels its reasonable if I only had one grand mal and given the unwanted side effects that I can stay off the meds. I have cut back on alchol try to get at least 8 hrs sleep a night ( not easy with a small child) and just generally try to stay healthy. This doesn't stop me thinking I could have a fit. At the time of the sceizure I
  4. Hi Sally Thanks for your reply! After my full on sceizure ( bk in sept) where I awoke to paramedics in my bedroom at 1am to my partner telling me I have had a fit....the neuro tried me on kepra and Lamotrigine but both of them made me feel like a full on zombie. I do continue to have these scary de ja vu things- it's the same face I see every time and a awful home sickness feeling- only way I can describe it then everything around me goes all dream like. I have read and been told that its a sceizure that could result in a grand mal. I am not on any medication at the mo maybe I should be but I
  5. Hi guys I hope your all well - as well as u can be-not been on in a while- just wondered if any of u suffer from intense feelings of de ja vu- it's not nice, comes on really strong, its the same thought every time it lasts about a minute, and I get quite panicky and dream like. I have been told that its a form of temporal lobe seizure- I just wondered if its something n e one else got after their bleed? Other than this I am still getting dream like sensations and just odd feelings- I am going in for my 3rd angiogram next week and then gamour knife surgery! Has got a little bit better but I
  6. Hi wade I haven't been on here a while but u will find lots and lots of people with exactly same as u! It's totally normal- if u look at my posts in the months after bleed I was freaking out about the titinus swimmers in eyes n swim my head - I still get it all a year out- yes made it- but it does lighten a bit! I think in the few months after anziety can also make its 100 times worse. You may want to try cbt therapy to help. They finally found a cause for my bleed-an avm - and I have a meeting soon to discuss further management- and when I was told why the bleed had happened I found it a
  7. Hi gaynor sorry to hear your feeling anxious again. I totally understand what your saying. I was not satisfied at all with just being told it just happens and I had a blood clot for sometime in my head which they let it break down on its own -and they said this is what masked the avm cos it was pressing on it and not showing up on tests. I would ask for another angigram because I personally dont believe you just have a brain hemeridge. Everyone always said there must be a reason and I drove myself mad asking the question over and over and tiny finally found the cause. Push and ask for more tes
  8. Hi yeah I did finally get an answer so it saves me from constantly asking what the hell happened. I was sure there was something and they finally found it. Yeah will have gamma knife surgery which is like a bolt of radiation and over a period of 2 years the avm will be obliterated and I will be back to new! Well maybe not actually cos I will always feel strange I guess from blood sat in my brain for god knows how long but I have an answer so for now ill take the next step on the chin with treatment x x
  9. Lisa that dizzy woozy head feeling and that feeling like your not there is horrendos! I get it everyday its the worst bit and scares the hell out of me its like I am dreaming kinda thing and not even the neurologist Had an explanation for it just said its from the bleed but I think its mini type of sceizure or something. What ever it is makes it hard to live through the day x x I hope you get an answer from who ever you see x
  10. Was just wondering if anyone gets this dreaded feeling like a feeling of unease and uncertainity? Its hard to describe and maybe is cos I got the news of avm that I have it or maybe its the being back in the hospital for angigram thats dragged old memories up. I saw a lot of the same nurses and drs I say in april last year when they admitted me and that also made me feel odd! I just feel strange and dont like it x
  11. I cant believe how many people have avms and brain malformations! I always say I would rather be going through this avm business than my child its must be awful for children and parents to deal with its hard enough for us x
  12. Thanks sarah it was such an odd day yesterday. I went to my cbt and she was just saying that its good they found it no more stressing my head out wondering if what why I know now! The consultant said that in the year its bled it has a higher risk of re bleed well I am nearly a year up so then it goes back to 4% risk of re bleed what ever the risk it needs dealing with but now they r on its case and anymore headaches like before I know ill be straight in the hospital. I feel safer than the general public who have never had their head checked cos anyone can have an avm or anyrusm etc but we all
  13. Or ladies from the bottom of my heart thank you for your kind words. I have cried lots today and your right those angigrams take it out of you but must be done. Onwards and upwards I now know what I am facing. And mary your right one day I will have so much knowledge and will be so much stronger and will use this to help others. Thanks again your all angels x x
  14. Thanks lisa just canttame the uneasy weird feeling at the pit of my stomach. Probs shattered to after a long day at. struggling to relax. Andy popped to shop he is upset too. Oh crikey ! I think I would from seeing a neuro psyc now cos this is a bit much but at least I know whats sat in my head just bit unsafe at mo while they plan what to do with it. I am so glad your pushing through and trying to get on x x
  15. Or thanks lisa I just dont know how much more I can take am trying to be positive but it seems to be one blow after another and I too am struggling with my son he is 3 in a week. Hospitals in general give me an awful uneasy feeling too and being back there today seeing some of the same faces I saw last year with bleed just freaked me out same smells and all sorts! This whole thing is effecting me more than I thought! I am crying now and just so so fed up. I know I have to be strong for jack but god its so hard sometimes. You seem more positive there days but I am sure you have felt like this a
  • Create New...