Bev897056

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

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 face it, none of us know whats round the corner so why the hell worry!!! It's been a year and a half since my bleed in my temporal lobe and I don't think ill ever be 100% but battling through and once this avm has been zapped, I should be in clear!!! Love to u all out there, either newly diagnosed or still trying to battle on.... Keep smiling xxxxxx

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 was under a lot of stress and probs drinking far more than what I should!! I am hoping that this gammor knife will seal up this horrible avm and take this nightmare away!! X

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 am trying to work 4 days a week and care for my 3 year old so can't be like a zombie. I am scared everyday of having a grand mal....the de ja vu things just come out of nowhere and last about a min and leave me feeling really scared. Am just fed up with it all. Maybe I need to go bk n discuss medication again I just want this damn avm gone but I suppose it all takes time xxx

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 still panic at every little thing!! Bev Xx

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 bit easier to handle- I was never happy been told it just happens it drove me mad. Keep on at the consultants to get an answer I say and if they offer you another angiogram take it because like me your cause could've found and dealt with. I wish you well for the future and give yourself time - you have been through a tough time but I promise it does get better. Bev X

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 tests. Let me know how you get on x

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

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

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

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

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 know we have ours and have or r dealing with them and survived the initial bleed. So yeah defs makes you stronger I believe x x

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

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

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 at times I just feel so alone! Very very sad x x

Thanks lisa. Now I am home and have had time to think about it I feel sick to the stomach and just want the damm thing out of my head. If I survive all this I will be so much stronger! What a day I feel lost and lonley and those horrid partial sceizure s scary you get a strong aura thats like strong deja vu over and over and ears go all echoy and you sweat at one point my pulse went to 165 I thought I was a gonner and I have had a horrid uneasy feeling since. I hope your ok chick. I didn think I could feel any ****** worse x

Yeah another mri to map out the critter then gammor knife surgery! It was so surprising how many people were in there with anyrusms etc waiting to have them coiled and what have you? Feel like I can finally move forward now I know what I am facing x x

So guys they have finally found what caused my bleed an avm! Just come back from my angigram! very small apparently and the reason they could not see it before was because of the bleed and blood clot masking it. So I finally have an answer and something else to worry about! It was 100% worth going for follow up angigram even though they r not nice and I have a partial sceizure I now have answers and can move forward with treatment. Love to you all x x

Hi kris thanks for your reply! Its always nice to hear peoples opinion on stuff I was always worried about my son being on his own he is 3 in in a few days! But its its not ment to be its just not. I just thought it would be nice so he is not on his own but dr may never know what pregnancy will do to me so would rather be here to watch him grow up than struggle to have a baby not to mention the stress and sleepless nights! Pregnancy puts a lot of stress on our bodies! As for my ich no wonder I feel terrible with blood spilling on my brain. I am trying to focus on my wedding in sept now I seem to always need something to focus on or tend to get down. X x

Hi so glad they got you sorted. I wonder if my massive complaint I put in to nhs direct and 8 doctors in total has made them sit up and realise. I went 3 week and saw 8 dr before I was diagnosed plus calls to nhs direct. I hope a memo got sent round to advise that they should take quick action. Their misdiagnosis has resulted in me questioning every little thing they do now and made me into a nevous wreck and had a sizable blood clot sat in my head for the 3 week causing scar tissue and epelipsy killing off brain cells cos noone acted quick enough. I am glad you got sorted quick and hope its taught the idiots a lesson x x

Hi linda I just noticed your post about hearing my hearing has without a doubte been affected I have a constant ringing in my head and like you muffled voices like I am not here sometimes. I get really bad vertigo too. Its a total nightmare! Is this ment to be just part of the after effects? Also job situation is the same with me! I didn't tell one of the employers I went to work for and should have only lasted two week as it was a care job on my feet all the time and felt too drained. With me having had a sceizure I feel I have to tell employers but know I will be judged by it and the bleed I feel unemployable now. I used to be so so confident and was never without a job now I just work 4 hours a week back at my old job as my employer knows exactly what I have been through and 4 hours is all I can manage at mo! It will be a year in march and I dont seem to be getting much better! X

Thanks chick! Yeah a lovely spontaneous ICH is what i had - not sah. It seems that most people on here had a sah! I presume that its just the area in which the bleed happened! Its just ridiculous the amount of info we dont get given on these things! Its like we are just turfed out of hospital and are just expected to get on with it with little or no help or info! no wonder so many of us are left with anziety, depression and ptsd! i am feeling a bit lost tonight! Have enjoyed a week with Andy my partner at home to help out and he is back to work tomorrow and ill miss him being around as much! sounds silly! Yeah fingers crossed they will say go ahead, i suppose they will just monitor me more (if i ever do become pregnant) xxx

Hi all new year new start thats what I say! Hope you all had a happy new year. I just wondered what the situation was after a bleed with pregnancy? Not that I am pregnant but one day I would have liked a brother or sister for my son but unsure of the risks. I know lin had a baby following sah did anyone else? I was never told from the dr about possible risks etc. My bleed was a spontaneous non traumatic ich with no cause so blood in the brain not a sah! I just thought dr should have warned me about pregnancy! Ill have a word next time I go to hospital but has anyone got any advice? Bev x x

What a lovely post macca just proves there is hope! Merry christmas to each and everyone of you and may all your dreams come true x x