Bev897056

I know what your saying it is kinda taking over my life at moment cos everywhere I go I am afraid I will drop down and fit. Ill just try use meds! I find it hard to trust drs after initial mis diagnosis I think and hope a neurologist knows what he is talking about. Ill take the medication and persevere x

Hi all hope your all well. Went back to neurologist wed and had my preassessment for angigram also and the neurologist feels that I do have temprol lobe epelipsy and perscribed another anti convulsant tegretol thing is after trying keppra and latimal and feeling horrendos on them I am worried about trying more. I have had some "odd" experiences and he thinks these could be temprol lobe sceizures. Apparently all sceizure activity starts in temprol lobe. I only had one grand mal in my sleep and I suppose I need to weigh up the pros and cons of taking the medication! I know some of you have experience of this as you said in other posts So I was wondering how you decided to take the medication or not. Also has everyone got scaring after the bleed? I have been told I have which irritates the brain and this will never go? Also I asked what chance of finding something on angigram are and he said probs a bit higher than the risk of having angigram which is 1% so he said about 2to 3% chance of finding something like anyursm or avm so its a waiting game till I have it x

You have your life in order mary nothing wrong with that! I go see neurologist tomorrow to try figure out whats going no with this constant spaced out weird feeling. I dont really want medication after trying the two and feeling worse but ill see what he says. He has access to all scans so am asking him to break them all down. Also got pre assessment for angigram straight after dont know what that involves. Am shattered today didnt get to bed till 3am got cystitis big time am not worried this is connected to my head for once jusT shattered beyond belief. Bed early for me! Lisa how did your appointment go?X

Hi lisa.good luck today. I have been meaning to check in on you after your pains! I would quite happily have a mri everyday to check and put my mind at rest but dr and nurses just brush any thing off- its a joke! Let us all know how you get on x x

Hi guys was put on lamictal and that made me feel even worse than I did then keppra that was an horrendos drug and then back to lamictal but again I couldn cope with the side effects plus bruising on legs so I spoke to my neuro and he said to come off and I go see him next week! I would rather if I can stay med free the side effects of them r untrue even what is written. So no not taking anything ill see what the neuro says on wed I may also ring that epelipsy group see what they say! I went out last night on works do it did me good getting out for sure. I did have a few drinks but went steady x x

Hi mary you dont babble on at all. I never have eye pain at touch wood I dont have headache just a few twinges now and again my biggest issue is this spaced out dazed feeling and unbalanced! I just feel like nothing is real 24/7! I wooed if its something to do with damage to temprol lobe and the way a peceive things like the way my brain works stuff out only badly. Its awful but seems to have got worse since sceizure??dont get it. Off on my works do tonight dont drink anymore so bit worried how that will go am shattered too. Oh to be normal again xx

Oh god I hope your ok its just rubbish. All your thoughts get taken up ay this horrible thing. Its the uncertaintity that I cant stand especially with little ones. This is the card we have been dealt so we just have to try get on dont we xx

Its terrible lisa its like my story so many dr until one decided to look in my eyes then optition then a and e then ct scan and rushed to lgi after 3 loog weeks of knowing something was not right all clasic symptoms but I would have never thought I had a bleed! your not in yorkshire r you. I feel totally let down so how the hell can I believe what any ever say again,thats why I question everything all the time and its not helping not knowing why my brain has bled. They could still find something no angigram in jan at least I will know once and for all!i dont think I will ever get over it anxiety does make symptoms worse but I dont know how I can stop worrying. Like you going through hell x x

Do you think thats the anxiety from the whole experience? I am hyper alert so anything big or small leads me to think its all to do with my head or something serious and something bad will happen! Anything like if I have a cold I think I have something bad starting! I do not trust dr after I saw 6 over three week who all fobbed me off and I knew something was not right for gods sake and no it wasnt my brain had bled and I had a sizeable blood clot so how do I ever ever believe what one is saying again. I totally understand how you feel its awful and never ending x x

Hi lisa I defs did have bad sickness I took andrews into work and drank that all day I as you know also had dizzyness and still suffer from both not the sickness as bad. I often wonder if again anxiety is making these symptoms too. I started cbt theorpy again yesterday and the woman is amazing I have faith that I will get sorted. From what I explained to her she said a lot of my symptoms could be anxiety and ptsd but because I dont know for sure whats caused the bleed then it could be my brain too but in jan I am having another angigram (off for pre assessment next wed) so if they dont find anything I am hoping to come to terms with it and move on with the help of cbt,and she says that if I have only been left with spaced out dizzy off balanced feelings after something that could have either killed me or paralyzed me then she will help me to live with these issues. I was yesterday feeling more positive about things but this dreamy feeling keeps rearing its ugly head. Do you see flashing lights cos I do also and how is your eye sight? I have a lot of floaters and fuzzy eyesight! Its never ending lisa I also think the flu jab will have set you back especially if you feel ill to start with x x

Hi sandi well done on the volenteer job! Can I ask how you came about doing this did you quit you. Job? I am struggleing at the mo initially went back nearly full time in estate agents after 6 weeks and finally after my sceizure I decided to quit then got a job in care just two days a week but found that physical demanding so recently went back to do 4.5 hours a week at estate agents again. Its enough for me at mo I just wondered what your plans were will you stay volenteer or will you find a new job orreturn to your old job? I so wish I could work much more but my body is telling me no so I will just accept this for now x

Kris it will be fine! We sold our house in dec last year and I was stressed out to the max throughout the sale (i work in the estate agents and basically delt with my own sale) ironicly had the bleed in march this year and so had to put the move off etc till may this year luckily our chain was willing to wait! Everyone said dont go though with the sale a t I did because we are just where we want to be and right near a huge park fora my little boy. I often wonder if the stress of it all caused my blood pressure to rise and my bleed to happen! They do say its the most stressful thing you can do and I work in the job so yeah do wonder. But you will be fine just dont let it stress you out it is not worth it xx

You totally hit the nail on the head there mary we have clearly all had to learn the lesson the hard way. I have woke up today exhausted I took my son to leeds german market yesterday and must have walked about a thousand mile it was also mad with xmas shoppers! I found it hard yesterday and got in a panik at times but battled though for jack.something that i could take for granted before I clearly cant now so ill pay for it today, but I cant just stop with a little one its playgroup this morning and just constant entertaining all day. Maybe ill be in bed by 8 tonight. Just going to have to change the way I work any other tips on what I can do?xx

Its so hard to relax when you have kids though I was working too so knocked that on the head to relieve some stress! I realised that my son must be picking up on how fed up I have been and he has been playing up more so as rough and not with it I feel I am trying to battle through now and more important slow down too. Lisa do you have anyone you can rely on to look after your kids for a few hours to give you all important time to yourself to allow you to accept things? I never let anyone do that and there was offers but I never took up the offers cos I thought I was super woman or something and like I said thought I could just get on like before but I totally burnt myself out thats probs why I am like I am now feeling tired all the time and all other symptoms because I rushed to be normal now I am trying to accept that it takes time a lot lot longer than I ever thought x x

Hi all I just thought I would post, as for some reason the 'penny has finally dropped' so to speak and I finally realise what everyone has been telling me since my head blew up...that basically it takes a long long time for brains to heal and I cant expect it to heal now or tomorrow it takes time! I, since day one, after the bleed expected to be back on my feet, back to my nearly full time job straight after thinking that I would be recovered like a cold or something. I never gave my brain time to heal at all and so put it through more stress by trying to do exactly what I did before the event,rushing around working hard,taking care of my boy and looking after a house! This has now resulted in me claiming esa and concentrating on caring for my two year old which is a job in itself let me tell you because my body has told me I cant do everything and I need to slow down. Life is too short to be rushing around like a headless chicken just so we can afford to buy the latest gadget or what ever! I have always been someone who wants everything now now now and maybe my ways made me ill, but today the penny has dropped. From now on I will totally slow down, enjoy my time with my son and family and just take life as it comes. If anything this whole ordeal has learnt me to relax and calm down which is the lesson I needed from day one X x

Or win you seem like a lovely lass you all r on here. I did think I was getting better but then out of the blue I had the sceizure which sent me back to square one worry worry worry! I know I should think myself lucky as I dont have any major defects that others can see but its the constant dizzy unbalanced as I keep repeating spaced out rubbish but if I dont focus on it as much maybe it will fade! I dont know its just a scary unpredicable time thats frightened the life out of us all! Hopefully it can only make us stronger x x x

Sorry I ment hydrocepolis I have predictive text no this phone (prob not even spelt that right) x

Penny you are very brave for traveling no your own I admire you for not letting this get to you and just getting on with it. Can I ask how you know also you have hydrocepolis? I just wonder what this strange heavy feeling I always have memory is off and always hazy would I have a head ache if I had that? I dont touch wood have headaches now its just this off dream like feeling all the time x

I havent had weak feelings in hands and legs but I get pins and needles I have them now my worst feeling is this unclear head like its blocked or something and when people talk I dont feel like I am here and my vision feels fuzzy and the dizzy off balanced feeling like a woozy feeling its difficult to describe! I swear it went off for a bit a while back but after sceizure its bang back big time which makes me wonder if its a mixture of the bleed stress anxiety just constant worry ! Do you think about whats happened from the moment you open your eyes ? I cant wait to get back to bed because my mind is just in a state of constant panic all day every day nothing takes my mind off of it cos something will happen like ill go dizzy or get a stabbing pain in my head and I think here we go its happening again and I picture being back in hospital. I wonder if its possible to drive yourself mad with worry? Its got to have some effects hasnt it. I have tried medication for fits and all they do is make me feel worse. I feel like I am in a black hole seriously I wish it would go away! X x

Hi lira reading your post sounds just like me I too am sick to death of this dizzy spaced Out feeling I feel as though I am in a dream from the moment I wake up its oviously neurological I go see a next week and it cant come soon enough. I think I have temprol lobe epelipsy cos thats where my bleed was either that or major major health anxiety but I know one thing this spaced out off balance is not normal and its a vicious circle it makes us worry more and more. I cant deal with it at all its xmas and yeah like you trying to put a brave face on it for my boy but I dont even feel like I am no this planet. How is this normal or is it our new normal? X x

Hi everyone I was wondering if Anyone could give me some advice on the wonderful world of benefits please. Basically I have tried my hardest to return to work at estate agents 3 times and after sceizure and the removal of my driving licence I suit because I thought it was not fair to keep messing m. Employer around. I toot a job sat sun in a care home at hell it was hard hard work physically and what with not feeling Right Still I felt I may drop down any minute there so quit and asked my old employer at estate agents to have me back and they started me on 4.5 hours a week on a sat to increase when I felt right which goodness knows when that may be. Basically I am kicking myself as I should never ever have returned 6 week to same job nearly full time hence having to go back on sick 3 times I put far too much pressure on myself,but when your used to earning its hard to cope with not. I really appriciate my old employer letting me work there again but 4.5 hours is not going to pay my mortgage so my question is has anyone claimed any sort of benefits and actually not had to fight for then?and how do I go about that?i am 30 and have worked hard since I was a sat girl at 14 so why shouldn I try get something. I am sat here with the biggest head ache due to stressing about bills life and feeling ill. As if this whole ordeal isnt enough without the worry of money! I look forward to your replies x x

Carl I get this odd brain fog too its like a spaced out dazed feeling and my eyesight seems fuzzy a bit like I am dreaming is that what you mean when you say the fog? I dont think I will ever get used to it its with me most days and then the vertigo but you still have yours is it any less though? X

Hi Its so hard you feel alone and scared. I did a post a bit back about titinus, floaters in eyes feeling dizzy and spaced out you name it I also think we pick up on every little thing going on with our bodies cos we are hyper alert because we are expecting something to happen. I started scanning my body for anything that may be different and checking my pulse all the time and expecting the worst to happen I suppose! All part of it also think I have health anxiety too. Not surprised how it affects us cos we all have been through a life threating episode which makes you sit up and think big time and we are scared of anything happening again who wouldn't be. Maybe have a word with dr about cbt theorpy thats really good I started It but had to be put on hold since my fit as I cant drive to where they held it. I also really want to see about meditation to chill me out. Post as much as you like. It does seem like everyone on here are the only people who truly understand because we have all been there x x x

Orrr thanks everyone and Macca! - man i feel like a woman ha ha - Yeah i will try 'hang in there' - just find it difficult sometimes coz there is no slacking as i have a 2 year old and have now changed jobs so look after him 5 days a week and work Sat Sun 8 hr shifts - but hey, he will be off to Nursery next April so ill be able to have a bit of free time!! I have had my medication swapped also to Keppra and that is ment to make you shattered and moody and all sorts, not really looking forward to taking that! My neurologist put me on it as I had a grand mal and said that with having scar tissue, i am more likely to have more scizures (great stuff) so they put me on that as a preventative measure, well tried me on lamotrigine first, but for the first 2 weeks i have been on it i have been on another planet really spaced out - which is no good when i have a small child to look after - so i will see what happens with Keppra - anyone else had any experience of this following just one seizure. Also plan to get in shape - got a blood pressure machine coz i swear my bleed was caused by stress and probs drinking too much alcohol binge drinking etc which all can cause blood pressure to rise overtime (anyone else have any thoughts in this)???? - who knows its just my conclusion because i am still waiting to see if they will give me another angigram or if what they have done so far is enough (3 CT'S now, 2 MRI and 1 angigram) as neurosurgeon said that the blood clot from the initial bleed could have been pressing on a aneurysm or other malformation which would stop the dye running through it- but wouldn't the other tests I have had since have shown something? if the consultant radiographer decides i dont need another angigram, ill just have to deal with not knowing and keep healthy!!!! Anyway, thankfully my blood pressure is in 'NORMAL' limits thank the lord! Ooh i do go on, sorry guys! Thanks again for your replies - Bev xxx

Hi Anziety is pure hell, I know all about that, and I also have a little boy who is 3 in jan and I am with him all week on my own while my partner is at work and only work weekends now (16 hrs a week) Coz thats more than enough for me....so my advice would be to try not to rush, eliminate anything thats stressful, try cherish everymoment with your child and take everything slowley one step at a time. Yes its scary and yes its an uncertain time but you are not on your own because everything your feeling we r feeling or have felt too X x