goldfish.girl

Hi Stephen, I don't have any answers for you but I do have the same problem. I am not usually aware of it happening but and am usually surprised when people point it out and (and generally argue with them that they are soooo wrong!!!!). I was told after SAH over 2 years ago that the risk of seizure was high in the first year after a brain injury and that if you have no seizures in the first 2 years you are unlikely to have any after that? I would be really interested to know how you get on if you do seek advice from your doctor. I have had a few falls where I believe I am totally with it but do not always remember smaller details of the actual fall. Has this happened to you? Good luck!

Hi Karen, I agree with what KelBel has said. Having an understanding manager & colleagues who realise you may have to do things differently is crucial. I think you have to see for yourself how it goes and it is always good to try so you know you did your best - it may work out well, it may not. Personally, I did not understand how difficult trying to carry on with what I did before was and after being back at work for 2 years, I finally started to see! I have been on sick leave since Sept and can now see, after stepping away, that trying to pretend I'm still the same and taking on more & more was a very bad thing. It's hard to identify that when you're in the midst of it. However, everyone is different and you might be surprised at how much of what you did before comes naturally. I would only say, if trying to go back is really draining, ask for all the help you need to continue and accept it early on if things are not as they were before - don't keep pushing yourself if it's too hard. Lots of luck x

Thank you Karen. That exaggerated head/eye movement is exactly what would have me flat on the ground!!! My physio has all been about improving core muscles. I did question this as I think my falling is caused by dizziness and turning my head too quickly and nothing to do with muscle tone so what you have said is very interesting, i'll ask about it. I don't have a stick but there are days when I think it would help (I find it embarrassing though, I had one in the early days and refused to use it and stayed home unless I had someone to come with me so I could hold their arm). Lawla, thank you for your reply. I went for petrol today, staggered getting out of my car, couldn't get the petrol nozzel into the hole, then staggered on my way in to pay. Sure the staff thought I was drink driving & felt I had to keep breathing over them as I paid just so they would know I had no alcohol fumes coming off me - sure I'd fail a sobriety test too but I think it would make me laugh trying!! On a different matter, I have just read that even Paracetamol causes rebound headaches? I knew codeine did & try to only take it very occasionally. I go through packets of Paracetamol though each week. Does any have more info on this causing rebound headaches please? Michelle x

Thank you Leo. I have been off work since the end of September so I don't think i'm doing more than before - if anything I have discovered how much I can sleep, any time, any where now that I have stopped forcing myself to keep going! Karen, I have been going to physio for a few months to try to help with my balance. Can you explain more about training your brain through physio please? (or was that a figure of speech lol) Rod, i'm sorry to hear about your intruder - that is the last thing you need to have to deal with, hope all is ok now? Happy, healthy New Year to you all xx

Thank you for all the replies. I think I will visit dr, because I keep worrying that if things are getting worse, something might've gone wrong again. It helps to know that this is something other people have found happening to them. Thank you M x

Hi, Has anyone else had after effects of SAH that seem to be getting worse? I am almost 2 and a half years on and although some things have improved a bit the headaches, diziness and balance haven't. I seem to be falling more often and am having lots of near misses on stairs. I'm also finding that when I see people I 'know' my brain is not registering that I know them even if they say my name (a big clue that I know them!) it's taking a while to understand who they are - I look when someone says my name but there seems to be a long delay before my brain understands that it's not just a face, it's a familiar face. I'm feeling quite worried by this as I thought things would improve or at least not get worse. Has anyone else found things getting worse after so long? M x

Hi Jen, Wish I had thought of that before I went Christmas shopping last week! It was so busy I just wanted to keep going and get it all over with. What a nightmare, I ended up sat on a doorstep like a bag lady while someone went to fetch my car as I could not walk another step!!!

Hi Donna, I still get constant headaches over 2 yrs later. Most days they are mild but I have regular major headaches (although not as major as the SAH one!). I find being tired, upset or stressed are triggers but do go to my doctor when they are really bad and angios have been fine so far. Just unlucky I think. Hope they improve for you soon xx

Hi Liz, thank you for your reply. It seems that these idiots are in every work place!! I have suffered cognitive impairment but that doesn't stop me doing my work - it just takes longer & a lot of exhausting effort. I have been trying to contact a full-time union rep in Edinburgh (i'm in PCS union) so far she has ignored my calls and an e-mail from a local rep. I couldn't be more disgusted with them! I am waiting for the contact details of other full-time reps and will try one of them but it's a poor show when the union you have paid into for many years leave you on sick leave for 2 months without providing any support. I have no intention of going back until something is done as I really don't think the stress & upset are very good for my head. I'm really pleased that you have now got a decent boss, shame there aren't more of them around!!!!!!

Thank you all. I'm hoping to involve a local equality & diversity officer at work but have to say i'm finding it all a bit too much to deal with at the moment so am keeping quiet on sick leave until I feel a bit more up to it but will look into the suggestions you have made. Thank you x

I meant 'as soon as I feel well enough to'....

Well done Kel! I would love the opportunity to do the same! (It may happen yet - as they hand me my P45 ha ha) Thank you Jules, unfortunately I worked in the same place before the SAH so couldn't keep it quiet & the change in me is obvious but thank you for your words of support. Paul, this person is in a 'management' position and I think you are right about the local level of union support not being in a position to take this on. I am going to stand up for myself as soon as I feel enough to but it has been devastating to be put through this after all I have achieved and I'm really needing a boot up the butt to stand up to them! I think they may be crossing a legal line but claim that business needs must be met so I have no idea where I stand. I just know what they are doing is totally unfair and very wrong on so many levels. GG x

Hi Zoe, maybe it will take time for Richard to adjust to being at home again. I think you said in an earlier post that he wouldn't participate much with others in the hospital where he has been for such a long time and it hasn't occurred to him yet that when he is back at home full time he can have a say in what activities he'd like to do rather than have to attend what is on offer by the staff? I know that I sometimes don't click that I'll feel better if I do something. It's as if the part of the brain that used to have ideas doesn't always work any more. As an example (and I realise that Richard has been more badly affected than I have) I kept thinking 'the kitchen bin stinks' but until someone else commented on it, my brain didn't think to empty & wash it. I know this sounds very simple but it might be a simplified version of what Richard is going through? I hope others are able to offer better advice!!

Thank you for the replies Jess & Kel. I really laughed when I read that you told him to * off. I bet you felt so much better after saying it!!!!

Hi, has anyone else faced discrimination at work post SAH? I have had problems for the last year with one person (all the rest have been fantastic with te support they have shown). The latest is adding things to my terms of reference then (as I knew was coming) putting in writing that I am unable to do my job. Momentum are trying to help but the Union I have paid into for many years are being very slow in providing a trained person to give hands on support. Have any other members faced this and had a happy ending? At present I am on sick leave and seriously struggling to get on top of how stressed I feel. It has been a very long road to get to where I am and I'm not sure I have the strength to carry on fighting people who are so igorant to the after effects of a brain injury. You can't force people to see when they are pretending to be blind!

Hi John, I still have balance problems and dizzy spells after 2 years. I find it embarrassing and also worry that people will think i am drunk. I also fall over sometimes which is even more embarrassing and usually always happens when there is an audience (only rarely in the privacy of my home!). I hope it will get better but think it's just something I have to deal with now. I always end up laughing when it happens and it helps when those i'm with laugh too. I hate it when they just stare at me looking stunned!!! I usually need help to stand up again but luckily it doesn't happen too often.

Hi Zoe, It's lovely to hear you sounding so much happier & more positive. Lots of luck with having Richard back home. It's good there is some help being put in place and that you can continue to work. Although it is 'working' it will probably be good for you to have some time away from being a mother and a carer and will hopefully help you to keep some 'normality' in your life. Wishing you, Richard and the children all the best xx

Hi Karen, I clicked on your link (above) and got a story about a man who stabbed his wife to death after a fall downstairs caused damage to his brain????

Hi Karen, thank you for bringing up a genetic link. My auntie (mums sister) was left severely disabled by brain haemorhage (can you believe I STILL haven't remembered how to spell that?!) My bleed was at 38 and maybe my bad living (smoker) brought it on sooner? As I have 3 aneurysms, I've been told it's probably genetic and I am at risk of developing more. I have two children. 1 consultant says it would be a good idea to test them, the other says definitely not as one child is very young and for the other it may highlight 'more problems than it can cure'? It terrifies me when I look at their beautiful faces to think this killer may be waiting for them. My older child has migraines (as I used to) and I panic when my younger child is unwell and says his head is sore. Half of me thinks they should be looked at and prevention is better than cure, half of me understands that they could have aneurysms that are untreatable and it might be best to live in ignorance?

I echo what Mace says. It is brilliant to have a specialist brain nurse on the site. It's great to see specialists taking an interest in what happens after the critical care ends and can only be a good way forward for after care. I hope Kath can encourage others in the field to do the same. Although, perhaps they already do view the site but just don't post? Even that is great and will surely help with follow up care? I think the 'brain' nurses do a fabulous job in difficult circumstances for both patients and their families and obviously kath has an interest in what happens next. Thank you for taking the time to see how we recover and offering advice.

Hi Zoe, Richards family seem to have suggested you can 'walk away' a couple of times. Obviously they love their son/brother very much and want the best for him. Maybe he could have a couple of home visits with them to help him realise how life would be if he didn't have you and the children. It might be a useful exercise for his family too, in that they will see the physical and emotional challenges of what you are going through. My guess is, that although he cannot help a lot of his behaviour and how he feels at the moment, I do believe that after SAH perhaps we all push those closest to us way too far and could probably show some restraint with others if our 'punch bag' is not available. Take care xx

Hi Karen, I think you should run a poll on how many members on here think you ARE the modern day post SAH superwoman! The only person who would be surprised by the overwhelmingly positive outcome would be you! You are an inspiration to all of us. You have an amazing balance of having been there and done that whilst still encouraging others to never give up hope and helping them see that their own outcome may be even better - and seeing where you are now will keep that hope alive for many. Credit where it is due! Take care, M x

Hi Zoe, Don't be too down-hearted about the noise your kids make. I can no longer tolerate any noise or busy environments. My little boy was 7 when I got ill & believe me his only volume is LOUD too. He now understands that although I love to hear him being happy I can't tolerate loudness & banging & charging about. It takes time but we have a compromise where he is still a child but knows he needs to be noisy away from where I am and sometimes turn the volume down on his xbox etc. It does make me feel very guilty, but what is, is and although he forgets sometimes, he does understand that I don't mean to be grumpy, I just really can't tolerate his volume sometimes. Seeing me become ill with head pains since the SAH upaets him very much so he has learnt (along with me) what my limits are. I am sure your children can learn too. Yes, it is unfair, but they love their dad and don't want to make things worse for him. It is sad but they may have to learn compromise many years sooner that they should - I'd like to think (in my own childs case) it wont harm them but perhaps make them more understanding adults? Parks (without dad there) and friends/grandparents houses will still be noisy childhood zones. I hope this helps. Take care xx

To Louise & Liz D, I just want to say 'hi' to fellow Edinburgh Western General patients as I had both my ops there too (although I live about 200 miles away!) Liz, I wish you a speedy recovery and agree with what Jaykay said about not rushing back to work. I went back within weeks as I didn't understand how serious the SAH had been - through lack of information, and being in total denial! Two years on, I am having a very hard reality check and if there is early after care/intervention available to you, I think it would be good to listen to what they say, although everyone recovers at different stages and in different ways. I do wish I had had earlier information but also am pleased I had no idea how long the recovery would be as I now know I gave it my very best (ignorant?) shot before I had to accept my new limitations. Obviously, everyone is different and I hope you recover well and soon. The early days are VERY hard and it is great that you are aware of this invaluable information site so early on. Take care xx

Hi Karen, your post was brilliant although it startled me a bit as all the posts from you I have read since I started looking at this site have been so helpful and so positive. This one was too, but it was also good to know you are not 'super woman' all the time and have the same worries and doubts as myself (although yours seem to be more under control, to your credit). I do still think you are 'super woman' and amazing in what you have achieved personally and in relation to helping everyone who posts on here but it also made me feel better to realise that even someone like you has reflective days. Thank you xx