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Showing content with the highest reputation on 01/03/19 in all areas

  1. 5 points
    Once of the most distressing things for me post SAH was my ability to cope with cognitive demand and sensory overload. It was painful. In time that’s passed since, 7yrs, I have learnt more about my triggers but also how to pace and rest in ways that’s right for me but I still know flooding can and does happen. I still wear sunglasses and earplugs on many occasions and still alway carry them. lots of people come to site and struggle with the sensations and how this feels And I think this is a great education video that explains it credit to Northern Brain Injury Association
  2. 3 points
    Thank you both for all of your kind words and comments! It’s great to hear your advise, and I will definitely take a look at the threads you recommend and show them to family. I have been drinking as much as I can, usually trying to hit a 2ltr a day target. I have also notified DVLA who have contacted the hospital and received info from them, I’m just waiting for them to make their final decision... but who knows how long that will be! With regard to my SAH itself, the reason for the stent was because I had a deformed artery with four anyerisms off of it, and one had bled, but they had to stop the other three from doing the same. Very scary, and absolutely no warning! On the plus side, my recovery is going very well. I just need to learn to rest and not push myself too much, which is hard when you’re not good at sitting still and like your independence. Happy days! Good luck to you too with your ongoing recovery. Kind regards Sophie
  3. 2 points
    Sarah, really hoping it goes well for you, do come back here if you need to chat anything through, people will Try and Help. i posted a link to a video I found about ‘flooding ‘ in the SAH hints and tips section which may help. I wish I had seen it early on as I have come to the rhythm of it only in the years that have passed since. We are all unique in our bleed impact so return to work for instance is a complex one as our bleeds are different, varying in scales and extent , damage in different places to equally unique brains and we all do different jobs...main thing I think is to talk and be open and I do believe if you are good at your job then people for the most want to find a way to make it work and keep you. Consultation and risk of redundancy is a hard thing especially post SAH, take more time to rest than you think you need and try to notice when you are getting close to overload maybe. My sign i am about to run a red light is a very stiff shoulder and increased grumpiness. If I ignore that I can expect some head reaction that will no doubt leave me worried and unsettled but I’m a little more used to it now. I for instance lost sight in one eye for a while last year, had to get scanned, everyone panicked , but a lovely neurologist concluded it was my brain reacting to a migraine. I don’t get the pain now from a migraine it seems but instead it just switches bits off...misfires! BUT ALWAYS CHECK IT OUT they never mind. And try to find ways to relax in the middle of that. My trick is if it’s not getting worse then you are probably okay and have to just sit and watch and breathe. Hard though. So Im really glad you are getting checked out . Good luck , I had frequent MRIs in early years at behest of Team and only recently got news I now no longer need an annual scan, I came to find them a positive thing and of course it gives a great baseline for your team of how things are.
  4. 1 point
    Hi Jess i think some of the tips of what helps bring comfort may work equally for a child; so don’t overstimulate, lots of water, healthy food intake anD eat more regularly , probably check vitamin and mineral levels regularly especially as she’s growing too. Different strokes help young survivors of stroke which SAH is a type of . They may have more experience to share https://differentstrokes.co.uk/
  5. 1 point
    Thank you for that Daffodil, and for the link to the flooding video. It makes so much sense and sums up so many of my problems. Nice to have specialists backing up my requests to work early mornings not afternoons too! I’m back from my appointment and still a bit confused the good news is that there has been no new bleed and they still see no signs of any aneurysms. However, on MRI scans with dye then some ‘unexpected fringing’ is showing up around the initial bleed site which they aren’t sure about. My case & scans will be taken to a big radiographer/neurologist department meeting and discussed there to see if any more light can be shone on it. I’m also to call the neurology department if I get another spike of headaches or feared thunderclap rather than my GP now, and the same if I get any limb numbness or sight problems. I am simultaneously nervous that something is still amiss but relieved there is no new bleed, and also relieved that there is something still wrong to explain the headaches, fatigue and memory problems. I was beginning to think it was all in my mind rather than in my brain. The dr will write to let me know the outcome of the clinic meeting but for now will scan and see me every six months. Now if only that nice weather would come back...
  6. 1 point
    Hi Jessica sorry I too don’t have a lot of advice for you except what the others have said about water etc. My brother had SAH when he was 16 that’s the youngest I’ve heard. He made a full recovery but was in hospital for a long time. Mind you that was about 50 years ago when you stayed in a lot longer than now. Hope she she recovers well and you find the support you need. Clare xx
  7. 1 point
    Hi Jessica, Welcome to BTG as we call it, So sorry to hear about your daughter having SAH, 7 years old is such a very young age to be going through something like this, it will have been a very traumatic time for you all. I don't personally have any knowledge about where you can get more information, but I can say that you have come to a great place for help and support, if anyone here has any information that will help to point you in the right direction I'm sure they will come along and share it with you. We can't give medical advice as non of us are medically trained, what we can do is share our own experiences of SAH, give you lots of support, there are quite a few here who are carers of someone who has suffered SAH, so don't feel like you are alone, you are not. 2 months is still very early in terms of recovery, try to make sure your daughter drinks plenty of water, staying hydrated does help with headaches, lots of rest and trying not to over do things will also help, just take it one day at a time. The recovery road can be a little bit bumpy at times, good days and bad days are normal early on, we are here for you and we will try and help you as much as we can. I wish you and your daughter all the very best as you go along the recovery journey. Love Michelle xx
  8. 1 point
    Hi I’m new here , my husband had sah 17 years ago. He was walking round with it for a week in terrible pain and 3 doctors told him he pulled his neck. Anyway eventually another doctor took him seriously and he was rushed in hospital. We were told he was very lucky to have lived. After all this time I have so many questions , every couple of weeks he gets these terrible headaches and feelings of been drunk (doesn’t drink), he can’t tolerate lights and sits spaced out until eventually it passes. No one has been able to tell us what these episodes are. To me he’s not the same person, he says some really nasty things to me and doesn’t want any affection. We never go out together and he wouldn’t care if I never spoke to him again. He also gets obsessive about things and just goes on and on. To be honest, he’s a grumpy old man and difficult to live with. Sorry for long post , can anyone relate to this? Lisa
  9. 1 point
    A letter from your brain Hello, I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh? Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me. I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die. I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that. Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use.
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