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  1. 9 likes
    Glasgow efficiency at its best...in and out in 15 min and left the hospital 10 mins before my actual appointment time. So pjs and toothbrush not required! Now for that long journey home.
  2. 7 likes
    Hey Yoyo, First - welcome to BTG! Nobody is going to, or wants to, judge you for making mistakes - we all do it - this is mistake city and nobody cares about that. We do care about you and your wellbeing. They always say that to know how you're feeling we should all walk a mile in your shoes! Well, Yoyo, we have walked that mile, and more. Many of us have had these 'problems.' How we deal with them though is very different because we are all individuals, with different likes, dislikes, outlooks on life and so on. But we all recognise what you are going through. You are not useless, and you are not alone. Your husband is with you and we are here for you now, too. You are only eighteen months into this and brains take a long time to recover. They're not like any other part of the body and are a law unto themselves and won't be told what to do. In fact, it will tell you when your body has had enough and wants you to rest. And it will keep on doing that until you get better, which you will, over time. You've taken a short sharp rap (SAH), that has long term effects, and it has thrust change upon you abruptly, that normally would have happened gradually over a long period. How you now deal with it is what counts. You have to try now to think rationally, and not emotionally, about how you are going to combat this condition. It's not easy at first because SAH carries an emotional payload that is hard to shake off, nobody knows that more than me. Yes, you will be emotional at times, but when you are more able to think clearly, is when to should plan your response. That must happen in your own time, no-one else's, when you are ready. And you can do it little by little. So carry a diary, a notebook and start to write things down. Use the notebook/diary as your memory bank as a kind of temporary substitute for your brain. Let them take the strain off you a little bit. Take regular breaks, and don't try intense concentration for long periods. Do it in short bursts - then rest. Stay hydrated, this usually helps minimise the effect of headaches. Try and start to do somethings for yourself, independently and see them as stepping stones and achievements towards better things. As for your relationship, the best thing you can do with your husband is to talk to him about the effect the SAH has had on you. What are your hopes and fears? How can he help you? And then let him speak and tell you the same things form his point of view. Importantly, don't cut him off, mid sentence by getting all defensive. What you need is a frank admission of all these things and then together - I'll repeat that - together - you can work out a joint plan of how things are going to be tackled. This can actually draw you together more. Has he felt left out, have you told him how you truly feel and vice versa? He has stayed with you this far, why wouldn't he see the battle through until the war is won? You say you don't know where to turn. Turn to your husband, and let him in, to help you deal with these issues. You can both get through this. Brain injuries aren't easy to deal with, nobody says life will be easy. Yes, some things may change from the way they were before, but they are just different, not better or worse. It's how you view them that is important. Look forward, not back. Learn from the past, don't dwell on it or live your current life through it. Talk, talk, talk! And don't forget to keep posting on here. We are here for you too, typos or not (they don't matter so don't worry about them). Macca
  3. 7 likes
    Thank you for your reply. The highs? Well, I survived. I'm here to tell the tale so they say. I have accepted the 'new me' the old me has gone, replaced by one who cares less about what others think of me. Says things as they are, no beating about the bush these days haha. That is partly down to there being less of a filter and partly 'there are more important things in life to worry about' attitude. I take pleasure in little things, like half an hour in blissful peace and quiet with a cup of tea. This is something I used to take for granted, but not anymore. Appreciating what I have. A beautiful family, my cats and dog, a roof over my head, a warm bed every night. They might sound trivial but I have something that many others don't and for that I am grateful.... The lows? Hmmm.... there are many The poor memory persists. I get frustrated, others get frustrated with me. We plod along though. Headaches.. urgghhh... though much better than the early days which is a big positive, they do still plague me and still worry me, especially if it's an odd pain, or in a different part of my head to normal. Fatigue gets me. Every. Single. Day. Some days it will creep up on me and others? BANG! I'm floored, can barely lift my head. I try to walk as much as possible but I find even a short walk exhausting. I have some weakness in my left side for which I am awaiting some physio. I have an appointment next week with an occupational therapist so things are progressing. I think if I was able to concentrate on me, my health and my own recovery I would maybe improve quicker, but sadly that's not possible at the moment. But all in all I'm feeling pretty positive. Take care all. Deb. xx
  4. 7 likes
    Hi Jan, You're seeing your glass half empty, not half full. Your feelings are real and they're not nice at all. I think most of us have been there at some time or another. How do you know you're not in a bout of depression? It can recur just like anything else. Go and see your doctor to re-assure yourself and let off some steam and yes, to get some medication if that will help. SAH affects you mentally, as well as physically and not everyone sees that because there is no plaster cast for your brain! You state your apathy is relentless. I would dispute that, to some degree at least. Why? Because if you were apathetic you wouldn't be arguing - you are arguing because you care! And you are closing the windows so the neighbours might hear - that is because you care, not because you are apathetic! You resent the 'normality of their lives' - because you care, not because you re apathetic! You also wouldn't have said to John to go and find some happiness if you thought he would go anywhere! You said it because you knew he could take it and because you care about his happiness and thought you weren't providing it. That is not apathy. That is frustration. No, Jan, what you are is not apathetic. You are angry at the perceived lack of support from those around you and you have taken it out a little on John - the one true source of support you have, because you care about him and because he is the nearest thing to you to vent your spleen on without doing too much damage. I agree with Keith - you need to get your sisters in a room, sit them down and tell them your true feelings. They are not, from what you say, supporting you in the way they should. But have you explained to them what it is you want, need and expect? Have you told them what it's really like to have a SAH and how it affects you? Can you expect them to do what you want them to provide, if they don't know what that is? Are they more frightened than you because they haven't gone through this before? You all need to sit down and talk if you ask me, not only to clear the air, but to fully understand the others point of view. Not only that, but to prevent the situation getting any worse than it already is (as you see it from your point of view, of course) Louise's idea of letting your sisters see this site is also a good idea. Would they be receptive to that - or is this a place you see as a source of refuge to let off steam? In which case, don't, especially if it would have the opposite effect on you and stop you coming to us? Maybe the pressure of your upcoming wedding is adding unseen weight to the pressure you are feeling - can you delegate some of that to your sisters - or John? Now, look an the bright side! You've got a wonderful bloke and you are getting married, I understand. You've got your sisters. What is normal? Normal is what you make it. Probably different from what you experienced pre -SAH, but who is to say your sisters' version of normal is better - maybe they resent your lifestyle? Have you asked them? What about sitting down with John and telling him how you feel and discussing what you can do differently to come to terms with how you are feeling and what you can do about it? Then perhaps you can go to your sisters together and present a united front. Undoubtedly, things need to change a little bit, but what are you going to do about it? You need to establish what's wrong, what it is you really want and then formulate a plan to make it happen. In order to do this you need to communicate effectively, so write a plan and go through it methodically (trying to keep the emotion out of it as best you can) and be willing to compromise if you can't totally agree. You cannot change the past, Jan, but you can shape your future. I'm not criticising you Jan, just trying to be objective and help you see what I see from the outside looking in. It's like going back five years for me and I came through it. You can too. Jan, your SAH hasn't won, you're not even at half - time yet! Good luck Jan, bless your heart. I wish you luck - let us know what happens, keep talking to us too. I hope this helps, Macca
  5. 6 likes
    Hey Yoyo , well done for having the courage to post and join the group and it does take courage to put yourself out there and admit that things feel broken and that you weren't as you are, that's a huge deal but we , as Macca says so well, know that feeling, have had those fears and together we are stronger. First, and this is for you too Andrea, it's ok to be a little lost but when feeling that way offer yourself some kindness and generosity and self compassion the same as you would for others for what you are having to learn and adapt to. It's a big deal and no easy path. The SAH arrive with the force of a hurricane, each of ours unique, no one knows the path or the destruction it wreaks as of course that is as unique as the person we were before. One thing we share though is the brain we had before altered in that moment, it can never be exactly the same as before so change will be your constant as you find new boundaries that weren't there previously. Yes some people make ' full' recoveries and in that I read that they manage to reclaim their previous pace and style of living but many of us have no choice but relearn to do things, to learn the new ways that work for us now, find the new pace, and that takes time to adapt, to adjust. But it gets better with time. Whilst we are exploring this new operating brain of ours that our partners also are adjusting to the fact that this other person who was oh so capable before their bleed may not be able to do all they did , may never do it and whilst torn between wanting to protect you and keep you safe they also have a loss to deal with as that plan of your life and how it was going changed is gone and a new plan is to be made, So great advice already. Talk if you can. Love makes that harder and easier. Easier because you want to lift each other up and harder because neither of you wing to hurt one another. But come together, lean in not out and it's the step towards getting this new future inked out together. I was 39 when I had mine. My life today is very different to that previously but Five years on My aspiration and ambitions have shifted to take the reality of my new state but I remain curious about possibility and I find happy in the smallest of things. The two year mark was the hardest to be honest , I realised I was trying so hard to force myself to get back to what I was I was losing sight of what and where I wanted to be. So I focussed just on taking each day, celebrating the little and big victories and sitting out the storms each time they hit. It's a change in pace and you'll find yours.
  6. 6 likes
    Hi - I've used Titanium as my 'stage name' as, along with platinum, it's one of the sturdiest metals and that's why it's often used to decorate (aka repair) our brains. Firstly if you're a fellow SAH survivor reading this I want you to pat yourself on the back as the quoted SAH death rates vary from 45% to 80% within a month, combine that with the fact there are only 8-10k cases in the UK every year so some GPs only have one patient during their whole career then I think we're doing well! Especially when people hear you've had a brain haemorrhage they always have a tale of a relative or friend who had one too but they weren't lucky enough to wake up again. I had my first SAH in August 2010 (no headache previous to it) - I was walking on a treadmill at the time so have realised that I shouldn't believe what they say - exercise is actually bad for you! The SAH was clipped and I went through the learning curve pretty quickly as I run my own business so had to be on the ball to pay my staff wages at the end of the month. Part of me wanted to be able to be at home to do a proper recovery but the other part of me knew that I could do that for a long time but going back to work would still exhaust me whenever it happened and by having to use my brain it got it back into the groove quicker. As I was only 38 at the time I knew I was lucky in that youth was on my side. I had my second SAH on Friday 13th (previously my lucky date) in 2015 - again with no headache prior and literally just heading off to work. This time they looked to see if they could coil and they were able to so I avoided having hair like a nest this time. Within 8 weeks afterwards I had a large seizure (again no warning and hadn't had one prior) but fortunately the ambulance arrived quickly and gave me an oxygen fix - since then I've been on Keppra although it's questionable as it delays brain recovery (anti-cholinergic drug). I have had 2 cerebral angiograms since and have refused to have another one moving forward. The last time something happened in my brain that the neurosurgeons haven't heard of before so given the high risk I don't think my brain will entertain it again whilst I'm awake (plus they damaged the femoral nerve artery so it was mega painkillers and unable to walk for a week). They discovered I need more metal in the second SAH by it hasn't grown since the previous CA and I now have a third unruptured aneurysm but we're just leaving it until next year - I've done a comparative on the last 2 CAs and it hasn't grown significantly so it's safer to leave it be methinks. (Especially as I'm reading 'Do No Harm' by Henry Marsh - an insight into the world of neurosurgeons (humorous in some places and a wake-up call in others). So, that's the harbinger of doom part written. Do I lament my misfortune and wrap myself in cotton wool? Absolutely not. Every day when I wake I smile because I've woken up on the right side of the grass; when I'm tired as I've been working on a screen all day then I put music on and do silly dances; I laugh internally when I express my opinions knowing that I don't really have many brain barriers now so that's my get out of jail card; I can't drive so I see and hear the tapestry of life when travelling on public transport and I appreciate everything around me when I'm on foot. I'm not married and I don't have children (as far as I know) - it's just me, myself and I but the three of us seem to be titanium when it comes to coping with these brain hiccups. So, in the grand scheme of things I think I'm actually quite lucky and long may the luck prosper! Sarah SAH August 2010 - clipped; SAH March 2015 - coiled
  7. 6 likes
    Just read your post,I'm so very sorry you are feeling this way right now. A lot of good advice has been given, so I will just offer you a virtual hug. You are not alone,as you can see! please be kind to yourself,you have been through so much,and there are plenty of better days ahead
  8. 6 likes
    So sorry to hear how you are feeling Jan some excellent advice from others. I do agree perhaps go back to GP or seek some counselling/therapeutic support independently. You are not unlike any of us who have hit brick walls at different times and where families fail to understand, often this comes out in anger and arguments. Remember dealing with loss is a journey where you go through many emotions often swaying between them all, SAH has seen such losses for you particularly having to give up your business and also loss of some physical abilities. Families and friends often don't pick up signals we are struggling or need their support perhaps you could try writing them a letter to help them understand if you cannot face a meeting. Mine were great at the time of event but after leaving hospital found it difficult to understand my recovery was only just beginning. After counselling I also understood I often gave them very mixed messages and wanted something they could not give, to take away my feelings of depression, sadness and anger. unconsciously I was blaming stress of taking on a caring role for mum, giving up a home I loved and pressure at work. None of these probably contributed to my SAH, I think I was also jealous about life just continuing as normal for them - that green demon does play with your mind. Just remember you have so much more to give, achieve and that things will improve slowly. Perhaps see a life coach to help you look at your strengths, and to explore opportunities you have not looked at. From your posts you have great empathy, sense of humour and good people skills all valuable assets. I am not sure if you have any close friends who can also help, of course we also here to support. I know you will survive this blip, you have survived so much worse. Sharon x
  9. 5 likes
    Just a positive post on a good day. Two years ago I had a massive SAH. I included a pic. The doctors call me a miracle. I was flown to a closer facility where they did six hours of surgery which included removing damaged brain tissue and half of my skull because of the swelling. Afterwards, I remained on life-support for a week . Because of lying so still I developed blood clots in my legs. after a few weeks in acute care I was transferred to a rehab hospital. After three weeks in the rehab hospital, the day before I was to leave for home I developed a massive pulmonary embolism him. I was back in ICU again. After another few weeks in the hospital, 53 straight days in all, I returned home to my children, then ages 12 and 14. Six months later I had a subdural bleed due to blood thinners and was back in the hospital. After which, I developed little seizures. I went through 18 months of physical, occupational and speech therapy. Then I went through six months of Vision Therapy. Although I can no longer work as an EMT, I have fallen back on my Art degree and I am doing drawings and paintings again, which is very therapeutic. I am still working on getting back to driving, but I feel very real ready and know that it will come someday. just thought I would post something positive for a change. An image of my brain scan! There is always hope, keep the faith ! Mandie
  10. 5 likes
    Hi Yoyo I am sure things will get better with time. Your partner is probably scared. Scared that any intimate activity will be too much for you. Have you tried talking to him about this aspect of your recovery? It is known that some people suffer a SAH whilst having sex. With the advent of the internet and access for all to any information you want in an instant, maybe your partner has read this fact and is worried. My husband really looked after me after my bleed and I feel the event has actually brought us closer. But it is a traumatic event for them that takes time to get over. We were lying in a hospital bed oblivious to everything while they were having to deal with the emotional fall out. I always think that at the time it must have been much worse for the family. Hang in there and yes, join that support group. Talking is the best healer and if it's only once a month come here and talk too, we're here all the time. Clare xx
  11. 5 likes
    Hi Jan, I think you have been suffering form a build up of events and you've just blown a gasket! Your organising skills are still in there somewhere, you just need a bit more time to plan and prepare than you did before, that's all. Get used to writing things down and use a methodical approach to get through the various tasks you set yourself. Tiredness doesn't help, so stop when your body tells you to and rest. You only make mistakes if you try to go on. Take a day out where your only task is to go and buy that dress and maybe stop for a coffee with whoever you choose to go with you. Enjoy the day! Start to enjoy the preparations for your wedding rather than seeing it as a job. What matters is that you and John enjoy that day. What everyone else does and says is irrelevant. It is your day, not theirs, and if you want to go dressed in a bin bag and John turns up dressed like a village yokel, chewing on a straw, then so what? Have you read the leaflet that comes with your drug? What are the side effects - are they contributing to your feelings, rather than relieving them? For instance, does the drug cause drowsiness, when you are already suffering fatigue as a result of the SAH? (therefore potentially doubling the effect of tiredness and therefore affecting your mood?) Can it cause you to be irritable? I don't know, because I am not a doctor, but if anything like that can occur then maybe you should chat with your GP about changing your prescription. If you have been prescribed anything like that, then arise Doctor Alfie!!! Good luck Jan! Macca
  12. 5 likes
    Hi Jan. Seems like your going through what many have already gone through--difference, you've put Pen to Paper--or these days Fingers to Keyboard. That's a good thing, already it'll help other's that are in the same boat, realise there not alone. Maybe a visit to your local support group might help--take John along also. They should be open to Carers, Partner's & Family Members. Personally, I'd use my GP, as a last resort. (shall not say why, but if you want to know, just pm me.) Sounds like your Family are in Denial of what you've going and been through. Maybe they can't come to terms with what's happened, they need to be sat down and told. That's easier said than done--I know that for a fact!! You've stated that you've been arguing a lot more lately, bet this is down to frustration, and depression. Think a lot of us have been there. Stay Strong, Stay Positive, never think your ranting on here--Advocacy & Empathy is plentiful, it's FREE, and no Appointments Needed. Take care
  13. 5 likes
    Jan, darling, even though you have had depression before, it could be here again. It doesn't present itself in the same way every time and the effect it has you can vary too. Please make an appointment to see your GP darling, even if its to have counselling and/or anti-deps. Your mental state will affect your physical state and vice versa. Don't let this go on because you feel you have been beaten by the SAH. Be determined yet patient hun, but please see a professional. Sending you a world of hugs xxx
  14. 5 likes
    Hello everyone. I'm Blue, 49 years old from Maryland USA. I had sah on September 1st 2016. I was at work,near the end of the day. Im a legal assistant,and was on the phone with a client when I suddenly felt the world going gray. I had sah of anterior communicating artery,and a minor ischemic stroke during coiling. I feel very fortunate to have survived,and so far,I've made a great deal of progress in recovery. This site has been a wealth of information,and inspiring to see so many survivors helping others.
  15. 5 likes
    Good morning and a warm welcome to BTG. So glad you have found the site and thank you for your comments. While we do not give medical advice, there is a wealth of information within the various forums that will be useful as you recover. Ten months since your SAH, you will be able to look back and assess how far you have come.. It would be helpful for new and old members if you tell us about what has happened to you in the Introduce Yourself Forum ..... if you feel inclined to do so. It is perfectly normal to feel anxious about having another bleed. You are not alone in feeling this way. In the ten year history of BTG, there are very few recorded cases of a second bleed. Take heart from your consultant`s recommendation to defer having another angiogram until next February. Over time, as you focus more and more on life after SAH, the thought of another bleed will become less and less. You have done well so far... you have been given a second chance at life to seize and enjoy. Keep well hydrated and give your body and brain time to heal and adjust. How have you found returning to work? How are your family adjusting as you recover? Take care and keep in touch Subs
  16. 4 likes
    Many thanks for all your replies, As Lyn wrote its good to know it's not just me. Perhaps we haven't realised our new vocation? "And here is today's weather forecast, brought to you by BTG !!!!!" Jan xx
  17. 4 likes
    Hi Aandrea, thanks for your reply. I re-read my post and yet again I made so many errors. This upsets me. Whenever I do things wrong I become very upset. I know this is due to the aftereffects of my SAH. I forgot to had information about my self. Apologies to here goes. I had my SAH at the beginning of December 2015. I was in hospital for a while being discharge in the following April 2016 just before Easter. I feel my world has been devastated. I was always such a ordered, controlled person. The job I had meant I also needed to have my wits about me. I now feel so very lost, so very alone and useless. The pressure has been enormous on my relationship with my partner. It seems as I am getting better he now can relax I guess and boy has the impact come flooding in. I'm wondering if others can tell me is it normal to have such an impact on ones relationship. Its a silly question I know, and I can only assume it does have an impact on ones relationship. I am physically getting better, but emotionally I am really finding it hard. I am anxious my relationship is in difficulty. My husband has been a tower of strength to me, but it seems as I get better he now is finding it hard to carry on. I would be grateful for any advice anyone can give. Maybe others will be able to shed some light on the difficulties this has on ones relationship. Will things improve or at least become easy to manage, will my endless feeling of sadness ever lighten. I am so thankful for finding this site. This is the first time I have been able to stand being on a computer for any length of time, but I am relieved to have joined up with btg.
  18. 4 likes
    Hi Jan, Again some wonderful responses with good advice. As others have suggested, it may be a touch of depression returning without you realising it. I say that because I went to my gp about 8 weeks ago, not feeling depressed, just that my head felt full of fog, I was crying regularly, sleeping too much and that I was not coping as well as I had been. I was also concerned that the amount of stress I seem to attract was not doing my head any good. Result she signed me off for 3 weeks with 'depression'. Since that first appointment I have been signed off for a further 7 weeks. My sicknote said 'depression, nos' - I then looked that up nos, thinking it was 'no other symptoms' - it is not that, lol, its Not Otherwise Specified - it's put on for depressive disorders that are impairing but do not fit any of the officially specified diagnoses. I have done much research on the subject and it is a known fact that depression is a common after effect of sah. Having little or no interest in things can be a symptom of depression. Depression too is a bit like an umbrella for all sorts of mental health issues, you don't necessarily need to feel down, it can be a whole host of things that cause human beings to feel the way we do - having a brain injury/sah as we all know can alter the way we were and everything can feel so much more difficult to handle. It is frustrating! For those of us who have suffered a sah, there is little wonder we experience feelings that are not ones we perhaps had prior to it happening. Anyway, I'll try and post in the GR regarding family support - essential, but not always forthcoming. I'm not sure if you've had any counselling, but it can be very useful to discuss your issues with someone outside of the family - I'm not sure if Headway may be able to make recommendations re 'neuro' counsellors, but I've often thought speaking to someone with knowledge of sah would be more helpful than an ordinary counsellor. Although I didn't want to be put on antidepressants I did agree to try Sertraline and I do feel that I am coping better now than I was just prior to starting the tablets. Having gone from too much sleep, I'm now not getting enough and keep waking in the early hours - so I've still a way to go before my 'normality' returns! Wishing you all the best Jan, Sarah
  19. 4 likes
    Hi Jan, I am so sorry to hear that you are feeling as you are. I agree with everything that has been said, John is the easy target because he's there, really the people you want to shout at are your sister's, they are the ones who are not being supportive, Louise had a great idea, getting them together and letting them know and see how this SAH has affected your lives, like Macca said there's no plaster cast for your brain, people can't see the injury so they assume ( wrongly of course ) that you are ok. Sit them down and tell them that you are not and ask them for help, try explaining how you would like them to help you, as Macca said write it all down and hand them copies and try to get them to understand what is going on. I think we all have a bit of jealousy because we have lost some of the person we were, the fact that others around us are just getting on with their lives can be frustrating at times. I know I have said this before, you have a fantastic man at your side, who I know worships the ground you walk on, I know he wouldn't leave you because YOU are his happiness, his world. As Macca said Jan, you can't change the past, you can however shape your future, We are all here for you, Sending you love Love Michelle xx
  20. 4 likes
    Thank you all for your kind words😊
  21. 4 likes
    Good news is is that she is going to a neuro ward now!! As soon as there is a bed for her 👍👍. She has responded to the neuros the last too days-when they say her name she opens her eyes. She has been in the chair for 2.5 hours today and has been out in it each day since Friday. When she is awake she nods and shakes her head when you ask her questions...she also mouths yes and no and looks like she is teittering one but I cannot lip read. She has also been breathing completely for her self for the past 2 days. They will therefore but a speech valve on her trachy in the next day or 2. She sleeps a lot!! Xxx
  22. 4 likes
    I agree with Macca and Win and Clare. I think the hospital will always err on the worst case scenario but the answe is no one knows and don't forget in a way this is their normal everyday event so to a certain extent they don't allow for the individual who is behind all the interventions and what that person is deciding and what they bring to the fight. You know your mum and will know what her character and stubbornness may be like. Yes all the interventions are amazing and ultimately save life's but that done it is then in your mums choice to battle so keep encouraging her. The brain is the control centre and it's going to conserve and channel lots of energy into healing and running essential bodily activity so other stuff Is lower down the to do list and the hydrocephalus really wipes out a lot of function for a fair while. Have hope.
  23. 4 likes
    Hi Tori sounds like mum is making progress which must be encouraging for you. It still is very early days and she has a long road to travel. I don't expect anyone knows how much she will improve only time will tell. Keep being the wonderful daughter you are now by being with her and encouraging her along the recovery road. But make sure you look after yourself too, it's easy to forget your own health at a time like this. Take care and keep us posted on her progress. Clare xx
  24. 4 likes
    Hi Tori, firstly I'm so sorry for the heartache you and your family are experiencing right now but you are doing all you can watching over your mum and helping her to heal and she will feel and know that love. Talk to her, put pictures up round her cubicle sing and just give it a bit of time to see how the effects reveal. Noone can predict the outcome as we are each different , i for instance had a grade 4 and coiling and EVD placed its a considerable ICU stint and like Win I also had a shunt placed at a later date but was fortunate not to have the infections others and your mum have had which does complicate and delay recovery. I now don't think in terms of recovery but more my evolution of adaptation that continues today five years on from my event The effects of all the drugs, the multiple operations and procedures she has had and especially the LPs she is now having will be leaving your mum completely wiped out and can be suppressing any ability to respond. I suggest keeping a diary and getting everyone who is visiting to note anything in it and also to just keep encouraging. In my quietest and stillest of times I still could always feel the love. Talk to your mum, let her know how things are getting on, play some music and give it time. Always hope to be had. Take care of you, she will want that as well.
  25. 4 likes
    Hi Tori, I had Ventriculitis after drains put in and I remember nothing. My hubby insisted that him and my Daughter take it in turns to look after me, I was never left alone xx My Sisters used to sing to me also. This is what I am told as I remember zilch . I wish your Mum all the best and hope she goes from strength to strength, you have a long haul both you and Mum xxxx After a year I had a shunt put in as I had Hydrocephalus, I was told I woke up and sang to nurse who promised me she'd put my cross on !! I can only tell you what happened to me, but singing old songs helped me xxx and being spoken to, although I couldn't reply. Keep Mum happy and sing she might not look like she can hear but I was told I corrected my Sisters on wrong words xx Good luck Tori's Mum xxxxx
  26. 4 likes
    Hello Tori. A warm welcome to BTG. Great that you have found the site so soon after your mum`s SAH. You are in good company with members who are eager to share their experiences with you, and support you when needed with answers to your questions. There are also over 10 years of historical cases within the various forums. As you find your way about the site these will prove most helpful. We only offer support, and do not give any medical advice. You and all your family have been on a traumatic journey since your mum experienced her SAH five weeks ago. She has obviously suffered so much as the medics tried to stabilise and treat the bleed. The anxieties during that time you will never forget. You are no doubt physically and mentally exhausted. It is very early days in her recovery. It will be several months before you will get some indication of what longer term damage has been done because of the bleed. Every SAH recovery is different. You have done so well by being there for your mum. Keep talking to her even though you may feel she doesn`t hear you. Keep encouraging her. Also please make sure that you and your family take time to look after yourselves. Eat and rest well. Talk about your own worries. Mum`s brain will take many months to heel and during that time , especially at the outset, you may find that her personality has changed and her reactions are out of character. This may change with time. Memory and fatigue issues will also be very evident. She will be in great hands with the neuro staff. Please keep in touch and don`t hesitate to share your concerns with us. Subs
  27. 4 likes
    Hi Kris Welcome to the site. Glad you have come out the other side, good luck on the angio on Thursday. There are many reasons for bleeds and non aneurysms bleeds which your seem to be related to. The drs will set you straight when you get a follow up appointment There are many myths and suggestions relating to sah. There is one related to the loo as well i.e. straining too much. There is no rhyme or reason one has a sah. It is though and has been proven its normally genetics I would start by taking baby steps first drink plenty of water and above all listen to your body. Don't over stretch doing things, sleep when your body wants to. Sex is not the main reason for sah its when the anni ruptures on its own cause normally because the walls have weakened and they let go. Evidence shows more happen when things seem to be going ok but there is a possibility during sex, but that will happen immediately not down the line I would suggest that you have a second chance of a new life one step at a time and one day at a time there will be the odd step backwards but many steps forwards good luck and hope to hear from you soon with updates
  28. 3 likes
    Hello Yoyo, many thanks for continuing to share your anxieties. It is clear from your comments that you are desperate for your relationship to work following your SAH. Our members are urging you to talk it over with your husband and maybe you are even afraid and already presupposing that the outcome of such a discussion may not be what you hope for. The content of your latest post is ideal for moving forward with your husband. It tells him exactly what your anxieties are. Is he aware of this site? There is so much within BTG that would help him too. As has already been said, SAH does have a major effect on relationships. It poses different obstacles depending on the severity of the SAH and it`s after effects; and also depending on the strength of the relationship that existed before SAH. For example, seeing a partner become disabled and no longer able to function as they used to, is so hard. It may take months or even longer before you can consider returning to work, and even then a new set of issues arise. Often full time work is no longer a reality. In addition, SAH may have changed your personality (often this can be temporary and certainly can improve with time). It is not easy to cope with a loved one who seems no longer able to control emotions such as irritability) A bleed can often damage the area of the brain that allows you to take that few extra seconds to evaluate a situation before you comment or react. Now you may say it as you see it without thinking that your actions or words may be hurtful. Your husband may well be confused and uncertain about what the future holds for your relationship Also, from what you say, it appears that you want the relationship to be more physical. Often, due to post SAH issues such as fatigue and low libido and just physical weakness, it is the partner who feels left out of a physical relationship. You have everything to gain by showing your husband that you care about what happens to you both ... you cannot give any guarantees about the extent of your recovery, but you want to do your best to build the future together. I do hope that you can both take that step to share your feelings and find a way to help each other deal with what SAH has done to your relationship. Subs
  29. 3 likes
    Do what you need to do, not necessarily what you want to do. There's a difference. Listen to your brain. Pushing too hard, too soon could set you back a bit, so instil a bit of discipline into what you do, but when your brain tells you to - stop and rest - and rest well. It's no good going one step forward and two back. Discipline and control is what you want. Before you do strenuous exercise programmes, you should only do so with your doctor's approval. Good luck and let us know how you get on. Macca
  30. 3 likes
    Jan, Weird isn't it how we know !!! I used to feel very heavy headed in early days but like everything we get used to living with it, she says hearing thunder in background arghhh xx Be well and thanks for the forecast ha xx Love Win xxxx
  31. 3 likes
    Hey Sis There are a few on here that suffer from this, me included. The fluid surrounding the brain is to blame I believe. It "senses" the build up of pressure (almost like being on a plane or diving into a deep pool) and then makes you feel like you're walking around in fog and can give headaches too. When its overcast and we're due some rain my head bangs like a set of drums - its a nightmare. It's overcast here now and I can feel the beginnings of a headache starting - luckily we had rain a few minutes ago and this releases the pressure a bit for me - not sure why, maybe cos it "clears the air".
  32. 3 likes
    Hi Yoyo, I send prayers for you and hope you can find peace soon. It's a struggle to heal and it takes time and patience, by you and your support group. I hope you continue to improve. You will have good days and bad days, but the trend should be up over time. Please hang in there. You are a survivor! Chris
  33. 3 likes
    Thanks so much for the replies . I have a blood test due in a week and will make sure I get the one with the lot. Good luck with your healing each and every one of you !
  34. 3 likes
    I used to get a lot of unexplainable cramps and sensations and I resorted to just trying to adjust my diet to make sure I was bringing in a lot of extra minerals and vitamin rich food. I found not letting myself get hungry really helped and I actually had some food supplements for a while. my doctor did blood tests as well which found I was a bit low in certain minerals so I took supplements but you should always consult a doctor before doing that. i speculate that the brain uses so many of the nutrients it gets faster when it heals plus all it's levels are out of whack so for me that's what made sense and over time the termors disappeared.
  35. 3 likes
    Where do I start?!!! Thank you all so much for taking the time and consideration to reply to my post.Because I know that you all understand, your replies have enabled me to 'look from the outside in' and that is a huge help. I think my biggest mistake since leaving hospital has been pretending that everything is ok and that I'm ok. Too much pride? Yes I think so. John and I have never been ones to ask for help, always happy to give it but perhaps too proud to ask for it., I think we asked on a couple of occasions in the early days , it wasn't forthcoming so we didn't bother asking again.. I agree that we should meet up with my sisters for a chat, as you've mentioned above if We don't tell them how do they know? The preparations are coming along re wedding This has caused added pressure My organising skills left me 2 years ago,I feel bad that I've not shown much interest or enthusiasm, I've mostly left it to John ( like he doesn't have enough to do! poor bloke) 2 months to go and I haven't bought a dress yet! I asked him if he'd still marry me if I turned up in my jeans and Tee shirt, Bless him, he said Yes(I think he'd prefer to see me in a dress though!!!) My anger and frustrations are my enemies right now, and throw in a touch of the green eyed monster and lots of tiredness, not the best combination! I am on Anti deps~sertraline., I've insisted that the dose be reduced in readiness for coming off them completely, I know they suit some people but they're not for me. As for an appointment with my GP, please excuse the next sentence. . . . I would be better off having a chat with Alfie (my dog) he has more knowledge and understanding of Sah.,sorry if that came across as very rude. Just reading and re reading all of your replies is helping me more than you know.You are all so generous with your time and advice. Thank you again Love Janxx
  36. 3 likes
    Hi there welcome if your anxious see your GP, I had tremors and they did ease only when I'm stressed now are they obvious.
  37. 3 likes
    I've just been reading that Prince Harry is to launch Headways new brain injury Identity card, it will help the police identify brain injury survivors and ensure they are given appropriate support when they come into contact with the criminal justice system.
  38. 3 likes
    Welcome Blue l am also in the US (Ga). Best wishes for you chris
  39. 3 likes
    Just reading what has been said here has really helped ease my fears.thank you all so very much for that. I thought I was going mad, honestly. I deal with it by making jokes most of the time, I was even doing that in the hospital. I remember a nurse coming in and asking why was I not sleeping? I told her this was the worst B&B I'd ever stayed in,she laughed but really I was too scared to sleep!
  40. 3 likes
    My Headway OT lent me a book that I thought it was worth sharing with folks. The aptly titled: " Head injury: a practical guide" written by Trevor Powell (Speechmark Editions/Headway) I'm only about half way through it, and though not specifically about SAH or stroke (but traumatic BI) it is an interesting read about brain injuries especially for those new to this all. Easy to read, and definitely for the non specialist. Would be helpful for both those caring for those with a brain injury or the person themselves. And in there, there was the following that I thought I would share. The last point I particularly found relevant to me: ENCOURAGING THOUGHTS 1. A person who is severely impaired never knows their inner source of strength until they are treated like a real person 2. Nothing equals the power of love. It's the only source of magic there is. 3. People who had have a brain injury do not want hand-outs, but hand ups. 4.Think positively about the gains made since your stroke, rather than comparing with how things used to be before it 5. What do you dream about? You can do anything, but you may have to do it differently. Sorry some of that is a little a soppy but some of the points I find for me are helpful at times to keep in mind, Cheers for now greg.
  41. 3 likes
    Hi all my Mum is now nodding and opening her eyes to response. She mouths "yes" and "no" and mouths things that I don't know what she is saying. She is also reacting more to pain. She isn't doing all the mentioned improvements all the time, bit she is more often each day. The physios have hoisted her into a chair a couple of times and we got to take her outside. When they did some exercises with her, she held her own head up-it was amazing to see!! She has been on the trachy mask for 16 hours yesterday so could be ventilator free this week!! She will be able to talk when she is trachy free hopefully. I just hope she improves from here...the drs are still monitoring her with EEGs but they are still saying minimal brain activity is showing when she is improving so much?! Maybe I just take the EEG with a pinch of salt?
  42. 3 likes
    Hi Blue, Welcome to BTG. My SAH was the 'left anterior communicating artery' and I was coiled, some 6.5 years ago at the age of 54. I am 61 now. I'm glad you are getting so much out of the site. There is plenty of information in all the different subjects on here and you will see that although there are many similarities, there are also many differences. The brain is complex and so many differences in experiences means there is something on the site for practically everyone. However, if you have any medical problems you are best going back to the professionals who treated you, as we are not doctors and cannot give medical advice. What we can do is tell you our own experiences. Have a good look around the site and feel free to post when you wish. If you require help then shout up and someone will assist. Once again, welcome to the group. Macca
  43. 3 likes
    Hi all thank you again for your kind words. We have made a bit of progress over the last couple of days. She has only been doing trachy mask trials for the past 2 days and ended up doing 7 hours on it today. She was also showing sleep/wake cycles...when you caught her in her awake state she would open her eyes and mouth words-she even cried today. But then she drifts off into unconciousness again... she also nods and says "yes". The physios have had her sat at the end of the bed-fully supported obviously but it's a start. The neuros say she still has some swelling of the brain so as that goes down her consciousness should improve. I will be back to see her in the morning. Xxx
  44. 3 likes
    The information regarding statins comes from the patient information leaflet that states; 'Atorvastatin may not be suitable for you if you have had a previous stroke with bleeding into the brain.' Note I have highlighted the word may. I discussed this with my gp who thought considering that advice he would change me to Simvastatin. Everyone differs and has different side effects to drugs. The most important thing is to take advice from the professionals. My friend who has had a stroke is on Atorvastatin and so are many others.
  45. 3 likes
    Remember - Google is NOT your friend My SAH was nearly 11 years ago and I've been on this site since then (the 9th member to join!) I don't know where I'd be without the support and openness of people on here. Its great to see how people progress in their recovery too and to know that you might have played a part in alleviating fears and encouraging people to stay strong is all the reward we could ask for. I hope that we help you through this tough time too xx
  46. 3 likes
    Soppy or not Greg each point is very valid. Every day I get my husband to say (practice speech) something, usually inspirational and your number two is the quote I will give him tomorrow but your number five is the one I will inspire him with. Thank you for posting them.
  47. 3 likes
    Hi Kris Your neurologist maybe right in respect of straining, you will have many a symptom which worries you as you are still in the very very early days of recovery. The headaches and other symptoms are normal as the brain has got some blood surrounding it and it will take up to three months for that blood to be reabsorbed back into the body. Try not to allow the anxiety to take over, the bleed happened and you survived. You are talking to people who have gone through exactly the same and its very unlikely to happen again. Many who have suffered a NSAH are now leading normal lives with very little after effects and some with very minor effects. Enjoy your new life Recovery can be years not weeks, but as you progress in your recovery the less you take notice of it. I would recommend that you drive when you feel better. You don't say if you are in the UK or not but if you are be wary because bleeds of the brain is a condition which is recorded to the DVLA by the surgeon by law, hence you might be breaking the law. We wouldn't like that, take one step at a time, please drink plenty of water and try to relax a lot more. Best wishes
  48. 3 likes
    Riorita, I would like to repay your compliment, I think you are a wonderful women. It's one thing to be the person going through trauma, as you know exactly how you feel and what you want. But to be the person standing by watching it happen, especially to a loved one, is extremely difficult. But I think you are doing so wonderfully well. Please keep updating us xx
  49. 3 likes
    I can't thank you all enough for your wonderful support, it has improved my recovery immensely. I have finally been able to lift myself out of the bleak area and start living a little again, I got the train yesterday which was the first time since I collapsed (I can't believe I found a train journey so exciting!) My GCSEs have also finished and I am no looking towards my prom which is again something that at one point was not going to happen. I have also started to write all my thoughts and feelings down, everything I can possibly think of and I am now trying to compress it into a speech, as I would like to provide knowledge on SAH but also the trauma of any major incident. I'm 16 and I have a lot more to do with my life, but I think I now understand a lot more about the world around me. People that can't cope with others pain or stress don't mean as much to me anymore for example. Therfore this long summer that I luckily have, I am going to try and become an inspirational speaker. I wanted to write this as if anyone feels the way I did a few weeks ago, it doesn't last forever, my frustration in a way has become my passion and I can't wait to share it with others. Thank you again for your support, each individual message helps me improve greatly and brings comfort to my family also, as this has effected them as well as me.
  50. 3 likes
    Great post Greg and useful information - thanks for posting! Macca