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Showing content with the highest reputation since 16/12/18 in all areas

  1. 11 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. 10 points
    I hope that this gives you a little comfort and today is my 14th year after the 2nd SAH ... It was as hot as it is, today... I'm still kicking! Lots of love to you all....xx
  3. 9 points
    I am so soo glad to share with all of you, I just finished a half marathon. I am 7 months post NASAH. Feeling very emotional right now. Thank you all for the extensive support. You guys are the first ones I am sharing this with. Thanks again.
  4. 9 points
    Well here I am seven years on and still feeling really positive. I have my routine check at John Radcliffe on 5th May now that fills me with dread as I hate going back to where my life was hanging in the balance but my sons tell me that I should see it as a positive as that’s where they saved my life. I'm doing really well, still have a few little niggles but nothing too bad, I’ve travelled such a long way and will continue to do so. To any new unfortunate people all I can say is hang on in there, your life will improve, even if you never get back to who you once was you will learn to accept the new person and be very grateful to your new life because I know I am! Good luck to everyone and may we all continue to move on in a positive manner. lots of love and luck to each and every one of you xxx
  5. 8 points
    Some great advice already and I hope that one thing you can take to heart is you are not walking alone in this and it is ok to feel as you do as it was more than our brains that haemorrhaged , its effect is across our lives from the moment it happens. When I look back the first 12 months were all about, surviving , dealing with pain, reeling from one step forwards then back. Then the second 12 months were about taking stock of what was lost to me and with that a realisation that life had utterly changed and not just for me. Talking that through is key. I echo Louise that Headway are superb, were for me anyway as assigned me a case worked who helped me regain things I had lost confidence to even try. Go back to GP and demand they help you , advocate for what you need and if you feel you can’t can someone help put that are across. Speak to your treating hospital and ask what help they can give. There is support out but sadly you have to fight for it. Try to break things down smaller and set different standards of goals. You cannot roll back to where you where before your bleed happened but you can move from from now, in this moment and see what is possible for you today and start to celebrate that as much as you can. Write those things you achieve down at the end the end of the day, what has been good but also write down what made you sad, cross, and then let it all go for that day and start each day anew. One thing for sure is that life post SAH is never the same two days in a row. You are still you with a life to be lived I promise, but you are compromised in what your brain will allow you to do right now. If you are low energy then it is a sign your brain is requiring that energy and is healing massively. Respect and nourish that . Eat well, move as you are able and set yourself goals and rest whenever you need to without guilt and see that combination as your path to future continued healing, i wish you well. I am 7.5 yrs out. I know this version of me better now but early on, well let’s just say I did not like the upgrade much and was resentful of what I had lost. Today I celebrate each day, what I am able to do, I have regained much but move at my speed, my pace for this day and always stop to smell the roses. Go steady and be kind to yourself . Daff
  6. 8 points
    Hello Katow My husband has NASAH on 20th May this year, he's a healthy, fit 57yo. I did a lot of research, and read medical journal articles in the weeks after his haemorrhage. It is confounding that something so life threatening can occur to a health focussed and fit person. The truth is, it can happen to anyone, of any age, and for reasons that cannot be explained (I witnessed people of all ages in the Neurology ICU with my husband, he was too sick to observe what happened for those people, I watched as people fought for their lives, and others lost their lives, all happening around him). Having something so life threatening occur is in itself enough to trigger anxiety and panic disorder in the best of us, if you had any pre-existing anxiety, it's not surprising that you could now find yourself struggling, especially so soon after the SAH. What I found is that the medical help kept my husband alive and aided his recovery, but once the medical crisis had passed their job was done, and no further support was forthcoming. I agree with others that counselling and mental health support are also a big part of the recovery. We know that life has changed, we are incredibly glad to have my husband still with us and because he was so healthy when the NASAH happened, his prognosis for a 'full recovery' is very good. We don't know if he will return to his job as a locomotive driver, but we know there are more important things in life. As I said to him, we can't go back , we can only go forward. Having a health crisis like NASAH is confusing and very distressing, but it clarifies what is important in life, and what the priorities are. I wish you all the best for your recovery. The stories and support I have received on this site has been incredible and a huge part of me coping and helping my husband cope. I hope you will continue to find comfort and support here, you are among friends and fellow survivors. Veronica
  7. 7 points
    Hi everyone, Today marks my 4 year NASAH anniversary! March 28, 2015, just two days after my 40th birthday, I experienced 'the headache'. I knew something was wrong within minutes and had my first ambulance ride to our local hospital. They thought I had an aneurysm so they rushed me to the trauma hospital the next city over. A few hours later a neurologist told me I had blood on the brain. He never used the term SAH, NASAH or stroke, just blood on the brain. When I was discharged days later, I asked, what happened to me? What is this called so I know my medical history? I had never heard of SAH until it happened to me. I was off work for 2 months and it was absolutely the worst months of my life. I couldn't work, drive, read, watch TV, think straight, cough or sneeze. My body was just still. It was afraid of what a jolt might do. With family support, meditation and just taking things day by day, things did get better. Four years later, I'm doing well. I celebrated my 44th birthday a couple of days ago, no ambulance ride or ICU This is progress. I'm still scared it's going to happen again, I'm afraid the next time it may be worse. But I don't want to live in fear. I want to live each day the best I can. Whatever happens to me, will happen to me whether I worry about it or not, so I try not to overthink. My SAH is a mystery to this day. No cause determined. I suppose not everything in life has an explanation. Thank you to BTG. I do check in and read the articles, your stories and it's comforting to know we are not alone. Cheers from Burlington, Ontario - Canada! Alison
  8. 7 points
    Hey there Firstly, yes you did survive and yes, it there is a point in it. I can tell from your post that you were the oil that helped your household run smoothly. I know how that feels, it was the same for me. I had to instruct/shout/scream at my hubby to do the stuff I should have been doing - my daughter was only 9 at the time and even then, she did what she could. The best thing I did, besides finding this website, was talk to my GP about seeing a counsellor/therapist. From the feelings you describe it sounds very much like PTSD and you do NEED to see someone to talk this over with. You're feeling guilty that you're putting your family through this, angry that this has happened to you and frustrated that you can do nothing about it. As for the weight - with you again - I put on a stone in a month as I couldn't continue my exercise regime - which was step aerobics three times a week, jogging and swimming three times a week. Acceptance at this time will be the hardest hurdle but is also your best friend. Accepting the "new" me was the only way I could move forward. Accepting that I needed to talk to someone impartial was the first step on a long, emotional journey. But remember, its a long road to recovery, but you're allowed to make as man pit stops along the way as you like. Please see your GP and ask for therapy or a counsellor - it will be a massive help to start your journey. You've stalled at the starting line but in all honesty, you really have done the hardest part of all - you HAVE survived. This life may be different and it's up to you accept and adapt to it and also ensure those around you are aware of the journey you have ahead and also how they can help you along the way. Good luck my friend xx
  9. 6 points
    Good morning all, hard to believe, but it's been 11 years to the day of my ruptured aneurysm. BTG has been such a blessing during this time. So, I get to go out and celebrate by having a troublesome tooth pulled. I debated the appointment date but there were no other options for the tooth and I need to feel better! Have a good day all! Love, Colleen
  10. 6 points
    Louise when I first come on here I was "who typed first? ahh GG ahh but who was the one I forgot all of you" Happy 20 years and many more. This is a life saver this site as I always say. Saw so many joking and hold on but they are laughing and happy. I'll have some more of this ...Been a real pleasure to see you all doing well, and me I couldn't walk at all but I remember doing my 100 yards walk or 5 steps as it was in early days now 800 to a thousand yards ... You all said well done and Keith in those days had his chefs cartoon pic. Well done Louise hears to next 20 years xxxx and many more you have given me hope as always xxxx All of you are my secret pals who I tell my Family about they go yeah yeah Win lol xxxx Love you All Especially Louise today xxxx Go get em xxxx You have done really well xxxx Loved the last 2 lines especially Louise xxxx Thanks and all you Mods and Karen (goes without saying ) XXXX Song time ha ha j/k
  11. 6 points
    I feel for you Greasly 23 My husband survived an SAH in May 2019, and although his recovery has been amazing, I know that he has to work hard each day to be here and to get used to his new self. All I can say is that Skippy and Macca and all of the other amazing and loving people on Behind The Gray have helped us both through, and continue to help us through. My husband and I are both just so incredibly grateful to have more time together, each day we celebrate being here together. But life gets in the way sometimes, meals need cooking, dishes need doing, there's mundane ordinary stuff. And it can get on top of us, and feel like a burden. I guess one of the ways I look at it is, "what can I control? What do I have a choice in?" Because you don't have a choice about recovering from a SAH, and how slow the brain is to heal and rewire itself, and the other side effects from pain and medication. But there may be things that you can control, that will help you to feel a bit better? I'm really pleased you can reach out for help and support on here, and please understand that even though you may not feel like you're very good company at the moment, your family and friends will still want to be with you. I'm sure they're incredibly grateful to still have you with them. xx Veronica
  12. 6 points
    Iola, it’s good to hear from you. I’m sorry work is troubling you. I retired the year before my episode so got a bye on the return to work experience. I think if there is anything good that comes from experiencing what we have it’s discovering what and who is actually important. You have come far and done very well. You should be proud of yourself.
  13. 6 points
    Hello all, I am over the six year hump and sliding to 10 years. My five year was such a feeling of "finally" that I decided I'd turn over a new leaf with a new attitude and that lasted for five minutes or maybe five days, I can't remember!! Last winter was rainy, cold, and work was so stressful and the headaches were terrible. It's a wierd headache. Pain? Yes. But, something more than that. A feeling like my head is in a fishbowl with a vice wrapped around it. I had a few dizzy spells and I don't freak out like I used to but I do feel my body getting very hot. Maybe a hot flash as I am 53 now. Good grief. I think it's too little sleep and too much stress and I do know when my body says enough, although, I choose to ignore it sometimes. I am trying to make changes and I am going part-time soon. Really! After a life changing experience we all want to get back to normal and that just does not happen. I'm tired. Tired of headaches, tired of not getting on rides at parks, tired of always feeling weird, tired of the corporate bs, tired of trying to be as fast as I used to be, and tired of trying so hard. I love my team but do not care for the power players and I wonder why I even try? I've always been a helper but I do not seem to be helping myself. I think I'm at a crossroads and it is so hard to let go of what you worked so hard to get back to only to find you don't like it there anymore. I'm rambling. I dunno, just thinking out loud this evening. Thanks for listening. "i"
  14. 6 points
    I’m with Weedra , grumpiness is a great sign for me. In fact my kids are best at saying to me ‘mum are you ok, you’re really grumpy’ , if I hear that I know my fatigue is notched up at Amber levels and I need to rest. If I don’t I’ll push through a red and that’s not pretty, I then have some pretty awful reactions where it’s like the brain throws a temper tantrum with me....I try not to run a red light anymore, but did early on and was left reeling. first I think the slower pace you have to adopt, are forced into after our events is not laziness. It’s the best pace you can manage at the time but because we were all travelling at 70 mph through life it’s like suddenly finding yourself sat in roadworks and contra-lane. You have no choice but have to slow. You have to stop when required. It’s all part of going forward. Be kind to yourself right now, the more time you take the better it will be down the road. Everyday fatigue for me is my normal. I can get a good nights sleep but still wake up tired so know every action each day is a bit of a horse trading game with my energy bank. What can I do, what do I need to drop if I do that, when can I get rest time, the internal conversation is just my natural state now. And I do loads now compared to post SAH. But I do everything more consciously and with consideration, I don’t rush and I don’t multi task...I am a skilled uni tasker who has little pauses afterwards. The best analogy is that of a battery pack. We damaged our charger, it probably can never charge back to its out of the box state, so you need to spend it wisely and know the capacity . the level of energy we can hold is unique to us as individuals. Some people will get back to being able to do everything in time but probably differently. Others won’t , time will tell you that but tiredness in the first twelve months is the brain telling you it needs some pause. You can’t see the bruising, the hurt , the damage...but it’s there. Let it heal .
  15. 5 points
    Hi Jenni, Welcome to BTG! It is early days for you, as you rightly point out. Things do get better over time and you learn to change and/or adapt to enable you to cope. You are right to contact your doctors but there are things you can do to lessen the effects of bright lights. You can wear sunglasses, albeit with different strengths, to suit your needs. On computers you can buy anti- glare screens or you can get glasses specially for use with computers. I use them myself. See your optician or get referred by your doctor. You are thankful to still be here to be able to give your children those embraces that you mention. Every parent should do that, regardless of being ill or not. You have a heightened sense of appreciation of the ability to be able to do it because of what happened to you. I bet they are thankful too, even if they don't fully understand it yet. But in time they will, just like you'll continue to get better in that same time. Slowly comes the dawn of understanding, slowly comes the dawn of better health and the bond between you will be better than any glue you could ever buy. Enjoy Frozen - you'll have the weather to go with it by the looks of things - but enjoy the company more. Build the memories and take a few photos and one day you'll sit down with your girls and say "Do you remember when.......?" That's what life is all about and what you are lucky enough now to be able to see. I read your post with an appreciation that you have a renewed happiness in the realisation you now know what life really means. In the moments you wrote that, you truly grew up into a wonderful adult - but more - a Mum who knows what her children mean to her and what they will come to realise, that you mean to them. I wish you all the very best and enjoy the magic of the film and Christmas - kids grow up too quickly and before you know it, they will be adults too! Best wishes, Macca
  16. 5 points
    Bless you Louise and I really can't believe that it's been 20 years! I also know that it's a difficult time of year for you. ❤️ x Like Sami, I also feel very proud of you and all that you've achieved. It's hard to remember the early days of the website as I was literally just winging it and stumbling in the dark, needing support myself and then, you came along Louise and became part of my BTG family! .... somebody that was 6 years ahead of me .... just having your presence on the website and realising that what I was experiencing, was "normal" in the terms of SAH recovery, was a huge help to me in my recovery, so thank you! All that we've learnt over the years from each other with our own experiences....the good, the bad, we've been able to share it and pass it on to other survivors and the circle of support continues, knowing that you're not alone. It's good to talk! Louise, it's a complete pleasure to know you and to still share your journey. Sending love and hugs to you!xxx
  17. 5 points
    Louise, also CONGRATULATIONS twenty years on. Many thanks for taking the time to share your thoughts in greater detail. You have done so well in dealing with your SAH recovery and the highs and lows of your personal life. Losing close family can be so tough and as you say ...remembering about your mum and dad and your SAH within a few days of each other is so emotional. So glad you managed to find BTG and get the extra encouragement you deserved. As Sami says, you have always been willing to give helpful advice to other members and provide words of encouragement along the way. I remember in an earlier anniversary of yours I looked back over your posts on BTG and I am sure you will agree that what you have composed today shows how much you have improved. You have not given up when the going was tough. Being a fellow Scot ... Robert the Bruce and spider comes to mind ! 😊 It was so great to follow your plans and reservations about travelling abroad to attend the wedding last year .... another big milestone in your confidence building. I also take the opportunity to thank you for the interest you have show in Mrs Sub`s and myself over the years... we have both valued it. Take care and hope that Ronnie`s shifts are geared to a `little` celebration. Subs
  18. 5 points
    Limitations and changes are in your life whatever your state of health. In the case of SAH though, they become more acute and are imposed suddenly when you aren't expecting any. Change happens to us all but usually slowly through the ageing process and that makes us more able and willing to deal with them as an accepted practice. However, when we have a SAH that change happens abruptly when we are less willing to accept it and we somehow feel cheated of our 'normality,' whatever that is or may mean. Change happens to all of us. It's how you handle it that counts. It can be a mental change or a physical change and in some cases, both. If you have an accident you accept it has happened and take steps to rectify it ie, put antiseptic and a plaster on your leg, or go to hospital or the dentist for treatment. You may end up with a small scar but that doesn't stop you doing what you always did after a period of healing. If the injury is more severe, you may end up with a limp and you adapt to the new you. You can't run like you used to so you walk more or you find a means of transport that suits your needs. With SAH, your brain has been injured and it needs time to recover just like any other part of your body. Usually it will take more time and you go on a voyage of discovery about what you can and can't do. The thing is, you will find other things to do, perhaps not what you did before, or maybe not to the same degree, or you will do what you did but in an adapted fashion. The difficult bit is to find, within yourself, acceptance that this has happened to you, that you can't turn back the clock, and that with a few changes to attitude, adaptations to the physicalities of what you did, and do now, you can overcome and go on to lead a fantastic life. Obviously, it can be more difficult in some cases than others, but with the help of those around you, that indomitable human spirit can overcome and/or adapt to many things. I myself have short term memory problems and I was told to avoid contact sports or things that would greatly increase my blood pressure, like stress for instance. I am nine years out and still lead a worthwhile life, grateful for the second chance I got - repayment to the wonderful surgeon and doctors, nurses and other staff who did not write me off, and helped me get back on my feet. I look on it as a duty almost, to lead a fulfilled life. I'm having a great time, see my grandchildren grow up. Wow, it takes my breath away when i think about it. It's not all great, and it can be difficult at times, but I'm still here. It's been a long road, but the journey was well worth the end results. I hope you find that peace too. Best wishes Good luck. Macca
  19. 5 points
    Hey guys! Thank you so much for your advice and experiences! I had a wonderful trip. Plane didn't bother me at all. I was tired some of the days while I was there but that didn't stop me. I've had trouble sleeping since I had my SAH so I have Lunesta, which knocks me right out. Glad I had those on the trip. I only had to use pain medicine once while I was there - but oddly - since I've been home I have had horrible headaches every day. It's really weird, actually, since I've been feeling so well. Going to call the neuro doc next week if I keep having them. Again, I appreciate everyone for replying and letting me know what has been going on with you. ❤️
  20. 5 points
    Thank you all 😊 Yes, I had tears in my eyes and it was a very emotional moment, the finish line. The first neurologist who managed me 7 months ago said I could never run in my life again, at the most, may be a 5 K, definitely not more than that. Thanks again for all the kind words.
  21. 5 points
    Hi there warm welcome to the site, glad that you found us. It's all quite normal and yep fatigue is being shattered and some, it will ease though just remember not to over do it, rest lots and keep well hydrated, and when the body says rest don't fight it listen to it... confidence will come back. take care, hope to hear more from you...
  22. 5 points
    Hi Sallios A very warm welcome to BTG, glad you found us. Well done you, on no more frame and trying to go a little bit further every day with your husband Its normal to feel very tired and wiped out, you have had a major trauma to your brain and 5 weeks is very early in your recovery. Listen to your body and rest up loads. You are doing so well It took me quite a while to get my confidence back and go out on my own. This is all part of your recovery process and you will get there. If the head, neck and earache is worrying you, always go and get checked out by your GP, even just for peace of mind. Look forward to hearing more from you. Take care Tina xx
  23. 5 points
    Karen, also a huge well done 14 years on. As a post SAH Carer of over 8 years, the support from the Mods and members of BTG were undoubtedly a major help in Mrs Subs and myself dealing positively with Mrs Sub`s recovery. We had been struggling until Winnie directed me to BTG 4 1/2 years ago. We will always be in BTG`s debt … thank you so much. With over 3,200 members and so much of value within these forums … thank you for having the vision and dedication, given your own struggles with recovery. Subs
  24. 5 points
    I just want to thank everyone for responding to my message. For whatever reason, I never received notification of your thoughtful responses, and I am just reading them now. I even tried logging in and finding responses, but never saw them. Just recently (as I am still thinking about my case) I found them on accident while trying to research pregnancy and SAH to see if there had been any new information. I feel terrible for just now responding. To provide an update since last year: I had the additional angiogram at U of M, which came back negative for aneurysm, dural fistula, and any spinal malformations as well. They, too were stumped. He basically said that I either had an atypical case of RCVS, or an atypical perimesencephalic hemorrhage. I felt like he did an excellent job and felt that I could trust him, but because this occurred after pregnancy, I wanted to speak to a women’s vascular neurologist. So I recently went to Northwestern’s Women’s hospital in Chicago. She also said my bleed was too large to be considered a normal perimesencephalic, but that in her professional opinion it was in no way RCVS, because I lacked narrowing on my initial CT angiogram, and the location did not fit. She said that she could not give me an exact diagnosis, but that she believed I had a very large perimesencephalic hemorrhage that could have been larger due to more blood in the body from pregnancy. Her opinion that recurrence was quite low, and that if she had to put a number on it, it would be less than 5%. 5% still feels high to me. So. I’ve learned a LOT (most drs have joked that I know more about RVCS than most neurologists lol) , but I’m sort of back at square one of having to make a very difficult decision, which I know most people think I’m insane for even considering. I know I should just be thankful for being alive (I am) but this still weighs on me daily. Thank you for your responses, I truly appreciate people taking the time to read my ridiculously long posts, and commenting!
  25. 5 points
    Hi Crazy, huge congratulations on the marathon, I feel your pride! Your post sounds very like my journey. I too am a runner, was actually running when I had my bleed. When I went back to it 4 months after my NASAH people kept asking " why are you running?" " doesn't it worry you that it will happen again?" My longest run is nowhere as far as yours, my challenge was the Great South which is 10 miles. I completed it 18 months after my bleed and wept when I crossed the finish line. Running has been my saviour. When I am stressed I run, it's the one thing I don't need to tax my brain doing - just my feet and legs! I run with a group and we all run and chat - so we aren't going to win any races. We all say running is for our mental health and the fact it helps with physical health at the same time is an added bonus. I too struggle sometimes, even 4 years down the line I am still accepting what has happened to me and how it has changed my life. But as you say the little victories are the sweetest and bring the most happiness. I hope yours continue and that you manage many more marathons. Clare xx
  26. 5 points
    Hi Everyone, Been following the site for some time and very grateful to read the stories of fellow survivors. Time to share. My SAH (anterior communicating artery) was just over four years ago and was coiled within hours (not even a stitch in my groin - how does that work?). Phase-returned to work in a busy office after six months and reached full-time after eight. Despite adjustments to my working day and an employer who tried to understand my challenges, I struggled to keep pace, concentration and accuracy and my confidence was shot to pieces. I was lucky enough to get early retirement on ill-health grounds close to my fourth SAH anniversary. Now in retirement I'm volunteering two part-days a week and the new post-"bang" me is very comfortable with revised daily routines. Ongoing challenges include a constant (fortunately) low-level headache. Luckily I can just live with it as paracetamol doesn't touch it! Feels like my brain is being pulled downwards and is definitely worse if I haven't taken on enough liquid. I do get fatigued and often take a nap in the afternoon or early evening. Short term memory is not strong and I often start chores, get distracted and forget what I was doing. I can still recall details from all the FA Cup Finals in the '70s though, so that's ok! Pre-"bang" attributes (unfortunate tendencies toward grumpiness, unwarranted anxiousness and worry, struggling to remember names and numbers) are all enhanced, though I guess this happens with age, anyway. Still struggle to focus in busy places and completely unable to do more than one thing at a time (the pause button is in constant use if the family are seeking my attention during The Big Bang!). Great site, hope other new members are encouraged to share their experiences.
  27. 5 points
    Hi Clive, Mine was over eight years ago and was my left anterior communicating artery. I was coiled too. I recognise much of what you say and I too can remember old footy results but can't remember today's or last weeks! welcome to the club! Frustrating at times, I know. However, you survived and things get better. Mine happened at 54 and I retired four years later and haven't so much as looked back once. Enjoy your retirement. Just remember when you are next out in the sunshine having lunch, your ex colleagues are inside, toiling away, stressed and complaining about being overworked and underpaid! There are some things and people I miss, but I definitely don't miss some management colleagues and the stress I was under, often unnecessarily, because of others incompetence and intransigence. Hey - enjoy life, you got a second chance, make the most of it! You are learning to change things around a bit and eventually you will settle into the new normal for you. Glad to have you on board! Macca
  28. 4 points
    Hello Charming It's great to hear you had a lovely holiday. My husband had NASAH in May 2019, we have just returned from a 2.5 week driving holiday to visit family 1200km away. He managed to do a lot of the driving, I probably let him do too much, but he has paid for it since coming home. He spent last week sleeping/feeling in a brain fog and having worse headaches. I think while we were away he had to maintain a higher level of focus, and touring around and talking with people to catch up takes a lot of energy, and his body and brain were finally able to relax when we got home, which is when he felt exhausted. I told him he needed a holiday after our holiday. He has started to feel improved after 7 days of rest. Hoping you come good soon too. Veronica x
  29. 4 points
    Agree with Louise on the Hydrocephalus,get checked if worried , I think you know if things deteriorate, for me symptoms got increasingly worse, like a dulling of the entire senses and then my balance went, it was very obvious when mine came back and I had been warned it was likely as my ventricles were badly damaged and had to have a EVD for about 5 weeks. . But get checked out if you are worried. A scan can be done which would show any change in ventricle size but I suspect that you are feeling the effect of hitting a fatigue wall and it’s Horrid an day knocks confidence. Take each day. I think telling people is a good thing to be honest, being honest that yes you are looking well and physically you may have regained the weight you have lost but are just at the start of figuring out the changes and what’s different and it’s not easy and you don’t feel great . Tell them you may need to take breaks and it’s not you being rude but building yourself back up with consideration for your hurt brain but to bear with you. You will become an advocate for what you need and don’t worry if you feel a little selfish with that, it’s ok to focus on you right now.
  30. 4 points
    Hi i knew I would get some answers here. Daffodil you are lucky you get annual scans. I live in Canada, and even though my hospital care was superb, the after care was non existent. I saw my neurologist 2 weeks after discharge, again after 6 mos. and had a CTScan. That was the last of it. I will check to see if, like you I see some improvement after these weird episodes. I do look at the bright side though, I’m here to complain about it😉😂😂. thank you Subzero, for the references, that did help. Hugs everyone Pat
  31. 4 points
    Congratulations on 14 years. You are a beautiful lady inside and out.I will never be able to thank you enough for creating BTG..You have brought together so many people who need help, support, inspiration,a good moan or even better a good laugh.😀THANK YOU KAREN. A great big well done on travelling 14 years on this bumpy road that we’ve all found ourselves on. Love Jan xx
  32. 4 points
    Print off "a letter from your Brain" and E mail it to them as it explains what you and brain have been through. My hubs tries that and Daughter. I give them the look which means "Don't push your Luck" and if on a downer I have noticed I cuss a lot. My brain can take laughter but not taking me for the brunt of comments, then they know they have gone a step too far. Perhaps you should say to them "Crossed the line" and do what you want!! I knew I was better as my family started to joke about me sometimes we can take it other times I start cussing at them !! Not proud of this. It shuts them up though xxx Good luck and while you was ill bet they were worried for you. So try if possible to say" you can laugh with me but never at me!" Good luck
  33. 4 points
    Iola, I get you. I’m at 7 years now ,my anniversary just passed in March and like you also feel I’m at a crossroad. Things are more stable, we have had these years of getting used to the new version of ourselves, our new limits, our new capacity and then also testing those and pushing and striving ...and then....you find the energy you have to offer other people is not the same, the BS is not something you want to deal with and people can be so ignorant of what an everyday struggle things are, and somehow what you work towards getting back to doing just rings a little empty. I hope part time helps you find the answers. I’ll post if I find any !! Keep on keeping on, you are doing so well...you’ve got this!! Daff x
  34. 4 points
    Hi Jean, My core and balance post SAH was dreadful, i had lost all muscle tone, massive amount of strength and weight and I used to just topple over and also had lots of unexplained back pain. My answer was two and a half years afterwards I got a puppy...not maybe the best plan I know but I already had a older dog in the house but one which was quite happy if I didn’t walk him, much happier to snuggle up on sofa, whereas puppy meant I had to do daily long walks, if not twice. I ‘engaged’ my core when walking and always took my stick , even then I used to fall, so much that both my dogs know that if 8 drop the lead they have to stand still ... it became a training point but I built my stamina, my core, my distance and it’s been massive therapy. Also it helps to just give me quiet brain time. I cant do hard high energy exercise, swimming is tricky , yoga out now for any inverted moves so walking has been brilliant. So much so that last last year I tried paddle boarding and guess what? I can do it and that’s great for core, and if I get tired I can sit or kneel...so massive progress on that front. Just in the last month i have I have stopped taking my stick on my daily walks unless I feel wobbly and I probably now walk 3 miles each day ...But that’s 7 years since my event...some days I am still off , and can’t go as far but progress is still to be found. Hope you find what works works for you . Be curious and don’t look in the ordinary places for what helps. Walking can lead you to some amazing views. Take care daff x
  35. 4 points
    Love what your doctor said to you....I will go for being part of the wall...as survivors it is a good place to be...be well❤️
  36. 4 points
    Hi my name is Paula, I am 53 years old and new to the site. My aneurysm burst on Saturday 9th Feb. I was just ready to go out with some of my work colleagues to celebrate a birthday. I came downstairs all ready to go, then came the worst headache and neck pain I've ever had, I said to my hubby there's something wrong with me and I think he should call for an ambulance.. I lay down on the floor and passed out, on waking I started vomiting and couldn't stop. My hubby had rung my sister who is a nurse and had just finished her shift, lucky she lives in the next road. She quickly came round and rang for an ambulance. The ambulance said it would be up to 2 hours!! My hubby and sister got me in the car and took me to our local A and E. It was packed to the rafters but they took me through more or less straight away. I felt dreadful and in agony, after waiting a while I had a scan. When the results were back they told us what it was and we couldn't believe it. I was quickly transferred to the fantastic Walton neurological centre and I was operated on the next day, I had a Web aneurysm embolization device fitted, they said it was 8mm aneurysm.. I was very, very scared and when the surgeon and doctors were speaking to me I was petrified but they said if I hadn't had gone in the outcome would have been catastrophic!! After a couple of days in ICU I went on to another ward. I still felt dreadful and got an infection. As the days went by and I started to feel a tad better. I met lots of lovely ladies on my ward who most had gone through the same thing. Most of them had suffered some sort of disability. I was so lucky, I had not . The consultants, doctors and nurses were fantastic all they way. After over 2 and half weeks in hospital I was discharged. I have now been home 3 weeks feeling bit better but still extremely tired while doing nothing and still very headachy.. I'm trying to be positive but am going through the why me ? Will it come again and scared of doing anything stage. It's good to be able to speak or see how others are doing and coping and knowing your not alone.. Wishing everyone lots of love in your recoveries. Paula xx
  37. 4 points
    Oh my goodness Michelle, I have just read that amazing , A letter from your brain... Thank you Tina for sharing !! I’m completely overwhelmed by it. It is inspiring and just beautiful. Thank you also for your support. I think more and more over the past couple of days that I have just taken for granted that I was 100% better! It has and is a shock to be where I am. You have given me a degree of clarity and I’m so grateful. Thank you Michelle and Tina so much for your response and support and kindness. I hope I can do the same in the future to whomever needs it. Nikki xx
  38. 4 points
    Hi everyone I’m Norma I have been on this site many years ago in January 2010 following a subarachnoid haemorrhage. It was the worst time of my life. I had two aneurysms behind my left eye which were coiled. The recovery was a long agonising time for me and even up until now I have never felt the same person I was before it all happened. I suffer severe fatigue and constant headaches. However I have managed to get through life with my good and bad days up until last October 2018. I was called back to the Neuro centre and told I had another aneurysm at the back of my head which had grown in size. They also told me that the two aneurysms that were previously coiled appear to be leaking but need a proper look into. I went in for surgery mid October and had the aneurysm at the back of my head coiled. All went well with surgery but the surgeon told me whilst operating they had a look at my other two coiled aneurysms, he said to me go home get better and we will get you back in for more surgery. So had my pre op 2 weeks ago, I’m now on blood thinners again and my operation is this Wednesday 27th February. The two aneurysms will be coiled again and I will also have two stents put in. Wish me look everyone. xx So here I am back here to chat to people who know how I feel. Will also get to know you a bit more in the next few weeks so I can also give my support to you guys. Big hugs and kisses Norma xx
  39. 4 points
    Hi Neil, so sorry to hear about the deficits Cassandra has been left with following the surgery. This is just a suggestion, it may be possible for her to use the computer using voice activated software. There are some on the market and I think Microsoft has one. It may help to stop her feeling isolated. If she used to like reading there is the option of talking books. All things that could be investigated.
  40. 4 points
    Hi Vicky. Welcome to BTG. Firstly, your health is your absolutely number one priority. You need to keep going back to the team that treated you to seek re-assurances, to ask questions and to be sure the treatment you are receiving is the correct treatment. Then you can follow up your complaint - and if you were unhappy, you were absolutely right to complain. However, make sure you do it diplomatically and in the right way - you don't want to bite the hand that feeds you - nevertheless, they need to know that what they did wasn't acceptable. If, they say that saving your life was their priority, rather than having good manners, then you could cut them some slack. How else would they find out, and improve things if people didn't complain? In terms of talking about it making your blood pressure rise, I think there are a couple of points to bear in mind. 1) The clinical team are there to look after your medical needs, not your social ones, so sometimes it can seem as though they have just turfed you out and cut you off. It's just not their field of expertise that's all. 2) Find a close friend to talk to in a calm situation who can sit down with you and let you talk about what has happened to you, without judging you, or telling you that you may be getting upset too easily. They just need to let you get it all off your chest, and you will feel a lot better for having done that. 3) Set down some questions on paper and then approach your doctors armed with that. It is much easier to do that and talk in a structured way than with an adhoc approach that can get out of hand because of your understandable emotions, in play because of what you have gone through. 4) Although the people treating you are probably very good at what they do in repairing you, in almost all cases, they have not lived the experienced themselves, and so they don't have that social empathy that we have for you, for instance. 5) Now that you have complained, let the investigating body do their job, they are taking the strain for you now, so try not to get too worked up about it. you can only make your next move when you get a reply to it. In the mean time, talk to people, such as your friends and family, who you know will lend you a sympathetic ear. It is very difficult for you, being at the centre of this, not to get emotional because it is without doubt, a very real and terrifying experience to have lived through, However, you will find that their response may feel 'matter of fact.' If I were you, I would get your friend or family member to open the letter in your presence, and take you through it line by line, talking about it as you go, making sure you take in what it says, with their support to hand. Just my opinion, that's all. Good luck and best wishes, Macca
  41. 3 points
    It's five years since my SAH and same-day coiling. Whilst I've been really, really lucky, I've learned to cope with a naggingly persistent, low-grade headache, the common afternoon down-to-the-bone-marrow fatigue and a number of the cognitive challenges that many of us face. Folk around me, especially family, have come to terms with my occasional excessive grumpiness, my inability to multi-task (I was never much good at that!), my hit-or-miss memory and the late afternoon appointments with my pillow! Now retired with plenty to look forward to, I keep myself busy with bits of lightweight volunteering, walking and watching sport. Best wishes to everyone as we continue with our recoveries.
  42. 3 points
    Louise, surely our founding Shunt club member...you and all the Shunt gals gave me strength to face my fears and worries when I found BTG after having my Shunt placed and feeling just rotten , you have faced many shifting tides but always kept the wind in your sails. Sail on my lovely, Daff x x
  43. 3 points
    It has been a few months since your post, but I just came back to Behind the Gray today (almost 20 months post SAH) and appreciate your open rant. It helped me to see your transparency and to read the encouraging replies. I hope you are feeling better and thanks for being here. It does matter. Hugs, Kathy
  44. 3 points
    Hi Carolyn, I remember first coming on here, I used to ask is it normal to have this and that. I was so scared !! Then I saw how many had bleeds etc and it gave me hope as I was sure I was dying, used to sing songs for funeral and any little pain scared me witless. If in doubt always see Doc...it will take stress away knowing it is the norm. I awoke after shunt was fitted, until then I was in cuckooland They are a nice lot on here and a trouble shared is a trouble halved, ..Welcome to BTG (Behind the grey) and we are survivors always remember that. Hope to see you in Green room forum when you are up to it. Headaches come and go !! but get less. All the best to you and see Doc to just get the stress and worry out the way xxx All the best Bossy Win ha ha xxxx ....Oh and on here under Inspiration is "A letter from your Brain" it tells you what happened to our brains. !! Make sure you drink water as I was told that also, as said above by Skippy xxxx
  45. 3 points
    Many thanks to everyone for taking the time to reply. All good advice. I will try and do what Sami suggests and try not to worry until the angiogram is done. I think he mentioned November for this so not for a few weeks yet. I was talking to my sister yesterday (she came with me to the appointment) and between us we feel that we came away with quite a few unanswered questions, so we have both started to write these down to ask next time we see the radiologist. I took a list of questions to the meeting on Tuesday, but forgot to get the list out of my bag! I’ve had great faith and admiration for my neuro team who have kept me safe for the past 11 years, what I liked was having the same two consultants from day one, then about 3 years ago one of them left to go to another hospital. I have never met his replacement and this year I find out that the one who did both my previous coiling procedures no longer does these procedures, so this was the first time I had met his replacement. I do still trust the team even though the two main players whom I knew so well are no longer part of that team. I probably shouldn’t read things on the internet, but I have done and the first thing I read was that Flow diversion for basilar apex aneurysms has rarely been reported. The article was dated Dec 2018. Anyway I haven’t got to make the decision just yet although I could well do without it hanging over me! Thanks again, Sarah
  46. 3 points
    I am very grateful to have found this forum. The stories that so many survivors and carers have shared has educated me so much. I have worked with people with disability for 25 years, I had never heard of a sub arachnoid hemorrhage. My husband had a non aneurism sub arachnoid bleed on 20th May 2019. He knew immediately he needed emergency medical help. We live in western New South Wales, Australia, in a small country town. So many stars aligned that night: the one local ambulance was available and came immediately; the local GP at the hospital suspected the diagnosis quickly and hubby was transferred by ambulance to a bigger regional hospital 90 minutes away for a CT scan (no CT available locally after hours); the bleed was located on the CT and the diagnosis given but there was no MRI machine or specialist neurology care so plans were made to transfer him by the Royal Flying Doctors service to the Neurology ICU at Royal Prince Alfred Hospital in Sydney (600km away); I flew ahead to meet him there only to arrive in Sydney and receive a message from my husband that the doctor on day shift had cancelled the transfer and didn't see why my husband should require specialist Neurology ICU!!! The doctor didn't bother to call me himself. There ensued a very frantic (and tearful) 4 hours of phone calls to advocate to overturn the doctor's decision. I won, and my husband arrived within hours. He spent 16 days in Neurology ICU. Words cannot do justice to the surgeons and nurses who cared for him. Hubby had angiogram with CT twice (he reports the second was excruciatingly painful and traumatic), developed hydrocephalus day 3 and had MRI and emergency surgery to drain fluid (no permanent shunt though). He had Nomidipene for 23 days, Endone and paracetamol for pain, sodium, magnesium and potassium intravenous fluids, had a catheter for 24 days ..,... I can't remember everything now. Poor darling developed major complications with enlarged prostate and endured 2 attempts to remove and reinsert catheter (not related to NASAH, but poor timing!!). He spent 3 days on the ward and was flown back to our local hospital before coming home, then being readmitted because of fever and infection so had IV antibiotics. He's been home 5 days now. I know it is very early days for him, for us. So far he has retained full strength, speech, cognition and memory ( other than when hydrocephalus set in). He has good days that are relatively low pain, and days of high pain where he cant move or function. I am amazed and astonished at his strength, patience, and non complaining acceptance. We are a very close and loving couple, we will tackle what comes together. But oh my god, the suffering and cruelty of SAH is something unbelievable. Thanks for reading.
  47. 3 points
    SarahLS a word you should take onboard is acceptance. It's an important word for you. Your old life is now different from the one you now live. Once you accept you are different your mind starts to respond to your new way of life. It took me nearly 8 years to do this.. but boy what a new life I have now.... A new word can be restart. Take a few aspects of how you lived before and try to adjust them to how you are now. I myself was caught in this trap for a very long time. Over the past 18 months my life has blossomed to something that I thought couldn't happen again. Reading some of my posts, I share how I do things each day. I used to drive a lot! 15 times the normal average minimum. (10,000 miles) Swishy you say you struggle with changing in a dressing room! Adapt, how? Why not use a camping chair that folds up into not a lot of space? Cost is nominal too. Easy to carry, you can also ask for one to use, shops are required to provide one! Although not many people know this... Second option is a walking stick chair see here https://www.co-opmobility.co.uk/mobility-aids/walking-sticks/walking-stick-seats/ For you my word is determination. Look and improvise. There are many solutions to the many problems that are sent to test us. Just ask and sometimes someone has solved the problem themselves... just a thought here... Mike
  48. 3 points
    @weedrea shared these great links this week and thought it worth making more known in forum the news of young actress Emilia Clark sharing account of her SAH and now founding a charity to help rehab for younger folk impacted by this. She has had a large bleed and lasting effects but 8 yrs on has talked for the first time about this. https://news.sky.com/story/game-of-thrones-star-emilia-clarke-almost-died-from-stroke-after-first-series-11672030 https://www.thedailybeast.com/emilia-clarke-game-of-thrones-star-reveals-she-had-2-aneurysms "Clarke's decision to break her silence over her health problems comes as she launches her own charity, SameYou, aimed at supporting young people with brain injuries and helping them to access resources." Also interesting piece in the New Yorker about it. https://www.newyorker.com/culture/personal-history/emilia-clarke-a-battle-for-my-life-brain-aneurysm-surgery-game-of-thrones
  49. 3 points
    Thanks Greg and Win. My GP suggested Amitriptyline til I reminded him what it did to my ectopic heartbeats. I asked about tramadol, I'm not keen to restart them - had them for couple of years with slipped disc. He said try one first. Found out my cholesterol has rocketed to 6.7 (5.9 last year) but not going to add statins to the mix. I wasn't surprised though, eating rubbish and no exercise. I can't shake the depression, anxiety, headache and living alone in a small village doesn't help. Not being able to drive at the moment is restrictive, hate having to rely on people. Well, I've done an Internet shop of healthy food and ordered a new step counter from Amazon. I will take a tramadol and try get my act together. It's 16 weeks now - when I get to six months I might begin to stop thinking I'm going to die at any moment. Love this site - so much info and people feeling just like I do. X
  50. 3 points
    Hello Clive …. also thank you for sharing how you have fared post SAH. You gave a return to full employment your best shot, and well done for trying, and also accepting that continuing full time was not in your health`s best interests. Glad you are positive about how you are moving on, and are enjoying your `retirement`. Having lived with Mrs Sub`s recovery for almost eight years now, I can tell you that even at this stage I am still witnessing these small improvements which maybe others don`t see. Keep up that positive attitude even when SAH has left life frustrating …. and you are right …. later in life we all begin to feel less able to remember …. and our tolerance levels have their moments !! Take care and keep on going Subs
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