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  1. With a big thank you to Les' wife Sandra, to his sons, family and friends for the amazing and very generous gift of £1,100 to help support and run Behind the Gray. This amount was raised after a donation fund was set up by the family as a tribute to our dear friend Les. (Macca) With this gift it means Les (Macca) leaves a legacy of this site continuing to run for years to come allowing us all, old and new members alike, to honour the gentle kindness of our friend, moderator and fellow SAH survivor but continuing to follow his example. Les always came ready to listen, he gave hope where it was missing, kindness and understanding to all and some of the best advice this forum has known. If you ever read a post from Les you knew it came from the heart. Let’s honour that. Les knew how valuable it was to be supported and he knew instinctively to be caring and imparted the knowledge of his own recovery experience and how much it mattered to help make someone else's day that little bit easier. Les will leave his digital legacy with us ... his words of wisdom, kindness and humour will stay with us and will also bring much comfort to those who in future years come to the website for help and support. Myself and all of the staff/team at Behind the Gray hugely miss the presence of Les. x Thank you so much to all of his family and friends for helping Behind the Gray and ensuring that we can provide the help and support to future survivors. We are totally overwhelmed by your generosity. xx
    15 points
  2. Well, I am ecstatic on this cold, bright and snowy afternoon. I have just come in from decorating my daughter's new flat and find a letter from the hospital saying, "I write to advise you that the scans you had on 14th January show everything is stable" It then goes on to say "Dr. Dyde has arranged a further scan to be performed in 18 months and we will write to you with the results when they are available. Currently no further treatment is planned" I am so happy, I could cry! In fact I didn't just get one letter saying this, I got two - an identical letter which must have been sent just to make sure I'd read the first one correctly!! I dread to think how many months I have had all this hanging over me, so the relief is immense. I realise that things may change in the future, but 18 months respite is not to be sniffed at in my book Sarah x
    13 points
  3. Well here I am posting a day late, yesterday was my 7th Anni-versary and I had a really good day. My day started with a lovely phone call from Jan, as always it was lovely to hear from her, i had tried to call her on Monday as it was her 6th Anni-versary but didn't get to speak to her, so we had a lovely catch up yesterday and made plans for her and John to come to see us at some point, we missed out on that last year because of Covid, so it will be nice to get together again. I had a really nice day, i had a lovely walk around a little village called Cartmel, not far from our holiday park, in 8 years of coming to The Lake District I have never been there, i was in the company of my lovely friend Mary and my little Molly. There is a beautiful Priory in the village and I had a lovely walk around inside of it, i did sit in quiet contemplation for a little while and said a very big Thank You to whoever was watching over me on the 8th June 2014, I am truly grateful that they were, i then lit a candle in gratitude for my life and in memory of my mam, which was a little emotional. Then we had a lovely walk around the shops, had a nice cold drink in the village Square, then we headed home. It was just lovely. The last year has been a bit strange, what with Covid going on and everything. The worst parts of the last 12 months were losing 2 very special people who both helped me so much when I first joined BTG. Both Win & Macca were in my thoughts yesterday as I sat quietly in that church, then of course my dad being diagnosed with prostate cancer, that came as a big shock, he is however doing quite well at the moment, although i worry about him, I am not stressing to much. As for me, well i have started walking to try and get myself a little fitter, over the winter lockdown I have to admit i was struggling a bit, i think the dark days made it worse, i only walk for 1 hour every night, it has had a massive impact on the way i feel, both mentally and physically, my blood pressure has come down considerably from 157/75 to 120/ 65 which is about where my GP wanted it, so i am over the moon with that. I have also taken more control of things in my relationship with Verdun, some of you are aware of things that have gone on in that area of my life, well I have stepped up and I seem to be making good progress in not allowing myself to be bullied and abused anymore, still a little bit to do yet, but i feel more able to stand up for myself, i am determined to get things back on a level ground and for the first time in a long time, I feel I am getting my confidence back and some self respect along with it, which can only be a goid thing. I know i haven't visited BTG much in the last couple of months, i have made the decision that if I am going to moan, I won't visit, I feel like i have done a lot of that in the last year, so i thought it would be good to give you all a rest from me. I have been looking in, just not posting much. The one big thing I do want to say is this, Thank you Karen, i know I say this every year but I wouldn't be where I am today if it wasn't for this wonderful safe haven you created for us all to come to, i found this site at a time when I still felt like i was not going to make it, with the support and help that I received when I joined, I am where I am today, I will be forever eternally grateful to you and every member of this group, for every bit of advice, for every note of concern and for the empathy, love and support that we all have for each other. I love my BTG family, I have gained 2 very special relationships from this forum, Jan and I are especially very close, love that lady to bits, Andrea has become a very close friend too, i am blessed to have them both in my life, just as I feel blessed to have you all in my life, my world would be a much sadder place without you all. Thank you, thank you, thank you for always being there, you have all helped me through so much, i will be forever grateful to you all. Here's looking forward to the next 12 months, let's see what it brings, hopefully everything good. Love Michelle. Xx😘😘😘🙏❤
    11 points
  4. Seems mad that six years ago when I woke in the morning little did I know how much my life would change within 12 hours. There have been many ups and downs, job changes and friend changes, life is similar but different. I can’t say it’s worse as I now can’t remember what life was like pre-bleed lol! But I do know that life is slower. Will take a run this morning, something I was doing when I had my bleed. May even run past the spot where I first felt that awful headache, confident that it won’t recur today. For all of you behind me in your time line, remember life post bleed is not all bad, just different 😉 Clare xx
    11 points
  5. Hey everyone, so it’s my nine year anniversary today. I collapsed at an event I was running for over 300 colleagues in central London, should have been my day off and which was the saving of me as a friend with me whose husband died from a SAH realised what was happening and insisted on calling 999. A paramedic fast responder doc was a neurological SME, I got rushed to UCL after a Grand Mal seizure and was at the National hospital for neurology and neurosurgery and in the operating theatre within 6 hrs of being admittted. I had a grade 4 SAH with acute hydrocephalus and went on to spend over 5 weeks in ICU acute care and hospital and was later readmitted to have a shunt fitted ....who knew that is what a day I would have, it was all shaping up to be such a fun day So today I wrote a entry for the blog I started after I was readmitted to hospital a few months on with complications after my SAH that blew up my life on this day nine years ago and led to James (Shunt) being placed. It was as you all know and share a horrid and hard time and I just wanted to track it somehow. I don’t write posts to my blog much at all now, just do it really to mark that days anniversary and more for a marker for myself. It’s an odd one as the main part of ‘surviving’ really came in the years after and which you all share as an experience but of course the dramatic event was such it marked me and plays such a factor in who I am today and so I choose to take stock. Read if you wish, not if you don’t. https://popgoestifty.blogspot.com/2021/03/what-difference-year-makes.html. Sending love and light to anyone who needs it today and always hope and look for the small wins each day. I always think they are there to be enjoyed no matter how hard won Daff x
    10 points
  6. Just had a phone call from the hospital: my coils are all functioning properly and everything is as they’d expect. Repeat scan in 12 months. I’m currently grinning like a Cheshire Cat. Such a relief. Mustn’t think about 12 months’ time just get on with life 🎉🎉 Sally xx
    10 points
  7. I’m grateful to be able to come her and peruse the posts and comments. It’ll be four years in March since my SAH. I STILL have headaches and a buzzing feeling in my head. But I’m ok with that to be honest. My husband is wonderful and seems to intuitively know when I’m not feeling great. I worked for a medical doctor before retiring and we chatted recently. After doing some research he found a study and told me that 16% of us will live with chronic headaches. They come and go! So I’m resigned to that but so very thankful to still be active! To hike and jog a bit with the dogs and enjoy the outdoors is really good medicine. I Hope each one here has a blessed year.
    10 points
  8. My one year anniversary was October 11th, and I haven’t been on this site, in a long time. Happy to be alive. Still having a few problems, but for the most part, I feel wonderful. Anxiety, and Panic attacks are still quite often. The last few days, been dealing with headaches and a feeling of extreme pressure in my head. Which makes me feel fatigued and tired. I feel like I need a massage inside of my head. That’s really strange to say, but I don’t know how else to explain it. Hope everyone is doing well and staying safe. Take care of yourselves.
    9 points
  9. Thank you everyone for your replies, suggestions and kind words. I introduced myself first and then started to read through the forums and posts, there was so much information that was relevant to me, i found the answers I was looking for in there, not so much what I wanted to hear but I do understand things much better now. I especially loved the letter to my brain. Thank you
    9 points
  10. I feel there is something about people not wanting to see the fragility of life and the realisation that we're not really in control sometimes with what happens with our bodies. I remember a colleague saying to me "but you're fine now" and I was so annoyed I couldn't put together a coherent sentence to answer them. Yes, I am fortunate that I don't have any noticeable physical issues but that doesn't mean I'm fine emotionally or mentally. Some people's reaction seems to be that it's easier to just pretend nothing ever happened.
    9 points
  11. Hi, I’m a newbie, discovered the forum by chance and it’s been a great help. It’s very useful to hear other people’s experiences as it’s something the specialist can’t tell you. Before I go into my story ... if you spot spelling mistakes, I’m Belgian, so English isn’t my first language and my Ipad has the unfortunate habit of switching Words to Dutch 😂 I had my bleed on feb 18th. I’m single, so was home alone. I’m used to severe migraine attacks, but immediately realised this was something completely different. Immediately sent a chat message to some friends to bring me to Belgian variant of A & E. I tried to get to front door to unlock IT, but had to give up half way there, so first sat down and then, as I thought IT might be a bit too dangerous should I lose consciousness, laid down on the floor. I knew I was having a brain bleed as my mom had one (she had a brain seizure a couple of days later and sadly passed away) and because it wasn’t my usual headache. While I was laying there waiting I kept checking if I Could still think, talk, make calculations, move my limbs, ... I didn’t lose consciousness and my friend, a volunteer fireman, was there within 15 minutes (jumped my 1.8m garden wall apparently😂). He called for ambulance while I gave him all relevant information, like the fact I suspected brain bleed, my blood type, the fact I have porfyria which affects the medicine they can give me (still thought I might lose consciousness). I started vomiting too ... and had just eaten a huge bag of peanuts, so not a pretty sight 😂 I was in A & E within an hour of the bleed, with mild hypothermia (from laying on cold tiles) and scan showed, like I suspected, a severe bleed. As soon as my COVID-test cleared, I was brought to ICU, hooked up to all kinds of machines and drips. The severity of the bleed made them think I’d continue having them through the evening, according to my brother. Found that out later though. I was pretty alert throughout and was able to discuss my condition with the head of ICU that evening (though by then I was pretty doped up on pain killers). They suspected an aneurysm, but it wasn’t clear on the scan. I underwent another type of scan the next day, which showed a possible aneurysm, though extremely tiny. They had me transferred to a more specialised hospital, for further testing and operation (clipping cos deemed too tiny for coiling). I had an angio, which showed no aneurysm however. All arteries okay. I had a SAH with no apparent cause it seemed, Hunt and Hess grade 2, Fischer grade 3. All in all I was hospitalised for 10 days. I’m home in sick leave since March 1, have another scan and consult with neurologist next week. At the moment I’m okay. Some days are better than others. I still have an occasional headache, very mild though. Then again, I’m used to severe headaches from migraine, so ... Sometimes my brain does some strange things, strange sensations within it, which is a bit frightening, but ... part of the deal I suppose. I’m okay with doing things around the house and garden, doing administrative stuff, .... but I take care not to strain myself and I do it way more slowly than before. I need more sleep than I did before and it’s hard waking up, takes me longer to be completely awake, but it’s still early days. My concentration is getting better too. Think my eyesight in one eye has worsened a tiny bit, but might be too early to have it checked out. One thing I found out though is that I can’t get angry at stuff anymore, otherwise I get a splitting headache 😂 Will have to learn to become more Zen. I think I might be ready to go back to work, though not fulltime. Work has been brilliant though, if okay for the neurologist, I can go back in whatever capacity I want, with sliding hours where I do my hours whenever I want, so can take naps when needed. I know I have to be careful not to want too much too soon, but ... as a single person, having wages replaced with sick pay is a catastrophy financially. I’ve taken out a loan last year to build my house extension, so ... need to pay that off or I lose my house. I’m lucky I work for local government, so sick pay doesn’t kick in immediately (still have some days left before it does), so my idea is to gradually move up to full capacity, using the remaining ‘sick days’, the offered sliding hours and then my vacation days (I have a whopping 35 days stashed up) to the fullest so I can rest up when needed, taking care of my body and mind, whilst minimizing the financial loss. And to be honest, I actually long to go back to work. I’m bored to death at home.
    8 points
  12. Well, haven’t tried the other part of the song yet 😂 am waiting for next consult to ask whether it’s okay to have alcohol (low quantity) again Think my attitude stems from past experience. My mother’s side of the family has the unfortunate hobby of dieing at a relatively young age, so already took into account that it could happen to me too. It makes you live your life differently I suppose. My gran has survived a grand child, her three children and her husband. Though each and every death devastated her thoroughly, she always found the inner strength to go on and live her life, to enjoy the little things. I called her the original Phoenix. When she passed away at the age of 86, I had a Phoenix tattooed on my back in her honour. I guess I’m just like her, I just use ‘experiences’ like that to ... become stronger? There’s still too much of the little things for me to enjoy: the Hairy toddlers (4 cats), early morning photography in the middle of nature, books, music, holidays, food, ... And though Covid and my 6month driving ban (grrrr) might have put a stop to some of that, it’s only temporary. I’ll just use the intermediate time to get my strength back up. When there’s still things like the pic to enjoy, how can you be down? Though that said, I’m now off to clean upstairs and if there’s one thing I hate, it’s cleaning windows 😂😂😂😂
    8 points
  13. Quick update: MRI from January 5th looked good. Coils are intact and are in place. 👍 It was the Head of Neuro and my Doctor who coiled my first aneurysm from 2010 that saw me this time. We asked him about the stent and he said he does not think I need it for now. He ordered another MRI and Angio for July which will be my 1st year anni-versary for my second aneurysm and go from there. It makes a world of a difference when the Doctor is straight-forward and as decisive as he was unlike the other Doc I saw in November. I know everybody is different and I trust their expertise. I just felt more at peace this time and boy, it feels so great. 🙂
    8 points
  14. Just come out of hospital. Unfortunately my scan was delayed by 40 minutes which didn’t help. Staff were so helpful and kind. She put the head cage thing on and I couldn’t handle it so she thought what she could do instead and used a different device which didn’t come over my face. My husband stayed with me the whole time. I was crushing his hand! Unfortunately the headphones weren’t working with sound as we found out afterwards that the cable wasn’t attached. The third scan was the longest and seemed to go on forever. When that stopped I had to press the buzzer as I had reached the end of my tolerance of the whole experience. But they’d finished anyway which was good. Still it’s all over now and I’m exhausted. Thanks everyone for all your kind support. I really appreciate it. Sally xx
    8 points
  15. Hi. I will attempt to briefly introduce myself and apologize in advance if I have messed up on the ‘rules’. My brain is a bit fuzzy. 😜 I had just finished a little get together with three of my grandkids and sat down to have popcorn when suddenly the head and neck ache hit me. At that moment I remembered hearing a man on the radio talk about the headache that would kill. He said call 911 and tell them that, and they would have a heads up about what was happening...so I told my daughter to call and tell them that. Within a few hours I had been airlifted to Iowa City, to the University of Iowa and had surgery. Like many of you, I have no clear memory of much that went on after that. So from 11/29 through 12/09 it is all gone, but on the 9th I remember a group of neuro surgeons were gathered around my bed and one said they had waited long enough and would put a shunt in that afternoon...and sure enough, I ‘woke up’ about 7:00 that evening and I had stopped vomiting and the headache was at least tolerable. From there I was transferred to a rehab facility on the 11th and then discharged to go home on the 17th. I really am only now beginning to understand how serious this has been, and still is. I have always been a very positive person, so I have been taken off guard that a little fear has crept into my head and heart. I do not like that, AND I want to be wise about what I am facing. Physically I really am doing well as far as any disability from the SAH. It is mainly my brain and all those thoughts and emotions that go on there that are ‘tripped up’. Plus of course the nagging headache. Thank you for the advice to stay hydrated. I am really working on that, as well as deep breathing. 😁 I had just last year, October 2019, bought a house and moved from my ‘marriage home’ as my husband of 38 years decided he did not want to be married anymore; so, I have had an even more interesting 2020 than the COVID stuff. But I was doing well and getting adjusted. I simply really believe God is with me, that I am not alone. That is a big part of the message I read from you all as I look at all of your posts. This is a safe place. That is what I need. thank you so much.
    8 points
  16. That is so kind of Macca's family, enabling this site, which helps so many, continue into the future. Macca will always be remembered by those who 'met' him through this site as someone who always put others first, always willing to help others with his sound advice which was gained through his own recovery from a sah. He had an amazing gift of writing his posts so eloquently, leaving the reader with knowledge and advice that came from the heart. Sarah x
    8 points
  17. Since my SAH l thought that pushing to the limit was the way to get better. Then I watched the video flooding sensory overload and read a few other things and realised I was completely wrong. That was in November, my life is totally different now. A lot of the time the front of my brain would feel numb and I couldn’t think straight which led to numerous other problems. I realise now that I was creating problems that didn’t exist which would cause stress for weeks even months. Lockdown has helped by eliminating a lot of my triggers and I don’t push myself anymore, I’ve found I can actually do more work now. Mindfulness has also helped. lt annoys me that in all these years I couldn’t work it out myself but I suppose that’s what brain injuries do. So I’m looking forward to a much happier stress free life.
    7 points
  18. Hello BTG forum I have just found this group and am posting for the first time so please forgive any fopars... If this introduction is too long winded I am sorry, I am having a very difficult time coming to terms with what has happened and am struggling to find any useful feedback from my doctor... I don't want to burden my family with my worries and found this group and read some threads and hope maybe I have found somewhere and a group that will understand what I am going through and be able to offer me meaningful guidance for this journey.. As an introduction I am a very lucky survivor of a no cause SAH which happened on the 23rd Jan 2021... 4 days before my 49th birthday.. My life prior to the SAH had been a wild adventure, numerous businesses and a rewarding career, 19 years overseas in the Gulf and Asia, some extraordinary experiences, several scrapes and situations you could not make up as stories, and I truly felt like I was Batman...invincible... Wow was this SAH a rude awakening and why I am now truly lost.. My SAH story.. I was sitting at my desk at around lunchtime trading cryptocurrencies and forex which I used to do daily, very relaxed smoking "herb" my chosen vice when a sudden onset "thunderclap" headache arrived... Unusually for me I knew something was not right as said having lead varied life and being through many scrapes my "gut" told me this was not something to ignore or self medicate for.. so I took myself to lie down, pain killers didn't work and after a couple of hours I called the NHS line to get advice.. I ended up having to take a taxi mid afternoon, alone to Southport Urgent Care hospital where they conducted CAT scans, chest XRays, bloods etc. and told me they believed i had had a brain bleed... Luckily for me I was very lucid, I was in fact still trading online on my phone which the doctors thought was unusual but I was really just trying to distract myself and prove to myself my brain was working.. Due to COVID I went to hospital alone, my fiancé is from overseas and didn't understand what was happening and was alone at our home, my 78 yr old mother was alone in the midlands and my sister alone in London...I had to make them all aware what was going on which was a decision I struggled to make to be honest, not fully understanding what I was going through and not wanting to cause my family stress They decided to send my in an emergency ambulance to The Walton Specialist Neuro Centre in Liverpool.... the nurses in Southport and ambulance staff were incredible and kind and started to try to explain to me the severity of what was happening ... All I can say about the care I received from the NHS is that it was incredible, many of the nurses and doctors are indelibly written into my memory... A 2 week stay at the Walton Centre, CAT scans with dye... 2 DSA procedures, not able to have MRI as apparently I have metal in my eyes and for someone like me, who understands through facts and data, the most frightening and stressful diagnosis... No cause SAH.... So, you nearly die, are incredibly lucky you are not physically or mentally impared, after 2 very invasive DSA procedures they have no idea what happened or why... is it just me that finds this more difficult to deal with than something that could be pin pointed as the cause... A separate "incidental" aneurism in my brain that they at this time do not want to treat.. So 3 months on having had to find a new house to rent as our landlord had sold where we were, the stress and physical exertion of the move and my own stupidity taking on too much I am now in need of advice and support ... I am willing to share my experiences and happy to be an active member of this group and truly hope as I learn and progress I can pass some insights to others in need.. However, at this time it is I who is in need, maybe a delayed reaction or realisation that I am not who I was before it happened I feel quite lost and alone in how to deal with the cards I have been dealt.. So I thank anyone who has managed to wade through my introduction and thank in advance anyone who provides advice either directly to myself or to others that I find reading through the forum posts.. I am happy to be here, and look forward to learning and participating where I can Thank you all again I am sure I will ask many questions moving forward... Best wishes to all... Daniel..
    7 points
  19. Hello, I live in Oakland, California, USA. I had a NASAH on December 23, spent 5 days in the hospital with excellent care, and then sent home with minimal information. I'm so glad I discovered this forum--I'm having on-going symptoms that have freaked me out a bit, but reading through some of these posts, I see it's all to be expected and shared by other NASAH folks. This is also helping manage my expectations in terms of how long they'll go on for--the doctors really made it seem like I'd be back to my baseline within 6 weeks. With me, it's like I improved 75% in the first couple of weeks after discharge, but this last 25% of symptoms--headache and fatigue, mostly-- is just stubbornly sticking around. I'm 59, and pretty healthy. The NASAH occurred when I was riding my bike up a steep hill--something I do -- or at least did -- all the time. I think I'll just ride the flat roads for the time being. From what I'm reading, I seem to have not gotten a terrible case of it--I was back at work a couple of weeks after the incident, though I'm lucky that I have been completely working at home for the last year. I'm taking more Tylenol than I used to, but getting the work done. A follow up MRI from last week didn't reveal any big problems. Anyways, that's it--just wanted to introduce myself, and I look forward to learning more and sharing more NASAH stories with you all!
    7 points
  20. Hi All, This is the week 4 years ago that my life took a bit of a turn. SAH with no explanation...followed a few days later by vasospasm which was worse. Intensive care rehab and thankfully home. Today I am still bothered with what I call my feeling of being Swishy (feels like I walk on a boat).have not fully regained my core strength..but I tolerate it ok...feelings of being mixed up a bit pops up now and again but again I can deal. I think I have gotten use to the feel of my body. I am of course aware of how I felt before for 64 years but I will say this and I say it loud...I am so very very thankful for surviving this and realizing that being patient with myself has been the key to how I feel today. I realized at year 1 that I had for sure improved but truth year 2 was remarkable. I really could see clearly that I had to measure this journey in months not days. It was a very helpful discovery for me. I also went for mental health therapy for a bit and found it to be very helpful as well. Today, I am excited that I am awaiting the birth of a grandson and my son just got engaged, so we are planning a wedding...Since my event my husband and I have enjoyed traveling and enjoying our friends and family. I recently signed up to be a zoo volunteer and am trying to learn Spanish. I am trying to make everyday count. So friends I wish you all well and I ask you to give yourself patience and time, the human body is an amazing thing... xx Jean
    7 points
  21. Hi everyone, just to say thank you all so much for the lovely and helpful replies. It really means so much and has made me feel much better and reassured. I will go through each one again in detail (still takes me a while to retain information!) but just wanted to say how grateful I am to read all your responses and for the lovely welcome. 😊
    7 points
  22. I’m 43 and I’m head of a tiny department (4,5 people and no, I didn’t saw one in half ... she works for another department too). Local government, a coastal town in Belgium. Closest equivalent to my job I’ve ever seen is ‘housing inspector’, that daytime program on the BBC a few years back, so declaring houses uninhabitable due to low quality or because the inhabitants are hoarders or just plain messy. I also do some local taxes, so I have a really positive job! 😂 😂 Stress level is moderate most of the time, high on occasion, but after 16 years I’ve pretty much seen and heard it all, so doesn’t really get to me anymore. Blood pressure is always 12/8 I’m keeping hydrated, so much so I feel like I’m getting my 10000 steps a day just by my frequent trips to the bathroom 😂 Yeah, you have to keep your sense of humour. I’ve even ordered some more mouth masks and T shirts with a sarcastic text, to keep my wardrobe updated 😂 One says ‘ long story short, I’ve survived’ 😂 because I’m already sick and tired of explaining what happened 🙄 Some friends feel I’m not taking everything serious enough, but I am. I know I’ve been very lucky to have escaped unscathed and I have taken steps since the ‘incident’ so that, should this or anything like it ever happen again, but with worse outcome, my brother knows what to do regarding funeral (though he won’t approve the sarcastic song choice 😜), have updated my living will, so there’s a DNR, the legal documents regarding ‘unplugging machines’ are in order, ... So yes, I do understand I went through a life threatening and life changing ordeal, but ... I refuse to let it rule the rest of my life I suppose. You just have to get on with it, the best you can. Like Chumbawamba sang, way better than me: I get knocked down, but I get up again. You’ll never keep me down. And yes, I know I need to rest a lot. I used to sleep around 5 hours a day (insomniac), now that’s 8-9 hours and am not doing anything all that taxing yet. That’s why my plan is to phase in work gradually. I’m just lucky I can do it like that, what with my tiny stash of fully paid sick leave and then my 35 vacation days left. The flexibility Regarding when I do my hours is also a big help and The good thing about being the boss is that you can delegate though, which I’ll be doing more from now on, whenever I feel I need it.
    7 points
  23. Well, today is my 17th SAH anni-versary. Where have all those years gone? Still enjoying life to the best of my ability although, like just about everybody, the last 12 months have been hard and I think, will be hard for the next months to come. I actually found out I share this anni-versary with the launch of Facebook 17 years ago today. Wish I had as much money as Mark Zuckerberg . https://en.wikipedia.org/wiki/History_of_Facebook#:~:text=Facebook is a social networking service launched as,Saverin, Andrew McCollum, Dustin Moskovitz and Chris Hughes. "Facebook is a social networking service launched as TheFacebook on February 4, 2004. It was founded by Mark Zuckerberg with his college roommates and fellow Harvard University students Eduardo Saverin, Andrew McCollum, Dustin Moskovitz and Chris Hughes."
    7 points
  24. I'm a family physician graduated in 2001. I had my shots in Dec and Jan. It was Moderna. Arm pain with first shot and flu like symptoms but not fevers after 8 hrs of second shot. Lasted may be a day and totally better the next day. It is a normal reaction of your body trying to make antibodies. It is very safe protein molecule so it can’t change your DNA or cells. You won’t grow a tail 😺 it is very unstable that is why they keep it cool. Moderna has a better method of putting the protein in a fatty/ butter like substance so it does not need extra cold temp. Pfizer does not have that method so they have to keep it extra cold. But someone has to really know how to handle, store, draw, shake Pfizer vaccine. Some people have more reactions than others. If one is above age 55 the reaction might be milder. Many people with cancer etc emphysema , on meds lowering immunity have got them and they did fine. So if you can get it please please do get it. Cases are down here I think thanks to the vaccine. Good luck
    7 points
  25. Thank you for all the warm welcomes! I look forward to being part of this very unique community. Seems these things often occur during exercise--a friend of mine told me that you never hear of NASAH happening to people while sitting around watching Netflix. (He was joking, of course.)
    7 points
  26. Such a gem of a man and the generosity of his family in their time of loss is humbling. Les said more than once on this site; “Keep talking to us and we will offer our support.” And he always listened and answered here and I hope his legacy means many more people feel less lost post their SAH thanks to that gift. I think Win would have also added, “we are gonna miss you pal” 💞
    7 points
  27. Hello everyone! it’s been awhile since I posted, but I can’t let an anniversary pass without checking in. My anniversary date is actually tomorrow, October 26, but I wanted to post today as the opportunity presented itself. October 26, 2016 is the day that defines my life as before the bleed and after the bleed. I have been one of the lucky ones because other than the occasional headache, « fuzzy brain » and some fatigue, I’ve done pretty well. I am an Early Childhood Educator (30+ years) and I had to leave the classroom, as it was too chaotic for my brain. Today, I work with children on the Autism Spectrum as a Behaviour Interventionist - in their homes. Same field, just tweaked a bit. Personally, my main struggle has been the toll it’s taken on my mental health. When needed, i can count in friends, family and you! I have had therapy and that is always a big help. At the end of the day, this site has been a validation of my feelings, my fears, and has provided me a community of of generous, kind hearted people who have walked a mile in my shoes. For that I thank you. So, on this anniversary, I want to wish all of you continued good health, and most of all, laughter💜💜💜 Much love, Pat
    7 points
  28. I just wanted to post this and share with the forum. I am 9 years on from my SAH with no evidence except from lumbar puncture. Did the 28 days hospital and released to absolutely nothing and have struggled ever since. Many odd symptoms but this constant exhaustion was seems to be a thread running through many SAH survivors. I still have to rest for several hours a day and nap for an hour. My lunch break is about two to three hours. Then by 7pm I've had it again. I can't even go out for the day as I get tired after a few hours and if I don't sleep I get dizzy and faint. Anyway for years I felt my body was fighting something rather than just getting over SAH being the whole explanation. It's taken years, tests by different specialists all coming up negative and I'd just about given up hope and just accepting my situation of what feels like an 80 year old or more. I'm now 51 and managed to find the right route to go down and have just been diagnosed with Lupus and Sjogrens Syndrome autoimmune conditions (scared and relieved about it). It was sudden very dry constantly runny eyes that got me down the right path. I'd had a very dry mouth since the SAH and an unquenchable thirst most of the time, sensitivity to light and rash when I go in the sun but no one picked those symptoms up. I don't know if the SAH sparked everything off and the menopause has exacerbated things but I wanted to put it out there that the exhaustion some may feel may point to another underlying condition which the after effects of SAH has hidden. I have medication which will helpfully ease the tiredness and a bag of other meds now to take! But I am extremely pleased that I didn't give up when GPs have written me off as a hypochondriac or just put everything down to SAH. It is becoming more known that body trauma can kick start autoimmune conditions and if you feel something isn't right don't give up. Hopefully any others who feel like me won't have to search for years to get answers. Just because you have had one rare condition doesn't mean you can't have another.
    6 points
  29. Tomorrow is THE day. Please include me in your prayers, thoughts and send out a successful surgery energy out to the universe for me. 🙂 Take care all of you and will update you when I'm lucid . 😆
    6 points
  30. Hi My name is Davie, I'm 63 years old and now medically retired following a SAH in 2015 which was coiled, unfortunately I have been left with cognitive memory issues,and chronic headaches and fatigue. I found this site a couple of years back but don't remember anything about that time I was on, and because I have my struggles at times like many on this site,no one from the outside seem to understand so if you don't mind me coming back on I would be most grateful...and I have now written my email and password down on a post it Note so that I won't forget. Regards David
    6 points
  31. YES YAY...testing all clear xx Jean
    6 points
  32. Well, did my first two days at work and .. I’m pretty much okay. Was well tired yesterday, but think that’s more because sunday’s Line of Duty’s cliffhanger left me a bit hyper and unable to sleep than due to work 😂 I work a bit slower than I used to (that speed was untenable however ... I was like the Duracell bunny on speed), but hectic mix of phone calls, huge open work space with colleagues dotted about here and there, the adoring public when they come to make a complaint, politicians badgering you, ... (it’s such a joy being a local civil servant 😜) ... so far, I’m dealing with it quite well. The 80% progressive return was approved, am off tomorrow to just laze about. Had results back from last week’s MRI (neurologist really, really, really wanted to be sure there wasn’t a hidden aneurysm, so had to psych myself up again to get into that damn machine... claustrophobia) and everything is okay. It was definitely perimesencephalic. Only one more neurologist visit to go: mid august, so I’m legally allowed to drive again (by law at least a 6month ban in Belgium). Already booked a holiday to the South of France beginning of September, so ... the countdown begins: getting vaccine, getting driving license back and then off to the mountains to take pics, drink Chartreuse and eat humongous amounts of excellent food 😂
    6 points
  33. Hi Rosie The best thing you've done is open up! I completely understand that you want to avoid discussing what's happened, it's personal, it's yours. I had a real problem discussing it when I had a stroke but eventually realised that talking about it was the best thing I could have done! Being totally honest Rosie , it is people like you who inspire me. You are prepared to come onto a public forum and express your true feelings; that's amazing, well done you!. The best thing we can do is talk about what's happened. I wish you the very very best and hope you take the advice/help you'll find here.
    6 points
  34. My Subarachnoid haemorrhage happened on 26th Feb, I was at work and all of a sudden had the worst headache imaginable. I managed to get outside where I was met by my husband ( who works at same place) and 2 of the shift managers, all I could do is clench the back of my head and neck, my throat felt like it was closing up and I remember I was crying. My managers told my husband to take me straight to the hospital which is what he did. Owing to covid restrictions he wasn't allowed past a&e car park and was told to go home. I was left alone, in pain and frightened. It took an hour and half to be seen by the triage nurse who gave me 2 x paracetamol, and although my BP was through the roof told me it was probably a migraine and to wait back in the waiting room. At this point I was questioning my own symptoms and thinking how stupid I'm gonna look going back to work and telling them I had a migraine at the same time the lights and the sounds of people talking were driving me insane. 4 hours later ( total of 5 1/2) to see the doctor. I was called in and as soon as I told the doctor what happened I was straight down for a CT scan where it was confirmed I had a bleed. I was awaiting transfer to another hospital which specialises in neuroscience but to be accepted had to have a negative covid test. After having 2 covid tests as the first test was a normal test which results could take 48 hrs and I was supposed to have a fast track test so I could start treatment that I needed, and waiting for transport (first lot of transport refused to take me because of the diagnosis as the wrong hospital transport was first booked) I eventually made the neuroscience high dependency ward 24hours after I initially got to a&e. The care I received there was fantastic, I was on complete bed rest laid flat on my back and catheterised from the minute I arrived, this was all overwhelming as at the previous hospital I was able to walk around, go to the bathroom independently basically just waiting and using up a trolley until I was transferred. I was taken for another CT scan and had an angiogram which showed no aneurysm. Consultant said it was a spontaneous bleed with no known cause. After 10 days in hospital I was discharged, it's still early days but I was expecting to be better by now, the fatigue is immense and even though I was warned about the after effects I'm still quite shocked how debilitating the tiredness and the continued headaches are. My short term memory is shocking and I can't concentrate for long. I'm hoping this doesn't continue for too much longer as I need to get back to work to earn money, I'm getting SSP at the moment which is not sustainable for too long. I'm glad I came across this forum, reading about other people's experience has put my mind at rest as I was worried about the continuing symptoms but realise I'm on a long load to recovery and realise it's not a race to get better and that I need to listen to my body.
    6 points
  35. As I’ve started to adjust to the fact recovery will be more of a slow & steady marathon than a quick sprint, I’m offloading non-essential activities and reducing my work commitments. Even the activities required to “slow down” can be tiring, but the more I let go of - the anxiety and headaches are less intense. I’m hoping and praying for a slower pace so I can heal & enjoy my son’s wedding in May. Best to you all.
    6 points
  36. Hi Susan Bless you, its so hard sometimes. Sending hugs your way 🤗 Never feel like you are complaining. I know your husband went through it, but so did you and both are adjusting to the new him. Lock down this past year has been very hard and working from home and being together 24/7, you have noticed these changes in his ways so much more. If you feel you really cant sit down and talk about this with your husband. I would definitely go and see his Dr, maybe go together. Your GP can refer your husband or both of you for counselling. It would be an opportunity to discuss your feelings. I know you dont want to make your husband feel more self conscious but he may be totally unaware how you are feeling. I am sure his need of control and reassurance is because he lost some of that. Your lives have been turned upside down. It can take a long time to come to terms with whats happened. I was a very independent person before my SAH. I worked full time and hated that i could not do the things i could before. I got very frustrated at myself. I also hated noise. This did improve over the years. I still suffer with fatigue and most nights i am in bed by 9pm. My body just goes on close down. My husband has been amazing and very understanding. We talk a lot about how we feel and always have. This really did help. If i go out for a late night it would take at least two days to get over and always does. Its about compromise and meeting in the middle. Communication is so important for both of you. For your husband, its about learning his limits and again compromise. At 5 years i was getting there, but still struggled. I am now nearly 14 years down the line and still struggle. Good days and bad days. I had counselling in the early days and it really helped me to talk things through. I hope things get easier for you both and you get some help. Keep in touch and let us know how you are both doing. Take care Love Tina xx
    6 points
  37. Okay, this is a late post to my third year post SAH anniversary. Hurray. It was actually on March 6 and now it is (let me look at a calendar) March 17th (a pinch to all not wearing green). Our youngest two adopted children (we also have four adult children) are on Spring Break from school ~ not so spring weather-wise. We had a BIG snow blizzard a couple days ago. Lots and lots of shoveling. My eleven year old was upset that we didn't get to travel again (usually we travel over school breaks) and so my husband took him to a nearby hotel with a heated pool to celebrate. That worked. We were all going to go but then our other special needs adult neice (18) wasn't feeling well. So, we two stayed home. On the exact day of my SAH anniversary, my husband, youngest daughter (a nurse) and I went to get our covid vaccination (Johnson&Johnson, one shot). It was held at a fairgrounds about a 30 minute drive. Not a long wait in line as some places. I had a sore arm for several days and was very tired, but no other side effects. We have a phase eligibility program in Colorado. I am glad we qualified and were able to find an appointment. I am pressing onward in my SAH recovery ~ and, still struggle. The posts I've read on BTG have been so helpful and encouraging. Thanks everyone and keep posting. We have a new grandbaby ~ a little boy named Lucas. He was born October 30, 2020. Our sixth grandchild! I celebrate my 64th birthday the last day of this month. Two of my husband's sisters are flying in this Friday to visit. So, some travel is returning. My husband slipped on ice in early January and tore apart his shoulder rotator cuff tendon ~ OUCH. He had surgery on February 12. He has started physical therapy. We have been told that it is a long recovery (8-12 months to get full use of the arm). He is in a sling. He has been such a support to me and now we feel like we both have limitations! I've had to do more and do all of the driving (not easy post SAH). It has been an added challenge but also some lessons learned (maybe I was depending too much on my dear husband). I don't like that I forget not only moment by moment little things but have also forgotten chuncks of time and events. It makes me sad. However, I still find humor and joy admidst it all. Thanks to BTG and best regards to each of you. Kathy (Colorado)
    6 points
  38. Money is overrated (unless you've got none!) Congratulations on the anniversary!
    6 points
  39. Hi Xmartz Sending you a great big virtual hug xx You are not worthless at all, you have been through a huge trauma. Be kind to yourself as our lovely Karen once said to me on here. Do you think you could sit down and write down all the things you are struggling with or getting frustrated with. Your children are adults and maybe as a family you could have a chat about ways they could help you. You may have done this already xx Also have you contacted your Doctor or Consultant about your angry out of control outbursts. There are people you can talk to away from family members that can help you to be aware when things are getting on top of you and give you ways to cope and calm things. I really feel for you, i get frustrated when i cant do things i used to or i bang into something or drop things. Get very cross at myself. If i am tired i now know to leave things that can wait and start afresh the next day. I found that i have learnt how far to push myself. I now know my limits and when i have to step back and say no or just have to rest or ask for help. I can assure you it has taken many years to get to this stage and still get caught out sometimes ! Please always remember you are not worthless, you should be so proud of how far you have come. We all have blips, sometimes one step forwards two steps backwards. Hold your head up high and never hate yourself xx If you can, please talk with your family or Dr to get some support and help and you know we are also always here to listen and share our experiences. Keep in touch, take care Tina xx,
    6 points
  40. Welcome to BTG Monique, sorry to hear that a SAH spoiled your Christmas and New Year but glad to hear you are on your road to recovery. Sorry to say but it may be a longer haul than you would like but with positivity and determination you will get there. It is very hard to accept that things are not as before but you will eventually reach your new normal and it will be different but not necessarily worse. I am coming up to 6 years post bleed and it's been a rollercoaster ride, mainly regarding work. I like you was never sick and did not believe I had to be off work for so long. I resorted in the end to cleaning out one cupboard a day - and that was all I could manage. Everything made me so tired that I had to spend a lot of time just sitting which was not me. I gradually built up my stamina and started taking short walks and eventually getting back to running which is my favourite pastime. Work has been another long haul, I have now changed from working 40 hours a week to just 22.5 with 2 days off. I've changed my job 3 times since the bleed mainly due to stress which really is a no no for me. Hopefully this is it and I won't have to change again before I retire. Take it slowly, drink plenty of water and be kind to yourself. Regarding sleep, as SM has said sometimes a nap during the day can help with night time sleep. If it gets unbearable speak to your GP as I found a sleeping tablet once a week made a huge difference but please speak to your doctor first. Take good care Clare xx
    6 points
  41. This sounds quite like me other than mine was caused by an aneurysm that was coiled. But I too didn't lose consciousness and it was a fairly small bleed which had me in hospital for about 10 days. Best advice - take it easy on yourself. Think of this as like having a broken leg, healing will take a while - any blood on the brain causes some level of damage. In my case, I'm 5 1/2 years post bleed but fairly close to where I was before it. Though stress and tiredness impact me much quicker than they used to. I'm back working full time ( I know I've been very lucky!). I also have the benefit of working with a team who were with me through the bleed so have some level of understanding of the recovery process. For me I had 3 months off completely then 1 month back 3 days a week and a further month back 4 days a week. By then I'd so much leave to take that I had another couple of months with one day off a week. I'm sure others will say more but the two things I've repeated many times: Firstly, drink lots of water and secondly have a half-hour lie down every evening (not necessarily to sleep but more to turn off the outside noises etc and give your brain a rest). I did this every day for at least a year and when I have stressful days, I still do this. In answer to your question, yes it took me a couple of months to get over the noise sensitivity and around 6 months before the daily headaches were gone. Remember you're brain is recovering from an injury so doing "normal" stuff is like it trying to do it but with less than 100% capacity - your brain gets tired quicker....and when it does it can overwhelm you very quickly (my hubby says I turn into a toddler having a tantrum and I get sent to bed!). Manage your stress and manage your tiredness, but also don't expect that this will be suddenly over in days (this is like a broken leg, not a sprained ankle). Whether you get back to 100% or adapt to something different, it's a journey. But please don't be hard on yourself, continue to come and talk with us! Always remember, you may not have outward scars to prove it, but this is a major event that you've been through.
    6 points
  42. Hi there Its 1 year ago tonight since I had a SAH and spent weeks in hospital after a coiling. I have been so lucky in that I have no serious physical problems apart from headaches and general weariness most of the time. But i am very emotionally wobbly quite often. Especially tonight so I thought I'd come on here and say Hi. Hope everyone is ok x x
    6 points
  43. A big thank you to Louise for her very kind and generous donation to BTG! x
    6 points
  44. So kind of Macca's family nice legacy of a true gentelman.
    6 points
  45. A truly wonderful legacy from an equally wonderful man xxx
    6 points
  46. A fantastic legacy in honour of a fantastic man who has left a huge hole in so many lives xxx
    6 points
  47. So my husband has passed his driving assessment. He has a full licence. He is so happy. It’s been so hard for him but we always focused on there being hope. So proud of him. For anyone thinking of appealing under exceptional circumstances good luck and it is possible to get your licence back.
    6 points
  48. Hello from Compostc 66year old male had my Sar 21 07 2012. I got my iPad this year so am just learning. Wish i had it 8 year ago This site would have helped me a lot back then. I can’t fault the hospital treatment and care but once discharged I was just left to get on with it. I think I’m still getting better though I still do to much . never seem to learn
    6 points
  49. Hi JH A very bizarre sequence indeed. As Tina said, your mum is in the best place and I'm sure the Drs will be doing everything they can to find out what has happened. We cannot give medical advice here, but we can offer support and experience. All I can personally deduce from this is that your mum has had a NASAH (and that is not to say I'm right and is something you MUST ask her specialists) - which is rip/rupture/tear of an artery wall without the aneurysm. There is a section on this forum for NASAH and it might be worth you having a look around the posts in there to see if you can find any similarities to your mum - though I'm not sure we have had this sequence of events before. I'd make a list of questions in a notebook as you think of them and ask the Drs when you see them - also write down the answers they give. It'll act a good reference for you as I can imagine that a lot of what you're being told will either be baffling or won't be remembered - and that's perfectly normal given the stress that you will all be under at the moment. Please feel free to look around this forum for comfort or reassurance, and remember to look after yourself too. Take care, and fingers crossed that your mum recovers well xx
    6 points
  50. Great advice Chris. It stopped me being paranoid about it happening again and really helped me in my early days of recovery. Brian.
    6 points
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