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  1. 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
  2. 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
    7 points
  3. 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 th
    7 points
  4. Great advice above. I will only add that you should not expect to get better every day, but you should get better every year for a while. It is a rollercoaster ride of emotions and frustrations. However, I do believe that you will get better with time. I did but it took a while (like over a year) for my memory to start to improve again. Please be patient and stay well. Chris
    6 points
  5. 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 w
    6 points
  6. So understand this, dont see most of my family now, (that would be normal times without Covid) and using Covid as a guide since lock down in Mar2020 to date only Two have messaged me and asked how I/we are doing, also one of my cousin said I was Ignorant and rude... How rude (and forgetful to what I'd gone through) is she!!! so I now basically step back, dont need that stress in my life. Take care, stay-safe.
    5 points
  7. Hi there Don't worry about posting in the "wrong" place just now - we Moderators can move things where they need to be. Welcome to BTG and although we cannot give you medical advice, you will find a wealth of experience and sympathy here. Have a look around the forum and see if there's anything that you find of use or help to you. Right now you need to concentrate on you and try to look on the bright side of things as much as possible It's a long road to recovery but you can make as many pit stops along the way as you like. It's not a race and everyone r
    5 points
  8. Hello Phil, please don`t apologise for sharing how you are feeling. As has been said so many times, we are all here for each other, and getting support and help through the `down` moments is one of the main reasons this BTG site was formed. I was just revisiting your first post when you joined BTG in March 2017. You like many have been very fortunate to survive at all. I am sure you will agree that much of the great advice given by our members back then still applies to your situation today. Working in a high powered stressful environment and taking part in the
    4 points
  9. I'm sorry to read that people have felt abandoned by family and partners. I am only a few weeks out and my SAH was very minor (dr. said 3-6 months months recovery), but still need another angiogram. People seemed very upset and concerned (certainly my family), but I feel like the abandonment is about them and people sometimes don't have the depth to understand or take the time. Perhaps they are fearful themselves. I think people can be quite insensitive. Also, in the very beginning it's fresh and then people don't realize how we look fine but perhaps are struggling. Maybe it's so serious that
    4 points
  10. Hi frmertd, I can say I understand some of what you are saying, when i had my SAH in 2014, my partner was my rock at first, for the first few months, when I had my follow up appointment 6 months after SAH, things changed quite dramatically when we were told I should give myself at least a 2 year recovery window, even then it could take a lot longer than that. He actually said to me the doctor didn't mean it would literally take that long. Well I just said, we would just have to take each day as it came. My family especially my oldest sister was of the attitude, " Michel
    4 points
  11. I wasn't abandoned as such but was laughed at by my sister. She actually said " I'm glad it happened to you not me" Even though bridges have been partially mended over the years it still hurts a little and I will never forget her attitude. The worst thing was that the SAH left me disabled but life goes on and I make the most of it. Life is for living and enjoying which I do to the best of my ability. Yes it is a struggle at times but mainly when I set my mind to something I achieve it, maybe not perfectly as in the past but at least achieved. Knowing my limitations helps.
    4 points
  12. I do too. I remember exactly how it felt, exactly. Funny thing, I used to be addicted to smoking (God I hate cigarettes!!!). I tried everything to quit. I was vaping when this happened in my car. I then was in hospital 10 days and quit all smoking in the hospital. Every single time , I walk thru someone's cigarette smoke , or consider smoking, the whole aneurism event comes right back to me . No way will I ever smoke again.It took a brain aneurism to get me to quit smoking.
    4 points
  13. Hi, and thanks in advance for any thoughts. i suffered a very minor SAH a little over 2 weeks ago, after I was very stressed working towards my masters degree, and right after I hung up the phone with my father who had to go to the hospital and was being difficult and I was worried. I went to the hospital after that sudden, awful headache and pain in my neck. They saw a small bleed but after angiogram, MRI, CT scan, and 10 days in the hospital no aneurysm, source and it showed that it had "resolved." The ICU stay was traumatic and scary, waiting for a potential vasospasm which neve
    4 points
  14. Hi Deborah Happy New Year! Can’t say I’ll be sad to see 2020 gone. Like you, I also had a small bleed, actually 2 small bleeds and no aneurysm. I didn’t pass out, don’t remember having the thunderclap headache but I did have vasospasms afterwards. I live in BC Canada, and my stay in the hospital was 28 days. The meds I was on for 21 days was to stop any seizures from happening. During 25 of those days I was in a « quiet room ». Absolutely no stimuli. i wasn’t allowed to get out of bed for the first two weeks ( that was pleasant!). My experience sounds worse than
    4 points
  15. Hi Gam Glad you checked out ok. tinnitus when it comes on or ramps up is horrible and of course the more you notice it the more you notice it. It’s exhausting and we are fatigued enough. And there is the brain providing commentary ‘ what’s that’ ‘ what’s happening ‘ and of course the natural responses for the worry to creep up on us that something is wrong, that could it be another bleed, and then the fireworks really start going as this all spins together and can easily create the perfect anxiety storm. fist thing to say is you are not alone or the first ,(
    3 points
  16. Hi, The others advice really helped me. I am doing counseling via tel-med with a doctor who has worked with clients with brain bleeds. It is mostly helpful. I may try another doctor. I am almost 6 most post NASAH. I pushed myself back in month 3 because thought I should get ready to go back to work full-time. The ringing in my head increased in volume and doesn't stop...However, the greatest gift I experience is acting kinder and more accepting of myself and not setting goals...my body is the guide. I wish you well on your journey.
    3 points
  17. Welcome Selah! Yes, you came to the right place. The best place I would say. I am glad to hear you are recovering and adjusting well. 2020 really is challenging for most of us. Like you, I am for the most part is a positive person. Just remember that it is ok not to be ok sometimes. I always see that quote everywhere and having experienced a 2nd SAH it really rang true to me. Recovery can be an emotional roller coaster ride. Just remember, we are always here for you! Take care💗
    3 points
  18. Well done for reaching 7 years. Like you I was alone when it happened: driving home! It took quite some time before I could be driven along that road and then it was a bit of a white knuckle event. I have driven myself along there since although not alone and not in the same car. It seems we all live with the association of what we were doing at the time - brings it all back. Like you said though it does get a bit easier but never goes away. Take care x
    3 points
  19. Hi Selah Welcome to BTG as we call it, so sorry to hear that you suffered SAH, but you have found a great place for help, support and reassurance. We have all walked this road that you now find yourself on and we are all here to help you on your recovery journey. We cannot give medical advice as non of are qualified to do so, what we can share with you is our own experience of recovery, not forgetting of course that no two bleeds are the same, just as everyone's recovery is different. It can be quite a scary time at the beginning, not knowing if aches and pa
    3 points
  20. Hi Deborah, Welcome to BTG...Happy you were able to locate this site, took me a bit.. Like you I had a small bleed, no aneurysm found but I did end up with a severe vasospasm... I am happy you didn't have that as well... The mental shock of having a brain bleed...basically, I keep thinking I have bleeding in my brain took me time to absorb , I felt like I really couldn't believe it. It all took me time to wrap my head around that it had happened and then more time to realize I needed to be patient and let this heal... Coming home and trying to get back to normal fe
    3 points
  21. Hello Deborah and a warm welcome to BTG. So glad you were able to find the site so soon after you SAH. While we don't give medical advice you will receive much support from our members who have 'been there's and all have their individual experiences to tell. Reading their recovery journeys in the forums will give you much reassurance for your own recovery. All brain bleeds are quite unique and it is only in the weeks and months after that you discover the challenges you have to face. Some physical and some emotional. Andrea has explained so w
    3 points
  22. Jean that is kind of you. ( I don’t do colouring either !! ) So one of my things of finding ‘new’ version Daffodil post SAH was I decided to train as a Business Trainer of Mindfulness. Gosh it was hard on the brain, I wanted to see if I could do it , I did and qualified if that’s a thing and I now do it for self reward really but it’s a way of my practising using my work day...I offer sessions each week for colleagues and it means I get to take that pause too! 8 years on I still need that and actually I’m finding lockdown hard as everyone is back home in my work space and so the buzz is back
    2 points
  23. Hi Gam, I have some buzzing in my left ear, hearing was impaired at first but that came back...buzzing is tolerable for me, I am thankful...I am on board with Daff's words about mindfulness and breathing...I was not, haha, really not at all but did seek out a therapist who practiced with me and now I realize there is help within myself...I just sit quiet, no TV, and breath slow taking myself to something calming, enjoyable what your special place or thing is... I realize this is not everyone's thing..My daughter likes to color, seems like a big no to me but she loves it,
    2 points
  24. Hi Phil As Subs said, no need to apologise, its what we're all here for. Fatigue is a huge, and somewhat unknown, result of SAH - some suffer, some don't. Mine didn't really disappear or abate for about 5 years. I was back at work really quite soon and two years on was working from 9am to 6pm - it was horrendous. I'd come home and fall asleep for an hour and then still sleep for 8 hours a night. I can honestly say that it took a good 5 to 6 years for it to calm down. I now work in a very busy school office from 8am to 4pm and the mental energy is still draining, bu
    2 points
  25. This topic is me to a T. Wow, it's about time I heard more about this. This is the kind of thing you get here and nowhere else. My doc said what they call this is "need for cognitive rest". You need cognitive rest. I put headphones on when people are blabbermouthing and it annoys me trivial conversations when I'm trying to concentrate. Some people think I'm probably a jerk, but they don't understand what I'm doing.
    2 points
  26. Hi Saleh, We are here for you.... xx Jean
    2 points
  27. Hi Seleh, So happy you found us...This is a wonderful resource, wonderful people trying to help others who have had bleeds. You are so on top of this already reaching out and working to understand everything. The advice above is wonderful...resting, hydrating and taking it easy...your brain needs time. This is not like any other injury or sickness, your brain is your computer, taking in and trying to make sense of it all. I personally still have head pains on occasion, it scared me at first also. I am not fearful of it now and just take it as part of my
    2 points
  28. I have been reading and see I should have made this first post in another forum. so sorry!! I will learn...and I have read my headache is something many experience. OK. Thanks. I am so glad to have found this place. Looking forward to learning.
    2 points
  29. Very sound advice. I think it's a very good point to stress that it doesn't matter how small the bleed is, there is always some residual impact - whether it's physical, emotional or both. I'd love to say everything was back to where I was before my bleed but, amongst other things, my perspective on life has changed and for me I've balanced how I live and manage stress etc. (i.e. no more 30+ flights a year!). PS Pat - I've maybe said this before but I grew up desperate to go to BC. My gran's brother emigrated out there and we got sent "Beautiful British Columbia" magazine every qua
    2 points
  30. Hi Ann, Haha - these gong shows are becoming a common theme! On a more serious note, I hope all goes well on 5th and you're not waiting too long to get the results and hopefully some reassurance from those involved in your care. As you know I'll be having be having my MRI the week after you and whilst they are primarily looking at this davf they've found, they will also be checking on my two aneurysms. It's going to be an anxious time waiting to hear what they have to say and what they might propose to do. I'm trying to be brave about it all, but if the
    2 points
  31. Hi there warm welcome to the site, so glad that you found us. take things slow and easy and know your not alone. wishing you well, my only advice as being down this road long time now, take it easy, when you feel tired dont fight it, keep yourself well hydrated... take care, stay-safe.
    2 points
  32. Hello again, I am so grateful for all the supportive words that I received after my husband's stroke on the 3rd January this year. He has now had another stroke, this time affecting his left side. He cannot walk and is having physio. He has been in hospital since 12th December. I have been allowed to visit him yesterday and today as it is Christmas eve and Christmas day. This is normally not allowed because of the fear of spreading the coronavirus. I felt sad to see him in his weakened state. I think he will be transferred to a place nearer to our home where there is a rehabilitati
    2 points
  33. Jean, I agree and the best piece of advice that I was given, was to measure your progress from the day that you left hospital ... rather than before the bleed, otherwise you set yourself up to fail ... which was what I was doing for quite some time....failing and feeling utterly miserable and despondent with it. Hence why this website exists, through my own failing and falling flat... and having to come to terms with the fact that I was going to have to take baby steps forward and maybe a few steps back with it. I found that once I became a bit kinder to myself and measured my expe
    2 points
  34. Hi there ditto the replies really, keep hydrated, great to hear you spoke to someone from Headway support sometimes just talking to someone helps massivly. dont be fobbed off yes covid makes it harder but you need answers push for help - I didnt and suffered for that...
    2 points
  35. Hi Carolyn, The thing I found different to deal with was that this is unlike any sickness or injury I had ever experienced....I couldn't gage my improvements as they didn't seem to go in a straight line...I found looking back, say over several months and then a year, was my best gage. Carolyn, I also had to start looking at where I was presently as opposed to looking back to where I was before the event. I didn't like doing it and resisted..Today, will be 4 years in the spring, I still hit a wall on occasion but I know it is coming. I know when I have gone beyond. I pace
    2 points
  36. Hi Carolyn, What you're experiencing and feeling is pretty normal post SAH. 5 months post NASAH is so very early in recovery terms ... your brain and body is still recovering from the bleed and you're having to come to terms with the anxiety and panic feelings too. Is it going to happen again? - It's a question and something that we've all felt and it takes quite a bit of time to restore your confidence. I know how you feel and everybody else on this site will know too! Are you pacing yourself with your activity? We've all done it, when we've gon
    2 points
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