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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
    8 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. 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
    6 points
  5. 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
  6. 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
    5 points
  7. Welcome to BTG Mon Although we are unable to give medical advice as we are not medically qualified we can support you in your recovery journey. Try to have a nap during the day which may help you sleep at night, fatigue is a well documented after effect of an SAH. Drink plenty of water to keep you well hydrated. If you feel able, take a short walk during the day. Apart from breaking the day up and you getting some fresh air, it may also help with your sleep and boredom. It is a long road to recovery for most, your brain has had an onslaught and needs time t
    5 points
  8. 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. First thing to say is you are not alone o
    5 points
  9. 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
  10. 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
  11. Hi Daffodil! This is GAM. Sorry for the late reply. I appreciate your sharing so much! I was really down this past week. The tinnitus started in the other ear on and off. I felt like I was relaxing more and doing my best to get better. Your post inspired me to be patient and to continue to take care of myself. I tried "turning off all competing noise and switching of devices. Try and have some complete silence." I felt more at peace. Many blessings to you!
    4 points
  12. Hi Monique, You'll get loads of good advice here from those much more experienced than me - only just over two years in for me - but I can fully empathise with the frustration of not being the 'old you'. It's hard to accept that things that were second nature now seem so difficult, but it does get easier, just takes a while. You might find it useful to search this site for stuff on mindfulness. I confess to be being a bit cynical about the touchy feely stuff initially but I've found that using some of the meditation techniques have helped me get thought the
    4 points
  13. 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 lov
    4 points
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. Hey Gam, just glad it was helpful. Try and give yourself that gift of space and silence each day if you can, even if it’s just 10 minutes 15 can help , genuinely your brain will thank you for it. As a society ‘busy’ is worn as a medal but your brain is always busy, doing all this unseen work and yours is healing and trying to adjust to the damage from the bleed. So giving it some ‘quiet’ time is a great way to allow it some time off from all the other processing. Even now as far out as I am in healing if I am in busy situations I have to step away and give my brain ti
    3 points
  21. Welcome. Please take time and read many threads here. You will find them very helpful. I know things are frustrating with the way the world is today but take one day at a time. Try breathing exercises, insight meditation, hydration, no noise for a period of time etc. Suggest these books Finding peace in frantic world and Loving kindness. Good luck to you.
    3 points
  22. Hi Monique, Welcome to BTG. We are glad you joined. You will find the most helpful and compassionate people here. I'm sorry to hear you are having a hard time. All you are feeling I (most of us) have gone through. Know that it is ok to feel that way. Your SAH is so recent. Mine happened in July and the first 1 was 10 years ago. Give your self some time to adjust. I too felt isolated and still sometimes do. Thankfully I have great friends who keep me company. Having 3 boys must keep you very busy. I have 1 boy and my husband who sometimes act like a child. ha
    3 points
  23. Try insight meditation. There is Imc uk there and ims barre in Massachusetts and Imc USA in Maryland if you are interested. Try a weekend after the covid. Now I can’t take off work and quarantine to go there so I do home virtual course. No tv, work, phone, music for a week or so. You sit as a group three times a day and there is checking with a teacher via zoom daily. There are two 30 mins sessions of lectures. I did that in oct and was very good for stress level and my brain. Very rested. I m doing that again in March. It is basically in breath, out breat
    3 points
  24. Daffodil, that is wonderful you are a trainer of mindfulness.. I think the most wonderful thing about it, is it gives me (or anyone) the ability to quiet and calm ourselves...my younger son is a mental health therapist and he is taking additional training to offer this to his clients, as he sees it as very helpful...
    3 points
  25. 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
    3 points
  26. 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
  27. 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
  28. 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
  29. 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
  30. Hi! I am almost 5 months post NASAH. The ringing sound had reduced after the first month. Then one weekend after much stress (worry about being forced to return to full time work, relationship conflict, etc. the sound was loud. I consulted with my neurologist and was given continued time off from work and reduced home conflict. The sound however, increased in December to an almost unbearable level. I went to the ER out of fear that something was happening again in my head...I waited 7 hours in the ER amid patients coming in with Covid-19. CT was clear. I began to s
    2 points
  31. Kerry Thanks for posting the results. I don't think this will be acceptable to the DVLA and in normal circumstances the licence will be revoked as there are too many 'unseen' spots close to the central field of vision. The 'spin' on your case is that the 'event' which caused the loss of vision allegedly happened more than 12 months ago. I say allegedly as I am not sure how definite the medical experts can be on when the event happened and whether DVLA start the 12 month timeline from the date they were informed (if a definitive date cannot be confirmed. I im
    2 points
  32. Thanks for all your input. That covid story really sounds difficult. Your Covid experience must have been just a terrible,terrible experience. And it makes you think how many people are going through that right now?? It's interesting you mention covid because when this "China Plague" (as Trump calls it, lol) , when this virus thing started, one of the first things that went thru my head was "dont go back to ICU!!" I've been very cautious to not catch it and it's out of my desire to not relive that experience again. The week on ICU when I had my initial bleed was the
    2 points
  33. Hello and many thanks for keeping on touch. The years pass by quickly and we (survivors and carers ) learn more about ourselves and how we deal with life post SAH. Great to hear how supportive your husband has been. His life and focus has also undergone much change. 😊 Keep enjoying the outdoors. A great way to bring positivity to a crazy world at the moment. Well done almost four years on. Subs
    2 points
  34. First let me apologise for this post. It isn’t a happy post, but I need somewhere to rant where people will understand. It’s been 4 1/2 years since my haemorrhage was coiled and I have been through various CBT and OT treatments, as well as a stint on the anti-depressant Sertraline (because apparently my fatigue was due to depression!!). I’m angry (and frustrated) because despite explaining to my family, employers and Doctors, they don’t truly understand the fatigue. They try and are understanding to some extent. I’m sure we all know what the fatigue is like
    2 points
  35. No apologies necessary! The changes can be upsetting and baffling at times. Doesn't it seem that the fatigue hits at a most inconvenient time! We're all able to relate.
    2 points
  36. 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
  37. I don’t think people should abandon their partners. But it has to with fate, luck, karma, people s attitudes, work related stress, support system etc. I hope that you will find the peace and happiness. Sometimes it is better to forgive and forget. Be safe and rest well. Stay away from alcohol and smoking.
    2 points
  38. When I had my SAH, I had told my partner I was going to the loo, then jump in the shower, nearly 7 years later and I still can't say that sentence out loud, I even have to stop myself from thinking about those to scenarios together, I get very panicked by it. When I first came out of hospital, my partner had to stand outside the bathroom door while i used the loo, i was terrified of that bathroom, i used to have a surge of panic everything I needed to go in it, especially if I was alone in the house, i was alone when my SAH happened, my partner was walking our dog at the time.
    2 points
  39. 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
  40. 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
  41. 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
  42. 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
  43. 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
    2 points
  44. 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
    2 points
  45. 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
  46. Hi Carolyn Some great advice from everyone, i can only agree with what everyone has said. Slow and steady is the way to go with this, your body and your brain have suffered great trauma and they really do need lots of time to recover, i am 6 years down the line and I remember spending much of my first 2 years sleeping and doing things at a very slow pace. I did try and push myself but I did suffer for doing that, i was given some excellent advice when I first joined BTG, that advice was to listen to your body and your brain, they will let you know whe
    2 points
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