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Showing most liked content since 25/08/17 in all areas

  1. 10 points
    Hi, Today (9th September), is two years since my Perimesencephalic Brain Haemorrhage and I just wanted to say "Thank You" for this forum. Here was the place where I could read of others who had gone through the same trauma as myself. I saw I was not the only one who couldn't juggle everyday life, using credit cards, driving far, having odd headaches at various times and also having melt downs for no particular reason. To speak to my Consultant, my issues were not worrying, my GP asked me about what it was I had and how it happened. I felt out on a limb. Luckily I could drop in now and then to BTG and feel comfort in your responses and having the knowledge that this was all par for the course. Two years down the road I see great changes, I can see my progress, but I also know it was fairly slow. I can trace back to days when I would be in a supermarket and my husband could tell that all the noise about me and the decision making on what to buy was just too much and he would escort me to the car. He would watch me as I would begin to try and process using a debit card again. He would travel beside me in the car to make sure I felt confident and had the concentration driving again. (I am still not driving longer than an hour and a half on my own). I had to tell people I was slow to respond as my brain was taking a little bit longer to register things, and people were very accommodating. Headaches would come and still do, but I can cope. (In fact a physiotherapist has been correcting my neck and shoulder in the hopes of correcting my off centre neck and drooping shoulder which could be causing some of the pain at the back of the head. The neurosurgeon said some could be due to neck problems, but no suggestion of getting that sorted, I got my own physiotherapist). Even though two years has past and I still have a few issues I think I am back to what my consultant had said he would expect, 95% back to normal and am I grateful. I still need to have MRI scans so the neuro-radiologist can monitor a small area for no changes, something they feel has been there from birth but must just watch over a period of time. To all of you going through early stages, keep up the good work, don't stress, rest and recover at your own speed and your bodies ability. Continue checking in to this great forum to relieve yourself of any of your own worries. Also check with your doctor if you have medical problems but for the support and for the help from those who have gone through a similar situation this is the place to be. Two years ago at this time I was in A&E waiting to be be taken by Ambulance (Blue Light), to James Cook Hospital and all I could think of when the doctor told me I had suffered a brain haemorrhage was what was the future going to hold for me. I have to say the future was a blessing and that includes me finding Behind the Gray, with that I have had hope and encouragement. Thanks to you all, Irene
  2. 5 points
    Thank you so much for your positive words of support. It feels great to be able to talk to others to totally understand what you're going through
  3. 5 points
    Want to thank you all so much for your replies, they have definitely helped put my mind at ease. Guessing it's not too nice having to go back to these memories, so I really appreciate it Hoping everyone is doing well now and wish a good recovery for anybody still affected. Thank you guys, maeve xx
  4. 5 points
    Hi Maeve, I'm really sorry to hear that you lost your Mum when she was so young and you naturally have these unanswered questions going round your head. It's perhaps equally impossible for us survivors of subarachnoid haemorrhages to know the answers to your questions, but my personal opinion is that your Mum probably didn't suffer and would have passed away peacefully - I base this on the fact that as she was in bed, she was probably asleep up to the bleed starting and as it was a severe bleed, I imagine she would have lost consciousness quite quickly and therefore felt no pain. Whilst a lot of people experience a thunderclap headache immediately, I didn't when I had mine. My peripheral vision closed in to the point that I thought I was going to pass out and die and remember thinking afterwards how quick and painless that would have been. Please don't feel guilty for not being there - my daughter was there when I nearly passed out and had mine been as severe a bleed as your Mums, she would not have been able to do anything to help. I'm not sure if your Mum's bleed was from a ruptured aneurysm or whether you even know, but the chances are that if she did have an aneurysm that she was unaware of, then it's quite likely that she was born with the weakness on the blood vessel which over the years turned into an aneurysm by the general pressure of blood. I was 46 when mine ruptured and bled - I had no warning at all although I was under a lot of stress at the time and have always believed that the stress caused my blood pressure to rise, causing it to rupture. On the other hand, due to fact that my aneurysm was there anyway, it was quite likely that it could have ruptured at any point in time, with or without stress at the time. Every subarachnoid haemorrhage is unique and sadly many are not as fortunate as us to survive the initial bleed. I do hope that my post has helped a little bit and not led to more questions or distress for you -that would not be my intention. I really understand how upsetting it is to lose someone close, having myself lost 4 family members since my sah, Wishing you and your sister a happy future, Sarah
  5. 5 points
    Thanks for the lovely comments. Just didn't want the day to go past without acknowledging here that I managed because of responses on this site. Irene x
  6. 5 points
    Well done Irene, you should be proud of yourself. Well said and 10 out of 10 for your attitude. best wishes Graham
  7. 5 points
    Thanks so much to everyone for the warm welcome and encouragement and much-needed support. I'm definitely going to continue to seek answers... and sing and smile, possibly through gritted teeth at times. Hugs to you all! Kristi
  8. 5 points
    So, I had my nasah in May. Returned to work 1/2 time 2 weeks ago. Today I started back full time. Very tired. But, I kept the words of many of you with me. Drank water. Took a walk. Closed my office door and did a 20 minute relaxation cd. Looked at my calendar to see what I could it back on. Made plans to do some work from home. So glad to know you are all here. Not sure some of my health care providers "get it". But you all do. Thanks so much. Vermont girl.
  9. 4 points
    Hi Maeve Can only echo what others have said. I didn't feel mine until I came round after passing out. Had that been it, then yes, completely painless and that's how I'd want to go. Mine was caused by an aneurysm but no stress as I was on holiday at the time so I was completely relaxed. Please do not blame yourself and be plagued by "what ifs" and "If only"s. Statistics show that roughly 8,500 people a year in the UK have an SAH - less than 1% survive - it has an extremely high mortality rate which, unfortunately, is why so little is known about it. Is there any bereavement counselling that you and you sister could get access to?? Counselling helped me after my SAH so I think it would do you both the world of good. But please, as the others have said, do not carry around unnecessary guilt - none of this was your fault. Take care of yourselves xx
  10. 4 points
    Lovely post Irene and this is my safe Haven still xxxx Hope you go from strength to strength xxxx Keep in touch Win xxxxxxxxxxx
  11. 4 points
    A lovely written post Irene and I'm pleased you are feeling more positive about the future than you were 2 years ago. You have done very well with your progress and you should be proud of yourself. Behind the Gray is certainly a great aid to recovery to those us who have had the misfortune of a brain haemorrhage. Wishing you well for the next two years and beyond, Sarah
  12. 4 points
    Hi Linda... I too had a NASAH and was 12 days in the hospital. I had no neurological deficits thankfully and was left with the question of why as well. I am a 42 year old mother of 2 and I was simply running on a treadmill when it happened. I do not have high blood pressure but have Rhumatoid Arthritis and a Platelet Disorder. I too, like everyone else have no real answers on why it happened but have found comfort in this site. I'm sad and sorry of what everyone has been through but am grateful that I have support from people that understand. Recovery is/was difficult for me. My 2 boys and myself lived at my parents for 2 months so they could care for us but 4 months out and I've been living back at my house with them on my own and even started working a little. I guess everyone is different but for me I turned to meditation and acupuncture and some alternatives sources to help calm anxiety, headaches and my RA pain and it's working for me. I wish you well in your recovery. The people on this site are so great!! I live is Connecticut in the USA so compassion and understanding has no borders:-)
  13. 4 points
    Same boat! I had mine in May as well and pushed myself out slowly but surely. I'm a realtor so showing homes is easy! I keep water and Gatorade with me and my phone always charged. The more I get out the easier it becomes. I also have done a bunch of different alternatives to try and heal myself which is working for me. Proud of you Vermont girl!!! I know exactly how you feel as I think we had similar situations. Keep positive and celebrate the little things:-)
  14. 4 points
    I also had a NASAH almost 2 years ago. Just and EVD, no surgery. I was told the chances of it happening again were no greater than it happening the first time. Slowly, my anxiety over it happening again has subsided. Now I think of it this way, before it happened, I had a weakness that I did not know about waiting to happen. Now I have survived that and the weakness did it's best and is gone. So I am now stronger than before. So I chose not to live in fear. I am different, but here. Should it happen again, I will fight it again, but I don't fear it. I hope this helps. With time comes confidence and peace for you I hope. Chris
  15. 3 points
    Hi Mandie So sorry you are feeling this way. I think a lot us go through times when we feel so very low, tearful and grieve how we have changed or been affected. Sending you a huge hug and lots of love xx Try to concentrate on how well you have done and all the positive things, easy to say i know ! Try doing something that you enjoy and makes you feel happy. You never need to apologise for being negative, as i said, we have, at some point all been there and can totally empathise and understand where you are coming from.. If things don't improve and you cant get out of that rut like you have before, maybe go to see your GP for some help. I tried counselling and it really helped to talk to someone not family or friends. Others tried antidepressants that also really helped. We are always here for you Mandie. Hope today a better one for you xx Take care Love Tina xx
  16. 3 points
    Hi Maeve I'd just like to echo all that the others have said before me. I suspect it is highly unlikely your mum even knew about the bleed and would have passed quite peacefully in her sleep. When I had mine after being taken to hosptial and scanned whilst waiting to be transferred to the Neuro unit I fell into a coma and felt nothing. I often think if I had not survived then I would not have know anything about it - just not woken up. Stress is often blamed as a reason and although I had a fairly stressful life, I was out running while it happened, something that always helped my stress levels, so who knows. I Hope you and your sister can come to terms with your loss, it must be so hard and I hope we here on BTG have answered some of your questions. Clare xx
  17. 3 points
    Hey Kathie Welcome to BTG, glad you have found us. I too had a NASAH back in Feb 2015 together with Hydrocephalus. I went back to work on a phased return after 3-4 months though to start it was for 2 hours a day and the increase in hours was slow. Pre SAH I worked 41 hours a week in a very stressful environment. I have never been able to go back to that. I eventually settled for 4 long days with Wednesdays off in the middle. However due to other problems at work including stress I eventually changed jobs. I then reduced to 34 hours over 4 days (still having Weds off) in a less stressful job and was happy for a while. Unfortunately due to poor management and staff shortages that job also became very stressful and I had a major meltdown resulting in me being signed off sick. I have just started in another new role, less hours, only 30 per week now and still with Wednesdays off. It's early days but so far so good - and I love the hours All the symptoms you mention are fairly par for the course post SAH, especially when tired. I still suffer now and have had to adjust how I do things. It is a case of finding a new normal and you will eventually find that. What do you do as a job? 12 hour shifts seem very punishing, how many days do you do them for? It is worth having a sit down talk with your employer and seeing how they can help you get back to working. Don't let them push you and if you have an Occupational Health dept make sure they are involved too. You may be physically fit enough to go back to work but emotionally is a different matter. A SAH is a life changing event that cannot be ignored and you cannot push too hard as it will trun back and bite you! Take care and let us know how you get on. Clare xx
  18. 3 points
    Hi Rich, l had my SAH in 2012. I also have dizziness blurred vision and at times my brain goes into lock down , i.e. I can't remember what the next thing l was going to do! Sounds ridiculous, but then othertimes l am reasonably. normal. I definitely think it is associated with tiredness and stress. It gets better but does not seem to go away. l find it very difficult to relax, l always seem to have too much to do. I was told at the hospital today, that l must slow up if l wanted to keep well. Don't push yourself SAH seem to happen to very active people and that l makes it hard. Good luck it's a long haul, but there is light at the end of the tunnel. It has been very hard for me to try to change my life style, but one just has to adjust best wishes Jill
  19. 3 points
    Hello Irene... also many thanks for your update 2 years post SAH. Well done and we appreciate your kind comments about how you have valued the support of BTG and it`s members in your recovery. Well done also to your husband. It is clear that he played an important role in these early days being sensitive to the support you needed along the way. Hope he is fine too. So glad to hear how well you have recovered. Subs
  20. 3 points
    Hi, I was late to see this to share but the Brain and Spine Organisation are running another event this year for careers and survivors in London on 16th September 2017 on "life after SAH" May be useful ful for anyone who might be able to make it. I was treated at The National and credit a huge part of my recovery to date to the support and access to care they have given me ever since and their staff are supporting this initiative, https://www.eventbrite.co.uk/e/life-after-sah-a-half-day-workshop-for-patients-and-carers-tickets-35930683642?aff=erelexpmlt is the link for the event to register of know more.
  21. 3 points
    Hi Linda, Welcome to BTG! yes we are British but pain and suffering has no barriers - neither does caring and compassion as is described so eloquently above by Kris. I had the dreaded thunderclap headache 7 years ago today and I'm still here, so that should be some encouragement for you. I am now 62 years old! My job was very stressful and I went back to work after 6 months. I decided that I'd had enough three years later and took early retirement - best decision I ever made! As you're in Oz, don't worry if answers take a little time to appear - the time differences are enormous between here and you and the USA. Headaches are common after SAH but none of them are ever as bad as the 'thunderclap' one. Seek professional help if you are worried but congratulations - you are a survivor! Look at your glass as half full, not half empty. Look for the new opportunities that open for you, not behind to the ones that have closed. Life will be what you make of it. Yes, you've taken a punch, but get up from the floor and punch back! - when you're ready to, that is! Welcome aboard! Macca
  22. 3 points
    Welcome tobtg linda i had my sah in January this year and all the people on here have heled me loads they are my second family i wish you well in your recovery xx