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  1. Yesterday
  2. Melissa

    Hello Melissa, great to hear from you and thanks for sharing your thoughts with us. You certainly are in the company of many members who have experienced a bleed without the medics finding the source of the bleed, and you are not alone in being so fearful of another bleed. Instances are very few on BTG and you are right in saying that over time you will find yourself accepting this and being less fearful. This link will give you immediate access to the NASAH Forum http://web.behindthegray.net/forum/16-non-aneurysm-sah-or-perimesencephalic-sah/ and this link will enable you to find this forum http://web.behindthegray.net/topic/6062-melissa/?tab=comments#comment-124679 Please continue to keep us informed as you recover, and in particular make a comment on the SAH/Stroke Anniversaries form when you reach 2 years. Best wishes Subs
  3. Pat 11-4-16 Subarachnoid Hemorrhage

    That's the spirit Pat, When I get short term memory loss my Hubby and Daughter laugh, but now Tut a sure sign I am getting better. xxxx We will both get there and when down just come into Green room and have a chat with others, so many have had bleeds etc. We are like a Family who when our own get fed up we can share a problem with each other. You take care of yourself xxxx Nice typing to you lol xxx
  4. Melissa

    Oh WOW Thank you so much .....it has taken me some time to find these replies and I am so happy that I did. I am coming up on year 2 after my bleed and life is still different and for the most part I'm ok with that. I am Thankful to be a live and Thankful to be improving as time goes on. I still have headaches some bad and some not so bad. Since the bleed I have been back to the ER twice scared that I was having another one to find out that it was just a migraine that I could not get under control. I am truly hoping as time goes on the fear will continue to get less and less. However some nights when my head hurts I am afraid to go to sleep because I'm scared I will not wake up. After reading these post I do feel better because this is the first time anyone had said they had one without surgery too. So THANK YOU again Melissa
  5. Pat 11-4-16 Subarachnoid Hemorrhage

    Winb143 Thank you, I will try the warm salt water I have good days like you said where I am full if energy some days i can barely move I realize I will never be who I was but that is ok I am alive. I only had the once Seizure so far have not had another one its hard to get used to the medicine and that was February 4th. I agree we are in for a long haul but we will get there Stay Happy and laugh alway Best wishes to you Pat
  6. Pat 11-4-16 Subarachnoid Hemorrhage

    Thank you Melissa I occasionally get small headaches and some shooting pain every once in a while in the area, the hardest thing for me is I feel like I am in a fog some days are better then others and becoming very forgetful I am s o happy for you that you did not need a clip or a shunt. I hope different medicine can help your headaches that is wonderful that your bleed sealed itself. I WISH YOU ALL THE BEST
  7. Pat 11-4-16 Subarachnoid Hemorrhage

    Hey Pat, Sorry it took so long for me to reply but for some reason I just saw this. Yes we are blessed !!! I was fortune even that my bleed sealed itself off so I do not know what its like to have a shunt, however I still have shooting pains in the area of the bleed and the doctor tells me that it is normal. I had my in 2016 and was able to go back to work 11 months later. I have be able to remember most of my past but not all and I do not remember 5 day of the 14 day hospital stay. I have headaches on a daily bases now some days are worse than others. Just pray that the headaches will get better with time and different meds. I truly wish I could find more research on the subarachnoid hemorrhage without a clip or shunt. Wishing you all the best , Melissa
  8. Last week
  9. Untreated anuerysm

    Yes I never knew I had another one until I went for an MRI for Epilepsy and it had bled and healed itself over that is what my Specialist said and he wrote in caps. No need to worry which of course I did lol. But if I had known about it I would have worried, but when they are small like mine was it was a small bleed so now I am not so stressed out. As stress is not good for us (she repeats herself) ha ha xx Be well all and remember to sing and laugh xxx Best meds out there xxxx
  10. Pat 11-4-16 Subarachnoid Hemorrhage

    Hi Pat I have a sister named Patricia alias Patsy xx I used to get itchy head after my shunt woke me up so I decided to bathe it in warm salt water as my Mum used to swear by it. It does go but if it worries you see Doc. Sounds like you have done so well, I was told I'd never walk again but 250 yards then back aches on a good day!! I have had Epilepsy since puberty but noticed they had got stronger after SAH so Specialist upped pills and been seizure free since new pills in Feb. Touch wood !! Horrible things xx We are in it for the long haul but you will get there and some days you might feel so tired and another day you can take on the world. Then pay for it the following Day xx Keep happy and stress free as we are survivors and welcome to BTG and others might tell you to drink water listen to them xx Do not listen to others problems just be happy and think about the times you have laughed so much, it really helps. Wishing you all the best and Welcome to BTG xxxx Now a smile please xx
  11. Quadrantanopia

    Hey Kels! Lovely to see you back here! Tell the lovely ladies and gents what happened this year for you? Your experiences have helped me believe that anything was possible. Golly! I sound like the introduction to a Disney movie! JM
  12. Quadrantanopia

    At last I’ve got in. I have been having trouble logging in. Thankyou Johnnie for the wonderful words they are hugely appreciated. I have been thinking about this for a while and I would love to be able to help newbies going through the same situation as we have. It’s three years this Sunday since that horrific day and this year I really feel like I’ve achieved something amazing. Johnnie if you have any ideas how we could help people I would love to be involved. So show people they are not alone and to never give up 😊 kels.
  13. Pat 11-4-16 Subarachnoid Hemorrhage

    Hello My name is Pat I had a Subarachnoid Hemorrhage on 11-4-16 I was at work and collapsed and my heart stopped. Thank God for my co-worker who got my heart started again. I do not remember anything except waking up alive in the hospital and asking my family what happened to me. I remember nothing, I was only in the hospital a short time, I was transferred to rehab for therapy, i was very blessed. My Son was getting married on New Years eve and I pushed myself to walk again, With my son holding on to me, I was able to slow dance with him. So I did not miss his wedding. I am truly blessed I have a Grandson who was my rock. I knew I had to get better for him. Its been almost two years in November 2018, I am back to work . I didn't remember everything at first but my co-workers were wonderful. I still forget things and sometimes have these weird feelings like spiders crawling in my hair and also very tired. All I can say is Thank God for my family and friends. A year later I had a Focal Seizure and now on medicine that was three months ago. Does any one else have these funny feelings in your head or had a seizure. I know your body does not want this shunt, its what i have in my head. My life is mostly back to normal, except for being exhausted a lot. I get up and go to work so that is a plus. WE ARE ALL SO BLESSED.
  14. Quadrantanopia

    Thanks Tina. Very early May now as I have managed to bag a cancelled spot. DVLA were also very nice about the delay that occurred in the review of my case and have promised that they will make sure the matter is dealt with quickly once the driving assessors have submitted their report. It is certainly a long road to get the licence back but now I am back behind the wheel I am relishing being the chauffeur to my wife again. She loves it too! I shall be back to let you all know if my full licence gets approved. There is plenty of proof here that it is possible to get the licence back. There should be a separate section in the main menu to enable people to get advice on this. I had a contact here who has been truly marvellous (I speak of you Kelly!) and so supportive. She has profoundly reinforced my own view that I would get my licence back. She has been a little angel. And Hoofbeat was a great source of information too. We can all help newbies if there is a central place for them to post their concerns and queries. What about it then? Happy to assist! JM
  15. My story up to now - Maria

    Maria, just be aware that all our thoughts are with you and we wish you all the very best on your journey and hope that you get as much as you can from it. Macca
  16. My story up to now - Maria

    Thanks Tina for your wishes, warms a heart that needs a lot of that Maria xx
  17. My story up to now - Maria

    Thanks for the detailed answer Macca, it looks like you read my mind (not sure if that's good 😁) I was counting on checking with his family (I'm staying at a hotel but I'm always asking for updates and I have made sure they know when I'll be there and my hope to make it count). I'll be honest and won't say I'm not overthinking because I am and have been these last days, but don't worry because I have no hopes on the outcome. I have got myself used not to expect anything good after this year, and keep writing some words to Paul every day (5 notebooks already and counting) telling him how he was on our call and how I feel, pointing out those little things like when he says my name,or how he is himself.. Yes your words always help, one way or another, so thanks again, I'll update when I get back Maria x
  18. My story up to now - Maria

    Thanks for your wishes Louise, What I meant (with my English being not my first or second language, thanks for the patience there) is that he has been in a center for more than half a year, not being aware of where he is, just making up the answer every day when I call (usually he is working, sometimes at a wedding..) so he doesn't have a phone, nor his money, his case, his home.. That's why I asked now I'm able to visit him again Maria x
  19. My story up to now - Maria

    Maria thoughts are with you and hope your visit goes well with Paul, take care xx
  20. My story up to now - Maria

    Maria I hope you have a lovely time visiting with Paul don't try to guess your responses just let things happen... I'm not quite sure about the don't belong to his life now. Let us know how things went take care honey.
  21. My story up to now - Maria

    Hi Maria, Thanks for the update. This must be tough for you. What I would say is judge for yourself when you get there, but before you see him, speak to his family and get their opinions face to face. No matter what you have said by email, Skype or whatever, it's never as good as face to face, when you can judge the atmosphere, watch the body language and so on. Compare what they say with the situation you find yourself in when you finally get to see him. I think you have to play it all by ear. It will be a tough experience for you but it may also be uplifting if you see progress that others haven't. Nobody ever said his or your journey would be easy. Recovery is a long and winding road and everyone goes at their own pace some a lot slower than others, unfortunately. Don't build up any false hopes, as that will set you up for a fall if reality doesn't meet your expectations. So deal with what you see, hear and feel. Speak to doctors if you can for their opinions and speak to family and carers, so you have as full a picture as possible. Then sit down and analyse for yourself, if you can, to make sense of it all. If you can't do it by yourself then sit down with someone you know and trust and talk it over. Lastly, try not to over think things before you go - that is just torturing yourself. What you have to deal with is what is - not what might be, so get the facts first and then put all the red herrings to one side and deal with what is left. Only you can make those calls Maria but you have to do it with a clear head and by offloading as much emotional feelings as you can. I don't mean to sound uncaring there, I just mean in order to do the best you can both for him and yourself by making the right decisions. Good luck and please come back to us. I hope this helps.
  22. My story up to now - Maria

    Hi all, It's been a while since I last posted but there haven't been changes in Paul's situation, or at least noticeable ones that could bring any hope now that's been one year since he had his hemorrhage. He's been out of the wheel chair for some time now but as I haven't seen him (though keep calling every day) not sure how mobile he is. I'm writing this because this Friday I'm flying to the US to spend a few days with Paul (well, at a hotel close to his center) and his family told me that they would try to help me take him out of the center some time during the 6 days I'll be there (don't know the details yet). So I keep thinking what would you recommend to be my response when he asks for the things in our life that don't belong to his life now, like when he says he can't find his phone, or when he comments about something that doesn't have any relation with now, or me, .. Do I try to make some correction? Is it worth for any kind of recovery? It's easier to deal with this situations on a phone call (upsetting as they are anyway), but I would like to make my stay count, even if it's only a bit, because I'm doing this for him, and because I miss him every day.. Maria x
  23. Feeling rough again

    I slept through my Hydrocephalus for quite a while xx It didn't get any better and I remember nothing, too busy sleeping and the Surgeon said I needed a shunt. My husband didn't want me to have another op and he nearly called it off but Surgeon rang him and said "If it was my wife I'd go ahead with it" So I went in on the Thursday had op on Friday and awoke Saturday morning and finally knew where I was. I'm told I sang to Nurse !! If you can keep awake and not drift off into cuckoo land as I did then it might clear up but ask Doc xx Good luck
  24. Hi Darcy, I understand it might be hard for you to be in a catch 22 situation. Sometimes in medicine it is risk vs the benefits. You should ask the docs what s the cause of the clots. Take care and I ll pray for you both.
  25. Quadrantanopia

    Great news Johnnie wishing you all the best for your assessment in May or hopefully earlier
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