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  1. Yesterday
  2. CharlieD

    Five and a half months!

    CharlieD replied to CharlieD's topic in Non-Aneurysm SAH or Perimesencephalic SAH

    Thanks Clare and Sami. That is really good to know that you had substantial recovery after this stage. I know it does not mean I or anyone else will recover at the same time but hopefully means I still have a lot of recovery to go and therefore a lot of improvement. Sami I am glad you specifically mention your headaches and anxiety improved. I actually read some of your earlier posts after your reply. You mentioned waking every day with the feeling in the pit of your stomach and the head pain, sounds like that has gone for you. Hopefully they will for me too. It also made me stumble across some other posts which mention some of the weird head stuff I have which again is reassuring not be the first to not know what the hell is happening in my head! Clare I too am phasing back to work and at the moment it takes all my energy to do that. I do like my job but I think I will find out over the next 6 months as I do more if it is realistic for me. Luckily I was part time anyway so I hope so, I really like it but I will put my health first. I am glad you found what worked for you. This is such a great site, thankfully I found it early on in my recovery and I think it makes a real difference when there is so little knowledge out there about SAH's unless you are talking to specialists. I rest quite a lot still and will make sure I drink plenty.
  3. Vicky.W started following Amyloid angiopathy
  4. Vicky.W
    Hello, I'm new. Had 2 NASAH a month ago. No neuro signs but just left with headaches, fatigue, depression and major anxiety. I was in hospital 5 days then sent home with no follow-up, no advice, no prognosis. They just said the neurologists would contact my GP when they had studied scans. My GP called me a few days ago and read thr letter he had received. They are almost certain the bleeds were caused by a condition called Amyloid Angiopathy. I looked it up and it is a degenerative progressive brain condition for which there is no treatment. That was communicated to me in a four minute phone call. Needless to say I am devastated and terrified. I've Googled it far too much and there is a Facebook Group for it but that's even worse that reading Dr Google. Has anyone else been informed that this could be cause if their NASAH.
  5. ClareM
    Hi Charlie I echo what Skippy says everyone is different. At five months I was mid phasing back to work and struggling with the hours I had to do. By a year I realised I was never going to be able to my old job so changed and reduced my hours. Since then I have changed jobs again due to stress and I can now - at 3 and half years out feel I am settling. I still get days when my head feels like cotton wool and am usually floored by Fridays but it's mainly a matter of coming to terms with the new normal and what is best for you. Unfortunately the isn't a one size fits all so it's seeing what works for you and you will make mistakes and feel the consequences. Just try and be kind to yourself and take it slow. And when you do realise that you have done too much take that on board and adjust how you do things in the future. You'll get there eventually, we all do it just takes time and patience. Good luck and keep us posted on your recovery. Clare xx
  6. Skippy
    Hey Charlie One thing I learned very early on was not to set my stock by everyone else's stall i.e. just because your friend's baby was walking by one doesn't mean that yours is better or worse if they started before or after one. At five and half months I was a complete wreck. I had headaches every day, couldn't be left alone as I was too anxious and was having counselling. I hit the 1 year mark and it was as if a switch had been flicked. I stopped needed sleep during the day, I had more energy, the headaches had all but gone etc. We are all different and will recover at different rates. Key here is to listen to your body and make sure you stay hydrated. 12 years on and I work full time (37 hours a week) in a busy school office with half an hour break. Don't get me wrong, I come home some days with a headache or shattered but no where near as bad as I was 10 years ago say. I still notice improvements now and for me its because I'm keeping my brain active. At your stage is recovery I couldn't read a book because I'd forget where I got to the day before, so I started reading magazines and doing crosswords and word searches - it keeps the brain ticking but you're not exerting yourself physically. Do little things that work best for you - if you need to sleep, then sleep; if you want to walk, then walk. Baby steps can lead to huge leaps, you are in control of this, it's just figuring out the best "this" for you.
  7. Winb143
    I found Jill Bolte Taylors book good and at the same time she bought humour into it. My Stroke of insight is about Jill who had a stroke and I saw her on Oprah's show and she could laugh about it. Like one day we will. It gave me hope as here is a woman and she cannot remember her Mum G G and her Mum cuddled her as it was all she could do and Jill says "So this is a G G, I like G G's" (my words)
  8. Ruth Ruth joined the community
  9. Daffodil
    I think once I could get my brain to stay still for a bit post bleed I started to become more and more curious about what had happened to me and what life might now look like. When I got on line, (which was a fair few months afterwards) I scanned and read the statistics. About 40% of all people who have a ruptured brain aneurysm will die as a result 4 out of 7 people who recover from a ruptured brain aneurysm will have disabilities Brain aneurysms are most prevalent in people ages 35 – 60, but can occur in children as well Women, more than men, suffer from brain aneurysms at a ratio of 3:2 Ruptured brain aneurysms account for 3 – 5% of all new strokes (2012 Brain Aneurysm Foundation) The facts scared me. Too harsh, too disconnected to my experience so then I looked for stories from people who had been through this. I didn't find BTG and you lovely lot until much later after I had my shunt placed but I did read a book @Rebooting my brain' documenting personal experiences of SAH as part of my attempt to learn more about what happened to me and I took great comfort from this shared experience in them even if at the time it took a huge effort to read it and it was not always a comfortable read. So woke up this morning and I wondered if having a thread where we can share book recommendations might be useful to members so I am posting this as a starter of the three books I recommend.
  10. Djf Djf joined the community
  11. Samantha Jane Caine Samantha Jane Caine changed their profile photo
  12. BluePearl BluePearl joined the community
  13. Last week
  14. Goomi Goomi changed their profile photo
  15. CharlieD
    Hi everyone, So I am 5 and a half months in to my recovery and still feel there is such a long way to go. I still have very strange episodes with sudden head pain and I tell friends I feel like a my brain is a constant snow globe, feeling shook up. Obviously there is the fear which I know you all know well. I just wanted to see what stage other people were at this point? Did you have a lot of recovery to do? I do worry I have recovered the amount I am going to and the rest will just be little bits. I would really like to hear other people's experience. I know people mention the headaches on here but I wonder at the times in between headaches do you have a clear head and if so was it clear at 5 and half months? I know there is no set time on anything and we are all different but I see there are often similarities on here. Thanks everyone.
  16. joanispud joanispud joined the community
  17. Susan Stewart Susan Stewart changed their profile photo
  18. Pullo Pullo joined the community
  19. Sonia Stone Sonia Stone changed their profile photo
  20. CircoK CircoK joined the community
  21. Karen
    Hi Dee, it might be worth having some blood tests done? Not sure of your age, but certainly worth to see if you're defiecient in anything .... I was found to be be lacking in Vit D, Calcium, Iron etc ... don't give up! xx
  22. Vicky.W Vicky.W joined the community
  23. barbara.kolodzinski@yahoo. barbara.kolodzinski@yahoo. joined the community
  24. CaseyR
    Dee Dee, next month I will be 7 years out from my nasah. I get what you are saying. Someone once told me “ a bad back is like country music. It’s here to stay!” Apparently for some of us nasah syptoms are too!
  25. Winb143
    Hi Dee Dee, Welcome to Behind the Gray. I get twitches in the eye and feel like I'm winking but seriously see Doc again and ask him if it is natural as I was out for an age after my SAH so all I know is after having shunt put in I still got headaches, and I always wake up with one grrr ..it is scary as we think "Is this another one happening" Could be the worry of you thinking it could be one and just put mind at ease and see Doc again. Wishing you all the best and try not to stress easy to say but harder to do. My Surgeon said "No Stress" so I sang and that was stressful also lol. Wishing you all the best how I got over it was by singing happy songs and remembering happy times but each has their own way of coping. Good luck and keep drinking water xxx
  26. subzero
    Hello DeeDee and a warm welcome to BTG. Thank you for posting. While we offer no medical advice, you will find much support from the information within the various forums, and I am sure others will share their experiences of the many highs and lows of life post SAH. As the years pass, it can be challenging to diagnose what symptoms are a result of SAH and what is simply due to ageing and lifestyle. Please feel free to share in the Introduce Yourself section, about how SAH has affected you from the initial trauma of seven years ago. Also pay a visit to the Green Room where members share in daily `light` banter about whatever is on their minds Subs
  27. ClareM ClareM changed their profile photo
  28. DeeDee
    Hi everyone, I have been having symptoms that come and go. I can be fine for months at a time and then suddenly they are back. They include spikes in blood pressure, chills (actually shiver), cold sweats, blurry vision, dizziness and muscle twitching and spasm. They only thing out of these I had prior to the SAH was occasional muscle spasms. I have been to neurologists, cardiologists, about every kind of "ologist" there is with no definitive results. Anyone else a few years out who has intermittent symptoms or similar symptoms?
  29. DeeDee DeeDee joined the community
  30. jess
    Glad everything went well xxx
  31. Skippy
    Hey Joan Glad everything went well - perhaps you can refer to your anni as Spidey now (i.e. Spiderman ). Mine's called Monkey haha
  32. Winb143
    Joan, Not had anything done here, but went to bed and woke up because drink wee etc. Glad you feel a bit better as your post sounds light, keep cheery it really helps xxxx xxxx
  33. saffy
    They showed me a ( Web ) it’s only used up to 8mm annies ...it looks like a little mop cap lol sticks to Annie stops blood getting in...I asked could I have it and she said You’ve got ten coils in your first Annie and the web is dearer than .. so not cheap lol. Feeling very tired today but glad to be home. Drinking plenty of water so it’s sleep wee sleep wee lol
  34. Winb143
    Glad all is well Joan, I'll go and look up web lol as not got a clue what it is xx Glad all is over and now healing time xxxx Make sure you get spoilt lol that is what I did but they clicked on that one xxxx Heal heal heal that's my message for you xxxx
  35. Tina
    Sleep well Joan, so pleased all is done and wishing you a speedy recovery xx
  36. saffy
    Hi Everyone...back home had my op on Monday".very sore and tired glad to be in my own bed..they didn’t coil they used a Web but told to stay in bed and rest and drink lots of water. Going to sleep now xx
  37. Jabib Jabib changed their profile photo
  38. Karen Horton Karen Horton changed their profile photo
  39. Dorothy Cairns Dorothy Cairns changed their profile photo
  40. Earlier
  41. Susan McGoldrick-Meerdink Susan McGoldrick-Meerdink changed their profile photo
  42. Airamnna

    One year anniversary after SAH

    Airamnna replied to Airamnna's topic in SAH/Stroke Anniversaries

    Thank you both, feel much better about it now.. Love the support here 💜💜
  43. Winb143

    Confusion?

    Winb143 replied to dbc's topic in Non-Aneurysm SAH or Perimesencephalic SAH

    Hi All, As others will tell you it is such a slow process when getting better, and they discharge us and all we have is each other to talk to about it. This is when BTG comes in, a trouble shared is a trouble halved. We see all of us have been or going through the same and it helps so much to have a name on screen say "I had that" and they are laughing now or happy. We all get our Down days but a girl didn't like me saying keep smiling, but I believe thinking happy thoughts and good times with a smattering of some happy songs helps us get through this. So we will get there but we need patience and a smile even a moody one when getting better will do xxx Now face the world all us Survivors xxxx Don't forget your water lol xxxxx
  44. SueB

    Confusion?

    SueB replied to dbc's topic in Non-Aneurysm SAH or Perimesencephalic SAH

    Hi DBC its been 15 weeks since my SAH I thought I was doing well went back to work at 8 weeks doing 3 days, still no driving but walking most days. Lately I’ve been having similar symptoms the floating when walking, lost for words sometimes, and fighting this confusing/ stressed/ unsure feeling quite often. Today I wanted to turn my vacuum cleaner off but tried turning the kitchen tap off instead ( laughed at myself). Im also find my patience isn’t what it use to be and I don’t think I am as good at my job as I use to be some days I’m really struggling, I work in childcare toddler room, which I’ve always been passionate about. Im so glad to hear others are having similar issues thanks for your post
  45. Patricia Jacobs Patricia Jacobs changed their profile photo
  46. Bill B
    The noise, and sound comes from all direction. I wouldn't wish this noise on anyone. Cars attack me. People stab me with sound. I have stay in my house. The whole damn world is barbed wire!
  47. SusanM

    Headaches

    SusanM replied to SusanM's topic in Non-Aneurysm SAH or Perimesencephalic SAH

    I would like to thank everyone for their responses. It does really help to hear that others are dealing with the headaches and the things that work for each of you.
  48. Winb143
    Should be a Director of films Bill lol xxx Get it and echoes in my left ear, still sing it away when not to bad !!
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