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  1. Hi Jackie, welcome to BTG and I'm sorry you are feeling so low and unwell at the moment. I am really hoping you will start to see some improvements in the coming months and that the site will help with some answers and some reassurance. I had ICP monitoring post my SAH and via an EVD and it is horrid as despite wonderful teams you lose some CSF and that is a dreadful feeling. Also remember our body is used to absorbing the CSF and when it doesn't our electrolytes and minerals go haywire. For me the experience of low pressure and effects of that on a recovering brain leaves me feeli
    6 points
  2. Bless you All Karen and Team, Whenever my chin starts to wobble and I feel sorry for myself I come on here and type away and tears of gloom turn to tears of laughter so... Thank You Karen and all her Family and Family of Mods. To be honest I had a joke to give Chris Tarrant I was gonna say "We don't wanna give you that" so in a way glad I wasn't picked as I would have shown you all up ha ha even had a song at the ready lol Love to All of you Win who nags hubby xx (Bless him)
    6 points
  3. Hi all, I honestly cannot believe that an entire year has gone by. It's the strangest feeling. It's difficult to remember a time before SAH I question sometimes just making sure, God did all of this just really happen in a year?! An obviously the answer is yes. Yes the absolutely mental year that you really couldn't write has just happened, and it's happened to you! I was thinking the other day how funny it is that your body just adapts to new situations, or rather how your mind and emotions adapt to the new way of living. At 17 I have simply adapted, I think that's a good wa
    5 points
  4. Hi Sophie, my daughter had SAH aged 17 years, she has since completed her A levels and is in her second year of university and loving every minute of it! It hasn't been easy, she still suffers from chronic fatigue, but she has great friends who support her when she's away at university. She knows her own limitations and has developed strategies to cope with her fatigue. We both still attend a monthly support group at the hospital where she was treated which helps us and also gives the opportunity to support others who have recently suffered SAH. You sound as positive and determined
    4 points
  5. I can't thank you all enough for your wonderful support, it has improved my recovery immensely. I have finally been able to lift myself out of the bleak area and start living a little again, I got the train yesterday which was the first time since I collapsed (I can't believe I found a train journey so exciting!) My GCSEs have also finished and I am no looking towards my prom which is again something that at one point was not going to happen. I have also started to write all my thoughts and feelings down, everything I can possibly think of and I am now trying to compre
    4 points
  6. Don't be negative. Look on it as an opportunity to discover new things and new ways of doing things. You'll be surprised at what you can put your hand to when you try! Good luck, Macca
    4 points
  7. Thank you everyone. I'm taking it a day at a time and I'm grateful to have this group!
    4 points
  8. Hi Jac A very warm welcome to BTG....glad you found us. Thank you for sharing your story .....what an absolute nightmare time you have been going through bless you, let alone recovering from a major trauma to your brain, but everything else you have mentioned ! I am not surprised that you are feeling how you are. You have had to be so strong and fight so hard that now your body has told you to slow right down. Listen to your body and be kind to yourself Congratulations on being awarded full custody of your two youngest children. Wishing you all well.
    4 points
  9. YES! The most important thing here is that we have each other! Let's BUILD on this! My entire outlook has changed! I cherish every soul! So happy to be here! For the first time post SAH, I went walking. It felt so good and energizing! Gonna continue and build on it.
    4 points
  10. Thanks Tina! So many answers here! So many humans like me! looking forward to hearing and more sharing!
    4 points
  11. I cried when I read Macca`s wonderful words about Win, they were perfect. Win, if there was a gold medal for fight and determination, you would win it. You have helped so many people with your positive outlook and your " we can beat this" attitude, I am so glad that we have you here at BTG. You are an inspiration to us all, Thanks Win for all that you are and all that you give to us, Love Michelle xx
    4 points
  12. 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
    3 points
  13. It's been a very long time since I have written anything, so I figured it was time for an update. I passed my exams to begin with! I am now three months into my A levels and loving every second, surprising! Now that everything in my life is relatively normal again it's hard to believe that at one point this would have been the point when the doctors suggested I should have taken my GCSE's instead of taking them so soon after my operation. The summer was also full of festivals, another example of something that was suggested wasn't going to happen. SAH is still a
    3 points
  14. Hi Julie A very warm welcome to BTG. So glad you found us and the site has given you some comfort to know you are normal in how you are feeling and not alone. You will find lots of helpful information on the Forum also lots of friendly caring support. As the lovely Win has already said, please feel free to join in the daily banter in the Green Room, we are a friendly bunch and ask any questions on the main Forum. We cant give medical advice, but can share our experiences. Julie G-B said QUOTE "I'm confused, so so tired, cant find words,
    3 points
  15. To keep `the `shower` theme Mrs Subs was so weak the nurses had said to her `Please don`t shower on your own` It wasn`t just once that they had to go in and rescue her from the floor ! She thought she was trying to help them save time. Daf, thanks for taking the time to share your story. Looking forward to hearing how you are dealing with the ups and downs this `fascinating` post NASAH thing throws at you. Most of us had never heard of it before and now it consumes our lives ! Subs
    3 points
  16. Lol Daff, I think we all have the toilet challenge story! I do vaguely remember mine, however I rememeber the solo shower challenge better. Lovely shower managed alone, back to the ward, stood by the window and sang; ' Oh what a wonderful morning' then prompty threw up and then slept for 4 hours. Well done Daf on a great story, think we can all find something in common in it. Clare xx
    3 points
  17. Second anniversary tomorrow - still some bad days but more good- Happy Christmas everyone x
    3 points
  18. Hi Jac You had your sah just before me, mine was 10 Feb 2105. It was a NASAH with hydrocephallus and an EVD so no driving for a while. Sounds like you had a nightmare getting the diagnosis, just goes to show how wrong medics can be sometimes. I too like a wine but can't drink much now without becoming a total amnesiac. My husband always has to remind me the next day that I've already told him stuff and I really can't remember conversations I have had too. I find if I drink lager it's not so bad. Sometimes it really is just best to give in and take time for your
    3 points
  19. Hi Georgia Gal, Just reading there about how you wonder if your dental implants could have anything to do with your situation. I am interested in that. I was a dental nurse and just take all dental issues as normal but I am going to ask my dentist and my neuro consultant about dental extraction. I had a rather difficult extraction from my lower right jaw February 2015, I had constant pain after and in the end got my dentist, (who had been my employer a few years ago), to make me something to go into the space as my jaw constantly ached. He made me a one tooth denture, which
    3 points
  20. Hi Georgia gal a very warm welcome to BTG! Thank you for sharing your story. So sorry to read you have had a grand mal seizure after your SAH. Really hope that you will start to feel a little better and wish you well with your on going recovery. You have come to the right place for lots of helpful information and some great friendly support. Glad you found us and look forward to hearing more from you. Take care Tina xx
    3 points
  21. Win, you're lovely and I'm glad that when you have a wobble, that you feel that you can come here. xx
    3 points
  22. Hi, Riane, I am 2 years out from my SAH and your post is the MOST helpful information I have come across (Stroke of Insight is second). Thank you! I'm off to drink water - which I have been totally ignoring. Best wishes for your continued recovery. You sound like a lot of fun and I am going to steal your lines to your daughter ("Have we met...) Best ever! Thanks again. Alexis
    2 points
  23. Sophie, beautiful words to share and they moved me too. Our frame of reference for our own reactions and capability gets shifted entirely by the SAH but for us, the lucky one who lived to tell that tell we start building that new framework, testing new limits, finding changed tolerances. Fly high Sophie. I wish you all the luck in the world and keep us posted. X
    2 points
  24. I am so glad you are doing so well Sophie. You have clearly embraced the experience and come out with a hugely positive outlook on life, not an easy thing to do.
    2 points
  25. Your words made me well up Sophie, it's a part of my SAH and me now !! Tears at the drop of a Hat !! We are survivors and you have done extremely well for a young girl to put it into words. I hope you have a good life and a happy one, now the world is waiting for Sophie's next instalment. On her survival adventure. Well done you for putting it so concisely as I cannot spell Succinctly lol xxxx Now remember a smile a day keeps the blues away xx All the Best, that old girl with the silly name ...Keep us updated wont you xxx Love Win x
    2 points
  26. Great letter It really does make you think ! Jill
    2 points
  27. Sophie, how wonderful to hear from you and for posting such positive news of your progress. Your post will give so much support to others by showing that there is a good life after a SAH Best of luck for the future and that all your ambitions will be achieved.
    2 points
  28. Hi Julie As Tina says, a warm welcome to BTG sounds like you have been led a merry dance to get a diagnosis. Drink plenty of water and rest, they are the best things for you. That and get on to the hospital about that group meeting. It really helps to speak to others in the same boat - as we are on BTG. Makes you feel less isolated and helps to make sense of all the problems. Come back and let us know how you are getting on. Clare xx
    2 points
  29. Hi Julie, I had an SAH/Bleed and I do not remember what was going on. I had a shunt put in a year later and woke up from cuckoo land. You are not alone and this site is a God send as we have all been there without the wait you had. !! My short term memory is awful lol but I sing a lot and it cheers my Family up (Not !! ) ha I knew I was getting better as hubby and Daughter were so good to me, now they moan more ha ha I will wish you well and as I tell everyone, My Surgeon told me" No Stress" it is bad for us, that's where the sin
    2 points
  30. Sophie, as I am new on this forum I am not sure if you are still logging in but if you are I want you to know that I think you are a wonderful, inspirational young woman and I can only add "SMILE a lot, every single day" xx
    2 points
  31. Sophie , We had a Mum come on here and her Daughter was going to go to University, she put it off for a year and went when she felt able and her Mum gave us an update. I cannot remember the girls name sorry but someone might remember it. Short Term Memory loss arghhhh. I am an old dear and can remember years ago but ask me what I said to hubby 5 minutes ago ??? lol You will get better but it is a long haul and you have youth on your side. All I had was excess fat that kept me going lol I was told by Surgeon No Stress and keep away from so
    2 points
  32. I would just like to say thank you to everyone that has messaged me. I collapaed on Saturday night 22nd April I was out with friends, they very cleverly called an ambulance and my mum. Unfortunately when the ambulance men arrived they thought I was drunk or had taken something (which I wasn't) I have since found out that I had collapsed for about 15 minutes and had thrown up all over myself (not my style) I have no memory of this at all, I couldn't speak after I had collapsed also. The ambulance men then took me to Kingston hospital, I was actually discharged from Kingston hospital
    2 points
  33. Hi Jackie, I did answer your mail yesterday but it is missing so if you get 2 just ignore one. I did think my time was up and my Daughter told me about a site she found while I was in hospital, Yup this site !! My N Surgeon told me , do not stress as stress is bad for us. Hard not to stress so I sing a song or 3 to keep the blues away and just knowing we are not alone helps. It has put my mind at ease knowing that life goes on after SAH/Bleed. I came on here full of doom and gloom and left laughing, Also water helps so keep drink
    2 points
  34. Great post Daf, you have done well indeed. Those early days are very hard for us and for family. The toilet challenges shall we call them can cause some amusement can't they? Remind me to tell the tale about the flying bedpan incident...or maybe not ?
    2 points
  35. Hi Joanna Welcome to BTG, still early days for you despite it being last July. Are you drinking plenty of water as it really does help. My son used to bring me a large mug of tea and a big glass of squash every morning for me to drink in bed. I remember lying in bed, head under covers just waiting till I felt ok enough to sit up and start the day. I doubt that hung over feeling is due to the paracetamol and ibuprofen, they don't have that effect, it's probably just the after effects of the sah, but if you are worried get it checked out. You have the added complica
    2 points
  36. Hi Jac and welcome! I hear so many stories of people having a SAH and being sent home with a migraine diagnosis. It would seem that they would err on the side of caution, but alas they do not. I don't know who made the decision to do the MRI on me when mine occurred, but I am thankful. It sounds like you have a lot going on in your life and stress can be unrelenting. I am thankful that you have some family who will support you and that you have joined our "family" on BTG. This site can make tough days much easier, just form the love and care that comes pouring our o
    2 points
  37. Hi Katy A very warm welcome to BTG, glad you found us. You will find lots of helpful information and friendly support. Sorry to hear you have not felt yourself the last couple of months after doing so well. Good to read you have been to be checked out and hope you get some answers soon. Try and take things slowly, you are still very early in recovery. I also had bad head and neck pain for quite a few months after my bleed, I was told by my Neuro Consultant it was the blood dispersing and that it can take some time. Wishing you well
    2 points
  38. Hi Katy, I had an SAH and remember nothing for a year, people say I spoke to them but I still don't remember. Good in one way !! I was going to mention Clare but I see she has responded to your post. Keep well and do not overdo it xx it can be a long haul but you get used to ringing etc. or see Doc about it. Good luck on your recovery and keep smiling xx Love Winb143
    2 points
  39. Hello Katy and welcome to BTG So glad you found the site at a time when you feel you need support and understanding from people who have `been there`. You will get much help as you read the threads that are similar to your experience so far, and you will find BTG friends who are always keen to offer support based on their own journeys post SAH. I do hope your husband is coping well, as the trauma of seeing your initial struggles can be very tough to grasp and live with. Also the worries about the future for your recovery, when SAH is something that probably
    2 points
  40. Me also shame though as I haven't had a decent wine for ages lol xxxx Keep going and never give up xxxx Welcome To BTG Jac xxx Remember no problems/Stress while brain is mending itself. You think of a happy song and you start to sing it. No I wont sing just yet but remember only happy songs, also I read when you have a smile on face, sadness cannot come through xx Love Win
    2 points
  41. Thank you Winb143. It certainly makes me realise how lucky i was. I never needed OT or physio.. How amazing you are getting there, you must be so strong and brave I've had nothing but stress since my bleed and find it hard to avoid. How do you steer clear of it. Water is the answer to everything. I always feel better after a good drink. Best wishes. Jac. Xx
    2 points
  42. Welcome Jac and all what Tina has said Ditto, You think you are alone and you come on here and we are many who have gone through it. I know this sounds selfish but I thought to myself "Win all these people have been through it so you are not alone" which was my cue to get up and start walking as OT's said I wouldn't. Getting there apart from backache. You have been through a lot now remember to drink water, smile and no Stress Whatsoever !! (Neurosurgeon told me no stress) so I wish you a happy and healthy life and remember it is early days xx
    2 points
  43. Hi Katy Welcome to BTG. Your story sounds so similar to mine, it actually sent shivers up my spine! I Like you I was running when I had my NASAH in Feb 2015. I had hydrocephalus and had to have an EVD but no other surgery or long term problems. I started running again about 3 months after my bleed. I joined a Couch to 5k group so my re-introduction was slow and controlled, It's a 9 week programme and I did my 5k in July 2015 about 6 months after the SAH. I have continued running - with a group now, my husband is not keen on me running solo - and now do about 6 miles twi
    2 points
  44. Now we have each other on BTG watch your troubles diminish as a trouble shared is a trouble halved I have come on here all down and left laughing, of course the family think I have lost the plot lol but a good laugh can help us feel so much better. I had implant as the pills / Epanutin made my gums shrink, hence teeth have gaps and some just fell out, I paint a pretty pic of myself ha Hope to see you in Green room for every day chit chat soon xx Be Well All. Win xxxx
    2 points
  45. Hi Georgia Gal, I have had epilepsy since puberty, they got less and less but since my bleed the epilepsy has become stronger and they are horrid things to have. Lots have to give their license back but get it back after a period of time. I had my bleed in 2009. age 63/64. (young un lol) Get your medication right first and Good luck on your recovery xx Epilepsy is scary and I was okay up until Docs said I needed a higher dose and I told them no I haven't had a fit for 6 years, they insisted and I felt like a zombie so they took me off them without slowly low
    2 points
  46. Hi Georgia gal You have come to the right place for sharing and answers. Sounds like you have had a hard time of it but are getting there. It takes time, a lot of time, much more than you expect. But you will feel better eventually, you are still early days and also adjusting to your new drug therapy which will take time. I'm now 19 months down the line and only just now feeling more positive about everything. I have learnt how to deal with the fatigue and darned memory problems but still feel I have a way to go till I perfect that! It's so easy to think 'yes I am fine,
    2 points
  47. Barrington, hi. In answer to your question, yes in most cases it does get easier, but it takes time. You have to adjust not only physically but mentally to what you can and cannot do. You need to do it in stages and don't be tempted to do too much too soon. If you are going to try something new, rehearse it privately first so you don't embarrass yourself in public. If it proves too much then change it until you become comfortable with it. If you lecture, are there different ways in which you can do it, ie if you normally stand, can you sit instead? Can you produce a video le
    2 points
  48. Thanks guys,its really good to be able to talk to people that understand and get advice from others further down the line than me
    2 points
  49. Hi Michelle, So many of us have been down this road, and you are right on all counts. We are lucky, short term memory is still a problem, we still have headaches, dizziness and balance problems, and luckily most of us seem to have brilliant partners who you rightly applaud and appreciate. They don't get enough credit in my book because their lives are affected by what happens to us also. But hey, we are still here and we are lucky - look forward not back, we are who we are and you can't turn back the clock, but you can control your future. Make it count. Good luck, and keep post
    2 points
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