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Showing most liked content since 20/01/18 in all areas

  1. 16 points
    Today it is 14 years since my brain decided to play silly devils. After an initial struggle to come to terms with what had happened and many months of recovery I now have a good life. It may have knocked my sense of balance and memory off kilter but I look on it as doing me a big favour in the long term. Positive thoughts. Yes, I know I have to use a walking frame but that hasn't stopped me enjoying life, I look on it as my bit of independence. I was unable to go back to my profession due to the balance problems but I eventually made a new life for myself that I enjoy. Unable to do most of my housework (something I hated but necessary) I now have a cleaner. In fact I do very little in the house. I spend most of my time doing things I enjoy doing. I can travel when I want, no adhering to a set holiday routine and I do love to travel, exploring different cultures, Europe only though because of insurance costs, but so what, I am following a dream of my younger years. Initially I thought that the SAH was the end of the world, my opinion on that gradually changed and I now see it as a positive event in most ways. The message here is, look on the positive and not the negative. Your life is what you make it in spite of possible difficulties, there is always a way round them. I have gone on to make a good life for myself, you can too.
  2. 10 points
    To my mind there are three stages to SAH 1) Cause 2) Treatment 3) Aftercare What happens in most cases is a ruptured aneurysm - Why? We don't really know, and so we speculate ie poor diet, (alcohol, tobacco included), stress - which cannot be measured but is believed to be a factor in a lot of cases, and various other things too. We seem to lack concrete data on all of these things and more research is needed for sure. Treatment, thankfully, is the best of the three categories above. At least we are now able to save many patients who make it to hospital in time. Aftercare is the biggest let down, for me at least. Issues around returning to work, re-evaluating your life, re-learning life skills, relationship matters, dealing with abrupt change, looking at the 'new' you, how to deal with people who can't see your injury and think you are alright, and the rest.. That's where this site has proved invaluable to so many people. After the clinical issues are resolved, that is where the authorities let go of the patient, and then the residual physical and mental issues kick in, with very little means of support, if any at all. As usual, they trot out the lack of cash available line, but there are things they could do with minimal input. Setting up support groups, providing more information online for patients and their families, utilising the experiences of previous patients and the like. Providing information for carers and just letting people release their anxieties would be a huge step forward. Step forward and take a bow BTG, currently filling a massive, massive, gap not catered for by the NHS.
  3. 8 points
    The sharing and empathy on this site...well...it actually takes my breath away...so many kind souls who have been through so much and are willing to share how they manage to move on in life.. Sooo very happy I found this site....it makes a difference for me...thank you all...
  4. 6 points
    Hi everyone, So after lurking on here for few months now it’s now time I’d like to share my story.. after reading lots of your stories on here I found it really helped me in the beginning understand what was going on in my head!! So here goes.. September 19th 2017 I dropped my youngest daughter to school. Walking home, I was chatting to a friend when I felt a “pop” come up from my neck to my ear on the left side of my head, which was then followed by the most horrific headache I’d ever experienced. I told my friend I felt unwell and just needed to lie down. After taking some paracetamol I tried to lay down but I couldn’t, I then called 111 and spoke to a paramedic who told me I should probably go to A&E within the hour. I called my Dad who took me to QE Woolwich and we waited to be seen. The headache was still there but I then started thinking it was a migraine as I’d never sufferred with head aches, so was unsure. The first person I saw was a GP in urgent care who said it was possibly just a headache but I could wait in the actual A&E to see a doctor but was up to me.. Thanks to my Dad he insisted we waited.. Seeing a doctor, she insisted I have a ct scan. I was then taken to a bed and the neurologist came to see me by this time I’d been sick had a stiff neck and the lights were hurting my eyes.. straight away the neurologist informed me they were testing me for meningitis, I was then put into isolation and had to wait for a lumbar puncture next day. So next day, it was as though someone switched my headache off! It was gone, I still felt a pressure feeling in my head but the pain not so bad. I then had the lumbar puncture, during which I saw every bottle was pinkish (just something I remember..) I stayed another night and the following day the neurologist came in to tell me I had viral meningitis and was to be sent home with pain killers and a neck rub from husband when needed!! I was pleased to be going home and got my self sorted, when two junior doctors came in to tell me I was having an mri scan. I told them I’d just been discharged by someone else when they said they’d ordered the scan and that was their boss who’d discharged me!! I had the scan. Within 10 mins I was being told I was being blue lighted to Kings London where a Truama team were waiting 😩 I arrived at Kings to be told I’d had a subarachnoid haemorrhage and will have further tests next day. I had an angiogram next day which confirmed I’d had a bleed, and then had the choice of waiting four days to be re- scanned or have surgery (craniotomy) from the surgeon, the amazing Mr Walsh. I opted for surgery knowing the risks but could not wait 4 days knowing a risk of re-bleed. Anyway had surgery 23rd September which was more exploratory where the surgeon had wrapped a broken vessel, unsure whether it was a ruptured anerysm or an infundibulum.. I was discharged on 26th with follow up scan in 3 months, recovery was fine had the best family and friends around me and I went back to work as a hairdresser 3 weeks later, as I felt myself, apart from the memory loss ( I had lists and post it’s everywhere!!) and I also had a slight problem with my speech, more so where I couldn’t think of the word I needed or my sentences came out back to front!! Very funny some of them wish I’d written them down!! So working through December as a hairdresser busy busy I was aware of my upcoming scan but felt great so had no worries. Had a lovely Christmas and went back to Kings on 27th December for my follow up mri, went home to then received a phone call from one of the consultants to tell me they found I’d had an aneurysm at the front of my brain. I had to go back in that night for more scans and the following day I had exact operation in same place.. had my little tufts shaved back off which I’d proudly grown 😂 So I then had the aneurysm clipped and was sent home on 2nd January and recovered. Amazing again this time, speech perfect apart from swearing a bit more than usual at random.. but everything else is fine. I’ve been back to work almost 4 weeks and also started another job as a hairdressing tutor which was my dream that came along a bit sooner than expected, but I needed to take it with both hands and move on. So far I’m feeling this is the best way for me! So although I’m very pleased with my outcome, I am very aware of what could have been as I faced that in Kings, seeing some very poorly people.. I’m sharing my experience as I can’t help but Google and the first time I typed in “subarachnoid haemorrhage” I had the fright of my life!! Yes it’s been frightening but I feel completely fixed and have a scan in a years time. I’m sorry for going on and on but feel I needed to share as this site really helped me Emma xx
  5. 6 points
    Go ahead, travel & do whatever you can! I just feel I’ve been given a second chance & I’m just grateful to wake up every morning 😀 I had an nasah nearly 2 years ago when I was 46, had ct & mri & a small bleed was found. Rushed up to Kings College Hospital in London & nothing showed up on the angiogram. I was just told I have no more chance than anyone else of it happening again. Yes, it’s scary. I think about when it happened a lot & what if? Every little twinge of pain I think it might happen again. I still get very tired, don’t sleep properly & have tinnitus. But I’m more or less back to my ‘normal ‘ self. Every one on this site is so supportive & it’s good to know others are going through the same thing. Take care all of you 😀😀
  6. 5 points
    Very true Karen. We are all individuals and the damage our brains have suffered is individual too. However i would like to thank you for providing this site where we can compare and support collectively. Thank-you Clare xx
  7. 5 points
    I've always believed that any interruption to the supply of blood to the brain, is a stroke. That includes a clot or a bleed on the brain. Our deficits as to what we experience, will always be different ... as to what artery or what has been damaged by the bleed or even a clot. Every part of the brain is different, as to the area that it supplies and the affect that it has with our day to day life. No size fits all and I doubt that you guys would be on this site, if you weren't experiencing problems. Brain injury will always be individual and some of us suffer less and some suffer more mental and physical deficits ..... i'm still on a learning curve since starting the site in 2006, but I do know that talking about it and sharing your own experiences is something that you can't put a value on. xx
  8. 5 points
    Hi, As I see it, hospitals treat the clinical needs they are presented with and they do it very well in the main. The 'aftercare' ie when you are released from hospital is a 'gap,' and is a different thing altogether. What happens after release from hospital is that the patient(and their carers/families) acquires a thirst for knowledge - what happened?, why did it happen?, what can I do about it?, why does it affect so many different parts of my body? etc etc and this is where a site like this one begins to fill the gap. Where hospitals could improve is by garnering the knowledge from people like us and putting it into some form of leaflet, on-line Q&A or some such thing. The problem, though, is that the effects of SAH are so wide ranging and no one source could cover absolutely everything, because a SAH and its effects are a personal thing, varying in degrees of effect and emotional and practical impact. That is why this site is becoming so popular, the experiences are from real people who have gone through it and come out the other side. There are things though that are common to many SAH such as memory loss, headaches etc and these could be dealt with. It's just the effects that are different! It wouldn't cost a great deal of money to put information together but sadly most hospitals cite money as the primary excuse for not doing it. All it needs is a co-ordinated effort to put something together and let all hospitals use it. It does not need to become a cottage industry - just a one off effort could be enough! It needs someone in authority to say 'Yes let's do it!' instead of always coming up with excuses of why not to do it! Sorry to rant but it seems so obvious to me! And 'yes' I am a survivor, lucky to be here, and living and loving life to the full, in so far as I am able! That's the best way to say thank you to those who saved my life. Macca
  9. 5 points
    Hi dbc, I'm nearly 4 years since my SAH, at the start of my recovery I couldn't string a sentence together and it was very frustrating, my words would get stuck, I knew exactly what I wanted to say but it just wouldn't come out. Like Super Mario I have had some hilarious moments with some of the things I have said. I have to do things a little slower now, think about one thing at a time, I find thinking very difficult if there is a lot of background noise, my brain can't filter that out anymore or at least not like it used to. I have improved as time has gone on, when I am tired or stressed I notice it more, my partner has to go shopping with me because I have a tendency to leave debit cards in machines and struggle working with money, but I am learning to live with this new me. You will get there, 7 months is still early in your recovery, as others have said take one day at a time. Wishing you well Love Michelle xx
  10. 5 points
    I have memory problems. I am not able to focus on intense problems. I can't multi-task as well. All part of the new me. But I breathe, so I will take it.
  11. 5 points
    Hi Krislwal, I have not posted on here in ages, but your thread caught my attention. Since returning to work as a teacher I find general existence takes up all my energy as have not found the time to post! I had what was originally thought to be a NASAH in Jan 2015 when I was 27. This was a large bleed and was classified as a grade 4/5. I had this during heart surgery for a congenital heart defect and was left with some ongoing issues (hydrocephalus with the VP shunt, arachnoiditis on the spine and arachnoid cysts on my spine). Due to the size of my bleed and the fact I have a congenital heart defect and got the issues with my spine I was sent for a range of tests to find the cause of my bleed. I have had the full range of MRIs and also two angiograms. All have found no AVM or aneurysm. I was sent to a genetic specialist and also a rheumatoid specialist to rule out all genetic conditions and any connective tissue disorders (also Ehlers-Danlos). I have seen a second neurologist to gain their opinion as well (sent by my normal neurologist) and they could not find a cause but were of the opinion that my bleed was not an SAH but a intraventricular bleed i.e. all in the ventricles. The upshot of all these appointments and tests was that I was born with a congenital heart defect which was not picked up into adulthood. This caused high blood pressure which has weakened my blood vessels. During my surgery one of these burst and as I was taking a load of blood thinners this did not clot and led to a huge bleed. It was just a chain of unfortunate events. I did not seek or ask for any of these tests (to be honest I was too out of it in the year following the bleed anyway) but it was pursued by my medical team due to the size of my bleed and my other conditions. I do think my team looked at everything possible though and still did not find a clear, concrete cause. It is hard not getting a reason as to why this happened but over time it does get easier to live with. I find I still get asked about the bleed quite a lot but that is because I was left with physical disabilities as well (use a wheelchair and walking stick) so it comes up often as I am quite young and people are curious. I have managed to get back to a good existence - back in work (part time) and doing some of the things I did before. Everyone who has said the chance of a second bleed is very low is correct. It is just difficult when you have had it happen for the first time, seemingly without any cause. I guess I generally try to not dwell on it too much, take my blood pressure meds and try to live as healthily as possible. Hope this has helped somewhat. I know I have been tested a lot after my bleed compared to many so thought I'd add my comment. Gemma
  12. 5 points
    Well, I had the eye tests with the Neuro Opthalmologist, whom I had already seen last April. She was happy with my eyes and saw that there had been a modicum of improvement in my right peripheral vision. All in all she was happy to support my licence being returned. Am now just waiting to hear from DVLA when she has issued her report. The steps are small but significant and I am sure I'll get there eventually! Anyone else have news to share? JM
  13. 5 points
    Thank you all! The biggest problem really has been the headaches, which have been difficult to treat since my wife is allergic to codeine and related drugs. Some particularly painful moments made us worry that she might be bleeding again. Since my original post, I did end up making a call to the stroke clinic at the hospital and got some more clarity on when the pain warrants a call or visit to the clinic, and when to call an ambulance. We have also followed up with our primary care doctor (who's taken care of us for more than 20 years) which was also helpful to calm anxieties and help with pain management. Her only medical issue prior to the SAH was migraine, and she curiously has not had one since the SAH! Neither of the two pain medicines she previously used for migraine are allowed now.
  14. 4 points
    Macca is the best I swear! You always know how to make everyone feel at ease and you have the best advise. We appreciate you Macca, and everyone on this site. Everyone is so helpful and supportive. Vermont girl- I am 9 months out as well with no residual effects thankfully, however, sickness is definitely way harder to overcome so I can absolutely relate. I'm a realtor and get exhausted quickly with all the running around for sure. I used to substitute teach and do an after school program as well but gave it up as I just don't feel like I can handle. Family is so important. Having a trauma like this is very trying on your personal relationships. I still don't feel like myself and I don't want to do half the things I did before and I feel bad about it..... but I know my partner and family love me however I am. They're just happy and grateful I'm here and so am I everyday. Good luck to you!
  15. 4 points
    Hi Penny, I am 3 years down the line and also have a shunt. I still have a range of balance issues but part of mine are to do with the fact that the bleed caused damage to my spinal column, so I have a spine injury as well. In the first year after my bleed I had a couple of falls - one outside and one in the shower. Like Daffodil and others have said they had to make me reconsider how I go about doing things. I know from your other posts that you are having trouble with the setting on your shunt and I would not be surprised if that is contributing to your balance problems. Hopefully the doctors will be able to sort that out for you soon. I find that since my bleed whilst my balance issues have not actually improved, like others on here I have learnt to deal with them and adjust (and as I said earlier a large part of mine is the spine damage). I can get spells of dizziness and have issues with steadying myself and walking etc. I have walked with a stick since just after the bleed and now also use a wheelchair for any distance. I hope things do improve for you and they get your shunt setting sorted out. Gemma
  16. 4 points
    Excellent rant Macca....right on....When I expressed distress, interest and confusion with my after symptoms to the Neuro taking care of me he did suggest a Wellness clinic...Problem with it was they don't often have patients with any type of stroke, never mine my personal one. I was told it would help me stop thinking about it...I get it...move on, enjoy my life...but first I was thirsty to find out what happened to me and perhaps meet someone that shares some of my experiences....this site is as close as I have come to meeting someone...thank you all...and I am moving on but there could be better, more informational after care... I barely remember anything from my 8 days in ICU...I left for rehab knowing I had a stroke thinking I had 2 but the second episode was vasospasm....and knowing I was still alive... truth...thank goodness for the internet or I probably wouldn't know much more today nearly 10 months out....
  17. 4 points
    Hi Family Lowey Not much else to add other than to say I could feel the love surrounding me. That may sound strange and I have no recollection of events and my time in ICU but I afterwards I knew I could feel the love during that time.. Whilst he is in that state Then he really isn’t going to respond much but I do believe he will know and feel your presence so talk to him, a diary is great idea and also put family pictures stuck to his cabinet for when he is more awake. Baby steps. I had a grade4, EVD and later a shunt. The pressure on the brain knocks the senses out of whack especially when he had a EVD block(I did also) and he will have also lost a lot of CSF fluid in his ops so basically he’s feeling like he’s at the bottom of a rugby scrum right now. Ask lots of questions and keep an eye on how he is doing, colour, skin tone, etc. Love , hope, and healing thoughts for him and sending you all positive recovery vibes. Keep your food and strength up and share out all the visits between you. As Paul says this is a marathon but a whole lot is possible. Good luck
  18. 4 points
    Hi and welcome to the site Eight days are extremely early to expect anything of a major concern. Your dad has had two major operations within a very short amount of time the fact that he held your hand and reacted to you is a massive achievement. For such an event most people don't react this soon which is the good news and at present because of the two operations takes so much out of dad. I found starting a diary and leaving it by his bed so others can add to it a very good way of dealing with the uncertainty and the concerns you have. Put it all down and anyone else can add to your thoughts. They may keep dad sedated for medical reasons and to aid his recovery so take some deep breaths and trust the hospital staff and drs. All the family will be up in the air not knowing what's going on and what's going to happen, not only to dad but the family. Everyone needs to relax as much as you can and make sure everyone takes time for themselves and in doing so everyone will support each other. I`m sorry to say but this is not a sprint, this is going to be a marathon and needs to be taken one step at a time. Designate one person to converse with the drs because many voices can get confusing to drs , who can relay all information clearly and concisely to everyone else all one can do is wait. Its going to be hard but we are here should you want to vent scream and shout if you need to let off some steam, and if you have any questions good luck for now Hope dad comes round soon and shows he knows you are there and keep talking to him all the time. All the best xx
  19. 4 points
    Hi Lowey, I think your Dad has gone into recovery mode. The body seems to have a natural way of retreating into itself while healing takes place. His brain has undergone a horrible experience, however, this is why it is important for you to keep talking to the medical people looking after him. Have they put him on any drugs that have side effects that appear to make him more lethargic. Are any of them sedatives to keep him calm? Are they controlling the state he is in to give his body the best chance of healing, in its own time? Write down some questions you want answering and ask the medics the next time you get a chance. Don't try to do it from memory, because in the heat of the discussion, which is often emotional because you are family, you will forget and not have the chance to ask again for some time. It is at times like these when you need the greatest patience, since he needs to recover in his own time, and not the time that you want him to. That is an important distinction. It is important for you to keep talking to him, if you can't think of anything then read articles from a news paper or magazine. People take in more than you think, even if it seems there is little response at the time. Good luck Macca
  20. 4 points
    Thanks you all so much for your wonderful words of support...I do think I will be fine...doctor thinks I will be fine .. I just need to push through it and keep reminding myself I am so lucky and I should enjoy it...Being able to come on here and actually connect with folks that know what it is like...priceless...I thank you so much ....PS I have booked my next trip for May...I did it today after I posted here... day by day I am getting there..
  21. 4 points
    Mark, make sure you write all the questions for the neurologist down as and when you think of them. There is nothing worse than coming away from an appointment then thinking "I wish I had asked" or " I should have asked"
  22. 4 points
    Ian I have found this site eye opening...I am trying to read most of all that is on here...I had a NASAH 9 months ago, a small one, followed 2 days later by severe vasospasm.... 8 days in ICU, many days I don't remember then off to rehab for 2 weeks. I too feel I was just discharged to Physical therapists and feeling like I needed some more MD guidance. My appointments are months apart and they don't seem to really help me get on with my life or answer my questions (which maybe I realize now they can't) like when will the fatigue lessen or will I always feel swishy when on my feet...but as many here have said there are ups and downs and it takes time AND we are alive and can type :)...Day by day let your loved ones help and know, as I have discovered, there are many of us here giving support and encouragement... Best wishes as you recover
  23. 4 points
    I have a vision of the scanner wearing eyelashes, he he !!
  24. 4 points
    Thank you guys it is lovely to have found a place that are the same as me. I have finished a wonderful course to help with memory and coping strategies and most of the people there had suffered SAH's and it was wonderful to be with people who have been in similar situations as myself. It is fascinating how similar our after effects were and it brought me a lot of peace. I have told all the people in the group about this forum as they hadn't heard of it, so let's hope we get some new members.
  25. 4 points
    Thank you everyone, everything went pretty smoothly even though angiograms aren't my favourite. Now it is definitely time for a nice cuppa, and probably some chocolates to go with that :). A couple of weeks of waiting for results, though, but the doctor told me that everything seemed to look fine at a first glance. Hope your scan went well too, Kay!
  26. 4 points
    Hi Krislwal, I’m sorry to hear you’re in such pains with the headaches and of such difficult struggles in your life. Wise words from Macca, his words have given me great support, strength and understanding over the years. Also good advice from The Super, drinking plenty of water really does help. Me, well I’m over 7 years in and I still have headaches and temple pressure every single day. I honestly can’t remember what it’s like not to have them. I wake up with headaches every day, they take about an hour to ease off. So my start to the day is quiet, I don’t want to look at or talk to anyone, no radio etc on at all. I have to work through those pains alone. Most of the time I can cope with them, other times I can’t, they floor me, my whole head hurts. I have visual issues too as my bleed was behind my eye and my clip irritates my optic nerve (so my latest MRI showed after referral back to Neuro following my visual issues) Like yourself I live with other health conditions too, including Osteoarthritis, Fibromyalgia, Diabetes... blah blah blah the list goes on! My Mama has been fighting cancer for a couple of years, she’s had many operations but there is no cure, my sister fought breast cancer last year,she still has a way to go yet. These ladies are amazing. My husband is a transplant patient, so we live on a double edged sword. Throw in a SAH and can we take any more!!!??? We are stronger than we think, because everything happens for a reason. I have learnt the hard way to have patience and understanding, and yes I know there’s members screaming at me that I have very little patience! That is true, but I have learnt understanding. I know to plan things differently, I know when my brain will go into shut down because it can’t take any more. Resting in complete peace and quiet, even for a short time, is something I have to do every day after work. I do take paracetamol pain relief as that is the only pain medications I can take, most the time they take the edge off if I can’t cope. The daily headaches have become a part of me, but I wish for just one day without them! For me I’ve learnt that there’s just some things that I can not change, I’ve had to learn to adapt. Adapt but not Acceptance. Not sure I ever will find that little gem! We are the lucky ones, we survived. Cherish every day and do things that make you smile and laugh. Take care, SL Xx
  27. 4 points
    There is a topic on here called 'Difficulty finding words sometimes' I highly recommend you read it, might make you feel a bit better, and less frightened of making mistakes while talking, because one of the great things about the English language is there is so many different ways to say things, you can just take a scenic route instead.
  28. 3 points
    Hi, Yes I have some thoughts having experienced this kind of thing before I retired. First, fatigue/tiredness is probably down to the SAH, but regardless, you are feeling it whether or not it is from that so you need to deal with it as best you can. Second, you are so busy doing your job you have little time for anything else - and that can't do anything but wear you down, eroding your general health, your time with your family and your work is taking over control of your life. It's time to arrest that and take back control. Your last sentence says it all, but you need to stop thinking about it and just do it. Take a couple of days off, get yourself a pen and paper, find somewhere quiet and go through what you do each day, both at work and when you get home. You need to break it down and look at what you can delegate, set specific time for your admin, take regular breaks, even if only for ten minutes or so. Even at home, can someone else do the washing up or hovering, making the beds etc. Can you take the dog for a walk just to clear your head? Learn to say 'No.' It sounds to me like you are very conscientious and take on everything that comes your way. Can you get someone else to do the task and you just oversee it instead of you doing it all? Make time for your husband and family - do some quality things together or you will be in a rut and they will begin to resent being always in second place. After all, don't you go to work to make things better for yourself and for them? Yes, you have ambition and your career is important to you but you need to re-evaluate why it is important. You should look at it this way I think - family first, career second. The first is your bedrock, the second is your means of ensuring its well being (including yourself). You will be no good to anyone if you gradually get weaker and weaker to the point where others will start asking questions about your competence and your ability. So, well done for recognising that something needs to be done. Nothing stays the same forever. What you must do is recognise and make the changes required and don't stand still, because when you do that, you get left behind. We all do things best from a position of strength, not weakness. When you enjoy your family, you enjoy your job and you do it better. You're a smart lady. I know you will heed this. Do it for your family, do it for your career but most of all, do it for yourself. Good luck, Macca
  29. 3 points
    Thanks Clare. This is definitely a journey - one I feel stuck on unwillingly but determined to not let it get the best of me. I honestly don’t know what I would do without support from fellow survivors. These “out of body” feelings I have been getting lately sounded a lot like the “weirdness” described above. It’s nice to know maybe it’s not something scary - like a stroke I had a neurologist explain to me recently that an ischemic stroke is in a completely different circulatory system from a SAH - this was helpful to know since every time I get a headache, or feel confused or dizzy that seems to be what I’m always fearing is happening to me. I think i need to accept that some of these symptoms are just me recovering. xo.
  30. 3 points
    I thought it might be useful to start a thread on this subject as have seen a few comments relating to mindfulness recently and it’s a big interest of mine and wanted to share some thoughts and some of the experience I have had with this. I had explored meditation long before my SAH and also used to do yoga regularly right through my twenties and then I had children and life and busy got in the mix and I let it slip away but about 12 months before my SAH I was running a wellbeing programme for work specifically about how we could Improve resilience and started reading and learning about Mindfulness. I visited the Oxford Centre of Mindfulness which is one of the leading organisations in the world and thanks to my meetings there I started to practice mindfulness. Then in March 2012 I had a major SAH but interestingly once I started to be ‘in the room’ a bit more I realised that I was just naturally practising some of the mindfulness techniques I had learnt, like staying in a moment and being kind to myself. Now I couldn’t have told you I was doing that or what it called but reflecting back I can see my mindfulness practice and habit was helping me learn and adapt with my newly aquired condition. That said there were were times when my brain did not want to be still or meditate and I learnt never to push through that. It’s about respecting where you are in any given moment and what worked yesterday and may work tomorrow may not work today and that’s ok. nearly six years on and I still practice my own adapted form of mindfulness. I do mindful movement and also a loving kindness meditation most days and last year also was invited to train from my contacts in Oxford as a Mindfulness in Business trainer which I blog about and run S essions at work. That has got me wondering whether I could maybe put some basic sessions on here for dealing with difficulty, and breathing space. I’ll check with Karen and the other moderators and see what the thought is as to whether that is useful. I attended a talk at the end of last year and heard Jon Kabatt Zinn https://www.mindful.org/jon-kabat-zinn-defining-mindfulness/ speak and got to do some meditation with him and hearing his views and why he developed MCBT has strengthened my view that bringing peace and pause into each and every day has been an important part of my recovery and continues to be a key component. Wins not far off when she says ‘no stress’ ...I also am a big fan of uni - tasking now. The best ‘self teach’ course I recommend if anyone is interested in doing this on the book by Professor Mark Williams and Danny Pelman. Finding Peace in a Frantic World. . http://franticworld.com/ it allows you to do a 6 week programme and use this to establish a practice. like anything it doesn’t ‘ fix’ anything or make you better but if it’s for you then it may help you navigate the ups , downs and bumps with a little more breath. Always happy to answer questions on this as a subject. I’m still learning but happy to share what I know daffodil
  31. 3 points
    Happy Valentines day to you too Penny So sorry you fell and banged the back of your head, really hope its less painful now. Bless you, It really shakes you up when you have a fall. I don't have a shunt but there are others on here that do. At 7 months, like you, i was not almost having a normal life back, it took me at least 2 years to get half way there. I had terrible dizziness, balance problems and double vision, emotions all over the place. Things will get better Penny, it just takes time. Hang in there and keep your positive head on You should be very proud of how well you are doing and coping. We are always here for you and totally empathise with how you are feeling. Sending you lots of positive vibes and a huge hug. Take care Love Tina xx
  32. 3 points
    Time, patience, love and prayers. It's so early. Pressure on the brain causes strange behavior and poor memory. Give him time. I send you best wishes! Chris
  33. 3 points
    Hello, and also a very warm welcome to BTG. So sorry to hear that Your dad has experienced an SAH. The good news is that he has survived..... despite the low survival rates. The past seven days have no doubt left you and your family traumatised as you became aware of the severity of what happened to dad, and dealing with the days immediately following when you were scared that he indeed might not survive. Your daily routines have no doubt been turned up sides down as you have rearranged your schedules to spend time in the hospital. It is a very emotional and exhausting experience. So glad you found the site early and that you are already finding help and support as you read from the experiences of our members. There is so much within the various forums to help you in the days ahead. As others have said, seven days on is very early to gauge recovery. Only in the coming days, weeks and months will the true extent of the trauma to his brain become evident. Time spent in hospital can vary from days to months, and as every bleed is unique, there is no one given path of recovery. For some, following several weeks of very anxious times in hospital can be followed by substantial progress, while for others there may be prolonged hospitalisation and rehabilitation required. Please be prepared to have patience... and trust these incredible medics in the early days. Ask them to help you understand how they are assessing your dad. Please also ensure that you and your family take care to look after yourselves. You need to be strong for dad, so eat well and sleep well as you spend time encouraging him in the ways mentioned above. We look forward to you keeping in touch and continuing to ask for help and support. Subs
  34. 3 points
    Thank you so much. Thanks for the reminder to keep talking. It’s hard when you’re not getting any response, but it’s obviously so important. I really am so grateful for this site. It’s the most positive thing I’ve found.
  35. 3 points
    Krislwal, I flew again 1 year after the event, I visited a place in Turkey that I had been to regularly, knew the owners and knew that they would look after me if anything went wrong. In fact I still visit this place twice a year as I am now very friendly with them and many others in the area, most of them Turkish people. In the early years I did research medical facilities before I booked anywhere, mainly because of my heart problems. Now I don't even bother. I have been to many small islands that depend on sea transfer for medical problems plus everything else, nothing on the island at all. I never even think about it now. I am of the opinion that what will be will be. I might add that I always travel alone so I have no one to rely on either. There is no point in worrying about what might be. In fact I have just booked to go to a Cape Verdi island in April and medical facilities there are very sparse. I no longer let the lack of medical facilities put me off going somewhere I really want to go. Life is for living and enjoying not to be spent worrying about the "what ifs"
  36. 3 points
    Hi Lyn Its mad to see so quick we’ve all been treated in same place! Yes I agree on the blur, it really bothered me first time around,but now I just think I can’t remember that!! And I just laugh it off, now all my clients keep getting a new hairdo 😬🙈😂
  37. 3 points
    Thank you very much for sharing your story. I hope I get to a place of acceptance one day very soon.
  38. 3 points
    Hey Kris, I think with any sudden, especially unpleasant event that happens there is natural reaction of ‘why’’how could this happen?’ And I for one have become very curious to learn more about how the brain works for instance and how it heals but I do think with NA SAH and SAH is they Just don’t know what is cause or reason for the bleed. Maybe in our lifetime, as more people survive what they didn’t previously then we will learn more. i found this Mesdcape article https://www.medscape.com/viewarticle/559142_1 quite useful as it offers one explaination and cites studies for the difference between non aneurysmal SAH and SAH and why treatment is sometimes different, differing lengths and why one prognosis can be more hopeful more often than not. I realise its worrying to think your brain bled and there is no indication why or where from but I guess sometimes it is possible that can spontaneously happen in other parts of the body right , maybe like a nose bleed, so why not the brain as well? Blood pressure raises maybe, finds a weak point...like any plumbing we will fail on a weak point. The answer is just not known..yet ...but if you want to help medicine and research get there faster then offer to Be part of a study maybe? You might enjoy that purpose? I don’t know why I had a burst aneurism, I just know I did and As Macca says we then learn to live with that uncertainty for a bleed and realisation of the extent of things we can’t control. I for example have a shunt which to put it crudely is like a toilet overflow device for my brain and also have a coiled annurism with a neck and another teeny one lurking ., but here’s the thing, I can only influence the things within my control of that...and for those three things in my brain that is precisely nothing. So I take care of myself as best I can, eat and sleep well, live life and try to let go of my worries so I can better deal with the actualities as they arise. It serves me better. So im not belittling your interest in ‘why’ and natural anxiety that it could happen again but try instead to give yourself permission to have that worry and then try to move to a level of acceptance that it did bleed and you survived and it is highly unlikely it could again and instead notice all that is good and improving for you. Take care Kris.
  39. 3 points
    I felt like there were 2 phases to dealing with this event for me. #1 )the hospital phase and #2) the next 3 months phase. You are entering phase 2 and it has challenges too. The strange sleep-wake cycle thing was frustrating. The headaches and sudden weakness was (and is) hard. Dealing with work and family is a part of this phase. My emotions were out of control, too. Its funny in retrospect. You will have new challenges. Good luck. I really got more useful help from the people on this forum then from any doctor! Just relax, its like a rollercoaster. Once you are strapped in and it starts moving, you just have to sit there and take it. There is nothing you can do. I did a lot of walking and drank fluids, that helped. And whatever you do, stay away from stress and stressful people! your brain is injured and doesn't need that right now. They call it "cognitive rest". I call it "stay away from stressful people."
  40. 3 points
    Happy anniversary super after reading this I have hope I am sure it will give many more hope thank you for sharing this and congratulations on getting this far all my love Andrea xx
  41. 3 points
    Happy Anni-Versary Super - you're certainly and inspiration for people who may think that their life is over or crave for the person pre SAH/NASAH. You're living proof that life does go on and, indeed, can be better than it was before. Here's to many more journeys and experiencing many more cultures xxx
  42. 3 points
    Thanks everyone. All very helpful. I had no idea that it could go on that long. For some reason I thought it would be over a few weeks after getting out of hospital. About the time the course of Nimodipne was completed. I guess the first step is to get the MRI results and find out some information hopefully from the neurologist and answer a whole lot of questions I have. My boss has been very good to me and told me today he would do what it takes to give me the support required, for as long as it takes. That eases the pressure a lot. Thanks, Mark
  43. 3 points
    Sleep is a necessary part of life. It is brain recharging and maintenance time. After SAH many of us feel fatigued and we therefore become more conscious of sleep and it's importance. It takes a long time for the brain to repair itself and it does a lot of that, I think, when we are sleeping. When we are awake we are draining life's battery, and when we sleep we are re-charging it! Embrace it and let it do its job is what I say. It's the body's natural way of dealing with the problem, I like to believe. I am over 7 years out now and still need to sleep more than a 'normal' (if that is the right term) person. Three and a half months is no time at all in recovery from this event. Be patient and let him recover in his own time.
  44. 3 points
    Well thank you all for your replies. Win you had me in stitches ! I had a really sensible e-mail from the company that I purchased the eyelashes from and I was really impressed with their reply. The things us girls have to do..... Just need to stop poking myself in the eye x
  45. 3 points
    I think sleep is a fantastic thing! Healing and recharging is a plus for me any day of the week! If I need a nap I take it; most times I have trouble falling asleep, (I'm not sure what that's about) however, even just a rest where I close my eyes for a while is helpful. I've had tinnitus in my right ear since my SAH, and it gets louder as I get tired, so I have another way to gauge my sleep needs; the louder it is - the more I need.
  46. 3 points
    Now that is a question you must ask a doctor as we can't give medical advice. No you are not being stupid you are being careful.
  47. 3 points
    Good luck ladies - really hope that all is good xx
  48. 3 points
    Thank you Win and Chelle, and good luck to you too Tina. Definitely a nice cuppa afterward, actually I think a nice cuppa now wouldn't go amiss, think I'll get Joe on to it.
  49. 3 points
    Yes I can relate to thinking problems. I was pretty hateful to the speech therapist in rehab because she would always want me to do things that made me struggle...made me realize something had happened to me... I came home struggling in the kitchen...couldn't remember all the ingredients in a salad, seems simple right, but just couldn't do it. I felt like life had become a puzzle that was constantly challenging me...Coming up to 9 months now and I am better but not back to normal...but I think I will continue to improve and perhaps find a new normal... I will still roam the supermarket going back and forth looking for things....if I don't make a list in the order of the store aisles....thank goodness I know them... When I am tired I am much worse so I aim to do more difficult things when I am rested...I think you may be surprised how things improve....I only realized this when some time went by and I could look back... I feel lucky to be able to work on getting better most days...but other days I struggle and feel a bit down....one day at a time.......
  50. 3 points
    I remember a time in my recovery that my words would jumble,or my words didn’t match my thoughts. I humiliated myself on several occasions with sales clerks and such. It is really frustrating. I seldom have a problem now unless I’m very tired or upset.