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Daffodil last won the day on June 25 2016

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About Daffodil

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  • Biography
    Mum of two daughters, married living in leafy buckinghamshire. I had a Grade 4 SAH and presented with acute hydrocephalus in March 2012 when I was 39 but the bleed was was successfully coiled ( just a teeny neck left) and a drain fitted to balance fluids. I spent a long 7 weeks in hospital before discharge with a fair stint in HDU . Unfortunately my hydrocephalus reoccurred post the SAH and I was readmitted with flashing blues and ended up spending another 4 weeks eating the hospital food and having an adjustable shunt placed in July 2012.

    Now nearly four years on and life is more steady for me ,I'm back working part time for a large consulting firm in HR strategy, my neuro folk check my coiled and the second uncoiled anni yearly and despite there having been lots of bumps in the road with some grey days ( excuse the pun) throughout it all this forum has been a very helpful and reassuring place to come for help.

    I'm mostly enjoying some better days now and am now privileged to be a moderator. I also started blogging whilst in hospital having my shunt placed and still blog occasionally about my experience .
    If you want to read my more Personal account of my SAH recovery you can find it at http://popgoestifty.blogspot.co.uk/
  • Location
    Bucks, UK
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    Swimming and baking
  • Occupation
    HR Consultant
  • SAH/Stroke Date

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  1. New card from Headway

    Good to know Greg, let us know when you have a chance to use it. I have ordered a 'please offer me a seat' badge and card from London transport https://tfl.gov.uk/campaign/please-offer-me-a-seat for when I go to London. Whilst I normally take my stick I don't always want to and wearing a badge I hope will mean I get a seat if it really busy ever. Using it next week for first time so will will let you know how I get on, Anyone else have experience of these ?
  2. It would be great if you want to introduce yourself FRM , its always helpful to others to hear the story of why people are here and share experiences where you may have questions. having had neurologists, doctors and others professionals come through forum in the past it is always great to get some scientific explanations and insights of SAH . I hope you are doing okay with your recovery and go steady
  3. Yes you may notice that some people will react differently to this current version of you. Some changes for you may be temporary, others more permanent. Post my bleed I almost had a Tourette's level of honesty. I just said everything as I saw it with no filter. I have relearnt and applied a new filter in the years since but I definately can say the people who are important have stayed with me, the others ? Well let's just say I just enjoyed their company at that time, that place. I don't begrudge them that they can't or don't like this version of me. Everyone changes.
  4. Filfoot. I read with interest you report the 'taste of blood' as I had that many times and of course it sent my newly acquired post SAH anxiety levels soaring. The doctors all reassured me that I wouldn't be able to 'taste' the blood as it reabsorbed but my brain was telling me otherwise. Most odd indeed. Totally unexplained. And I guess that's what I wanted to say, you are going to get a whole host of strange sensations post bleed. When they happen you will connect them to your bleed and there will be worry to boot but my advice is to wait and watch. Get yourself somewhere comfortable, and just notice. IF things start getting worse then you need to get checked out but if they just are there the chances are it will pass and so if you can teach yourself ways to relax that works for you whilst that is going on. I and other members have speculated that sometimes the feelings reveal a phase of healing afterwards but that's just us pondering aloud and hey if that though helps feel free to use it. As others have said go steady as our MD survivor shares above, they may not have found a cause but you have had a blood spillage where it has no business being and that will have effect. You need to slow down and let yourself heal and that may be invisible to you and others but healing is happending and that is exhausting. Be patient, listen to yourself and your body and in time you will see improvements. Take care now and welcome .
  5. Hi FRM, you will know from being a doctor how the impact of having blood in the sub arachnoid space is not a great thing for memory and cognitive function but I also imagine you will have characteristics that will encourage you to push forward and test limits. That's ok but go steady with it. You may may find it worth keeping a diary, ( some good online ones) which let you track how you are feeling and what runs down your batteries fast. Back to to work is very much based on each individual but I think whilst you are finding the effects of the bleed it is best to put plenty of rest banks in the day when you do. That's quiet and no stimulation. We have had doctors herwho have returned to work after a SAH. I will try and find a link for you. My advice is go at your own pace but try to find your warning signals and heed them. I have a friend you is a neurologist and she suggested I think in terms of traffic lights and that has helped me. I try not to run any red lights, if I need to stop I stop. It's important for my well being, emotional , pain wise and physically . I am back at work post my SAH but life is different. So no I don't think your career is over just maybe you have to re- evaluate goals and remember you have had a bleed and be considerate. Take baby steps, build your strength slowly but steady and good luck.
  6. Hi Luke, sorry to hear about mum but glad in a way they are looking to help her recovery and the shunt operation whilst a really big deal for everyone to consider can also bring some real change too as Win attests to above. I had hydrocephalus with my bleed, had an EVD placed for many weeks and then removed before discharge and then less than three months later I was back in hospital where it showed my hydrocephalus has not resolved as they thought and my ventricles were too damaged to do the job properly. End result, shunt operation after a fair few Lumber punctures didn't kick start anything. When you have hydrocephalus like this it seems that we may have some absorption of the cerebral spinal fluid but the ventricles just can't keep up and after time the build up just shuts everything off. It is like a shutting down of all the senses. I can still remember that feeling, like my lights were being switched off one by one and so when Win talks about lights beings switched on after her shunt operation I always smile as I know exactly what she means and feels like. If you go high ( or low) pressure everything starts feeling wrong, nothing works properly and so then you have the effects of the bleed and have to cope with the pressure effects combined with it so it's like a double whammy of cognitive symptoms So a shunt operation is a scary prospect but but I can honestly tell you that it is also life giving as it gave me back a state of balance and equilibrium my brain desperately needed to be able to get on with recovering from the bleed. Five plus years on and I do still get some challenges with my shunt but for the most I am steady and that's all I aim for. My toilet overflow device, or James as I call it keeps me up and about and for that I am thankful and I hope it can do the same for mum. Mum may feel very poorly post op, it does takes a lot out of you like any big procedure does and then it will take her time to get used to having the shunt as well. She may feel very nauseous and light and sound sensitive at first and so trying to help with that is good and body temperature can rocket up and down at will at least it did for me , so have blankets to hand, bed socks, eye masks. She will need to rest and sleep and sleeping propped up was very helpful especially in the first few months and even now I never get up from sitting or lying fast, that's not a good look! She will also has to have her hair shaved again which is annoying and so maybe try to find her some soft hats that she can wear post op as it heals as it feels quite sensitive. she will also have a incision on her abdomen from where they place the tube. I recommend reading some of the literature on the SHINE charity site and applying for a SHUNT medical card which she can carry, it's quite a good place for information . Good luck whatever your decide. Tell mum we are thinking of her. daffodil
  7. Bonjour Alex, I hope your brother continues to improve, it sounds like he was treated quickly and that will help him as will his young age as well as he begins to recover. I was told quite quite a while after mine that the damage caused by a bleed is different to a traditional stroke because when that happens the clot blocks and damages a specific area whereas when a bleed happens it soaks the surface of the brain and the impact of this means our short term memory is often one of the things most affected. It isn't not that he hasn't got the memory but his function to file it as a memory is impaired. will it get better? Yes I hope so, many of us see improvements, some of that is healing, some is adjusting and learning but for the most it gets better, I was like your brother and Clair and could remember nothing and even now if I don't pay attention I will lose a memory of something said to me , or something I did. I shared some tips on this after attending some sessions with a SAH patient group, it might help main thing though is try to help your brother do things one at a time for now. Don't talk all at once, if there is background noise know he may be slower to respond or remember, be patient as he tries to recall things and try not to worry, it's a slow process but you can have hope things will improve. Bon chance. (You have excellent English by the way)
  8. Tinnitus

    Tina, so pleased you had a holiday and that would have been good to just rest up and slow things down. It will also help with confidence after the bleed. My tinnitus still lets me know if I am doing too much, it is one of my early signs, ( which I ignore too much and too often) that I should stop and rest as it jacks up the intensity and volume. As I have said I just try to sit with it and that works best for me as it makes me pause and that's what I need at that moment. i ignore it at my peril really but I see it as one of my amber lights rather than a hard red stop! Take care, go steady
  9. Tori, it's wonderful that the rehab is having such an impact. Please tell mum that she is not stupid from all of us here. There have been times I expect most of us have uttered that phrase when something we could do so easily before takes so much effort now or it's hard to figure out why we just can't do it. Frustration is a constant companion at first once pain moves over but it continues to improve especially if you always keep it xploring the possibility of a situation and are prepared to adapt and accept all offers and suggestions of help. I can look back and see so many 'regains' since my SAH and am fortunate that most of my physical ability is similar to before. It's not the same, there is plenty still I can't do that I did before and also that I just don't have the cognitive stamina to attempt but every , day, month year since has shown improvement. Keep looking forward. Take care and thanks for the updates. People will read and take comfort from your sharing ..
  10. SAH/Stroke/CKD

    Let the tears flow Shobs! Well done you, well done Sandeep, tell him to keep up the good work and a blessing on the steady hands of the crew that operated on him today and who will no doubt be helping another deserving person to'orrow. thats another thing in the rear view mirror for you now but go steady both of you. There's no rush. so pleased for you both.
  11. Hi Dotty, hope Dad is keeping stable and the hospital team are looking after him. Hope you and family are looking after yourselves too as its a real shock for everyone involved. We can't give you medical advice but when you say they haven't operated, not every SAH is operated on. It maybe be worth asking whether he had a visible aneurysm burst that they can see on the scans or if the source of the bleed Is not known. That way you know the facts. To explain that, we have lots of members here who have had non-aneurysmal bleeds , NaSAH, which basically means no cause was found for their bleed but it can still be a severe grade bleed across the surface of the brain. People who have NaSAH don't usually have any interventions to 'fix' the bleed orgin. . Those that have SAH , also a bleed across the dura of the brain , usually have an aneurysm visble on scans which is presumed to be the origin and then we go on to have clipping or coiling or stenting. Some of us also developed complications from our bleed, (these can more often be associated with higher grade bleeds but anyone can experience them, ) including hydrocephalus, ventriculitus, and these may require other short term interventions or surgery to place drains or sometimes long term solutions like VP shunts. There's some better explanation of medical terms related to SAH in the glossary posts on the forum pages. http://web.behindthegray.net/index.php?/articles.html/sah-info/ The main thing I suggest is to talk to your hospital about Dad, what is the plan, what can you do. how long will he stay? Get a good relationship with his team. he is needing you to be his advocate right now so try to find out as much as you can and then also give him time to begin his recovery as well. He will struggle to concentrate and take in any new facts, he will get confused in his surroundings and with events and this will change each day. My family were were told to expect the worst too and it was touch and go but the reality for me is I don't recall any memories from my first week and for a long time after that it was like Groundhog Day for me and then I could do a fraction of what I could do previously for a long time afterwards. . Reassure him, be gentle with him and each other and offer plenty of encouragement. This is very early days for Dad but the fact he has a good swallow, has recollection of you all is reason to hope his recovery will continue to show a good rate of progress. Confusion is not unusual but if you think he is getting worse or the confusion is increasing then that is worth highlighting. take care Dotty and Dad. Good luck
  12. 2 Year Anniversary

    Chris, we are fortunate to have you amongst us as your words are always kind reassuring and helpful to others and it's great you took the time in your own recovery to also try to help others not feel so alone which be fair we all feel after our respective bleeds. i love the fact you are back to running and you get to 'nod' near the tree when you feel to your knees. But you got back up since then and recrafted yourself and adapted to changes. Well done ! Hope its its a good fall full of beautiful colours for running and that you keep improving.
  13. Hi Clara, some great advice and hopefully masses of reassurance to be gained in the responses above. when we have our SAH it can mean a lot of disruption to a whole lot of the brains normal processing ability.i attended a neuropsychologist led group a year after my event where they explained the effects of a bleed can really mean you struggle to process the immediate surrounding which of course is where we live most of the time. All of us are unique in the effects we realise as we each have unique brains and personality but common to us all is that our ability to cognitively process new events, memories, conversations, sounds, sights which prior to SAh we take for granted takes huge energy for the brain to do . However our brains processing channels get damaged and disrupted by the soaking in blood and it just can't seem to do it as well after this disruption. This damage may be temporary or some may be more permanent and you need to learn new coping techniques. My personal theory on it is that the more 'cognitive' things we try to do whilst the brain is trying to heal from the blood spill and any subsequent surgery then all the more we will get signals that we just can't cope with the 'noise' 'conversations' 'lights'....the list goes on. So it's about pacing yourself and building the stamina up slowly and testing your ground. Can you do this yet, how long for, and go slowly. Skippy is right , if you broke your leg you wouldn't be back out on it expecting the same performance, your brain got hurt, it needs time And investment to heal and remember it's still trying to run the rest of the show so even more care needed. i also had PTSD which made me very unpredictable but counselling helped me also. when I came out of hospital I couldn't look at a screen , couldn't watch tv, couldn't follow more than one train of conversation at a time and if two people talked at once I was lost. I built up gradually, had gentle exposure to tv, I kept the radio playing low most days and kept trying to be in with people but I let them know why I was struggling and why I might be a bit 'tricky' to deal with. Some get to pick up where they left off but many do not and so we have to go slow and observe and realise what is possible today. Be kind to ourselves first and don't beat yourself up. Tomorrow it may be difficult or easier but the main thing is to keep having hope and don't push too hard. Take care.
  14. Tinnitus

    halla Tina! I love Sweden, I used to travel back and forth to Gothenburg for work for a while pre SAH and it's a beautiful country filled with kind people. Tinutus is something I found myself experiencing in quite a heightened way in the first year just like Tina did. I also have a friend who I have made from a SAH support group at my hospital who has had it ever since as her main lasting effect but it is horrible and unsettling and puts you on edge. i used to just sit with it if that makes any sense and observe it, rather than trying to block it out I just noted it wasn't getting worse, the changes in sound and pitch and after a while it has mostly faded into the background. I have a permanent 'buzz' these days, a bit like a badly tuned radio but I rarely hear it but if I do too much then it will always get louder so my own view is that it does relate to how steady you feel. i also had lots of 'creeping' feelings across my head and scalp and whenever that happened I would worry. I think worry is natural after what has happened, A sudden traumatic event such as a SAH will affect you emotionally and once you have done some of the major physical healing then the emotions can start to show. If you can Tina try to talk to someone , talking always helps if not write it down, that's cheap therapy too! Take care.
  15. Another new member....Rachel

    Hi Rachel. Like you my SAh came out of nowhere and I was 39 and generally fit,, active and well. The discharge is basically saying, there is nothing more medically we need to do to 'fix' you but you are only at the very beginning of a slow process to establish what changes have happened in your brain and how that may affect you. You should get a six month check up but check in with your GP too, it's worth them knowing your situation. Great you have made contact with Headway, they were great with me too. Brain and Spine foundation have great literature and booklets you can download and a nursing phone line you can call as well if you get worried and I would straight away get in touch with Bristol neuro team and ask if they have any support groups for SAH patients. The first six months is about a very physical recovery, you may have lost weight, definately will have lost muscle tone and vital minerals so it's about being kind to yourself, the following may help: Eat Small frequent healthy meals and snacks keep hydrated if you exert yourself rest afterwards learn to pace yourself dont push through warning signs Try to create a routine avoid over stimulating the senses I found it useful to keep a diary of what works and how I felt . I'm not going to lie and say this is a quick fix, it wasn't and still isn't for me but each SAH is diffent and your recovery will be governed by the grade of the bleed, where it was and how healthy you were before hand and a good sprinkle of hope and luck. Try to measure your progress from the ICU days, that's my best advice. Take care.