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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
  • Interests
    Swimming and baking
  • Occupation
    HR Consultant
  • SAH/Stroke Date

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  1. Hi Penny glad you found this helpful. Like you I came looking for some help some months after having my shunt placed when I felt dreadful and a little lost as to what happens next. I found my google search led me to BTG and it’s a place where I found honesty, practical advice, shared experience and compassion in our bewilderment. I’ll try and answer some questions but as a snapshot here are some of my timeline highlights. I had had my drivers license revoked for over 13 months. It was a long time without mine and apply as soon as you can as the DVLA is not quick but I wouldn’t and couldnt have driven sooner, even after I got my license I could only do short journeys , struggled with night time journeys but now nearly six years post SAH I can manage longer drives and short night time ones. When you are without you can gets free bus pass if you don’t already qualify. i was off work for 16 months and then when I went back I did 5 hrs a week. Yep 5! I built up slowly with help of employer and after two years I got back to 16 hours a week and still do this now and that’s my absolute limit to balance with all the other life events like bringing up kids . Maybe in future I may find more reserve but it’s not there’s at the moment. dizziness and imbalance lasted a long time. Like you I enjoyed walking my dog but also swimming, I couldn’t get back to swimming as the way I held my neck swimming tires me greatly post shunt but I now walk every day and have a good level of fitness. You have to build up very slowly and give it time. i had to have help to travel somewhere by train at first when I started to gain more confidence and book assistance but now I can manage it independently but carry my stick and wear my ‘please offer me a seat’ badge . Last year though we almost missed a flight as I didn’t book assistance and I couldn’t get through the airport quickly, so learnt my lesson there. You asked what can you do? Well I learned fast to ask for help and not to worry what people thought , tbh hadn’t paid much attention to that pre SAH and I figure most people like to help and if they don’t well then let that ship pass. It took a long time to get a new sense of balance and feel anywhere like my old self. I can’t tell you that I do now, but I feel like myself if that makes sense. I know this version of me a bit better now and I think that’s what is so hard in the months afterwards. Our lifetime of knowing our brains and bodies is emptied out and we kind of have to start building that new knowledge and find new limits and new ways. Be curious Penny about what Is possible but be kind with it. When I couldnt walk the dog I sat in a chair in my garden with a ball thrower. Not the same but we found a new way for that moment. And now I can walk two miles or more...but always with my stick . And that’s my new normal. And but I’ll take it over where I was in the months straight after so I see it as progress and also how fortunate I am to get as far as I do with just my stick . Just try be kind and give yourself the consideration you would offer a friend in the same circumstances. So Does it get better? Well I hope with time it will improve for you as it has for me.
  2. Penny I saw on your other post that you fell and wanted to add to some great replies you have had already that it took me a very long while to get more steady post having my shunt operation. I have one one word for you. Pacing. i hated it when I was introduced to it by Headway but realised I was still trying to tackle things at the pace I had prior to my bleed and having my shunt kit installed and that didn’t work anymore for me. I had to slow it all right down. Relearn a new pace. frustrating? Yes and like you I worried the balance and dizziness wouldn’t get better and wanted to just push, push, but actually I needed to do the opposite. Time will reveal your improvements. The worry is natural but won’t help. But putting a pause after every action, task, activity will. Don’t run things into another, put those breaks in and that can help build you stamina and possibly balance back up. a few things to consider. Your brain is dealing from the injury and insult fro your bleeds and brain surgeries, it’s had compression from the hydrocephalus and now it’s adapting to the rather clunky state of how it manages the CSF pressure, it’s not a fast reset button. I still get affected by changes and swings in air pressure and when it’s really low pressure I am rubbish in many ways and often have to sit a few of those days out. Us shunt girls and boys have a lasting condition resulting from our SAH which itself also has an effect on day to day living and has to be considered alongside the effects of the SAH but yes I think it really can get better, we all attest to that. Have you maybe considered chatting to Headway , see if they can offer you some help or support? It’s hard being at home and trying to cope with everything on your own, another set of eyes on it can help and bring comfort sometimes Take care x
  3. Shunts

    Oh Penny, I feel your frustration, for some that effect of the hydrocephalus mixed with wherever your bleed was may mean things take longer. it took me a long while to get out with the dog and I did used to fall more than i told my family consider also the effect all this has had on your fitness and stability so you may want to practice some basic sitting balances and strengthen the core up. Slow every action down. Put a breath and pause between each movement. So turn, pause breathe, get up, pause breathe before walking. If you bend over, come up very slow and hold onto something. Notice what makes the dizziness worse and also maybe look at what you are eating and how often you are eating and get a blood test and check your vitamins and iron etc are ok. Sending a hug. I hated the first year post shunt as it was so unpredictable but it will Improve. Be gentle.
  4. 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
  5. Hi, there is a word for it, it’s called Aphasia. For many it is a symptom of brain injury that goes away as the blood disperses and the healing continues but for others there can be some more permanent lasting effect of this. i had it explained to me that language can be impaired similar to forming new memories, it seems blood ov3 the surface of a brain can do some strange things so it’s not we have a bad memory now it’s our ability to form and then recall memory is damaged, and the same can be for words. And so it’s takes time, new techniques to deal with it. i had Neuro physiologist conduct cognitive tests about 15 months out from my SAH to assess and help me where my defecits now were and that’s helped me and I could share the report with work which also helped make adjustments. Every bleed is different so if you feel you are struggling then I would push to be assessed. its early days for you so be kind to yourself and just slow down, Super Mario offers sensible advice to do one thing at a time. at first this loss of words and struggling with my new speed of processing embarrassed me especially if I said the wrong thing or couldn’t find the words but a bit like others the extent to which I do this has lessened over time But if I am am tired or try to do too much then I lose words and jumble them and now we can just laugh about it but I did find it quite distressing until i learnt to heed it as a signal I was pushing my brain too far in that moment.
  6. Lowey family post

    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
  7. Headaches worse at night?

    Hi, agree with all about getting a v pillow and sleeping with head raised. Even now I have three pillows and can’t sleep entirely flat anymore unless I want an increased headache. i presume her bloods will have been checked recently? Sometimes the headaches can be chemical or m8neral imbalance ?if she is getting less outside time you may want to ask for her vitamin D levels to be checked. Mine went very low after discharge having been indoors so much and I was prescribed a vitamin supplement and also I have to watch my iron and get that checked regularly now...may Be the absorption rate for what we need is different after bleed , who knows, but basically check this as option for headaches with GP. If all is good then it could be a bit of worry and fear as well, try a good relaxing routine and see if that helps and don’t Be in a rush to get out of bed and stand up fast. But if it doesn’t improve then I would be asking them to check it out.
  8. Travel Worries

    Hi Swishy i understand the fear I honestly do and in fact Super Mario was my inspiration to just push through and gradually I’m spreading my wings further , shes right , you have to push on. like you I was worried to travel far so here’s what I did, for reassurance I created a very simple one sheet laminated medical history that I carry with me. I also have a letter from my doctor translated to the local language Explaining need to not go through the scanner...( not advised with my shunt model) that said first travel no one would insure me, ended up in tears after being declined for third time after long assessment, eventually found a company and that first trip insurance for me cost as much as all our flights! It’s come down thankfully. Then there was dealing with the impact of the travel, noise, air pressure from flying , well I drank lots of water, slept on the plane, kept ear plugs the entire journey and we now we know try to book flight times or travel when that suit me better. my family know that I am pretty much out of action the day after long travel and so not to worry too much but we have had a few instances where it’s all been a little worrying but I wait it out and I usually end up sat in the shaded sun , by a pool with a good book and then it’s worth it. Like you I used to travel a lot and was a frequent flyer and I look back nostalgically at how I took for granted the ease at which I could move continents. my ambition is to go transatlantic which I haven’t done since ...just need to build my confidence that I can do that. But I know it’s fine it’s just like you I don’t want to scare and upset the children by becoming ill but then I need to let thst go I guess, I could just as easily get a stomach bug! . Reminds me need to book this years insurance...we are off to Portugal!
  9. Kris, you will but it’s a gradual evolution and some days harder than others. Gemma, so lovely of you to share that update, you had such a barrage of tests and I’m glad you are doing ok. I know what you mean about the ‘general existence takes all my energy’ but I have suddenly found after plateauing for a while and now nearing 6yrs on that I seem to have a tiny bit more energy in my bank so again I think our cognitive stamina continues to improve, slowly gradually, unseen but it’s there in tiny increments, take care all. Kris, we walk this path together x
  10. 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.
  11. Long term neck aches

    Hi Hellsbells, I would definitely notice when your neck pain is worse, maybe check old pillows or Look at screen time which can be a causal factor and then get a medical view if it’s still not improving. my neck was stiff post SAH for a good while but now when it is I put it down to the stresses of the day and I give myself a gentle neck and shoulder massage before sleeping with an oil I like. It helps me sleep and relax. as for your other question I would say that yes it is quite likely that the ability to concentrate when there are lots of cognitive demands and competing noises around you can be as a result of the SAH. Again post mine I had to wear ear plugs and sunglasses a lot of the time to help me block some of that out, now rarely I do but they are always in my bag ready to help me dial things down if I need to.
  12. Well done Issy and family for working through this and sounds like a very pragmatic sensible approach. You could also look at training and being a celebrant maybe , so conducting funeral services rather than being in the funeral parlour as that also requires a level of compassion and dignity that I’m sure your orevious job and experiences have afforded you. Take care, I wish you luck and keep us updated how it goes for you,
  13. Looks good Karen and I think maybe he was treated at The fabulous National Hospital for Neurology and Neurosurgery in London which is where I still go annually as outpatient after their lifesaving work for me . I owe them a big debt and still greatful I was in London the day my aneurism burst! Also adding to this thread the programme from Channel 4last week , it’s available to watch for a few more weeks. http://www.channel4.com/programmes/can-you-rebuild-my-brain Lotje had a SAH four years ago I think but wasn’t found straight away. This is more about her investigation into advances than her story but was interesting I found. She also did a film on Netflix, ‘my beautiful broken brain’ but I found that impossible to watch with all the effects in it,
  14. This who have read my posts know I do like a good analogy. I see our brains as the power plant behind our entire physical energy operation. The brain dictates the pace of everything we do and think within our physical bodies, the movement of our muscles and nerves, the capacity to feel. Immediately post bleed it’s like there is an emergency shutdown of the generators running the plant to preserve functions and nothing works or has the capacity to do what we did previously and then over time some operation starts to come back on line. BUT the energy and fuel consumption has changed for us, we burn our fuel and use energy faster, maybe it’s because of all the unseen healing going on but maybe we just changed our operation circuits. We get tired faster and so need to pace accordingly to how we are using energy, Sleeping is a great way to recharge the energy banks but pacing yourself in tasks goes hand in hand also. If you struggle to get to sleep it may mean you are doing too much without balancing with a short rest and you need to to inject pauses into your day a bit more. Also look at your diet, what else you are doing, Try and get fresh air everyday. This is about adjusting and adapting. Like Susan mentions Also look at your wind down for sleep routine? Does it include anything that demands a lot of cognitive effort, screen time, loud noise can all signal attention to the brain rather than ready for sleep so try to cut those out. Find a wind down routine that works for you and try to stick to it. Nap when you need to in the day but maybe not for too long no more than an hour. All that said in the first year I don’t think there is anything like too much sleep. I would have won a gold medal so I would just go with what feels right for you. !
  15. Carer new to SAH

    Hi Liz, it sounds like mum is in good hands with all her daughters and paramedic son in law to boot. Share the load and don’t take anything personally , mums Brain Is busy healing, post bleed back home is a very peculiar time. I discharged after 6 weeks in hospital and like most post SAH none of the family or I had much idea of what to expect. My feeling of being at home with my kids which was lovely was matched by a terror of all the horrid sensations that were being produced in my brain and body , not being able to do much at all and not really knowing what on Earth was going on or what the future held. It was terribly hard for a while if I’m honest. Talking is important, see if GP can get a counsellor or see if mum would pop on here. Sharing the experience really helps those feelings. The lack of filter is not uncommon, I said things I would never have dreamed of and became very intolerant and impatient in the months post discharge. Then I would feel ashamed if I realisedi had been awful to a loved one, which I was on occassion but it was like I had no capacity for those social filters. That improved and I would say I’m now a more patient and tolerant person than I was pre bleed. No appetite, sense of taste, I lost a huge amount of weight post operations and so key was never to get hungry. I had snacks over the house, drank build up meal replacement and also ate foods with lost of good brain food, eggs, avocados, nuts etc and make sure mum drinks lots , leave a flask out. sleeping, try her with a vpilow and slightly upright to see if that helps and make sure she keeps extremities warm, I got very cold very quickly. Also resting is just as important as sleeping so just taking time to be still and quiet. she is dealing with a lot in recovery, post clipping craniotomy operation, massive in anyone’s world but on top of that bleeding soaked across the surface of her brain , it’s going to take time which everyone who has answer has said. Try to take each day as it c9mes. Keep a diary between you of the good, and the bad , and write something everyday, note what food is working for her. My ambition since that time has has been for steady days but it takes a while to get there and each bleed is different. If you watch the channel 4 programme on catch up ‘Can you rebuild my brain’ it may help you understand where mum is right now. http://www.channel4.com/programmes/can-you-rebuild-my-brain Im sure others will offer more suggestions but to give you idea in the months after my discharge I couldn’t wash, shower or cook for myself, I could barely walk without falling and forgot everything. I was 39. Now six years on I still have mostly hidden deficits but I can walk, cook, care , drive, work and whilst my battery and energy is different I have regained a lot of skills and grown emotionally.