Daffodil

Shobs, if it's any help I also have a small anneurism which we do nothing with other than monitor and a neck on my coiled on and in the five years since neither has changed I am pleased to say. They will keep an eye on it. glad the angiogram went ok, it's an odd procedure to say the least with all the machinery in the room and lots of medical folk all peering at your brain up on tv screens all the whilst you have a fully exposed groin area ? Hope the sleep pattern is beginning to settle and the yoga is helping. I do think learning to calm and settle our ' over stimulated' brain can really help, finding ways to relax and be still is a good thing. take care.

Hi, as the others has said there is no 'standard' path for recovery in our bleeds. We are each witness to advances and progress in our own recoveries and those of people who are members but each will have a different story to tell. Patience, hope and a good sense of humour will serve you both well as you continue to assess and strive to see what might be a next ' regain' for your husband. And I hope there are many still to come. I hope the swallow test goes well for you and don't stop looking at the possibilities in his recovery. Keep being curious about what's possible, offer lots of good food and brain rest time and in time you will be able to see more progress. The best advice i was given was you have measure how far you have come from the moment of the bleed. When you start to use this as a measure it can be quite liberating but also rewarding to see the difference from the early days

Hi, I can't comment too much on the leg function as every case is unique. I was able to regain my walking relatively soon after my grade 4 . That said It was slow progress, and I started with a stick and had to use a mobility scooter for a while but I didn't spend as much time in hospital as your husband in comparison. Even after a much shorter stay though I had no physical energy or reserves, I had lost a huge amount of body weight and muscle mass and it was a struggle to coordinate and I fell often. Everything was baby steps so don't give up. Has he had physio? Sounds to me like a prime candidate for rehab and physio exercises. If the hospital aren't supportive then get in ouch with Headway and enlist their help to advocate for you. good luck. Glad that you are working towards this together, it's a long haul but progress is there to be made.

Hi Gemma. Welcome to the site and congratulations on your coming wedding but I imagine this has alll been rather a scary and hard time for you all and even though mum is now home I appreciate it is still difficult. i had a grade 4 bleed with hydrocephalus and had EVD placed, similar length of time in as your mum but was a little but younger than her. I subsequently had to go back and have surgery to place a shunt. That's not wishing to scare you but that it is something the doctors will be watching for , checking that her ventricles are working as they should. I am going to be very candid here and say that there is no way I could have physically coped with the rigour of the flight that soon after my bleed, I would have not had the energy or reserve to cope with it as I still felt too unwell. It of course will be your mum and her surgeons call. Im not wishing to upset you at all and I'm sure I would want to attend the wedding in her shoes and I pushed myself hard to get on a flight as my kids were young and I was so used to travelling very regularly prior. I knew that the effects of pressure adjustment would be hard for me and it was and still is to a certain extent.. I did my first short flight to Spain 15 months afterwards and that saw me needing a full flat out rest day afterwards and feeling pretty rubbish. I have flown a fair few times since then and the effects are far less as my healing is further on but still it wipes me out. Cognitively my memory, balance , sequencing and General brain state is massively improved since my bleed but I live with a brain injury and have to allow for that as my reserves and ability to do things will never equal what they were previously. They are different now, and your mums may also be but only time will reveal that fully but you will all adapt.

Johnnie, the great thing about this forum is you are included and welcome and just by sharing your experience you will help someone, they may never comment, choosing instead to be a guest or silent member but by letting people know what helped you regain, recover and get to where you are now whilst coping with everyday life and adjusting to living with your quadtroponia it will help them have ideas they can try and have hope. In return hopefully you as a member will get encouragement from others who whilst they don't have the same condition post stroke we know what the impossibility of a new situation can feel like and how hard it is to try and keep moving past that with a song and a smile. I had my SAH 5 years ago now and whilst I would say I have adjusted to the effects of my bleed and know it's impact on me I have been left with hydrocephalus which has more of an impact on my day to day not to mention the kit I now iphave in my head. But I wear hats to protect my head from sun, wind and rain and we go on. You'll get driving again and belting out those song tunes in high altitutudes. PS ? Love the fact your daughter sings on the west end. What a marvellous job.

Hi Tom, like Clare I also had an EVD placed initially after bleed and coiling and then later I went back in for more surgery and had a VP shunt placed. Post my SAH the nausea and sickness was bad and I lost a huge amount of weight like Clare reported as my brain was using all the calories to try and heal but I was hungry and keen to eat despite that. After I had my my VP shunt placed the sickness post operation was off the scale and that took a lot of time to settle down and I had to have anti sickness medication sub cutaneously for quite a while. What was important was not allowing myself to get hungry so having a meal Even if I wasn't keen on eating, I also drank those build up drinks to keep up my calorie intake. The shunt surgery is pretty invasive brain surgery and you lose a lot of CSF when they do the procedure you have the abdominal incision too which disrupts things as well and the piping is placed, well it's a lot for the body to get used to. I had a few months to be healing from my bleed before surgery but to have the two together must be a double whammy, When I have had low pressure CSF effects either after a lumber picture or as I did post my surgery then that always brings extreme sickness . If vomiting continues and there are other symptoms as well then it's possibly worth asking the shunt experts at the hospital to discuss if you have the right setting (if the valve is an adjustable one). What's right for one person may be too low for another, that was definately the case for me. Basically ask lots of questions, continued vomiting is not good and needs to be managed, nausea is harder as it puts you off eating and of course that's what we need t do most. So lots of what you do fancy but 'normal' could be a way off yet.

When I was discharged after 6+ weeks in hospital after my SAH I just was sent home but with not real direction of what to do next and just a few leaflets but after I went back to hospital for my shunt operation and was discharged again similarly with very little advice I knew I needed some hands on help. Id had some rehab and physio at hospital but it now was left to me and the family so we went after what we could. We contacted Headway in my area and they arranged for me to have an assessment with their regional community nurse. Based on this they offered me 8 sessions at home to help me learn and apply practical skills at home and to help me manage my new brain state and build my confidence. I got advice, support, education and made a friend in my nurse and even now on the odd occassion call and ask her advice. They offer very good practical help in the areas that they cover in the U.K. Now in some areas have HATS nurses who can help the family right from when the head injury happens, be it offer advice, help arrange emergency funds if needed and just be an advocate and go between at hospital . https://www.headway.org.uk/news/national-news/a-day-in-the-life-of-a-hats-nurse/ I know my family would have welcomed this when I was taken ill and if you're a partner or family member looking in you may want to see if there is someone in your area if you feel you needs some hands on help.

Hi Martin It's very caring of you to post about your sister so you can help ease her return home. It will be nerve racking for her and you all and she will be used to having the 24/7 care of the hospital ward at her disposal so it can make you feel a little vulnerable. Explaining to the the kids at home so they understand that mummy is not quite able yet to do all the things she did previously is important and also that she will need some extra help to get better. Having Things on hand that they could together quietly is a nice helping idea, like colouring books or maybe some audio bedtime story books so that can all lie in bed together. I missed that most with my littlies, they were 8 and 6 when it happened and when I finally got home that was the first thing we all did. I went to bed ( I couldn't read or concentrate at that point ) and they clambered in with me and we just hugged , listened together and I went off to sleep happy. Help with the food is so useful, not having to think about preparing meals so having some on hand in freezer or fridge and getting the shopping in , food shops are disaster zones with all the noise and people it's not particularly injured brain friendly , basically any practical help or arranging routines that you can give until she says ' stop' will help and give her the space to rest and heal her brain which will pay dividends. Same goes with the washing, Subs will attest to that, he's still doing it!!! If the kids are older they can help with some of this like organising their own school kit etc. The aphasia can appear to be funny to the kids, they think it's hilarious to be honest that you say the wrong thing or mix stuff up but that can be quite emotionally upsetting so noticing when maybe sister is a bit over stimulated ( losing words will go up a notch) and then suggesting some quiet time for everyone, turning down any background noise and maybe just quiet games or a gentle walk. If she can just try doing old stuff little and often to the limit of what she feels is ok and happy with then she will start to find any new limits, heed them for now and in time you will look back and see how far she has come.

hi Shobs and Sandeep. Welcome to BTG. We understand what an ordeal this has been for you and your family to go through and what may continue to be a challenge post the bleed so as Subs says members will just try to be offer support, encouragement and shared experience that may help. I was also 39 when I had my bleed, spent a lengthy time in hospital , and have a neck in my coiled anni and although I didn't suffer a complication of kidney issues I did have hydrocephalus so a little understanding of your trying to juggle the news of this 'new' condition on top of the bleed. Each day will bring extra confidence but also will also bring some fears as well and it's good to keep talking about those and don't let that build up and become unmanaged. im going to share some of my tips for helping with the sleep which is incredibly disrupted post SAH and maybe a couple might help. Forgive me if you have tried all this already . ban all screens and technology from the bedroom and make sure you use none at all for at least half an hour before trying to sleep. try and set a regular time for sleeping and have a wind down before hand, so shower, bath, whatever works for him Soft lights, cool bedding, darkened room and some gentle music can all help tell the brain now is the time to relax...I like to us a pillow mist spray .he may not! learn how to do a body relaxation, slow breathing, you could do this together, work at relaxing from toe to head and just rest, you may not sleep but you may also drop off but just learning to switch things off is a very useful tool a very gentle massage of his feet and hands can be nice, again, he should shut the eyes and just have the massage and when thoughts creep in send them away. Use a nice oil blend that is relaxing and he likes the smell of but isn't to' uplifting' I can suggest scents if you like write down any worries , wins and daily thoughts in a little book as the last act of the day before sleeping, always end it with his 'thankful' thought But if he does wakes up don't beat either of yourselves up up, if he really can't get to sleep at that point then decide to just rest or do something quiet but still give the brain down time. it sounds like he is doing a lot and asking a lot of his body and brain and the inability to switch off could be that it's just reacting to coping with all that so if he can slow it down and is open to that then I can promise it will pay divedends. I am a a big fan of the marathon approach to this recovery, my husband is a marathon runner so luckily he could coach me a little But it took me a while to understand it's not a fast process to regaining stamina and adjusting to a new operating state. And as for you lovely lady, scream, yell, cry when you need to and just talk to people, talk to us, you're not alone in this and it's very hard to keep things on an even keel. Yes he changed that day, it was a shock that's still reverberating and it probably still feels very scary and shaky but together you and he and you family will hold each other and find the way to the better days.

I agree with Clare and Super Mario, I think any onset of headaches should be investigated and with her history I would be surprised if they didn't think it worth a follow up. There are many things that cause headaches but if it was me I would be back in the doctors or phoning my treating neuro hospital and asking for advice. Most of the main UK treating hospitals have a neuro specialist nursing team she should be able to contact but if not then Headway or the Brain and spine foundation are both excellent .

Lindsey I have answered on your other post but as you can see I also suffered from this post my bleed which was in 2012. A few tips are to always get up slowly to standing, I still do this to this day if I don't then I would land on the floor pretty quick and I learnt that to my cost a few tims. sleeping propped up may help a little and also just noticing what cognitive demand you are having in the day. if your dad is using a lot of cognitive effort whilst he is healing then the brain just will make its own arrangements to cope with that. If he feels increasingly dizzy or symptoms are changing though do raise it with the neuro team as it shouldn't be getting worse.

Well done to all of you. The support you gave her was so Important but she is a determined young woman and I wish her the very best of life's adventures. Lovely she is helping others too xx

Lindsey well I can only say that a lot of what you describe was normal to me and I also had a grade 4 bleed and hydrocephalus. I had really really poor short term memory for many months after the bleed and having my shunt placed BUT I used to then make things up to fill the gaps if that makes sense and was always getting things wrong or confused or mixed up much to my kids amusement...it didn't amuse me much though. does it improve? well again we are all different and gave different bleeds but yes I have now relearnt new ways to recall things, I know my signs when I am doing too much and to slow things down accordingly which helps. My MEmory will never be as it was but actually now I retain things better as long as I remember them in the first place. The explaination apparently for this is we become better at retrieving memory's but storing and keeper them is harder in the first place. I wasn't allowed to drive for ages but even going in the car was a big of a trauma initially because of motion sickness. I remember the first long journey I took and I was in bits by the end of it, no balance, crying, it was just awful and I came here and people told me that it does pass and it does. I couldn't go on the train without help but now I can even go on the TUBE as long as it's not too busy. My top tip is to Wear sun glasses to dampen the sensations a little and also earplugs as it just slows it all down a bit, especially for the travel .always rest and have some quiet space after a journey and drink lots of water. Now I rarely need my glasses or plugs but still always carry them. I also wear a hat a lot as don't laugh but on windy days it plays havoc with my balance and sensations. Anyway, keep making dad laugh ? , smile together at the i'provements and they will come slow and steady.

Hi Jackie, welcome to BTG and I'm sorry you are feeling so low and unwell at the moment. I am really hoping you will start to see some improvements in the coming months and that the site will help with some answers and some reassurance. I had ICP monitoring post my SAH and via an EVD and it is horrid as despite wonderful teams you lose some CSF and that is a dreadful feeling. Also remember our body is used to absorbing the CSF and when it doesn't our electrolytes and minerals go haywire. For me the experience of low pressure and effects of that on a recovering brain leaves me feeling dreadful but it does pass, if it doesn't that is a sign to seek more help and don't ignore it with your shunt, I had to have numerous LPs to date ; following my discharge , then later on before having my VP shunt and since then a few times to check on few things and each time the effects of that have left me feeling low, and the stuffing completely knocked out of me. I can only tell you that learning to live with the clunky effects of a shunt takes a bit of getting used to and you are doing ever so well so be proud of yourself for all you have acheieved so far. When i came here after my shunt and SAH I was terrified, nothing felt right, I was worried and the Louise, Super Mario and Win all let me know that having a shunt just required finding a new state of balance and also some occasional singing. And in my case occassional swearing . I had a lot of one step forwards and two steps back but youre not alone and you will continue to move forward. Keep on keeping on and rest whenever you need to.

Hi Gareth I'm not sure if you saw these but there was some good replies for you about short term memory in Dympnas story , is there a specific worry you have right now with how Dympna is doing with her memory? Short term memory post a bleed is commonly disrupted. I went to a neuropsychologist group 18 months on from my bleed and every single person there reported this to various degrees and we all had different bleed locations and severity. what seems to be the thought amongst professionals who study this is that the absorption of blood into the brain surface interferes with the ability to process a new memory , the filing system is disrupted so it takes time to learn new ways to 'keep' that memory but more importantly to locate it again when needed. the Speed at which people do that and How they do it will be slightly different for everyone and also you have to remember when healing is happening it will take more time or energy to do anything , so it's little steps , done often, realistic practise ( don't overstretch) , gentle encouragement and lots of rest, that all helps new ways to remember.

So many things I could mean by that title, it could be the amount of tears I have shed over the last five years or it could just be the fact that here I am arrived at the five year mark wth almost a feeling of awe and amazement and so much water has gone under the bridge in that time. 5 years ago I was working at a busy work event in London to mark IWD. That proved to be my saving. Surrounded by people to whom when I remarked there was something "terribly wrong in my head" they acted, they got me help and by the time the bike paramedic arrived I was having a grand mal seizure. Big brain stem bleed, Hydrocephalus to boot and let's just say the thought of those days still makes my family and loved friends go grey. Me? I remember nothing until I finally shifted from HDU and I figure that's a good thing because I definately remember a lot of the rest of those long weeks , of that year of further operations. My good fortune was prompt attention, amazing surgeons and angels on my side but I didn't leave the party without my scars and deficits. So now, today, how do I feel? So much is in the rear view mirror for me but I have grown stronger mentally and physically with passing days. I can do so much more but choose to respect my new limits which brings me and my brain more peace. . I carry my SAH with me as an experience that has shaped a new version and I still get frustrated with my new operating mode that was created that day but to be honest in those early days I felt so broken, well I was broken, nothing worked as it had just days before that I honestly never thought I could reach as far as I have so on the whole I just feel very privileged to be here and always find something to marvel at in each new day. And so this 5 year anniversary post is to say that. To say keep dreaming, keep looking up and forward , not to far, not to farback and just always try to pick yourself up after those shocking and dreadful 'head' days and nights that we get. Try to stay with the moment of now and enjoy it for what it is. Every day will brew change I find so be open to that and you just never know what is round the next corner. thankyou BTG for all the helping words, hands and friendships. You have held me up,

Hi Gareth and hi Dympna Glad the hardest days are in the rear view but now starts the process of healing and being home is a wonderful thing but there is still so much that is different and changed and that's hard for you both. Keep talking and being open with each other, lean in to each other, it will help. I have replied on your other thread also so I'll keep it short here but just to add I couldn't read, watch tv or anything as like Sami it just took too much attention and memory and it was so frustrating as I couldn't follow it at all. I started by building up with audio books for short bursts and also having the radio playing in the day to try and sing along to songs but again only for short times. When I did start watching to it had to be really simple stuff and not challenging noise or intellectually. Do something, pay full attention then rest afterwards, that was the pattern for quite a while. Building up slowly and steadily to create new ways. Go steady both of you. It's early days . Cherish each achievement and don't dwell on the differences as they'll keep shifting

Josie, First i I always say we have no competitive bleeding on here, a bleed may have different levels of severity but make No mistake having blood soak when it had no business being has a consequence, we all share that experience, whether it large or small. Gosh I think we also all share that impatience and dare I say that ego of wanting everything to be just as it was before and trying to 'push through' and 'get back'. We talk of getting back and recovery but I have learnt that first we have to properly give our brain the time and energy it needs to heal. Someone explained to me that the brain itself doesn't register pain as an organ so maybe our frazzled emotions and extra fatigue that then show up when we over do it are often the way our injured brain can show it is still hurting. We have to know our signs, our traffic lights and never go through on a red. Im not saying don't run as Exercise is fab as we all know and if you can run I understand why you would want to but maybe listen to the signs that right now it's a bit much for you. Take a walk instead, be gentler with yourself and your brain for a little longer. It can't tell you any other way that it's still hurting and healing . Go easy Josie and don't feel guilty for resting, it's an investment in future days.

Hi Gareth, it will be 5 years this coming Wednesday since I had my SAH. I was 39 so I was a little older than your wife but also similar to her spent considerable time in hospital and latterly had a shunt fitted also. In the very early days my short term didn't work at all, I could greet someone, look away only to greet them again when I glanced back but gradually the fog lifted a little and as months went by my family and I saw gradual improvement but if I am honest it took over two years before I learnt new ways to hold onto short term memory. i used lots of things to help with that, focussing on one task at a time, resting after I did something that used cognitive energy, using both old school and technology tools to help me recall things but the main thing was accepting that how I used to recall and remember didn't quite work the same way anymore . All bets were off so it was time to find new ways that work for me now. I had some great help with a neuropsychologist group led session to help me explore some of that and some things I worked out myself and then a lot of help here also. What is maybe helpful to think about is that capacity to form the memory whilst not necessarily permanently impaired no longer has the ability to file it quickly or how as we once did. To form a memory takes a huge amount of neurological processing so i just think it can't be completed as efficiently by our injured and healing brain. It's probably also why we can recall older and fixed memory more easily but what happened or we heard just minutes ago doesn't stick. try not to worry to much or focus on this right now, it's really early on and it will improve. When first home unattended I locked myself out many times, forgot appointments even with post it's stuck up to remind me but now I rarely need the prompt of reminders unless I have ignored my "Brain is tired" signs. I was able and chose to go back to work after 17 months and I do so at a different level of hours but in many ways my ability to retain facts both at work and at home now is more 'permanent ' than it was before ; if I remember it I REALLy remember it. I have even been on a couple of winning quiz teams ? Heres the thing Gareth, the brain when it is trying to heal itself uses vast amounts of unseen energy, and to be able to heal well it needs rest, space, good food and most of all time. Give it that now , invest in that in the early days and whilst patterns of how we used to complete tasks and perform and function may no longer work the same way for us it does mean that the Brain will be able to heal and hopefully learn new ways. Right now it will discard functions that use energy that take it away from healing and repair. If she was a runner and had broken a leg it's so obvious that she can't run on the leg, it's the same thing when we have a brain bleed, it's going to take time before she can do things she did with it previously.. i hope that doesn't sound patronising and harsh, I am trying to share from a view further down the line. Give her our best wishes and you keep on rooting for your miracle wife! She'll get there with your help and who know the ' there' may be somewhere completely different and at an entirely different pace but that doesn't have to be bad, just different.

Great post Daf, you have done well indeed. Those early days are very hard for us and for family. The toilet challenges shall we call them can cause some amusement can't they? Remind me to tell the tale about the flying bedpan incident...or maybe not ?

Daf, So i I hope you appreciate the daffodils for St Davids day ? Welcome to BTg and great to hear it has been helping you so far. Life will be different, how can it go back to being the same knowing what we know and having lived through what we did? but we can go on from it, regain, relearn, adapt. Importantly we can also encourage each other especially when some days or challenges are harder than others and in turn boost courage and reduce fears with shared experiences. Work is a big step, there are some amazing threads on here, lengthy but worth reading from people going back years. Just make sure you put plenty of breaks in and be kind to yourself, you won't just bounce back to it. I described to a colleague that if you fell off a running machine at speed you wouldn't just be able to jump back on and run at the same pace and tempo. You have to stop, see to the injury and only when you are ready build back up to a new pace. Slow. Steady. And in time I would hope that approach leads you back up the fells too. Daff

Tim, Macca and Clare are right, hang in there and just take baby steps each day. The unseen trauma in our heads does create havoc, There is no other word for it. I think a bleed like ours creates a disruption of our ability to process the chemical reactions created by everyday emotions and events , that natural process gets broken or at least disrupted temporarily when blood spills in the surface. That's my personal theory anyway. Maybe take a look at your eating habits, don't let yourself get hungry as the brain is using lots of energy, I also find at this time of year I have to take a vitamin d supplement , obviously please don't do anything without seeking medical advice for what's best for you but my vitamins and mineral levels were dreadful for the first year post so my doctor advised a good vitamin intake and I also made sure I ate lots of things with zinc, potassium etc in, all good brain foods which helps mood also. Go steady.

Tim, hope you are doing ok this week. just to add in a link to a previous post on this which had some wonderful responses in which may help you also http://web.behindthegray.net/index.php?/topic/2817-i-dont-feel-depressed-but/

Hey Claudia, welcome to the forum, let us know if you have any specifc questions right now.. I was 39 when I had mine almost five years ago, two young daughters who were then aged 6 and 8 so I will understand a little of what you are going through. Lots of experiences to find and read on here which will help you, Take care, go easy each day and be kind to yourself. Treat yourself as you would advise a friend who has survived similar.

Hi Tim. Welcome to the forum and glad to hear that physically you are starting to feel a more familiar form of yourself. The feeling you describe I completely understand , i think I posted a similar question as whilst I didn't feel depressed as such I just felt 'adrift' 'lost' and 'detached' . I don't know if those words resonate with you but I sought help here and from my doctor who diagnosed PTSD and like you I was offered anti depressants. I chose however not to take them and try some counselling first. Everyone is different but for me my reasoning in that decision is that I was already taking quite a lot of different medication at that time and didn't want to add to that without trying first to solve my mood first . The talking and cognitive behavioural therapy was useful plus I also looked at what I was eating and made sure I got out for a walk everyday regardless of mood. I also kept a diary which helped me note positives in the day and small successes. The Thing Tim is things have changed for you, you have had a sudden traumatic event so be kind to yourself and give yourself time to adjust. Take care Daff PS I should also add that with the counselling and food changes I found this dark time passed and my mood improved within the first two years, I rarely have low mood now, no more I expect than anyone else.