Daffodil

Hi Sophie Welcome to BTg even though I'm sure it's the last place you wanted to be visiting. You are going to be feeling a lot of worry and uncertainty at the moment as nothing is going to be clear until you see a neurologist I expect but in the meantime you can help your body by trying to relax and take frequent breaks from stimulating environments, drink plenty of water and rest plenty. If they have scanned you and discharged you it is unlikley you will need to have interventions but they will want to do a more detailed scan to help diagnose you. We can't give you medical advice so the neurologist is the person to advise there but we can help you with questions to ask. But quickly, if later they decide you have had a bleed in the brain then yes you can travel, other members have had babies post bleeds and you like us just learn to adapt to the changes within your brain which may show up post bleed. Take baby steps for now , listen to your body and push for that appointment. Daff

Hey Robyn, sorry to hear of what you've been through. The after care you managed to get sounds a good basis to help you start to rebuild a new life framework but I think you're being very sensible about how you go back to work and indeed what that might be. There's a huge long thread in here about that which you might want to read in chunks. Ask anything you want, someone will always have a view and an experience to share. Daff x

Jennifer, glad you found us and welcome to the site. When our brains bled there was no warning and then later the conciousness of the ccognitive changes that have been wrought plus the submission we gave to all the hard medical procedures together with the cocktail of drugs and often prolonged medical stayovers, well I guess what I'm trying to say is that this all leaves an indelible footprint . Its an experience that changed us. it doesn't define us though but the memory of things and experiences can be triggered in different ways and in turn that has a very physical effect. I was diagnosed with PTSD after about a year and a half and that was following my second lots of counselling. First was through work and was just dealing with the day to day trauma I was experiencing but later it was clear that my triggers were all out of kilter and I had CBT through my GP. If you haven't asked for counselling before now then I really suggest you see if that's a possibility and in the meantime find and explore ways to slow yourself down when the racing feeling is upon you. I use a combination of mindfulness, mints ( win's top tip ) and self massage( spelt it right today!) . I also ground myself with what I can see, hear, smell in that moment. It works honestly. Things are going to I mprove. You will have less fear in time. Time really does put distance , the scars will always remain, yes they will fade but you know they are there and so always be considerate to yourself and make some allowance especially on the days you are more tired. It was an ordeal but one we got to live through but you are different as a result and we have to be gentle with our weak spots.

Robert. So glad today and your replies have maybe helped it be a bit of a better day. Baby steps now, there is no quick fix for any of us but as Macca says, time is on your side. I hope the book is useful, some of what you said resonated with how he described life and had the wife's view which I thought may help you both. Approaching life after brain events is Dim Sum living I think. it Can be delicious but it's tiny little bites one at a time. Slowly does it. Oh oh and this thread will already be helping someone...see what you have started !

Hi Robert, welcome to BTG and sorry to hear you are having a tough time of it. Brain damage is a peculiar injury in that we don't recover necessarily we just adapt and learn to adjust styles and thinking that works around the damaged or affected area. So over time we may see improvements but it is a different state of brain to one before the bleed and injury. James Cracknell and his wife wrote a book about his adapting to life after brain injury and how pushing too hard caused him some temper issues , it's worth a read, and I think you should reach out to Headway if you are in the U.K just to see if they can help you practically with some coping strategies. Robert the hardest person putting the most pressure on us is us. The ego of wanting to get back to everything as it was before and trying to show that nothing has changed , well it's our only measure. WE all have to accept that in that moment we had our bleeds things changed and now it's maybe time for you to take a moment to adjust and adapt and be a little less fixed in how you approach things. Pride has its place but it can leave you very lonely so please just tell people you are struggling and see the healing that can come from that and possibly some release from struggling. One of our members, Kris, wrote something on a thread the other day which I saved as it really resonated with me , maybe it will with you. I'm going through some re evaluation at the moment as it's four plus years on from mine in that I am still trying to bend too much to the old instead of living the new. Why not join me with my resolution for 2017 Robert and try and live the new a bit more, maybe we can both make some changes ?

Cassandra I'm so sorry to hear you have been through the mill again and completely knocked off kilter. I'm glad however that for your sake they caught it in good time and have now been able to make the correction, maybe after some good healing you will find this will help with the other symptoms you were having. I hope so. I can only share a second hand account of a friend who had a craniotomy and who helped me a lot post shunt surgery with calming my anxieties.. Basically make slow movements , slow to rise, slow to lower, and it may occasionally give tickly odd sensations all around the incision area. She advised me that she didn't wash her hair fully for quite after surgery, for a while longer than me I believe , so nor did I post shunt surgery certainly not until all stitches were out or dissolved but then it's less of a incision than a craniotomy. Even then I had to ask my MIL do it for me. I sat in the shower so I didn't have to put my head forward ... it certainly strengthened my relationship with her ? My best advice is be kind to self, slow everything right down and just ease back in very gently, it's another brain surgery. Use what helped you before and If in doubt phone and ask and maybe an email to the consultant or surgeons PA to ask if there is any specific advice or follow up..? Take care now

Agreed. In fact get yourself a stick that you really like...I can't wear heels now and I take a stick whenever I walk on uneven ground ( post SAH I needed one all the time) so I got myself one with a carved hare handle. Worry not about what others think, really just getting out is the best thing and do what you can manage that day.

Oh my goodness. End of day attention to detail example right there...but yes I am heading for a self shoulder massage early tonite Bronco!

Myra, wow, first well done for getting back to work, I imagine that is incredibly important to you and definately will help with confidence which gets knocked after an event like this. Great advice for you already in replies but a few suggestions from me to help with the practical toll of working in a cognitively demanding environment like a hospital. 1.The lights in hospital are bright and harsh I have always found, so maybe you could invest in some tinted lense glasses just to take the edge of the harshness. I wore sunglasses for a long time when in bright places and later at work meetings, not suggesting that will work here for you but just a little tint may be worth a try to see if it helps. 2. When you have encountered a fast or intense time or situation at work try and just take a moment and pause. Easier said than done I know as a nurse but even if you can just a shut your eyes for 30 seconds and just listen to your own breath that will help put some breaks in and help your brain have a moment in its hard work. Tiny Pauses between every physical task can really help, get in the car, pause. Turn the ignition. Pause, doesn't have to be long but if you can it just helps the brain take the little extra time to make the shift whilst it is healing. 3 Getting to sleep. If you can practise and put in place some wind down routines that help you slow things down at the end of the day,take a bath or shower with body wash fragrance that you like that relaxes you ( lavender, rose are good ) not one that energises ( save that for the start of shift , think grapefruit and citrus) and then no screen time for at least 30 minutes before trying to sleep. I also self massage my shoulders before sleeping just to signify to myself that now it's time to settle and slow m it can h lol the brain stop racing. Good luck. Keep us posted. What it should say is: I also self massage my shoulders before sleeping just to signify to myself that now it's time to settle and slow down and it can really help the brain stop racing.

Debs, firstly my apologies as I have completely missed your posts until now...I have just read your introduction and GP post and then this one. Sorry it's been such a hard time and Well lovely lady you may need to turn the activity dials down if you can at all and just go right back to basics of being kind to self. The horrid effects of stress that canny Win mentions is correct. I have a theory that the chemicals induced when we are stressed are not tolerated very well in our new corrupted state. The brain can't process or filter the effects as well and everything gets magnified and feels dreadful, and then we worry, which is horrid too and a vicious circle happens. So when that happens you need to slow it down, stop, sing, rest, be still and you know what maybe invite your daughter or whomever you are with at the moment to join you in that stillness. It won't hurt them . the weather affects my energy and pains levels shockingly. I blame the fact I can't read half the posts on here at the moment on the fact that my energy bank this time of year drops even lower than its shockingly low levels of normal making it harder for me to be able to keep up with what I can normally manage. So I have to adjust my patterns and I think possibly you might need to also. Rest when your daughter rests, don't fill it with things you feel you should do, ask people for more help with cooking or chores if you're trying to do all that, freeze meals, do whatever it takes to allow you to find a balance that works today, and tomorrow adjust again, keep observing and noticing and adapting. for most of us this adjusted grey matter just doesn't bounce right back and allow us what it used to, I think joining your daughter with the regular meals and rests might be a good idea, and maybe that's something positive right? you can help and encourage each other to both get to a steady state and regain health for both of you in your recoveries. Do it together,

So this conference went ahead and the speakers have all shared their presentations which you can find visiting the Brain and Spine site http://www.brainandspine.org.uk/news/201611/bsf-organises-uks-first-sah-conference-patients-and-carers and following the links for the slides. It apparently was good and I thought worth sharing as I thought some good information in the slides. Kavitas video log of her SAH journey is worth a watch if you have some time on your hands and the slides from Clinical Neuropsychologist Dr Lynne Aitkenhead slides cover memory and cognitive problems after a SAH and stressed the fact that short term memory loss and attention problems are extremely common after a SAH but there are many things you can do to improve your memory such as keeping a diary and using certain mobile apps that help manage daily life. Clinical Psychologist Dr Sabah Khan ( who ran the sessions I attended at Queens Square) talked about relationships after a SAH. Her talk was focused mainly on analysing feelings and psychological behaviour of couples affected by a SAH. She explained the processes and stages which people go through if they themselves have gone through a SAH and how it affects their loved ones. I would have loved to have heard that one. If anyone reading went along it would be great to have some nuggets . I still think Brain and Spine do the best literature on SAH, it was all we as a family were given and theirs and Headways booklets were so helpful in my early understanding

No competitive SAHing on here Reinfield. pain is pain and we each walk our own path. Experiences and feelings of bleed and adjustment to life post can be shared freely without comparison, it's just about reassurance, empathy and knowing you don't walk alone. I had a couple of surgeries requiring the 'surgeon haircut'. The first time a burr hole for EVD with a great fringe combover to hide it but post shunt placement I was left with a complete shaved back of right side of my head and what I described as a small shark bite on the back of my head. And yes it really made me sad at the time mainly because I couldn't hide it and i could see it scared and reminded everyone else of what I was going through and in turn that made me sad I was worrying them so much. Time passed and I wear my hat now not to hide the scars as I did then but because it helps my head with weather changes, too much wind or cold is no good for me. progress. Thing is those very visible wounds were actually a great reminder at the time to be aware of the trauma which caused them which itself was unseen and set a pace that about matches how hair grows back. Slow it may be but it grows given time as you will find as more hair returns you match it with a new pace that's about right for that moment , and the next, and so on. Take care . Glad you are going steady

David, wow that's an inspiring story and I'll be honest, hearing from someone that's far into post big bleed territory and living with a shunt is good to read. You have done some amazing things and feats so far and so glad they picked up and helped you in 2013 to get that sorted early. Hope you find the forum a friendly place. The naked blue is probably not something I'd think of doing , was it for a special cause like your Headway trek? Anyway keep on keeping on, you're a helluva survivor.

The best advice I had was there is no point putting all your energy into one place, if you do that you may find there is no space for all the other things we need and like to do and balance is I,portant in life and living. Susan it's good you are finding that. Pacing your levels is important but done across many things not just one thing to the exclusion of others. That builds stamina too. Finding out what is your new tipping points, your new tolerance and capacity, well it takes time and worry not about others opinions whilst you explore that. Opinions are like armpits, everyone has them, but let's just say some stink the place up ? Only you can do what you do, do that and hold your head high, most people are rooting for you to be ok and the ones that aren't, well they are best left to their own devices.

Greg you are so right, This is a good visual of the battery analogy and it was shared by Brain Injury Awareness the other day on their FB page. Credit and visual rights for the picture is with them but I think it's helpful to explain to others and a battery pack is often used to explain the fatigue. Graham, it's a big change for you but remember you aren't trying to prove what you can't do more it is you may have to work harder to do it now or it just takes longer so uses far more energy Hopefully no one is trying to trip you up only to support that this where you are for now. I do 18 hours a week and it's taken me this long and a big effort to get to that...we all find our own rhythm and pace.

Graham, There's lots of different tests, some memory, some logic, and it's assessing any gaps or deficits compared to what they would expect based on your age, your education level and other factors. The tests can be pretty exhausting I found, so if you are getting there by car get someone to drive you if you can and rest afterwards. Also I took my MIL , or should I say she took me and she was allowed to sit at the back whilst I took the tests as I had difficulty recalling conversations at the time and it was useful for her to be able to ask questions at the end that I was too tired to ask about. So my best advice is to go with someone if you can even if it means they are waiting about , drink water, be prepared to be wiped out and that's about it. I wrote a thread about my testing on here somewhere...my funniest thing is that during mine I got stuck with a thought which made me want to answer all questions with the same answer ...banana...which made me get the giggles...but I stopped. Explained what was going on. Took a moment whilst we all laughed and then we carried on. Good luck.

Hi heather and hi Gordon. Welcome to BTG. Its been a bumpy road for you all and whilst I am hoping for smoother travel now it may be quite a long drive so best pack plenty of sandwiches and plan lots of rest stops along the way ! Right enough enough of the silly analogies. Seriously I hope that the fear is subsiding a little for you all and things start improving. I am not surprised he is more challenged after the shunt episodes to be honest. The feeling of going high pressure is one I recall very well and it slowly shuts of your senses and functions one by one and then coming out of it either from EVD or from LP or shunt is like dealing with the worlds worst and longest hangover and that takes time. I came home post a 7 week stay and big bleed having come off the EVD...the hydrocephalus returned and back I blue lighted to hospital. Plenty of lumber punctures and I then had my shunt placed and it took a fair while and I needed some adjustments before I found a setting that worked well for me. Until that happened my cognitive function was dreadful and I suffered a lot from pressure side effects. Gordon has had a lot of brain surgery in the last few Months which have in essence assaulted his brain which was already trying to cope with the effects of the bleed so it is left reeling but give it time, nurture and gentle encouragement and there will be progress each day. Headway were great for me so hope that that helps him too. The effects of the hydro is like someone having squeezed your head very hard and the kit in the head also takes some adjusting to and the scarring is painful. I found the following helped me, they help I think generally post bleed anyway but more so if you have a shunt. Lying propped upright , never totally flat to sleep. Not letting myself ever get hungry and drinking plenty of water Dulling the sensory impact with ear plugs and sunglasses Wearing a hat especially in windy or very cold weather Take care both.

Louise, I agree with Sami , you helped make my post SAH world a whole lot less scary as I suddenly understood that whilst things were vastly different that didn't have to mean without hope. That and the fact You set my mind at rest over my shunt barometer head. So keep on keeping on lovely lady. You say you haven't worked but I beg to differ, you have worked hard every day since! Xx

Hi Verna its a natural fear shared by many of us. I'm not sure how long ago you had your SAH but the anxiety and fear is heightened during the early times and any twinge or pain that is new, and there are many, make your fears scamper straight to the possibility of another SAH. But it really is unlikely and the feelings are in fact your brain healing. That's what I told myself anyway, Counselling is important, not trying to cope on your own or bottle this up. Ask your GP and come here also if that helps you to get some reassurance too. Basically in seconds our lives transformed and we are left getting to know the impact of our bleeds, each of our deficits as unique to us as our individual brains. It's a lot to accept. We have to grieve what we have lost and then accept the new normal of our adjusted state and that takes time and helping hands. My most practical tip tip for you is to keep a small notebook by your bed and when you wake write the small things you want to do that day, at the end of the day tick them off if you can but then add what was good about that day, what made you smile track Your fear level as well if you like but just give it a rating out of 10 and then pat yourself on the back for the day. Baby steps Verna. It gets better.

Gemma. Just sending you all the best for the angiogram on Tuesday. I can remember only too well going into the National for mine and seeing all the people gathered around the bed and screens, it was like they had sold tickets...actually before hand I got interviewed but one of the wonderful doctors on the pain team which was a little bizarre but it took my mind off things. But they are a fab team which you know so trust in that. Download something good to watch in the time on your back lying still afterwards. Like you I had an overnight stay post mine but my best advice is make sure everything is as neat and tidy as you would want it to be if you catch my drift and I'm sure all will be well. We will be thinking of you.

A lovely post from Tina which I hope will allow you to take hope that there will be improvements, they will come and creep back into your life but you have to start with being kind and patting yourself on the back for what you are already doing and how far you have come from that bleed. Hydrocephalus I think is a strange state and condition to live with and having this adds complexity to the healing from a bleed, I have talked at length with my doctors about this and wondered about how the brain compensates to its 'cleansing' system not working so efficiently. It's amazing we have this contraption of a shunt which keeps us alive but at the end of the day it is a very mechanical and clunky solution for what is appears to be a very complex and continuously adjusting state of our cerebral fluid and that can just add pain. Heaviness is something I battled with for the first couple of years. Maybe capture and note when you feel any slight improvements, or when things are worse. Maybe try sleeping a little more upright. Keep the fluids up, it's a education now to learn this new adjusted state. I met someone who had a shunt, not from a brain bleed, who said it took them three years to become used to the new operating pressure...I didn't want to hear that to be honest but looking back I can see that it was only about then that I didn't have so much of a reaction to medications, or changes in pressure. It was as if it took that long for my body to realise that how it functioned was with a new level of fluid...not sure if that makes sense or just sounds nonsensical but if you can make allowance now and give your body time and space to heal then I think you'll find that you will continue to regain and improve. Good luck.

Hi there to both of you. So I'm going to suggest doing things in really small bite sized chunks as it can really help try you ease the headaches back to a tolerable level. So do something but then stop and rest before going on and doing something else and in that moment of rest as Michelle's says drink lots to rehydrate and also top up your energy levels with regular food intake, don't get hungry. Headaches for me stayed quite a while to be honest but the intensity of them diminished as I learnt to pace myself. I realised that I had to make good choices about the energy I was using. The brain is healing so it makes sense it hurts if we then ask to much of it to do other stuff. Once I started to understand that It meant less having to use painkillers as well. Also it can be worth her getting bloods checked with GP as well as both my potassium and magnesium levels were a little low post bleed and my ops but which I was able to boost with food that contained both. But just to add that its not uncommon to have that fear, that worry that it's going to happen again. I can't take that away from either of you but I can tell you that you both will gain confidence as time passes. Don't ignore any pain that gets worse but if it stays the same then hold hands and wait for it to settle and if you can get some sleep then it will do the Both of you good.

Luke, well done indeed for giving mum the help but also standing back and letting her own and find her own achievements each day. That will help her confidence , her stamina and also give her independence so she feels less reliant on you which us proud mums like to feel. Great work and hope you are looking after yourself also. Take care.

All of us are different in our bleeds, our experience is unique to us which is one of the trickier things that comes with our new found adjustment to the new state of us. Yes we can compare, we can definately learn from others having trodden a path before , BTG is a sanctuary for that but at the same time we have to work out our own possibilities within our own recovery. I had a pretty major bleed, level 4,complicated by hydrocephalus which then returned after a length stay requiring even more surgery to bring the permanent additon of a shunt into my life equation. The prognosis once I left hospital was pretty much " just do what you can" and so ever since then I have tried to figure out what that "can " is. Working and the return to it at the capacity I had before has proved impossible for now especially keeping the balance of home life with two young daughters so I do it differently these days but I think just being curious about what might be possible in a new way has been helpful. We all know about regains , or retrains as I now think of them , and we learn about pacing, about spoons and we make sensible decisions every day about how doing something might mean not doing something else. Thing is whilst doing that I found I was becoming less open to stepping outside my comfort zone. So the further I stepped in my recovery , the steadier I was becoming the less I was likely to rock that boat so this week I rocked it. I really pushed myself physically and cognitively and whilst I couldn't do the entirety of what I set out to do I learnt a huge amount on the way and feel a little more positive as well that this recovery of our is definately something I'm on for the rest of my life and that it's kinda cool that I get to understand and really try different ways of doing things. I havent been been online for a few days as of course the efforts of my adventure wiped me out totally but that was worth it and I 'stopped' before it became painful. And I mean I really stopped and switched everything off. My mum even brought meals on wheels whilst I rebooted. So that's what I wanted to share. We get to know our traffic lights system , our Red Amber and Green moments and I guess I wanted to say pay attention to them all but always listen to the red and then at that moment really do stop because then you will be able to go again when the green comes around. And who knows we may go even further ? If anyone wants to know what I've been up to they can check out my blog , link is on my profile page. Go steady and keep being curious everyone to your new possibilities and of course always keep singing. I did a fair bit of that this week Win.

Luke. I went along to a group at my hospital some time after my SAH and we discussed smart watches and other prompts. It may sound silly but we all shared the view that the prompt itself works to get your attention , it's just that you then can instantly forget that prompt so you have to work on filing the memory better in the first place. I still often forget to take my phone somewhere or get a reminder only to then completely forget I got it. My family are my best reminders these days and know that they need to put something in front of me and make sure they have my full attention when telling or asking me something. i would suggest a time which is regular each day where you sit down and slowly go over what you want to remember for that day, get her to write it down in a planner, or on a device, that way it help her build and file that memory properly, then adding a smart watch into that as a reminder may work really well. Let us know if you try. ?