Daffodil

Sherry, it's understandable to have that worry, I think i Can safely say we have all had that fear at the back of our mind especially in the early days and the advice to talk that through really does help you reach some acceptance of what happened. I can't tell you that it can't ever happen as I did meet someone at my treating hospital at a recent check up who had a second SAH which wasn't my best conversation ever in a waiting area but when I then asked my Neuro surgeon again of the risk he assured me it was extremely rare for that to happen in his experience. My attitude is that like Macca says we have to let go of what we can't control. I figure that in the same way I couldn't have prevented my bleed when it did happen I can't prevent another so I just take each day as it comes and hope everything holds fast! You are such early days in your recovery. The blood went into the place where it was never designed to go and plays havoc with how we feel, our emotions as well as our physical state so be gentle and considerate of that. It's natural to have fear and be scared and it's ok to say that and even better to ask for some help as you adapt. Go steady now. It will get better, the fear will hold less of a grip given time.

You know what Neil I think we have all flown over Hope Valley every day since haven't we well done for the baby and big steps you have made and keep on keeping on. Go steady with things but still pushing the envelope nonetheless.

Dear MOF. You have some great advice from Macca and Sarah Lou and others already which I hope helps you. The first step though is to give yourself a break and not be so hard on yourself and then See if you can make some small changes and create some new habits that might help your brain with its efforts. The fact that took me a little getting used to is my brain just can't absorb and process the way it used to and I was going to have to take steps to protect myself in that and change how I might have done things. You talk about being cranky and that is easily my biggest sign that I am in need of extra 'quiet solitude' , that's and losing or muddling words. What comes next is my balance goes and I literally will be in the floor so I do well to not ignore them. I call this time my reboot moments and my girls are quick to tell me and then I take myself off, sit quietly with no other distractions and just be still a while. I personally practice mindfulness meditation but maybe find something that works for you to help just quiet things down. If it's really bad then I just have to stop everything and sleep and I don't rail against that now as I know it's the only thing that will work. Pacing is something to be learnt. I hate the word, I rebel against what it means and what I have lost but without pacing myself daily then I actually can't do half the things I now do. Slow things down, do them one at a time, plenty of breaks in between. Ask people to have patience or for help. Explain you can do something but only after you have had a time out. If you have just done something that takes cognitive effort then take a moment to pause before you go onto the next. If there is big emotional upsets or worries then pace yourself even more as these are energy drainers. All that said I then still have days like you describe where everything slows, words gets lost, balance is gone but they pass but like Sarah lou do get checked out if things are deterioating. You're no battle axe you're just adjusting to life with a wounded brain.

Hey Sherry, welcome to BTG hopefully if you read up some old threads and ask your questions here you will find a little reassurance that is going to help you adjust as you heal. I was 39 when I had mine, two young kids and like you as well they used to joke when I messed my words up which I did frequently. I would lose them and transpose them and it worried and upset me. I had neuro physiologist testing of my cognitive impacts post bleed about a year on now know this is the affect on my short term memory but it has really improved. It is normally a good indicator that I have done too much and need to rest, Over four years on if I have overdone my limits then my words will start to disappear I can't find the right one so maybe just be conscious that whilst you are coping your brain is also doing a massive amount of healing unseen to you so if the words start slipping it may be a quiet rest is in order. Being someone where there is too much going on can be too much for the brain to process early on or if you are tired. Read the letter to your brain which is pinned in the forum, you may find that helps you to be kinder to yourself. The brain is the control centre , it's going to need a gentle approach to be able to heal after its trauma. Anxiety is also incredibly common post SAH so don't suffer that in silence, go talk to someone and get some help with it. It will improve but don't let it grow unchecked. There are plenty of great tips and experiences shared on the forum that I really hope will help you. Take care now.

Laughed as thought win had called you Doc Hopkins! Hi hope you are doing ok. Main thing is to check with your Neuro team to make sure but if you are discharged, physically in good condition then I imagine they will tell you to just build up slowly and gently and no reason why not. Remember you had brain surgery very recently with clipping so probably no inverted moves, I can't do those now at all but have a permanent shunt placed and it's just uncomfortable but I do a small yoga based stretching routine every morning and there are plenty on here who are back to running, again that's not for me , I go walking with my stick But take baby steps, show moderation and gradually ramp up and listen to your brain, it'll stand you better in the long run. Headphones, used mine ever since and no issues to report.

Hey Rachel, welcome and you have some great Insights shared already. I had hydrocephalus and now have a shunt and like louise am very weather affected which affects my pain level plus have fatigue which limits my work hours but Sarah Lou said it well in that you become more used to it. I'm four years and a half years out and can do things now that I couldn't even two years ago, i have much less fatigue than I did and hope that that recovery and gradual change continues and i have hope it will. Headaches are hard though. are you doing too much maybe? i don't have daily ones like you and definately you should get that checked out but also we don't carry stress at all well now. My personal theory is our ability to process any chemical change in our brains has been compromised. So for instance just before my period I get a whopper of a head now , previously it was not much to write home about, now it's a shocker, same goes for grief, tense situations and pressure, all land me needing absolute still and quiet yet were things I used to take in my stride....so Win and Louise share their great wisdom when they says avoid stress. We can't absorb it the same way and maybe that's something we all have to learn to live with, pacing ourself and knowing what takes its toll . Be kind to yourself Rachel.

Hey Michelle, sorry I missed this. It's good feeling putting that distance between us and the darkest days post bleed and our anni-versarys mark that. This progress you have made will only continue for you as you learn even more about those niggles, gain confidence in knowing what affects , learning how and when to take a break and just generally getting to know more about this new model brain we all now work with. Good luck Take care now. Onwards!

Gail, positive vibes winging their way to you. Go steady and take it easy in the days post op. X

Hi Julie. How far you have come since the beginning of the year when your husband first came to the site. The exhaustion is frustrating isn't it but I am sure you are doing your best to listen to the signs and take plenty of breaks when you can. Pacing myself at everything is my new normal but four years on it has become part of my habit to remove myself from busy or loud situations to give my brain enough time to just pause and for me to settle and I can report that life is pretty good these days. I was a little younger than you when I had mine and like you now have a shunt , there's a few of us girls in the shunt club, Carolyn, Win, Super Mario, Louise to name a few but I think all on BTG concur that adjusting to that new state of our brain and circumstance is hard going but you will get there. I am sure the surgery will go well for you and it's natural to be worried and fear going backwards. Also when we had the bleed we were out of it for most of the time where as this time you get to witness the worry of those around you which of course you want to protect them from. If you can try to talk to everyone and just all come together in it. I can relate to this in that I had to have my shunt placed three months after my bleed when the hydrocephalus returned and they needed a permanent solution. I had to be back in for quite a number of weeks on that occassion and I remember going to surgery just full of fear but also I knew that in the long run it would bring me and my family some peace of mind by having had the procedure. Which it has of course and that's what I hope will come in time for you. Yes there is a new dimension to uour recovery but you will get through it like Jess said. Take care now. Go easy and steady, baby steps and good luck. All will be well.

A good feeling that 2 year mark. A lot of water has flowed, trials have been weathered and you have certainly weathered your fair share. Well done Carolyn and keep on keeping on ! X

Hi Belle , sorry to hear Todd is having such a tough time but glad he responded to you. I don't have a direct experience to share with you as I had none of the conditions as those you are now witnessing. I did meet a woman via a forum for young stroke survivors who was diagnosed with locked in syndrome post her SAH and she said how amazing it was when people realised she was trying to communicate. She has in fact since written a book, I'll see if I can find it and post it here, she was a lovely lady and is now back running marathons, it gave me inspiration when I was not long out of hospital and unable to walk, work or look after kids. I'm not saying that is what is going on only medics can but it may be worth asking the professionals their thoughts and if they have any suggestions or aids, maybe they have a grid of pictures to represent words and moods such as 'yes' ' no' ‘thirsty’, ‘pain’ and ‘sad' which they have used with other patients and see if you and Todd can get him responding through that and eye movement or ask for a speech therapist ot something to help work out a communication plan. He will get very tired but encouragement and patience will be the way.

I had a cerebral angiogram twice, once for coiling which I was knocked out for and then six months after coiling to check on the anneurism status. Like others were I was fully awake for the second process but with a numbed groin. The hardest thing I found was dealing with the amount of the people in the room , there was a lot of people either side of the table and then I had the scanners moving around my head like something out of a sci fi movie which meant for a busy time which was quite intense but everyone was very kind. It's not as claustrophobic as being in an MRI scanner thats for sure. They wanted me to be awake so they could ask questions and keep talking. I felt warm sensations and 'Sparks' in my head but no pain. I actually thought I had wet myself during the procedure until a kind registrar explained that was the blood from where they threaded into the groin, maybe too much info but it was a surprise to me. I had to lie very still for four hours afterwards and because of travelling quite far to get there actually stayed the night too but it healed quickly with no bruising or issues, just a little tender, nothing that a couple of paracetamol couldn't manage. It's ok and natural to be scared, but this is procedure is not being done in an emergency but in a stable situation , that helped me be calmer going in and if I had to have one again I would not hesitate.

I have no memory of my sah but this is what I have been told happened. Was fine and working all morning, apparently told colleague I had a bad headache. Looked very strange and when asked if I was ok said ' there is something terribly wrong in my brain, I need help' . I then hit the deck. Ambulance called and motorbike doctor turned up. Reports was I was lucid and could explain I had awful pain. I was then violently sick . I then had a grand mal seizure. Arriving at hospital I was apparently awake again to talk to doctors and my mum and husband when they made it to london but no recollection for me and then nothing from first week in ICU. Thankful really.

Kerry, when you worry it creates a viscous cycle which in turn effects the brain. It's natural to be concerned about the results of the MRi but I have always adopted the view that if there was anything serious they a) wouldn't let you leave the hospital b ) call you urgently or c) and the most likely outcome, let you come in for your appointment and update you ....I'm sure all is ok. We did hurt ourselves the day our brain bled so give yourself a break. If you are making mistakes then it's possible you are going a little fast for your brain to do all the multitasking that I am sure a chef has to do and against all that noise. Maybe you need to adapt how you are recalling things, I know I had to retrain my short term memory and it's still poor when I am extra tired, worried or ill with a cold or something. As for dementia risk, well I don't think there is any study that says we are any more likely to develop so try and just concentrate on the here and now if you can and maybe put some practical steps in to help you in the kitchen.

Greg. Patience...yep still struggle with that one! Curiosity about the brain is an excellent division and I agree with you that so much is unknown, keep exploring, why not....maybe a new field to diversify into for you? Kris on her is a neuroscientist so hoping she picks up on this thread next time she pops in. Confession here. I keep a book about the brain in my car, For moments when I just am sitting or maybe have escaped from a noisy setting. I am fascinated by it and understanding a little more as I feel very up close and personal with my own now. . My neuro team concede that sitting up close to the day to day changes post SAH means we often have good insights, that's definately been my experience so your gut about infection could be right, have you thought of seeing if there is a study ongoing? So with my shunt for instance when I was having to juggle to find a setting that worked for me in the early days , scans proved I needed to adjust to a higher tolerance but I could explain and describe the physical effects of why I knew I needed it adjusting so I do think that our reality of observing our symptoms can offer some alternative insights. Compromise is hard in the early years, knowing if you do this you have to not do that but it improves and your capacity will increase.

Greg, sorry to hear you are facing right at that wall of fatigue. I wish I could tell you that it lifts completely, for some maybe it does but for others, well it's a fluid and adjusting thing. Pacing, whilst boring has to be mastered. When I came on BTG Looking for hope and help after having my shunt fitted I was confused by people offering to lend out spoons...what kind of place is this I thought but then Keith I think it was told me to read up on the spoon theory, it's posted on here under pinned posts and then things started to make sense. I think only then I started to adjust and realise that I can't go back to old nor can I expect things to come back the same, not after the assault our brains went through and have no doubt an assault is what it was. But that doesn't mean you should stop trying just find a new way, new habits. Old ones just don't work for me anymore. I don't mean to sound harsh, I am still adjusting, but that getting better, that period of two years is rubbish to my mind. I still make progress and regains and I am just over the four year mark. Yes it's less remarked but I can do much more and cope with things that I just couldn't a year, two years...well you get the picture. Work wise I now work 16 hours a week , so some moderating here and that's it, I'm at my lot for now with also having two kids aged 12 and 10 it's all I can manage and it's taken a long while of very gradual build up to get there, and forget a social life, that's still work in progress. My view though is that if you are purposeful and doing quality work then there is often a huge pay off to an employer in having a committed quality albeit less capacity worker , just my point of view. I have taken on a new and pretty demanding role that I can do in that timescale and it works for me and us as a family. The other thing is being happy with the balance, no point reaching for 100% work goals if the is nothing left in the tank for anything else. You have to set your levels for now. I have a theory that once you get air to the brain it's never quite the same, it's designed as a closed system after all so those of us with EVD and shunts may have that extra factor to contend with, but maybe not. Same with a infection, might be another factor, might not. Who knows? Not me. One thing I'll share which my surgeon told me is that when you have an evd, it's placed for a reason ( and boy is it complex surgery) and the reason is to provide a release for build up of pressure happening. I for instance had to have the Evd to stabilise me before they would even consider coiling the bleed and the pipe was in a long time so pressure was irregular to say the least over that time. The ventricles are blocked at that moment and just can't cope. ( mine sadly never recovered thus my shunt) Anyhow That blood filled cerebral fluid ( sorry folks ) which couldn't drain off around our brains the usual way had to come off quick but before that happens the pressure built up is not great for the nerves in the brain. ( can you tell I read up about this and my resulting hydrocephalus a lot...) so this will also be having an effect as well as the bleed or at least so I was told. In effect two types of damage. So have hope Greg, ego to achieve is a powerful thing to drive us forward but can often trip us up as we seek to regain fragments of our old selves. The more intense the cognitive and analytic demand is in the work you do the more breaks and pause you need. Even now I can typically only manage a max 5 hour day on my pc and calls but I have to adjust my rest pattern if I have to accommodate my doing a full day of meeting and analysis work , thankfully that's rare these days. Like me my work has adjusted. I hope yours will too, sounds like they are good.

Momo. I kind of agree with you I think that illness and trauma is very personal and always unique to the circumstance and how you react and experience it especially when it is a brain injury. Complex is a good word in recovery Momo and applying a label of 'PTG' to how some people react is definately a little hokey ( got to use it again!) I may like to hope that most people over time can find something positive comes from their experience but know just as well that the outcome for many may mean that's not always possible. I still have days when I rail and rally against my defecits but know they pale to nothing compared to how they were initially and Those that other people contend with permanently. And the 5* word?....just my Brain error of one star too many!! Well I am on BTG for a reason

Susan, that is just lovely to hear and I imagine that is the effect that I was curious about. I know that my experiences from my Sah and its legacy have changed me forever, some in ways I don't like too much but also in other ways which I do. I'm so glad you are doing well and thanks for making this your first post! Carolyn, it is a interesting point of view they are exploring that the very same trauma that can bring on PTSD can also trigger alternative or co-incidal reaction of personal growth or emotional change that is positive for some people; they feel freed from previous concerns or stronger from their experiences. I think they mean that with time and a shift in outlook with fresh perspective ( and less pain) that people can see they have grown positively from the experience. Maybe it's just spin but I truly hope the growth is not referring to an increase of the 'less nice' trauma effects

So after my diagnosis of PTSD and subsequent counselling to help me deal and manage its effects on me that I have come to realise that I am now a much stronger and resilient person than i perhaps ever knew I was pre SAh . I sweat the small stuff less these days, rarely worry for long about much and have come with time and distance to appreciate the changes the SAH and its effect have given me. I speculated about it a bit in the Lost and Found thread on here. I saw a great quote the other day that said somethjng like 'be kind but take no *****' and that just about sums me up these days and I just like me better. Maybe it's just im just so happy to be here ,be purposeful and get some more days under my belt. Anyhow There is a growing body of evidence about post traumatic growth and I just wondered what members of this group thought about that or whether they think it's just hokey. An article on a recent study if it's of interest http://time.com/3967885/how-trauma-can-change-you-for-the-better/

Woah Gemma, what a roller coaster few months you have been having. I can't imagine what that news meant to you but I hope that you continue to get great care and support from the medical team as they explore a bit more about what that means , where next in recovery terms and how they can help with the spinal issues that you have been left with. I am wishing you the very best you know I am . Keep on keeping on!! Daff x

Hi Susan, I had major surgery some four months after my SAH when I had to have my shunt put in. I suppose the fact that I was having brain surgery anyway made me less concerned about bleeds, they scared me with all the possible side effects but I can't tell you I wasn't scared, I was but I was more scared of never feeling any better and I had little choice to be honest, I had to elect to have it. So it sounds like you have a sensible and fab neurosurgeon and as everyone has said, make sure you are well informed and make sure you keep that water topped up after the general as I think getting over that takes time too. Gemma, I hope you are doing ok too. Good luck, keep us posted both of you.

Hey claudette. Sorry to hear of your worry. Keep positive and I'm sure it will be fine. Like some others here I have a widened neck on my coiled anneurism and another which is small so just monitored. I have regular follow ups as they check for compacting of coils and explained this can sometimes occur because of pressure of the passing blood flow pressing and shifting the coils settling down in their location. Fortunately mine have not compacted but the neck remains because if they had coiled it fully then it would risk blocking another artery as it on an an artery intersection, I have been told I would need stenting before any additional recoiling. A useful video I watched which visually shows how it works and made me see how those tiny coils could squeeze down. https://m.youtube.com/watch?v=15J5s9fwSEE

This time four years ago I was sitting down after a wonderful but busy day with two of my dearest friends and enjoying a chat and catch up over a couple of cheeky drinks and coffee. One was my job share partner in the role I loved and the other an ex colleague going back to my early days at work. I had another busy day ahead so was staying up in London but it's my very last memory from my 'old brain' and so I cherish it as the following morning at my work event, surrounded by hundreds from my company I was felled by my SAH. I have zero memories other than those I have been told since. I was a lucky lucky girl , people recognised it was a brain event and I got help for what was a big SAh , grand mal seizure and hydrocephalus and i was just round the corner from the National in London . My work wife stayed with me throughout for the ambulance ride to uclh and then the national and remained until husband and mum could get to me but I just have the odd flash back but no true recall and I really am pleased as the events I experienced later on were already enough to trigger PTSD later in my recovery. It was four days before I came around properly and even then it was to total bewilderment and having ground hog day moments as to why things were so odd, and what on earth was that tube in my head for, and who are you again? Those following days are pretty clear and unpleasant to be honest but I don't dwell on those memories that often now, they played with my fears for far too long. It was a fairly significant stay in hospital , a return of three weeks for yet more surgery to have my shunt placed , no driving for 15+ months and two very sad scared young daughters ( not to mention traumatised hubbie with all my blue lights trips I had before shunt got Put in). Together We weathered a pretty big life hurricane. That year was really hard , full of pain , trauma, set backs and fear but throughout it I was loved, supported and never lost hope that things could get better. And they did. Slowly and surely I have reached my new life goal of ' steady for the most'! BTG played a big part in that process so I really do thank you all. Karen and founders for creating it, Paul and Lyn whose story left me humbled , Win whose singing reached my darkest moments and made me realise you just have to carry on and find the smiles in each day , SM showing me travel with shunt is possible, that's just a few but many of you have helped me get this far so i thank each of you for giving time to me and others and for all for the reassurances, the shared experience, the encouragement , fun comments and banter and the hope for better you gave to me. My colleagues still carry the memory trauma of that day as do I and will for ever but thankfully like my scars it has faded for them as I, we all tracked my recovery , noted my progress and in time over those four years since I have been able to regain and return in part to some of what I did previously. Tomorrow, I'll hug my girls and chap, I will work from home differently and for less hours than my old style but I will enjoy and manage it. I will smile and sing a little I expect and most of all I will be thankful for the day arriving and for that day four years ago when I Survived. I'm different today but then who isn't, I take each day as it comes some better than others and enjoy as many moments as I can. Have a happy International Women's Day everyone, I plan to celebrate this and all the other SAH woman tomorrow!

Hi Nat As you can see from above how you feel is entirely normal but that said it is really horrid and unpleasant living with this level of fear and so I think all of us are united in saying don't suffer it alone. Go to you GP, ask for counselling and in the meantime do things that help you relax and let the panic and worry subside when that feeling comes upon you. Survival is a funny thing. Our adrenalin kicks in and that helps us deal with the unpleasantness of our trauma in the early days but that wears off and then we are left with the legacy of knowing and feeling the trauma of the experiences, it reaches into your soul and has changed us all, all that takes some getting used to. Time helps but also so does talking about your worry. I had counselling after SAH! Once in the first year and then again when my fears intensified for no reason, I was then diagnosed with PTSD so was able to learn some techniques that helped and still help me get past that fear and feeling when it grips. Main thing Nat is when you are at you most worried is to just sit, watch and wait. like Win says if you can hum a tune, or look at a nice picture or suck a mint, basically concentrate on something small and then just notice whether your pain has shifted or moved. The reality is if we have another bleed that is not within our control anyway but trying to stay calm will help the blood pressure which is a good thing and get help. As Karen says it's incredibly rare as far as I know but the fear of it is incredibly common. It is a viscous circle, the more you stress, the more you get headaches, the more you worry, so the more you stress....try to break the cycle. Worry is normal but in the end it will change nothing . Sorry if that sounds harsh, I really do get it but I have had to let my worries go( and they can still grip me four years on ) Yes my shunt could need replacing or block, yes I could re bleed but I could also fall down the stairs, get knocked down by bus, worry won't keep me safe, you get the picture. Life is for living lovely lady. Yes In an adjusted and different way but we have to choose to accommodate our new fears and knowledge of our fragility and then we can smile more broadly and enjoy our days. Go talk to someone x

Thanks Greg. I have to go into London next month and will be staying overnight so may well take the opportunity to visit.