Daffodil

Hi, I was late to see this to share but the Brain and Spine Organisation are running another event this year for careers and survivors in London on 16th September 2017 on "life after SAH" 

May be useful ful for anyone who might be able to make it. I was treated at The National and credit a huge part of my recovery to date to the support and access to care they have given me ever since and their staff are supporting this initiative, 

https://www.eventbrite.co.uk/e/life-after-sah-a-half-day-workshop-for-patients-and-carers-tickets-35930683642?aff=erelexpmlt is the link for the event to register of know more.

Hey linda

I'm glad you went and got checked out, I think many of us have been back in the hospital when something feels out of kilter and I can honestly tell you that the medical teams are happy to assist and most do understand and would prefer to have you come in so don't feel you are wasting anyone's time.

I was back in not long after my shunt surgery and like you stayed overnight for observation and the next morning said to the registrar on call that I was sorry I wasted his time, his reply to me ; 

"You survived an event that many sadly do not and it has changed you and you are just beginning To learn about this, don't worry that you are wasting our time, your pain, your reactions are real and we will help you each and every time you need us." 

He was a good doctor. But the odd sounds, the feelings are so alien and unsettling, there's no other words for it and it is about beginning to recognise them , not let them run away with you and to see that maybe they are signs you need to rest or pause more. I prescribe more Sofa time with Jack xx

Really hope you mum gets a rehab bed soon . Maybe see if you can chat to the matron if they have one and have a check in on mum's care and set expectations. If your worried then you could always involve the patient liaison but often a chat and conversation is the best starting point. 

Tell her her btg is rooting for her 

Mary, nice to see you back on BTG. 

You are so right though, I think about it now as my traffic lights , that's how a friend who also happens to be a neurologist explained it to me She said my sequencing of lights that I had spent my life being able to predict had changed and I needed to pay attention to learning my signs, did I have a green light on my energy or pain and am ok to proceed or was it going amber and I should proceed with caution. Her advice was I probably shouldn't be tempted to  'jump an orange light' and never ever run a red.

well I ran plenty of reds early in and I can't say that I don't sometimes push on past my orange now and then hit a red fast but like you I pay attention and make sure I am trying to read and listen and adapt to my signals and what my brain is telling me . But time is our friend in that isn't it? 

Mrs M an interesting fact is the brain itself apparently doesn't feel pain so it's the nerve endings in the surrounding tissue that creates it or tensions we carry in muscles etc. 

So as Win (Also sometimes known as Mrs O) will say try , 'lose the stress'  and I always add try to be be kind and patient with yourself as you heal 

Linda

Hopefully the greetings you have received from fellow survivors will make you feel less alone.

The immediate time after a SAh I think is full of anxiety and of course what is in charge of the anxiety and thoughts ? our slightly hurt and damaged brains , and so the chemicals all get off whack and every sensation feels heightened but each day you will see improvements. 

The best thing to learn as early as you can is to put pauses in your day. Think of it like punctuation in a great story, it makes it far more enjoyable. 

Before sah we probably all had tendency to get up and then stay up at full throttle until we rested again but now you need to create a new pace and pattern that will help heal your brain. So no one is saying don't garden if your physically able but take more breaks, drink and notice when you're weary and stop, don't push through. 

If you walk the dog ( who sounds super cute) , then come back afterwards and sit and rest together. If you do something even something  a small simple as a phone call then rest again and just be still. Enjoy your grandson but again maybe notice that you can't bring the same energy and attention for the moment, heal it now and invest in that and it will help , that's what I found. 

When the feelings of pain etc come , and they will, then if you can just watch and wait with them and try to focus on something else and slowly breathe. If things get worse then you know to do something but often you'll find it will subside and the pain will shift and change and with it you can let go the fear a little more each time.  Like Kris I meditate and practice mindfulness and did before sah but it's not for everyone but find your peaceful thoughts and cling to those when you get worried.

Take care and enjoy that Oz weather. 

Hi VG, well done on returning to work. 

In the coming few weeks just notice your 'red lights' and pay heed to them as the effect of being back will be slightly cumulative and so you may need to make more allowance intitially whilst you regain stamina in your world of work.

Work for those of us who have been able to return in some capacity is purposeful and can assist recovery further  but it shouldn't undermine your health either so continue to know yourself and educate those around you to understand a bit more, you don't need sympathy you need their empathy and that requires understanding of what has happened and why you need that support. You will find the right balance.

good luck. 

PJ. At the start there was so much I couldn't do beyond even the physical limits,. I couldn't be in a crowded room and by crowd read more than five people. Car journeys reduced me to tears of pain as did trains , I couldn't read a book or watch tV , loud noise wired me so much, but I was determine, read stubborn, that I would would find and explore new ways to get back to some things and figure out what I could enjoy. 

As time passed that's what I've done, explored and found my new ways of being and many are not as before, and some I have consigned to my rubbish bin of having tried it and it's not worth the brain drain ( big crowd events, fast trains, drinking to name just three ) 

It is a hard but normal reaction I think to listen to that ego to want to be all you were before but like any moment in history that is gone , we have to make peace with that and At the same time realise that the internal commentator we all have is probably the origin for Some of the greatest pressure and expectations in recovery  . . We are born into a world that typically measures success by what you do, how well you do it, often how fast or competent you are at a task and then throw into that mix the noise, pace and landscape of chaos you are often trying to juggle doing it. Then put brain injury into that mix. It's a big ouch of running into a brick  wall to be honest and pushing through often has harsh brain drain feelings and impacts which we all know are truly awful. But what do can we do? Sami S advice of not too much too fast Is best heeded. 

None of us advocate doing nothing at all or stopping putting yourself out there  but you have to find a new rythmn and pace that works for you , tailored to your limits, you effects and that will probably  keep changing for a while yet much like the rythmn of life. I went back to work after almost 16 months against advice because I wanted to know what I could do and explore that as far as I could take it and yes it is hard saying to people you need to step out of a situation  , or you can't do something but you have to measure any progress from a post bleed setting and see how far you have come and still are travelling.

Yes I might want to do something NOW but it doesn't  mean  I can or even that I should, I have to find the way to do it if it's the right thing to do ...I tell my kids that all the time.! Also then again most people I find are extraordinarily nice and kind about my story and When i tell them what's happened they don't expect me to just do things the same way  and in fact are often surprised at how 'normal' i may appear. 

So Pj, Pat and all others struggling with that force of ego, do keep asking yourself what is right for you in any given moment , right now is what matters and you are the judge of it and no one is going to pin a medal on you for doing more than is possible brain and energy wise because you will pay the toll, no one else. So be kind and considerate to self in doing what is truly ok by you .In the long run your brain will thank you for and I think it allows a gentler way to build your resilience and learn the new you.

evolution the SAH way! 

Hey Kris, I agree with Macca and Mario. It's important to stay hydrated and feed your brain well.

i think of it like this. Our brains run everything and need fuel to be able to do that, as we damaged them we are not as efficient with that fuel usage as lots is also going unseen into the process and energy of healing. 

So lots of small regular meals is a good plan. I keep snacks ( healthy) in my handbag and my car and I also  find that if I am not eating well my fatigue and headache notch up even now.

if you have things that you know don't aggravate your other allergies and contain energy then maybe make sure you have snack options of them on hand throughout the day especially if you have other commitments to deal with 

Hi Kay,

do you mean that the aneurism is at the dissection point where three vessels or arteries combine?

my aneurism was at the point of two main arteries and so whilst they coiled it successfully they couldn't fully fill it with coils as they wouldn't want to block either important artery and there was talk that if the small neck they have left changes then they would put a stent in to hold the coiling in place but I have regular scans and so far so good there has been no changes since, I make sure I keep my blood pressure maintained and am on medication for that but that's the only thing I do.  

I suspect they are concerned about 'occluding' these arteries and at the time clipping was the right and best option but the best answers will definately be found with your team to get reassurance on what treatment is best should you be more  and get them to draw some diagrams of what the options of clipping, stunting and coiling  are. 

I really dont  know anything about clipping I'm afraid. 

Good luck. 

Daff

Hi Pat,

its a funny thing to be a few years further down down from our bleeds as in the early years it was the struggle of overcoming pain, limits and barriers that took our focus. As we gradually knocked down some of those barriers or rebuilt paths we then find ourselves a little lost. The world as we used to navigate is different place to use now, the things we did effortlessly drain our battery packs fast or worse we know our enjoyment of them is less as this brain just doesn't process it all as fast or as well. 

I talk about about trade offs now. If I am going to do something that I know will use a lot of energy I try to reduce down my activity a little before and plan to do the same after, even then I can still end up in a darkened room but I think it's worth it, those busy times are important. 

When i go to the pub it's hard. I am still quite noise sensitive and dealing with Background noise as well as following conversation means I have to take regular ' loo breaks' or step outside and there are some Places just won' t go to anymore as they are too echoey. I scan places now, 'where's the speakers' ' is there a quiet spot' and I am happy to ask for a quieter table or put in my ear plugs if needed. 

I plug in lots of buffers between things, I don't race from one thing to the next but pause and take moments as and when I need them and I make no apology for that. 

I still get surprised by what effects me and if I am honest I still battle with my ego of what I think I should be able to do five plus years on using what I used to do as a comparison. My ego still gets me into pickles which means I end up using way to much energy way to fast. So when I don't listen to that and instead approach everything with a bit more consideration and self kindness then things are better. 

But singing does work wonders ?

Hi there, I found wearing noise reducing ear plugs helped me make the adjustments to noise and background noise and chatter that I needed.  I found if I went anywhere where the noise level was high either frequency or sound volumes then my tinnitus would increase  and my balance would go, the two seemed hand in hand.

i think there is no one easy way to resolve and the root cause is probably the bleed so maybe listen to the fact that the Tinnitus may br a sign he is was asking a little much of the brain maybe a little too soon , maybe strip  it all back to basics and build it up again if that is possible? Cut out some exposure to multiple background noises, wear noise reducing earplugs for public outings and figure  out what triggers the tinnitus to ramp up or down. It took a good year for my sensitivity to sound to improve enough that I didn't take ear plugs , now I still carry them with me always but only wear them in very Loud situations. 

its not an easy one, I have a low level hum like interference on an old TV set with me constantly and for the most part I don't notice it now unless I pay it attention but if the volume goes up I know I have asked a bit too much in that moment and have to dial down a notch or two. 

I Think about it like this, the brains ability to process all the constant sound level and waves it hears is maybe compromised a bit, and so it basically tries to block that out with more sound.  It's just my theory. Try concentration techniques of just listening to one thing at a time and paying attention to that tuning out Everything else. I found that by toning up my 'mono'tasking abilityand not letting the other become a distraction means my tinnitus is less loud . 

If all all else fails go and sit by the sea, the sound of the waves on their own create a rhythm which lets you relax and stop focussing  on your own brain wave noise. 

So no easy fix, sorry. 

Hi Elaine, you must have had an extra ventricular drain placed then when you were in hospital which would have managed the fluid if you presented with hydrocephalus as well. The hydrocephalus adds a complication in that it places vice like pressure across the entire surface of the brain so there is added injury from that as well as injury from the bleed.

Hydrocephalus is when the brain ventricles are damaged ( or blocked temporarily by the blood) and cannot absorb the daily production of cerebral spinal fluid. Sometimes after placing an EVD that is enough to correct it, some people also have multiple lumber punctures as well in addition in the hope the ventricles fully recover and some require a shunt to be placed immediately as theirs are too damaged and don't work or later as I did when it was apparent mine would not ever absorb enough to prevent the hydrocephalus recurring.

If you had that post bleed but no shunt fitted then please do stay aware of any changes or deterioration in your condition. An increase of pressure will affect balance, speech, and feel like a shutting down of sensations, you may feel cold and memory recall will become even worse, Do not ignore that and get yourself to a hospital and get scanned .

Im not saying that to scare or upset you but just that no one told me that could happen post my discharge so when I went in to see my GP with all my symptoms getting worse he packed me off to hospital telling me that was what was going on and it was. he hoped an LP would trigger them to work better for me  but mine didn't play ball so I ended up back in hospital 3.5 months later for more LPs and then had my shunt. It is unlikely that you would need that but as Macca says, 'don't wait for it to go away' or pass, get it looked at and that means a scan. 

Hi Vermont girl, 

I do wonder if you perhaps are asking too much of yourself in these early weeks since your bleed. 

It sounds like you expect so much of yourself and I have empathy with that as I felt the same way. I wanted to prove to myself and others just what I was capable of and so I often pushed past my warning signs and then I would have emotional meltdowns. Mine were more tears, but it's called emotional lability and you don't have the same triggers as before to set you off or the same controls. 

You need to start noticing your new traffic light system , it's like a temporary system which they keep changing. If you feel you have a green light with your brain energy then proceed but drive to your rules if you have an amber then start to slow and pay attention and if it's red, stop. Just stop. It doesn't have to be long but pure silence.

You talk about meditation but are you doing that daily? Also talking for me wore me out the most especially if there was multiple conversations happening I had to follow so pace yourself with how much you do, build it up. 

Take stock of where you are now, note what affects you at the moment and I would ask and take all the help you can get to manage your feelings. 

One thing to add, no marriage is perfect, it's a partnership that requires effort and work and sometimes it can be completely out of kilter so you're not being a pain actually you're being very honest and brace. 

The SAH really throws a spanner into the Worksop our predictable patterns,, we, who have the bleed don't quite operate the same way any more and the partner had to witness that loss and shoulder the burden of all the worry , caring and taking on everything, so basically both worlds and routines are rocked in similar but also very different ways.  Sex is hard to talk about sometimes. My libido was non existent post SAh and to be honest I had no physical energy for nearly a year afterwards and he was scared for me too.

I can't tell you things are back to where they were previously because they are not but we our relationship is different now, I'm different now but we talked throughout and made sure we kept up some levels of physical intimacy and caring and sharing contact even if that's just little touches.. Let him know what you need , ask him? Request hugs and offer and give him hugs too and both make more of an effort, baby steps to rebuilding that confidence.

I guess that's what I meant by lean in to each other. You both feel fragile and a little broken right now but together you are stronger. 

Hi Vermont girl, why would you feel you have wasted this time? Rest is important and using physical energy will take more out of you right now.

 Put your energy into the things that make healing better, work out what works for you and what doesn't. if you had broken a leg you wouldn't be thinking oh I should go out for a long walk, now think about the  the injury your brain got, imagine it like a big bruise across the surface of your brain where you bled and be considerate of that whilst you invest in getting better.

Go steady 

Agree with super Mario, this is one for your neuro team as diving I presume will bring considerable pressures to bear so definately check before you resume. 

Hey Ash, I had a lot of sickness and had grade 4 but I also had hydrocephalus which was primarily the cause for me but depending on where Dads bleed was it could have affected his balance and getting up swiftly triggers an effect like a motion sickness.

my suggestion is just to note how he moves especially from lying to being upright, do it gradually, sit a while. He could also try sleeping slightly propped up on pillows and see if that helps but I would get it checked at the very least with GP if not your treating neuro team.

also note his eating habits, more frequent snacking so as not to get hungry and let the brain run out of energy. 

Hey Yoyo , well done for having the courage to post and join the group and it does take courage to put yourself out there and admit that things feel broken and that you weren't as you are, that's a huge deal but we , as Macca says so well, know that feeling, have had those fears and together we are stronger.

First, and this is for you too Andrea, it's ok to be a little lost but when feeling that way offer yourself some kindness and generosity and self compassion the same as you would for others for what you are having to learn and adapt to. It's a big deal and no easy path. 

The SAH arrive with the force of a hurricane, each of ours unique, no one knows the path or the destruction it wreaks  as of course that is as unique as the person we were before. One thing we share though  is the brain we had before altered in that moment, it can never be exactly the same as before so change will be your constant as you find new boundaries that weren't there previously.  

Yes some people make ' full' recoveries and in that I read that they manage to reclaim their previous pace and style of living but many of us have no choice but relearn to do things, to learn the new ways that work for us now, find the new pace, and that takes time to adapt, to adjust. But it gets better with time.

 Whilst we are exploring this new operating brain of ours that our partners also are adjusting to the fact that this other person who was oh so capable before their bleed may not be able to do all they did , may never do it and whilst torn between wanting to protect you and keep you safe they also have a loss to deal with as that plan of your life and how it was going changed is gone and a new plan is to be made,

So great advice already. Talk if you can. Love makes that harder and easier. Easier because you want to lift each other up and harder because neither of you wing to hurt one another. But come together, lean in not out and it's the step towards getting this new future inked out together. 

I was 39 when I had mine. My life today is very different to that previously but Five years on My aspiration and ambitions have shifted to take the reality of my new state but I remain curious about possibility and I find happy in the smallest of things. The two year mark was the  hardest to be honest , I realised I was trying so hard to force myself to get back to what I was I was losing sight of what and where I wanted to be. So I focussed just on taking each day, celebrating the little and big victories and sitting out the storms each time they hit.  It's a change in pace and you'll find yours. 

Hi boom and welcome to BTg, it's good that you may hopefully get some answers and some shared experiences that might help you make sense of how you've felt these past years since your bleed.

i had large bleed back in 2012 and looking back to a year before that I can almost pinpoint when I think i may have had a small bleed , nothing was conclusive in scans at that time but I feel that it was probably the case but personal speculation on my part as i cant ever go back and find out for certain. Karen who set up the sight often lets people know that in the time she has run the site it's a rare occurrence of a rebleed but it's always  important to get regular checks post a bleed until discharge.

You asked the following and I'll share my thoughts: 

1. Forgetful long and short memory issues. Yes, I saw a neuropsychologist after my sah and then attended a course to help me learn new ways to improve my memory and it has improved drastically in the last five years but if I'm tired or overwrought I still easily forget. They explained it's not your memory is bad but your ability to process the memory you are making doesn't work as well so you have to create some 'hooks' to what you want to remember, make mental pictures and associations, repeatable things that are said to you, write things down where you can see them. 

2 . Confidence and self esteem has left the building. This was a big deal for me as I used to be so independent and hated the dpendance I found myself in and I struggled but you just have to keep making the circle of what you do wider each time and try new things and work out what is comfortable for you now. Easy does it and be kind as you go to yourself. It takes time to build back up.

3.. No bearing in or on where my life is going. This is probably associated with the second point. Sit down and think about your strengths, you still will have many and find a way you can play to them. There will be something , ponder it and follow that path. 

4. Very anxious and uncomfortable in social situations. Again, the above wont  help but I found sometimes if you can actually manage to go places on your own and just sit and be there on your own after a while it's not as overwhelming to be part of it. Don't cut yourself off but try to find new ways to socialise that you are more At ease with

5. Feel as though the old me died 4 years ago. To a certain extent you have had to relearn what you now can do which before that you had 37 years of knowing the old one. So it's early days testing and explorinh new possibilities. Some things you will still keep doing but others are for finding new ways. Be curious and that may open opportunities that help you. 

6. Have stopped going out as I no longer drink alcohol as a result..I don't drink either since sAH and rarely go out more from fatigue but there are different ways to connect that you need to now consider and find sonething you enjoy.  Maybe something in your community, maybe helping with a youth programme teaching done of those 'fixing' skills in short bursts...socialising differently. Find your new way.  Helping others is a good tonic too. 

Sarah, welcome to BTg and what an inspiring and uplifting post of looking forward and dealing with the hurdles that have been put in your path. 

I did wonder whether you were a David Guetta fan but then realised it was a homage to our platinum coils, I have rubies as well in my shunt so figure We SAHers get a special  kind of brain operation where you leave more valuable than when you entered theatre. 

Im glad youre doing well, and loving the idea of silly dances after working on the pc that might be something for me to try, 

tell me do you hope to drive again in future or will you stick with public transport? 

Keep on keeping on and please share some of whats helped you on others threads, that experience is oh so helpful 

I used to get a lot of unexplainable cramps and sensations and I resorted to just trying to adjust my diet to make sure I was bringing in a lot of extra minerals and vitamin rich food. I found not letting myself get hungry really helped and I actually had some food supplements for a while.

my doctor did blood tests as well which found I was a bit low in certain minerals so I took supplements but you should always consult a doctor before doing that.

i speculate that the brain uses so many of the nutrients it gets faster when it heals plus all it's levels are out of whack so for me that's what made sense and over time the termors disappeared. 

I agree with Macca and Win and Clare.  I think the hospital will always err on the worst case scenario but the answe is no one knows and don't forget in a way this is their normal everyday event so to a certain extent they don't allow for the individual who is behind all the interventions and what that person is deciding and what they bring to the fight. 

You know your mum and will know what her character and stubbornness may be like. Yes all the interventions are amazing and ultimately save life's but that done it is then in your mums choice to battle so keep encouraging her. 

The brain is the control centre and it's going to conserve and channel  lots of energy into healing and running essential bodily activity  so other stuff Is lower down the to do list and the hydrocephalus really wipes out a lot of function for a fair while. Have hope. 

Glad it went ok and hope the journey home went well. 

Hi Tori, 

firstly I'm so sorry for the heartache you and your family are experiencing right now but you are doing all you can watching over your mum and helping her to heal and she will feel and know that love. Talk to her, put pictures up round her cubicle sing and just give it a bit of time to see how the effects reveal.

Noone can predict the outcome as we are each different , i for instance had a grade 4 and coiling and EVD placed its a considerable ICU stint and like Win I also had a shunt placed at a later date but was fortunate not to have the infections others and your mum have had which does complicate and delay recovery. I now don't think in terms of recovery  but more my evolution of adaptation that continues today five years on from my event

 The effects of all the drugs, the multiple operations and procedures she has had and especially the LPs she is now having will be leaving your mum completely wiped out and can be suppressing any ability to respond. I suggest keeping a diary and getting everyone who is visiting to note anything in it and also to just keep encouraging. In my quietest and stillest of times I still could always feel the love. Talk to your mum, let her know how things are getting on, play some music and give it time. 

Always hope to be had. Take care of you, she will want that as well. 

Hi Andrea , sorry I missed this so I hope your cold has improved and you are recovering from that now.

I had to have a second operation post my SAh , not to have a plate like you but to have a shunt put in so I know some of what you are feeling.

They will really look after you in the hospital and the pre and post operative is very attentive at least it was for me but if you are worried when you are there then tell them, ask for someone to hold you hand as they do the meds, don't be shy.

Its hard facing any operation and especially when you still feel unwell as we do post SAH but remember this is being done in a non emergency situation which is much better and the outcome is that it should improve life for you. So it's ok to be scared but focus on what the benefit of having the operation is. 

Also I had a friend who had a craniotomy and she had to wait before she had the plate replaced as well and she was said she saw it as a gateway to being able to wash her hair properly so hopefully that's the same for you too once everything has healed well. 

Good luck.