Daffodil

Davie, if you haven't had invasive brain surgery , a EVD placed or a seizure then technically your GP can clear you to drive post SAH ....can you tell i spent far too much time on this. I'll try and find the other thread with details but there is a document that explains it.... Edited to add. In this thread is the link to document , may find it useful to explain http://web.behindthegray.net/index.php?/topic/2166-dvladriving-advice-needed/?hl=dvla

Hi David. Emotional lability is the official term for it and it's very common post stroke. I would see a baby, puppy, a nice book even and cry...yes seriously, but it got better as Sarah said quite quickly and although I'm quicker to cry I think that's becuase I know bottling it up makes my head hurt. Take care. Glad it's of help here, someone will always be able share an experience and offer an encouraging word or two.

Hey CodeWarrior , no I haven't had acupuncture since my SAH but I have had some gentle massages which has been good. I think my shunt is fine , thanks for checking, I've just got back from my annual MRI today which I have as I have a neck on my coiled anneurism so they keep an eye on me and I expect they have a check on the ventricles and shunt whilst I'm there , anyway either way a yearly brain check is reassuring if a noisy event for me. Anyway I guess I also wanted to say please stop giving yourself a hard time, none of this is easy what with the bleed, the surgery and how they place the shunt , it all plays havoc with emotions and our normal rational thought. Be kind to yourself. That goes for everyone. One positive , (I think;) ) is that my journey with all this means I have had lots of experience of pressure change which means I do know my signs of both low and high pressure so I would hope that I know if my shunt was over draining or under draining, I am reknowned by my neuros to be super sensitive to any pressure changes. Ive helped them understand the feelings a bit more to be honest and how it physically manifests, it's why I had to have my shunt setting changed quite a lot early in. No guarantees in this life but plenty of opportunity. so keep smiling even if we are a little bit broken

Hi Paul. I agree with SUper Mario the shunt community Can be a scary story. Like you after I had the shunt placed I went in search of groups that might help and to be honest they didn't, it just fuelled a worry that this bit of brain kit I now had for life might fail anytime and that's a scary thought. So I stepped out of those and educated myself ! I know my signs and now I just ask here or my Neuro team for advice. I did find a local network but again it was mainly directed at people born with spina bifida who often have hydrocephalus and these conditions exagerate each other so just be cautious in taking everything you read and thinking that is how it will play out for you. You haven't had problems so far so no reason to think you will. Here's what I have learnt in my short time living with a shunt, I hope it may help you a little to begin to accept and adapt to life that's different. Shunts aren't perfect but the technology and advances in surgery and equipment mean that you should have many years together; worrying about it failing won't change a thing, you can't control what you can't control. You are worried it might be you, well it might not. The odds are that if something is wrong with the shunt you will know about it and you will have time to seek help. But again we don't have gurantees in life, our mortality is fragile and that's something you maybe need a little help to accept. I have accepted that based on my age it is a possibility I may have to have a revision in my lifetime but I'll take that over the alternative any day. If you eat well, look after yourself and take things steady there is NO reason at all why you shouldn't have a great life. Yes it's different to what you had planned , yes it's ok to be angry and sad but at some point you need to look up and forward and the shunt is actually the reason you can look forward, it's your everyday lifesaver, I am actually more than a little greatful for mine, it's the reason I get to kiss my daughters good night each night. Whether a shunt is working or not can be determined by scans which is why you must always go and get checked if you have worries. Sudden dizziness, high temps, vomiting....go get it checked. The scans, be it MRI or CAT shows up the the ventricle size and if this changes it can be a sign that the system is not working or blocked. My shunt was placed some months after my bleed if You recall and it was scans that determined that my ventricles still weren't draining properly. It is the shrinking and changing of pressure in these that causes the real pain with hydro and I went from high to low pressure may times so I am speaking from experience here. The risk if left unchecked is the collapse of ventricles which is why you must be kind to yourself and also know what's right and wrong for you. I had lots of scans initially post placement as they thought my shunt might not be working properly and when this happens they also do an X-ray series of the abdomen to check for pipe blockages. Please trust me when I say you would know something was wrong and they can check. You describe the 'looming shadow of shunt failure ', have a try changing your thinking to the ' the gift that my shunt is there'. It is invisibly working away each and every day for you. That's amazing really when you think about it. Think about people who live with inoperable cancer, those who await a transplant, they sieze the opportunity in each day , health permitting , and that's what your shunt is giving you the chance to do also, don't waste it in bitterness Paul. Try to stop looking back and scaring yourself with accounts that may not be relevant to your circumstances. We didn't choose this Paul, none of us did, but by building trust each day that your shunt is working for you and will be ok will help you move on. Just hope for the best and you will deal with it If that ever isn't the case. Thats all you can do here. It's all any of us can do.

Lovely Macca x

Both I didn't have to take a test and had the Evd and the shunt and like you Gemma have some cognitive lasting effects. It took a lot of chasing and my arranging a letter from my consultant before I got my license back but I think that's more down to the failings in the administrative procedure at DVLA than anything else....keep faith. Keep chasing .

Some wise words in replies and welcome. I'm sorry it took so long to get treated but you are here and we celebrate that with you. Just to add that the greatest gift you can give yourself right now is kindness. Imagine if this was your best friend this happened to, now treat yourself as that friend. Don't berate yourself for what you can't do, be gentle in pace with your recovery, be honest with yourself and others what is possible and celebrate all the small steps and always notice what around you makes you smile. The worry and fear you feel is natural right now so don't bottle it up it just makes our bruised noodles feel worse but the feelings will pass and you can always try Wins famous advice which has worked for many of us. Sing a happy song.

Michelle, Colleen, Gemma, Clare, louise and Kris thanks for your kind and thoughtful words. Yes it has been easier as the week has gone on but it's been a week of a bad head. I have my annual MRI next week so no doubt that is casting a shadow of uncertainty and is unsettling me but Bottling things up isn't an option any more for this head of mine So i have learnt I have to put it out there so thanks for being on the other side and listening and understanding, Kris in answer to your question. Yes. Every time I have tried to regain , whether it was walking in the early days or getting in a swimming pool for first time again (threading a needle took me months to learn and coordinate to do) there is that fear and inner self judgment of what if I can't find a way through or learn a new way to do it. Then there is the frustration at the realisation that some things still are out of reach but after the sweet success of doing something again for the first time again , regaining it, there is a little inner comparison knowing that you do it differently now and the energy it takes to do it is so different and greater. Externally people don't know right, they can't tell ? After all whatever it is you do still gets done, only we know the cost of having had to learn and find a new way to get there. I do ask for help more these days, I learnt that lesson very early on when everything was out of reach without help but now people see me do so much more of the 'normal' that asking for help becomes harder for me but maybe that's my ego talking.

Luke , Thanks for the comment on the thread but sorry to hear your mum is not great today but just to say if your mum can't sleep lying down then suggest that she try's to rest slightly propped up on pillows , I'd pretend I was a queen or something!! and turn off any distractions like TV but maybe just listen to some very quiet music if she can bear that but if she is sick again or her level of alertness changes in any way then please do go get checked out. you mentioned her sodium levels were hard to manage in hospital and if she drinks a lot of water then whilst good it can also imbalance the system which is already knocked off kilter. It's a difficult balance, we can't give medical advice obviously but if you are worried about her then please seek help or phone her team at hospital for advice. Oh and I had a lot of build up drinks when I came out as I had lost so much weight in my stay and it seemed to help me fill the gaps between meals, so try and not to let her get hungry.

Beautiful responses by you all. Thank you. It was like someone wrapping me in a hug and giving me some hot chocolate ( someone singing funny songs too...win? ) I just needed to speak to those of you that get it. And you all do get it as I know as you live it also. It's not a bad thing but as Macca says we are the 'experiential consumer' in all this, why would anyone else get it? Another day dawns and despite a shocking nights sleep I feel ok this am. Sarah Lou I really appreciate your comment and was so thrilled with your recent achievements. I am glad the ear plugs and kit still help you, it's still my fall back emergency coping kit still too and only yesterday my neighbour asked did I still need my stick when out walking..." Yes unless I want to be sitting "was my reply . but I keep looking up and forward to see those rainbows. Sharlua, a bleed is a bleed, yes they are all different but that brain fog and the stealing of words is just as darn frustrating to us all as we know that wouldn't have been how we were previously but you're doing really well. Keep going. Macca and Win. Big thanks from me for your words. Win, you are a marvel and I would love to whisk you along with me when I do those trips sometimes but in a way you are travelling far and wide as the amount of people you now have singing in strange circumstances means we carry you with us, I know I do. In the words of Ernest Hemmingway ' the world breaks everyone and afterward, some are strong at the broken places '

Hi Andrea. Not unusual at all . I have a key ring on my front door keys with a medical ID symbol and engraved on the back of it states I have acquired hydrocephalus, my hospital number and also SAH and the date. I Also have a summary card I created in my notebook that stays in my handbag which summarises my treatments for SAH, my ' other' anneurism , my shunt settings and key contacts personally and medically and last but not least I carry a Hydrocephalus alert card in my purse. I think even if I didn't have a shunt I would have wanted to keep some form of record with me when I started going further from home. It helped my confidence initially to know I had something with me and also as my kids were young I wanted to be able to convey history without relying on them should the situation ever arise. I have used the card of my history a number of times at hospital and when meeting new registrars at check ups etc and actually having a simple condensed version of facts helps get across the key information so maybe try something like that.

Aw win thanks. This is why you are the no 1 shunt leader. I guess some days are just a misery day, they also usually coincide with rainy, weather changing days like today when like you the pressure changes and sits really heavy on me; makes my head hurts, I feel slower, my shunt area is all sensitive and I feel, well I feel ' bleurgh!' . Nothing is amiss though, no more drama than usual at home and physically all is well so i feel a bit of a misery complaining but well I guess most days it's a struggle and uses so much energy just to do the everyday stuff and today I'm tired of always being worn out. Family wonderful though they are don't get it, it's their norm now having a tired mum/ wife and they cease to expect it to be different but I do, I still wake and hope everyday that maybe today will be the day my fatigue lifts a little. I know the effort that goes into managing All that we all do and I need to remind myself again how amazing that is. Going to take my own advice and be kind to myself today. I'm still smiling Win, promise. X

It's not often I write or start a new post these days preferring to respond to other posts but on this dull and dank Autumn morning in the UK it has got me reflecting on how my brain and lifestyle has changed since my SAH and resulting hydrocephalus and I guess I want to get that out there into BTG land. Prior to my SAH I ran life like many of us; at full tilt, leaning into the wind and busy busy busy. I am mum to two young girls , I worked near to full time and managed a fair social life into the mix but much of that description is different now I sit and reflect nearly three and half years on from my 'event'. I am able to work part time these days, I am fortunate I can do this mostly at home over video calls and computer with occasional trips to the big city. That helps money wise. I drive again, not far and not long but I am mobile. I can walk at length but nothing 'spinny' or high velocity so I have a little exercise routine that works for me , I don't drink at all and am in bed by 9.30 most nights as my battery runs out but then. I feel my brain acutely most days. That's a strange thing to say isn't it but I imagine most of you will get it. I know most of the people I come into contact with Day to day won't give a moments though to their brain and how it's doing but having spent some serious alone time doing nothing but watching and observing my brains thought, it's pain, it's changes since SAH I can honestly say I feel I know my little grey neurons a lot better these days and so I give it more attention and consideration. If I don't it just knocks me to my knees anyway so respecting the limits is an important part of my new mode of operating. The pain , discomfort and fear that sat with me in the early years are really reduced these days but I carry the weight of my personal change of capacity and ability and it sits quite heavy some days. I miss the old me, the reliability of knowing I could just do something without having to weigh up or make a choice of what I can do today. Understanding and judging my capacity , pace myself, is something I have begrudgingly had to learn to do but I'd be lying if I said I had fully accepted those limits, it's more I know I need to do it that way if I don't want that pain , discomfort and fear to notch up. I miss being included in things, people don't ask me so much these days as they know I probably can't manage the travel to a venue or to a big noisy event without bailing early so our social life has shrunk. I still have great friends, don't get me wrong this isn't meant to be a sad post it's just one from someone who is still adjusting, still changing and can't help but occasionally looking back. I celebrate how far I have come , I really do, my consultant thought I would never work or be independant and thankfully I am able to be both but like most I guess we never stop wanting more progress, more advance. Greedy really. The thing I struggle with still is that my brain never gets fully wound up no matter how much I rest, how much I pace, how much water I drink, I still always wake tired. I'm like a clockwork toy that you can't keep wound up. In fact most mornings I have to be woken up . The family have a routine, my daughters and my hubby are all getting ready but I am left sleeping and you know what I don't hear a thing of the noisy morning bustle and then they wake me with a cup of tea It's really sweet of them and it's a gentle start to my day but with you I can share I feel guilty that I just can't manage to wake up any earlier and when I do wake I sit with what I only describe as hangover head for a while, no bounding Out of bed for me unless I want to fall. My hydro team suggest this is more the shunts effects than SAH but it's a hard legacy, a small legacy really to swallow all things considered but I start each morning with renewed reminder and knowledge of my limits for the day. Oh it's a strange thing to live with a rearranged and damaged noodle but it's is glorious to have that challenge of life and be one of the lucky ones. Onwards. Keeping hope. And singing of course.

Hey Luke. So glad mum is home!! That's an amazing feeling when you get to come home but yes slightly odd as one of the first of many realisations as you cross the threshold that you are a rearranged model of the one that left. You look the same, recognise yourself in the mirror but your thoughts jumble up a bit differently and you may not do all your did and that's odd and hard and takes a good while to adapt to. But adapt she will. I was slightly euphoric when I got home which created false energy levels for me, it was almost a chemical state. I think I was convinced in my mind I would pick up where I left off But physically my body didn't join in for me so For me it meant I would just fall over all the time...it was a time of many bruises and I had a babysitter for a good while after discharge If your mum is feeling well and her energy levels are proving constant and she is drinking well then as you say it may be a good thing, try and get her to pace things if she can though, don't baby her but suggest that after each thing she does she just rests that brain for a few moments. Also if her feelings , energy or mood change and you are worried she is doing too much you can always talk to the GP. They won't discuss your mum directly but may offer you some advice.

I would be surprised if the critical illness doesn't cover stroke and as Karen says I think that's the angle to go for. Also an offer of a letter from Gp consultant may well change opinions. Ask them to clarify exactly why an SAH and bleed on the brain is not considered a critical illness , there's not much more that is critical than that and most don't survive it . Go back to them. Don't accept the first answer.

Luke. Good to hear about Mum and glad headaches are under pain management , it makes a difference to mood and wellbeing when that is controlled , sounds like she is having good attentive care. Super Mario is right about the water, you will hear it mentioned a lot on here. Even now if I don't drink enough water or fluids in the day then my head lets me know so let mum know this is a new habit for her to get used to and its a good one. In hospital that was the one thing they were not compromising about was to keep drinking so keep encouraging her. They will monitor the minerals and levels closely and if needed can supplement so she's in the right place if there is any change. Your Mum had coiling yes but not a external brain drain fitted? Remember her brain is working hard to get rid of the unwanted blood and which has disrupted all her natural levels but my personal theory is they think drinking water has something to do with flushing and replenishing the CSF which of course got contaminated with the bleed but don't think that's proven anywhere but based on our shared experience it really does help.

So I'm not going to tell you not to worry as its natural to question and wonder but I agree with the other two and also the time spent worrying will just rob you of some time you could spend doinb some more enjoyable stuff. Sometimes the NHS can surprise us in its ability to be efficient so hopefully that's what's at play here and if it isn't then just hold onto the fact that there can be nothing too amiss as you would have been straight in by now. My annual MRi date just got scheduled , a little later than it should but they called me to explain that's because they wanted to give me a later appointment because they know it's a journey like Wins and want me to avoid rush hour and it was the first they could offer. Sometimes human care, logic and thought does come into play!

Hi Luke, sorry to hear about your mum and of course she will be disappointed not to be able to come home but she will soon hopefully. Words of wisdom, well I was 39 when I had mine so my kids were a lot younger than you I suspect but things that helped was having everyone understanding I would need some space and time out for peace and quiet and rest and encourage me to do that, also not all talking at once when I was home, allow me to build the noise tolerance back up gradually . As Win says any drama is not good so understand that situations may affect her differently and be tolerant. Also I found having some meals ready prepared by friends was fabulous as I could t stand up for long after my long stay and ops and neither could I cope with laundry and cleaning, i couldn't do that for a long while so friends and family stepped in to help hubby do it. Made a big difference. Sad to say I am now back cleaning and washing Also just offer to accompany her if she wants to build confidence in things she used to do before and feels a bit nervous about doing them, that can happen post SAH. Good luck, regards to you, mum and dad

Mandie. Physical stamina was a big thing for me and really bugged me if I am honest. I went from high speed to less than snail like and like you had two surgeries in quick succession. It felt like I would never get my stamina back. Here I sit three years on and it's very different picture and whilst i can't do what I did how I used to do it I have new and improved stamina levels but I just need to make allowances for myself. As an example I have two kids who are now aged 12 and 9 and on our recent holiday we walked everyday for quite a few miles with the dogs. My allowance was I took my walking stick which I needed for standing and balance when I was discharged but now walk without so that I could stop and rest if needed as my balance can still surprise me. I also then added back in my little time out rest in the afternoon. That way grumpy mum didn't show up from too much fatigue....well not that much anyway. The key is too build up very steadily and if you get the funny head feelings then it's time to stop and try again another day. Some things I used to enjoy I can't, so yoga with inverted moves are a no these days but I exercise every morning with light hand weights for a gentle cardio work out but done at my pace. Kids giggle at my efforts but it wasn't long ago that I couldn't lift anything, I even practice balances although still topple onto bed from time to time keep hope and you'll be hiking again mandie

I was advised to steer clear by my neuro more to make sure my BP remained steady so the most I ever have these days if I am feeling adventurous is a small lager shandy! I figure I had more than my fair share in my youthful days and I don't miss it at all now. If I want somethjng for special occassions I have elderflower fizz which is delicious without the topped up headaches.

Clare. Good advice from Win. Enjoy the holiday. Enjoy the break and try to chill and have some fun. Employers do have to consider your request for flexible hours or amended contract hours seriously but realistically the consequences upon them of refusing you are small and its pretty hard for the employee to chase so maybe use your break to think about what you would like to do longer term. if he's really refusing your very good suggestion then working for an inconsiderate employer could be more stress than it's worth. I realised you are on SSP but that doesn't continue long term either so worth putting your suggestion in writing to them, detailing it properly and asking them for a response and then if they say no to that offer them the alternative of how long it will take you to get to full time, be realistic though and ask them to reply. Just sharing my view. Gemma, sounds like you are getting some good support and I know you have had similar challenges to me with the cognitive issues. Keep taking it slow as much as they allow, it pays off. Occ health is so right about the brain injury taking much longer.... used to be no one who had a stroke or brain injury could go back to work, but we have learnt so much more these days that the brain can heal but it has to do it slowly and without extra demands and not too much sensory stimulation to contend with but work can really help and of course pays the bills!!! That's hard for employers to understand, accommodate so I can see why it falls down so much. Frustrating though!

Great to hear Mrs subs is being well monitored and hard you caught this. Hope it's rectified sharpish for her

Aw honey this sound like a dreadfully hard situation and home life is fraught. Sending you a smile and virtual hug for coping so well with this and your own health. Like Win I don't have much to offer to be honest. Does your husband accept his illness? Does he have help or counselling? Do you and the kids? Depression is a dreadful illness and it consumes people and families. Your memory isn't the issue here, yes you forget things and you are going lose and forget more the more stressed you get so do yourself a favour and be kind to yourself about how well you are doing. Sounds to me like you really need some help. Please ask for it, go see the GP and tell them. Ask them to Sign hubby up to https://www.bigwhitewall.com/landing-pages/landingv3.aspx?ReturnUrl=%2f#.Vfp64IGkqrUand also maybe set some rules in the house that if anyone says somethjng negative or unkind they have to follow it with an apology or a nice word or put money in a ' intolerance' jar ! it sounds cheesy but you need action sometimes to break some habits of behaviour.

Hey Clare. Firstly well done for what you have acheived so far, I personally have yet to get past twenty hours but I and my employer have accepted that is all that is acheiveable for me at present and so that is now my working arrangement and I have accepted a role on that understanding. I think the key is communication , open and flexible attitudes from both you and your employer. Whilst They are right in saying most phased returns are quicker, (although 6 weeks is pretty accelerated) they equally must appreciate that each circumstance regarding health is different and that's why you must put plans in place so both parties understand what you are aiming for. Do you have occupational health support? If not then I suggest possibly putting in place two week check ins with your line manager to talk about the previous weeks how they have gone and put plan in place for next two weeks and regular checks to make sure you are coping with the progression and increase of hours. Whenever you increase try to tack on some extra breaks in the day if they allow this. This collaboration helps the business and It helps you. It doesn't sound like theg are being unreasonable they just want to make plans and understand what may be possible. Lastly, and this is a tough one honey. They aren't obliged to keep you on sick pay for ever, at some point a conversation has to be had about whether you have reached a plateau of what is manageable for you physically, emotionally and preserves your capability to work whilst respecting your other interests and responsibilities outside work. At that point if you can do no more it may be a change of your contracted hours through a request for flexible working , temporary or permanent, or last resort, a parting of the ways which would hopefully be done in a structured and amicable way. Please don't get cross, it's not personal and also the stress isn't good for you. Think about what you want Clare. Where are you aiming for? For me, I wanted to know what I could do, I wanted the purpose of work ( the money too!) but most importantly I needed to know what was possible or not but I knew I probably wouldn't get back to full time, my doctors agree with the cognitive defects I am left with . I was quite a bit different in circumstances as I was off work for over16 months before medically I was considered fit to even start back and It's taken me a long while since then ( 18 months) but in that time I have found new limits , gone past them,, found new ones again within my other life demands and I am lucky to have been able to negotiate and have support to make that work for me. I know not everyone can take that time and their employers firms can't absorb it but flexibility is key on both sides. I am still aiming to increase things and my hours but I will do it slowly. Talk to them Clare. They value you, help them to understand.

Hi Jerome. So you picked Jerry as your avatar, how apt as you really have been through some scrapes like he does but I hope you will also come through it and get your cheese ! The after effects from the bleed are scary and then there is a horrid cycles of the fear and anxiety we naturally have releasing chemicals which further irritate the injured brain and it's all gets pretty terrifying at moments. When it's bad try and breathe slowly and deeply and let it pass. The more times you can let that happens will build back up a little bit more of confidence in your body. You're not a freak by any measure, you have had medical issues but you are indeed a survivor of something that takes time to recover from. Maybe you could write a diary, it helped me to keep track and each day find three things I was pleased about. It could be the simplest of things but that's the thought you focus on. There will be things that are improving and those are all worth celebrating. Also set yourself little challenges, not too much and don't beat yourself up if you can't do it. If the sensations are increasing in any way then you should always get that checked out, that's my mantra in all this, if things get worse then don't ever ignore it but do be be kind to yourself Jerome. Sounds like it's been a very hard time for you. We know.