Daffodil

Win I had quite a few balance issues. My team put that down to the hydrocephalus more than anything as the fluid I think is quite crucial to keeping the spine in balance plus of course keep the brain bathed. I couldn't walk any distance in hospital , had to have someone hold me up , and when I was finally allowed off the ward for a wheel about and some much needed fresh (London!) air we used to giggle as the wheelchairs were often more skewiff than I was. I felt every bump and jolt, it was agony. Then post shunt it was the same all over again. When I finally discharged I couldnt get up stairs without help, a tiny walk just into the kitchen would exhaust me but that was my small target. I used to try and walk a little more each day and have done. My lovely mum bought me a lucky stick with a hares head carved on the handle, I promptly dropped it, fell over and the nose broke off, so my lucky hare is also slightly damaged like me, still we toddle along. If I am tired now then I fall quite easily, I just seem to forget to pick my leg up, my brain says it has, my leg didn't get the message and down I roll. I have gotten quite good at parachute rolls. I try and walk the dog on the days I know I have energy too and he stays much closer these days but not so close that I have landed on him yet. One other thing I have noticed is that when I meditate( which I do now to help me relax) if I do it sitting then I always tilt over quite drastically to the right hand side. That's also the side I usually fall on. I ponder that sometimes but not for long. I would love to run around in the garden chasing girls like I used to but having reclaimed so much I can only hope that I might get there before they get too old to be chased! A friend did say the other day that I am walking quicker than I was so my stamina is improving with time. We've done well Win. Little steps eh? Even if they are shuffling ones. Keep going my lovely.

Hello again. Glad u felt better today, that's good, maybe you did a whole lot less? Early days for me were full of tinnitus , inner head movements, wierd unexplainable sensations and then course the sickness. woah! A medical friend reminded me at the time when I expressed how awful I felt that not only did I have a brain bleed but they put a hole into my head and a pipe to deal with the persky fluid build upshot followed. That operation alone is considered a HUGE thing by neurosurgeons as its really entering the holy grail of the brain anatomy, The healing you are doing right now is immense but unseen and is taking massive energy from you. are you eating regularly and enough? I am at 18 months on and still get hit, like others do, by sudden nausea and dizziness if I do too much. I still have a open prescription for cyclazine for that reason. The tinnitus is with me still but not as loud I'm pleased to say. But I so want to do so much more... it's tantalising, it feels within reach but I have to continue to be patient, if i dont it bites me on the bum, well actually whacks me in the head. Please give yourself some time and space to heal. The early days are maddening as the physical symptoms are all encompassing and overwhelming. Do I think a ENT will help? I think getting a follow up with your consultant is the way to go initially and they can refer you if you need it. Not sure where you live but it is fine to call them back up, they just don't tell you you can.

So speaking as someone for whom the hydrocephalus did return I would strongly urge you to check out any changes in sensation or symptoms and yes that includes sickness. Dizziness and sickness are common effects post SAH so don't fear the worst, chances are it is a reaction to drugs ,SAH healing or maybe even a stomach upset. So I don't want you to read this and panic, I know exactly how you are feeling right now, but equally my personal experience taught me that ignoring key physical changes isn't a good plan. My advice would be to phone the ward who discharged you, it should be on your discharge notes , and ask to speak to the registrar. If you feel it can wait until monday then speak to your GP then. Other option is a quick scan via a&e.....I think you know you need to check it out to put your mind at rest that nothing is amiss. Ps. Win , get yourself checked too. Promise.

completely get it. that feeling of difference, changes in yourself and your abilities. everything is slower. a black and white film! I described it to someone that it felt like my filing cabinet had been emptied out on the floor and hurriedly put back and not everything is where it once was and I fear some may have been chucked in the bin and lost forever!! be Kind to yourself. there is no rushing this. persuade the type A within you that meeting your goals this time requires stealth and slowness, patience and more patience. get really good at that the forgetfullness is really hard. I write things down and find I have remembered them wrong so put dates in the wrong place. only this weekend I cried because I just completely forgot something I had arranged and I was so disappointed. thing is it will get better, in tiny increments, sometimes you dont notice, but it will. on the leaving electrical things on. honestly I just didnt use them early on, I couldnt trust myself to remember to switch them off. That said I had a wild haircut so never bothered with anything other than quick blow dry. I still leave doors open, pick up the wrong keys, but what I did was stick a post it note by the font door or on my mirror with one word just reminding myself. it did help. tiredness, stress, worry, these are things that our brains do not cope well with now. As the parent to a 7 and 10 year old I know that its never easy to switch of the parenting mode but just take it all down a notch, actually take it way down, he wont mind , in fact you may have some fun in that pace. youre doing well. its early days

Julie, what a super attitude and thread...so to continue in your vein.. I had a super cuddle in bed this morning with my daughter and then marvelled at the fact that both of them are so self sufficient these days, they had to be post SAH i suppose but it has stuck. They get themselves ready in the morning with little moaning and no assistance really. I know that this isn't the case amongst their friends of similar ages so very proud of them and how they have managed since that very scary time.

Oh I totally get you! I could always tell and in fact still can, how I will feel based on my little fontanelle as I like to thnk of it now! You know a babies fontanelle, the soft bit they tell you to be careful of and if it's ever sunken on the baby it means they are dehydrated. I figure the same applies to us. If my EVD hole is very sunken then it means I am running at low pressure, I up my fluids and rest up a bit more. Actually I am very weather affected so if the weather is low pressure( rain etc) then I find it harder. I know what my EVD scar feels like when I am running well ( it fits my fore finger exactly, don't laugh) so if it is too depressed or the other way the I know it will match my out of kilter feelings. It sounds to me like your drainage system is still settling down. It dipped very low pressure in the uk on a weather front this week and I felt awful, you may find you are picking that up too. If you feel any worsening of symptoms though, any tightness or are finding it harder to concentrate then get yourself checked out.

Hi there. Louise says it well, if you are at all worried then you should check it out. You mentioned you had hydrocephalus, did they place a permament VP shunt or just an EVD at the time? sickness and dizziness are common in our recovery but equally can be pressure related for me so I would take a cautious view and just check in with someone if the symptoms haven't eased up all week. I can remember doing the school run one day and it wiping me out for ages, even now one of the grandparents often does the morning drop off just to give me that extra time to get going in the morning. We try and kid ourselves that we can do it and the brain will remind you that it needs some space and time to heal. I used to count on my fingers how many months had passed since my bleed and feeling happy when I reached three , then four, then five months ...now 18 months have passed , wow. Yes still happy, still lots of steps backwards amongst the many forward but we will be ok.

Totally get this thread. It's how my life seems to twist and turn over the last months. I can have moments , days even, when I may appear to others that I am close to the pre pop Daffodil. Maybe it's a combination of suitable weather patterns coming together to make perfect climatic conditions, maybe it's my unwittingly having settled into a pace that works for that moment in time. Either way its nice whilst it lasts, im grateful for the opportunity of those moments. My problem , and sounds like I'm Not alone, is that this lulls me into a reassurance that I'm lots better, and I 'boom' which is swiftly followed by a kick up the bum by a 'bust'. Take yesterday. I didn't stop. I should have but I didn't put the natural breakS in. Then my daughter had pre bed meltdown which meant the adrenaline had a field day with me late in the day. Floored! In bed by 9. Up in pain by 11. Creeping head pain, trickling sensations down neck, I felt the fingers of the fear and worry start to grip me and finally managed to get a restless nights sleep and woke looking about eighty today:lol: today I will listen to my brain. I will keep hoping my improvements will continue but I also know I am blessed to have come this far. I admit to being afraid still at times that it'll happen again , but that worry won't change anything will it?

http://www.cuh.org.uk/cms/sites/default/files/publications/PIN1815_sub_arachonoid_haemorrhage.pdf This is quite a useful patients and family booklet that Addenbrooks produce; my GP signposted it to me even though I didnt go there . Anyone else get some good literature?

Hi jillian Hope today is a good day for you. Glad you found us and take each day as it comes, brain symptoms are such a pickle sometimes so rest as much as you can as it won't be rushed.

I started learning about and practising Mindfulness a few months before I had my SAH and this practise has helped me no end to find some peace in very painful or anxious times. I was never particulalry good at practising full blown meditation but the simplicity of focussing on the here and now in Mindfulness practise has helped me. Just last week I woke with pain and was able to calm myself by just focussing on the now, and that the moment would pass. It did, blooming long and horrid moment but pass it eventually did. Anyway I actually met this chap Professor Mark Williams pre SAH in my working capacity and I can thoroughly recommend his book “Mindfulness: A Practical Guide to Finding Peace in a Frantic World” It is based on up-to-date scientific understanding of mindfulness and the blurb says 'includes a programme of short but powerful mindfulness exercises that anyone can fit into a busy day.' There is a new book soon called Mindfulness for Health which I think I will try and post here if its any good. Anyway a friend from the centre has set up a venture teaching mindfulness into businesses but the blog they are keeping is actually very insightful and I thought might be helpful to some. http://mindfulness-exchange.com/blog/

Desy. That pesky wall. If its any consolation I too was feeling I was doing amazingly well at about 4 months in and then ended up back in hospital for another prolonged stay. I know , and many on here do ,just how it feels to take those hard and painful backwards steps if they come. The thing I figure is that when we had our SAH it was all so unexpected and beyond our control that all we could do was submit to it and wish , pray hope we would make it through. Also if youre like me i dont much remember anything of early weeks at all anyway, my brain protects me from that. So we survived what many don't. There's an exhilaration to be found in that so its a good feeling initially after we discharge and then our bodies start to recover physically , we reclain small mundane tasks and we kinda think maybe it's all gonna be ok. You've been dragged back to scarier times over the last weeks and that's very hard. My experience of that came as a hard reminder that we can't heal like we do from a broken bone and it needs time and acceptance and i needed help with that, still do. Accepting the pain and discomfort that comes from living with a lasting legacy from the SAH that maybe was hidden initially is also hard to come to terms with but you will manage it. I started writing a blog when I ended up in hospital again. I still write it now but less often but the first post was called one step backwards.. It was my way of telling people around me what I felt but couldn't say about living now with hydrocephalus, the fear of how everything had changed and also just getting some of the feeling out. I guess do whatever you can to get thru this. Youre never alone in it .Find what works for you and keep talking.

Julie. I hated it when my sleep patterns were skewiff, it seems to magnify everything else. Mine is ok now pretty much with the odd blip but early on when it was awful I made little changes each day to my routine and made a note in my daily acheivement diary if it improved my sleeping pattern. Here's some of the things I learned. I needed to sleep with my head slightly elevated, still do in fact, three pillows, yikes! Also like someone else early on couldn't sleep on my left side but that's where my EVD and later shunt was placed so that made sense to me, now that's fine. I needed a routine to wind down for bed, even if I had slept most of the day and spent it all in Pjs I still had a going to bed routine. Giving myself a very very gentle neck and shoulder massage with soothing oil worked well and I still do this now if I'm having a whizzy day of headaches. I couldn't let anyone else touch my head but I knew what pressure I could apply. Gentle sounds helped me get to deep sleep. A friend who suffered a brain injury in a car accident sent me a cd of crickets and tree frog early on, I must admit I thought " what the eff" but it works for me. Seems to help me switch off something my brain was struggling to do. So we are all different, i hope you find the things that help you

The lovely Win, super Mrs O. Poor you. sending huge hugs your way. I am definitely more of a cryer now with shunt on board and SAH legacy l and unable to cope with emotional ups and downs like I used to coast through them, now I feel like I have been through the wringer if I just have raised voices over kids picking up off their bedroom floor. Now here's the thing Mrs O, i have been very lucky with my neuro team and the shunt nurse (yes there is such a person) was almost on speed dial after I had mine placed last year as I took quite a while to settle and get a setting that allowed me to life 'normally'. One thing he said that stuck with me; "you're never wasting our time if you have a worry or something changes in how your feel as you know your body better than anyone." The site around my shunt can be super sensitive sometimes as can my head with air pressure changes and there's been a lot of those the last few days:shock: but it sounds like you are feeling a bit different than you normally do? does your head feel any different? Behavioural changes can be a sign that the shunt is blocked but equally you could just be under the weather. Is your GP any good? He could send you to local hospital for a simple scan series will quickly reassure you that all is well, no blockage or infection and its never better to wait if you're worried that something has changed. Shine UK are a pretty good support charity and knowledgable about shunts and managing hydrocephalus, I get their magazine and its pretty informative and they sent me some shunt alert cards which I carry. Also Headway's telephone support service was good I found if you have questions 0808 8002244. Win, if I was in your shoes( and I walk a similar path I suppose ) then I would see the doctor without delay if only for reassurance that nothing is amiss. It cant hurt.

debz. I'm going to generalise now so please excuse me. Most men like to move on quickly, it's easier than analysing their feelings and the dreaded ' talking about it'. I can imagine you were chief organiser, house controller and bottle washer and your life buddy is finding the impact of all that having changed a little unnerving maybe? He found His once capable, able and resilient partner and all round supermum is just a fragile as everyone else, if he works in a care setting then he knows the reality of that. I imagine he doesn't like the scenario very much, well we don't do we. Talking as everyone has said is the answer here. Honesty and compassion. I had hubbie tell me to ' pull myself together' and when I was back n hospital a few months ago he told me he found it very hard that all the feelings he had put away in a box were coming back out again and he found that scary but we are finding a way to lean in to each other and he quite likes the changed me I think. We scared them. Too bits I imagine. We had to deal with trying to stay alive and cope with pain, they had to face up to the chance they might lose us and then we are not quite back as we once were. Very star trek, " there's life Jim but not as we know it". If its more than that then I would suggest counselling for one or both of you. Talking independently is a very good outlet, I recommend it.

Yes to the sickness , yes to the tinnitus ,in fact both return I I overdo it...so rest and the it as easy as u can

Welcome Julie. Hope each day is a little easier and less scary for you. Finishing the nimodopene was a good day I recall; I celebrated with a kitkat in hospital and high fived the nurses even though it was still a while before I discharged but it felt like a worthwhile milestone and will be the first of many small but notable achievements you will make.

Hi Kathryn. I also had a basilar artery aneurism, i understand its right where the communicating arteries split up and like you had pressure build up and now have a shunt. Glad you said hello and that you've found this great place to come. I still get huge comfort from knowing that others can get what I feel and reassure for some of the odder symptoms. I have had all kinds of strange effects since last March and ended up having an LP and MRI only a few months back as I think they thought my coiling might be leaking based on the symptoms but thankfully all was good and so I go on taking each day. One thought on your symptom is I believe this artery is sited very close to where the optic nerves meet , i had lots of eye tests pre discharge to check my vision and if i am tired my balance and vision is the first thing i notice ...maybe there was some pressure pre rupture which is adjusting but its only a guess...hope the docs can work it out for you

Oh Lin, that made me laugh but also shake my head a little sadly at the familiarity of this. Today I too have been mixing my nouns up , yesterday I fell flat on my face because my leg just didn't get the message that we were still walking ( soft landin thank goodness) and earlier I tried to put a pad and pencil away in the fridge much to my duaghters amusement. I still find it scary how little I have left in reserve after doing only a fraction of an activity that I would have previously done unthinking but I guess the enjoyment of being able to do even that little amount knowing what could have been....well we all know that feeling.

Kris. Loved your post, yet again it gives me inspiration as I barrell slowly to my two year mark. I think we can all consider ourselves a member of the Slow movement for now which isnt such a bad thing and I for one find new wonder and comfort in the things that previously I may have raced past. I'm doing the Deepak/ Oprah meditation challenge at the moment, anyone else? I don't manage it every day but finding time to quiet my mind and rest has allowed me to quiet some of the anxieties and rest my poor healing brain but I think any meditative practise is very healing.

Aw Jo, bless you. Have you got family support, definately accept all the help with the kids that you can, they will be fine so concentrate on looking after you and they will benefit from that. Just get lots of cuddles from them as that's good therapy. The docs will thoroughly investigate I am sure and there are plenty on here where no anneurism was found Keep taking the cyclazine tabs as the sickness is common early on. I found I needed to eat little and often all the time otherwise it just got worse, when I couldn't face anything I would have one of those build up milkshakes, god awful things but I seemed to keep them down...bit like a hangover cure if you know what I mean. My hydrocephalus nurse team explained the sickness can often be caused by the effect of having lowered pressure of the cerebral spinal fluid and blood in it. Think how rubbish we feel after drinking too much.... I had an EVD too, remember that's going to take a bit of healing from that surgery regardless of the dispersing of the blood so be gentle with yourself, no rushing at this one, it's a slow and steady pace with lots of sleeping and water drinking. You're not alone. It's ok to be scared but we will try and make sure it doesn't feel too awful as we all know how it feels. Ask anything that worries u, someone will always try and help. I was 39 when I had mine last year, kids were older than yours but there was plenty of reassurance to be found here when I needed it. One last thing, if you are at all worried or something feels wrong then phone your team, I am hoping they gave you a contact number. It's also good idea to speak and make contact with your GP if you haven't already, it helps make you feel less alone Hope you get a good night sleep petal

I received my letter writing up my assessment today. A very nice missive and it talks about my processing speed having been slower and performance was lower on any task that demanded attention. It talks about the assessment in tems of validating concerns and empowering my family and I so that we can minimise the impact of my deficits on my quality of life. I wanted to share a few things that I thought were useful from it. 1. Memory aids are useful to keep track and will help minimise difficulties with attention and concentration plus help consolidate the memory 2. Structured environments will minimise anxiety and reduce cognitive effects so planning well in advance, keeping a routine and pacing are all equally important 3. It is important to have well defined and reasonable goals so you don't get overwhelmed. Taking things one step at a time is important as slowed thinking levels can be overwhelming and create anxiety 4. Utilise the support of counselling services and communicate needs and concerns to family and friends so that you can increase understanding of your difficult areas and manage others expectations for you. One thing I take away from this experience . Whatever our SAH legacy is we continue to have many significant strengths and if we learn about what the changes are there is no reason why we can't continue to change, adapt and progress just as we have done since we were born.

I had a little holiday last week with the hubby and kids. Something that wasn't possible last year as I was back in hospital so it felt very good and I am thankful to have been able to progress in a way that made it possible but the journey back was just awful and I wonder if anyone else has found that they have a 'tolerance' time for being in a car, especially if they have a shunt. I was a good lass on holiday, when I felt tired I signalled to my husband that I needed some time out and we didn't cram our days full, it was a 'paced' break and I learnt a lot and it was a happy relaxed time. Our journey down to the coast was uneventful, no delays and it took about 3.5 hrs. Coming back was a different story and we were in the car for just over 6.5 hours and it was very stop and start. We came off the motorways but then we were on windy b roads and I was in tears for the last half hour of the journey as the pain and discomfort in my head just got worse and worse. My pain tolerance is generally high and I try my utmost not to worry too much. Worry still gets in but honestly yesterday I was not thinking the worse but just found the constant head bobbing of being in the car was all too much. Today I have the stiff neck and hangover feeling. It literally felt like my head was banging against the sides of my head, thus my wondering whether fellow shunt club experience this or if I can just write it off as being one of my lovely SAH legacy effects.

Hi Debbie. Welcome, hope you managed to sleep last night. The others have already said but the feeling of tiredness and lack of energy is normal and does persist, im at 16 months on and still gettng used to it but it's lots improved since the really early days. Main thing is to rest as much as you can to give the brain down time. You say you don't like to rest, me neither, but I set it in like a small shallenge each day and something I could tick off having achieved! As we start to look our ' normal selves' again people find it hard to understand that actually we are still battling to recover a measure of our previous stamina and activities which can be hard, I have found I just have to remind people of that. Take care now.

Wem, we get it. rest up, it's all you can do honey. it'll pass. I was trying to explain this to someone yesterday, I basically said I was like a short play record that had suddenly switched to long play...remember doing that on the turntable anyone? ...didn't half make the songs sound funny, long drawn out sounds. I'm a much slowed down version of my former self. Seriously though Wem, the memory of the rush and the bustle and the freedom to just do what we wanted, whenever we wanted, it's so tantalising isn't it and yet for now out of reach. I like you am back working, not up to full days yet, and then when I throw the kids into the mix I have to throw regular rest stops in just to be able to function. They at least at used to mummy needing to slow stuff down but I find it exasperating. But we creep forward. And we are making progress. You know you are Wem. Keep it up lady! Maybe it's the rabbits being to demanding