Daffodil

I'll share my theory on this. It's just a theory, I have nothing to back it up. I am not medical so it's probably complete speculation but I am very sensitive to my pressure changes which is attested to by many of my doctors! I think when we get stressed or overdo things that possibly our ventricles produce a little extra CSF fluid, ( the scientists are not entirely sure what triggers CSF production) . Anyway maybe it's in anticipation of the 'flight from danger' we it thinks we are about to do and it wants to cushion the brain. So I wonder whether the brains absorption ability of the CSF is affected by the effect of a bleed on its surface, (mine Definatly was thus my needing a shunt.) and then it takes a little longer to be reabsorbed to the natural balance than perhaps before SAH. It's just a thought. I know if I get very emotional, be it sad or cross then I get a high pressure feeling, but not for long now as then my shunt kicks in, I can feel it. I don't think that it's anything to be concerned about, but chek it out if your unsure, i do know if you had very high pressure then honestly I can tell you from experience that you would know you need to do something about it. The best remedy when I am high pressure is quiet but to keep my head slightly raised on pillows and wear a eye mask. Treat it like a bad migraine.

Hi. I went to the big smoke to get my results on Friday. My MIL came with me so that I didn't forget what he told me. They confirmed the tests showed my short term memory and concentration levels are affected and that this would probably be exaggerated by fatigue. The rest of it was a bit woolly, nothing black or white, just lots of ' probably' 'possibly'. They went on to say that it was not uncommon to see this effect in SAH survivors and often he said the impact he witnessed was quite broad rather than what you might see in a specific brain injury area where one thing or another is affected. He felt that fatigue would exaggerate my deficits. We then laughed as I asked him if he would be sending me the findings in writing as I might not remember everything. He agreed that would be a good idea. So sharing some suggestions as to what I already adopt or he suggested below to help with the memory , fatigue and concentration in case it helps anyone else. Oh and he is referring me to join a SAH group...I wait to see what that involves. Helpful tips that we discussed. Pacing daily activities Earplugs in noisy situations( i use vented ones so I can still hear) Sunglasses in bright lights Taking time out during day to have quiet moments Explaining to others that I can't do what I did...I wrote some blogs at work which has helped get the word out Taking Bitesize chunks when trying things again Being honest about what I can do, knowing when doing something will exhaust me and saying no Listening to audio books, helped with memory, and online brain training I'm sure the are loads more that helped people. Interesting though. Glad I went as don't feel it's all imagined now

Oh bless you Tricia, you have had a rather rollercoaster of events. I am glad that it sounds like your hubby is stabilised now. Sounds like he is a strong chap. Can't offer anything on the centre being a southern lass but can always offer a listening ear if you're worried about anything or have questions. Hope you are doing ok.

Kayliegh, the DVLA are following procedure as with any invasive brain surgery it is stated it should be 6 months before you can drive, an EVD is specifically mentioned in their guidelines so I surrendered mine after I discharged. i Had to wait a while longer than that which you can read about on the DVLA thread I then reset my clock to another six months off driving from when they placed the shunt! Take care. Sleep tight, it's early days.

Hi Kerry Take things easy and be kind to yourself, that's the main thing. Don't expect too much too soon. I found a warm Wheatie bag helped me with the back pain. Keep a journal of how you're feeling, that's useful. Cry if you want to( like the song says!) and rest and hydrate. Hope to hear from you soon Take care

Hiya. Hope you're doing ok. Yes I had an extra ventricular drain placed for hydrocephalus last March. the way it works is that you have the burr hole and then the tubing runs along under the skin and exits about an inch away to minimise infection. Out of interest Did you know it's considered to be one of the most cutting edge brain surgeries done today? They enter the 'holy grail' of the brain to be able to place the tubing. That's what my registrar told me anyway. Mine stayed in place for about three weeks and used to occasionally leak but from when they took it out it took about three to four weeks to heal up after the took out the staples. I'm estimating that as the first from the first time I had a full hair wash which was about a week after discharge.. Like Louise I also now have a shunt as my hydro returned. If you have any pain or swelling or change in this area or as you say some seeping then I would strongly urge you to get it checked out to be on the safe side. Please feel free to pm me on the subject.

My phased return continues and today I went into London for the first time for work reasons post SAH. It was a big test of stamina and concentration. I had agreed I would just stay a two hours as it takes me a 3 hour round trip. It was basically a large community meeting to discuss company performance etc. they were very sweet and the HR director welcomed me in the opening address, which was an unexpected but nice surprise. My earplugs stood up well. My hat and glasses were admired and I am now back home feeling tired but pleased. I dont know where I will end up work wise in the long term but today I was proud of what I did and thati stuck to my resolution of not overdoing it and staying longer.

Karen, nice thread:-D There are So many things to be happy about but here's my top 10 of activites that I am proud and grateful that I have been able to reclaim them to some extent post SAH. 10. Swimming 9. Cooking 8. Cycling 7. Driving 6. Baking 5. Sewing 4. Swimming 3. do my daughters plaits 2. Lift my daughters up 1. 'cuddling' with hubby Yesterday I sat in the shaded sunlight After a morning at work and just was very still, something I didn't do much prior to SAH. I also watched a calf take its first steps in the field behind our house, beautiful. Mostly I feel very blessed to be here. This time last year I was back in hospital in a bad way and it all felt pretty miserable and physically and emotionally I was shattered. Now the pieces are coming back together but it's shaping up with a slightly different landscape.

Win, you're absolutely right. I didn't mean to come across as patronising and suggest ' oh well you should change jobs.' and think its that easy . (David , i hope u know that as you and I have talked about your work situation... )I guess I just liked the advice on that blog about what practically you can do to relax when you can't change things in your job. Volunteering is amazing and rewarding but I am aiming to get back to work full time eventually, we need my salary to unless we want to drastically change things but I am incredibly lucky to have a company that gets that you can't just get back to what you used to do productivity wise overnight and are being patient with me....for now anyway. I just wish that understanding for David so he doesnt have to push so hard but know its probably as likely as a pig flying:lol:

Like Sarah my BP was picked up as raised in the months before my head pop. No reason, otherwise fit i was fit and healthy. Post SAH and I have a little tablet each day to manage it and keep it low. They wouldn't want yours raised too much with history of a bleed so best get it checked pronto, it shouldn't mean no footie. But seriously how did you play footie in that heat:shock: ? I suggest iced drinks and more shade today...

Glad that BP is under control.Glad you are slowed down a little but try if you can to be kinder to yourself David. Sharing a great link to a blog from a doctor who talks about the importance of engaging in work you love and not just sucking it up and how to relax if you can't change things...it's not too fluffy:-D. http://lissarankin.com/why-engaging-in-work-you-love-could-save-your-life#more-1742

Lesley, I think you have to speak up and this is not an ok state of affairs. A level of check and aftercare would be good. My daughter hurt a leg muscle and was asked to go back in two weeks , you hurt your brain! Getting BP checks etc is not a waste of someone's time. I would hope they would reassure you of that. I had some horror story moments in the care I received in hospital but also encountered super hero nurses and doctors and received some exceptional care and I personally think that this violent swing of contrasting levels could easily repeat once your in the care of your local team if left to the system as it works and you could easily Fall through the cracks. My experience has shown me the importance of creating relationships with the people who are important in my aftercare. I thinki have mentioned that I get monitered for life now so figured it was probably up to me to make sure I knew what care came from where and be sure that I was getting it. I now know my doctors receptionist and they know me, if I call they do their very best to find me an appointment when I need one. My GP and I have developed a fabulous relationship and other GPs at the surgery know my history too and he is a cornerstone in supporting my recovery . I have numbers of my neuro nursing team and as i got to know them well in hospital i felt confident in asking for help especially early on by phone or email. I figure that it's part of their job and my experience has taught me they really like to be able to help and appreciate being asked. I have asked for help, been honest about what I needed and when I struggled this team have shown that they are able to wrap around and work together and support me. I contacted Headway and they assigned me a support worker early on and whilst I don't need her now I keep in touch and the door is open should I need more help in the future. I had a clinic check at 1 month after discharge, a check up with my surgeon 3 months after surgery and lots of GP appointments in between . The same pattern repeated after I had surgery to have my shunt placed. You may be happy flying solo and I applaud that but I don't think it's too much to make sure you're on someone's list of people that they should check on and in with to be sure you are getting the help you need. We are all different, have varying needs and levels of rehab support but I would expect ANYONE recovering fom major surgery should at least be visited by a district nurse or have follow up appointments in the diary. If you haven't then I would make a little noise.

Yesterday I went for a neurophsycology assessment which my neuro team referred me for and I thought I would share how that went. My history is that I suffered a grade 4 SAH last March presented with hydrocephalus. The family were given a Very poor initial prognosis for me but after surgery to place a drain and a successful coiling I did tremendously well in my recovery up until the return of the hydro meant I had a shunt placed last July. Cut to now and I am on a gradual return to work and having many more good days but struggling with some cognitive issues, specifically concentration, reduction in previous depth of thinking and loss of words or misplacing words. At my last neuro check up the team thought it worth this getting checked so yesterday I spent the day in London doing just that. It was quite intense. I drank lots of water and kept my sunglasses on for most of it. It involved a lot of observation tests ( a lot of pictures of men from the 70's it seemed) and also memory ones as well. Mental arithmetic was checked and then there was the logic tests and word association and ' what's missing here' pictures. It went ok I think. I couldn't do some things at all though. Guessing the shadow animal I eventually said for one ' llama' just to say something Also during the test where I had to name as many animals as I could my brain kept saying ' banana' over and over.....managed to keep that to myself though so that's got to be progress. The outcome will be reviewed and I get to go back in a few weeks to get results to find out if there are some things affected that I can work on so it'll be good to know for definite rather than my kids just pointing out when I say something silly in the wrong place. They also mentioned they are doing a workshop for people who've had SAH so they would talk more to me about that when I go back. All in all an interesting and non scary experience. Hard work. Tough doing the train there and back. Mentally tiring. But overall good. Anyone else had these tests? What was the outcome?

Desy, I use arnica all the time for all the family for bumps and bruises and my family rubbed it on my poor arms for all the bruises from all the cannula's etc which helped. My hubbie who runs a lot uses a Arnica oil rub for sore muscles by Weleda, that's very good. Best thing I've found for swollen feet though is cool water, some Epsom salts and a drop of lavender oil, it cools and soothes.

In the days after I had my shunt put it I was in a really bad way. Pain. Unmanageable nausea and discomfort and this triggered what I now know was a full blown anxiety attack. I called hubby and said ' I need you to just hold me' . He told me to 'get a grip'. A few hours later when things were calmer I told him I loved him, thanked him for being there for me but if he ever told me that again then he could pack his bags! That said I forgave him totally because he just didn't understand what I was feeling at that moment and he told me honestly it frightened to see me in that situation. The key for us was we talked about it. His fears. My fears. I have had to be honest about what I can and can't do. He's had to be honest about how that has made him feel and how this whole thing scares him witless. We have faced up to the fear of it. I can't do what I did prior to SAH in the same way David and neither can you. I have changed subtly in character and more obviously in Many other aspects. I lean more on him than I ever did and am less solid for him to lean on, he sees a fragility that was maybe always there but it's more obvious now. That's quite a change for any partner to come to terms with. It's not about ' getting better now', it's about learning how do we live our lives together now. What does that look like, how can we make it special still and accept the changes in each other? Maybe your wife is trying clumsily to ask you to do that. Work out what works now for you both that gives you healthy and happy times. strength will come from loving each other despite all the change.... And Maybe a little more because of it.

So busy healing others Vanessa ,Please don't forget about yourself. Your brain and body is willing you to recover but don't forget to give some bedside manner to your thoughts and mind for all you have been through. The headaches are a gentle reminder that you are still very early in your healing. Do you give your brain some downtime? I do get exactly what you mean about the mojo. I SO want to do more but just giving that extra, be it in your case running, in mine swimming, can be the tipping point from feeling slightly deflated to really really off colour and uncomfortable. So then I don't and get annoyed that I can't. Bit like a child really. But look at what we are doing Vanessa? It's not wrong of us to want more of what we used to do and be but we have to be patient. That's just blooming hard isnt it. Life changed. We changed. You see it daily I'm sure that the only course open is to adjust, unpalatable though it is. I do think that acceptance brings new things though so maybe its not running for the moment but a new thing ,something that brings you the peace for now. I do wonder whether the endorphins that exercise releases is a bit like the stress or fear effect which is much stronger with me now, sometimes it's all just a bit intense for our recently traumatised head so then the big headache...Just me speculating... Just adding to this reply as just received this link to a new article in my email from Brain and Spine org from chap getting back to riding, one of his quotes resonated with me Vanessa after your post today "I knew from a few of my long practice rides that I would struggle to unclip my right foot from the pedals but the memory of what I had been through and the desire to reclaim as much of the old me as possible allowed me to dig deep and press on." full article is here. Inspiring.http://www.brainandspine.org.uk/back-on-the-bike-after-brain-haemorrhage-johns-story?utm_content=steph.forester%40btconnect.com&utm_source=VerticalResponse&utm_medium=Email&utm_term=Read%20John%26%2339%3Bs%20story&utm_campaign=Summer%20strawberries%20and%20a%20new%20Neurology%20Tsarcontent

You're not crazy. It will get better with time, I truly believe that and you will be happy again. soap opera writers could come to this site and read some of the stories and they would be sobbing at the real drama and tragedy that people are living day to day. I am so sorry for your loss. Miscarriage weighs heavy on the heart as bagpuss describes. You say you feel like a different mum, me too. That's not unusual I don't think but you have to get help to come to terms with what has happened to you. I have and am. You sound physically in good shape, yes? Then time to start working on the mental aspect maybe. it's worth it. Don't bottle it up please. We had a sudden and terrifying event explode into our lives that scarred our brains and body, you can't 'man up' to get past it. We learn to accept its part and parcel of us. In your case you've had to deal with the introduction of a new baby Into that mix with sleepless nights and all it entails. It's no wonder you feel like you do. I felt that way a little after second child and that was pre head pop!! The young years are so hard and I find any stress so much harder to deal with now, it's like the brain just doesn't have those same reserves. Maybe it never did and we just kidded ourselves we coped. Please go talk to someone. Are u in Uk ?Headway will help and the Miscarriage Association have some excellent support services. If you're in another country someone will advise where u can go for some help. Hugs

There's a great thread on driving on here worth reading and sorry to say your experiences aren't uncommon. My delay was also with my consultant. The way I expedited it was that my neuro nurse said if dvla faxed to him he would place it in hands of registrar to complete. And that's what happened. It still took a few weeks from arranging that but after waiting so long to get my license back I was ok with that. good luck.

Gotta slow down Davey boy. Yes jobs are important for paying the bills but your health is your only true currency. Please look after yourself. Listen to Paul , he's a medic, don't be playing russian roulette with that BP, get monitored. I'm hoping that you have been checked out and then please go back home and sit with your wife and have some still time and think about whats important and what you can cut out. You're always racing everywhere , fighting the machine. It's not worth it. You and your wife being happy, that's important.

Kris, so sorry you had such a rubbish day. I've had a run of them and feel totally fed up but I have done a virtual grab on my shoulders and looked myself in the eye and said ' this will pass, now rest and refresh and then go on'. I think I had let myself get super tired again? Had you? I spent most of today in bed sleeping on and off, I haven't done that in ages and my head is thanking me tonight. As for the crying. I am ultra convinced of the healing powers of tears, we can't suppress our emotions as the neurons just don't seem to have the energy to cope with them, what do ya reckon Kris, have the tears got negative charged ions in them... Take care Kris. I love the science and insight you bring to our little world but take care.

Sending super big hugs your way Win but please go and get this checked out! I have been told any tenderness is something to report. A simple series of scans will quickly check the shunt is working correctly, they are very non scary. You can do it Win!

Scoobs, are you getting back up and support from GP or consultant to get your license back. Without that support then it will be blooming hard. I don't know anything about benefits other than if you've been turned down then you should appeal. Again your GP support is vital. Did you ever get to meet up with Headway? Hoping things look up for soon.

Oh bless you and your mum. Such sad news. Your lovely dad is free from pain now and his strength and values will live within you always.

Oh Tulip, it just wasn't his time then and maybe now it is at least a peaceful goodbye and you have all that little bit of time to say the things you want to say. So very hard and so very sad. Thinking of you all and in my prayers. Hope you're getting lots of hugs.

I think we could all do with one of those. win rocks!