Gill C

lison my Dad had a major bleed/stroke when he was in his mid fifties & was in hospital for a long time & then at a rehab unit for 12 months. At the first family meeting with the nursing staff my dads first question was about his sex life (la la la laI can't hear you!!!) My mum was beetroot red & I was so embarrassed!! My dad also swore a lot more & in the early days used to say he saw the nurses getting into bed with the patients. It did get better, gradually he learnt the boundaries of what was acceptable & what wasn't!! Its a huge thing that Chris has been through & his brain will be rewiring like crazy right now, it's tough but he will get there trust me xxx

So pleased to hear Chris is improving hugely, tiny steps & who knows what he will be able to do , especially with your support xx

I am in the same situation in that if I went back to work it would be a new employer.Not sure this is right but I'm sure I heard somewhere that by law you have to declare your SAH to any employer but its up to you when you disclose it (but I think it has to be before you start working for them) Lynne is your best bet to get proper info on this as I am only 50% sure this is a fact!! xx

I think my angio was about 1/2 hour but then you have to lay flat for 4 hours I think it is.

Hey Dawn good luck for your review. AS for the Angio I was awake when I had mine & the most painful thing was them pressing on my leg for ages once they removed the catheter. I think it took about 20 mins to stop bleeding. You really can't feel anything when they do it & the only wierd bit is when they go into the artereis & inject the dye, you get flashing lights behind your eyes but it really doesn't hurt Good luck hon xxx

Hi SBN I too was treated at wessex & clipped like Sarah Lou, unfortunately when I was first seen at QA no one took my headache seriously & I was sent home with no further tests. 10 days later I ended up at the eye clinic as my vision had started to blur & my right pupil was beginning to dilate, a CT scan later & I was sent home yet again although a lumbar puncture was mentioned but never done. I waited 17 days for a MRI scan by which time my right eye was full closed & when I opened it manaually my pupil was so dilated the pain from the light was intense. I had an MRI & a further 8 days later they rang to say they suspected I had an anni (it only showed up on part of the MRI) behind my right eye. I went into Wessex the next day & was operated on the day after that. My eye opened virtually staight after the op but my pupil remains dilated & doesn't respond to light & doesn't move at the same time as my left eye. I am 19 months post op & the greatest change was in the first few months so now it looks like I will have double vision forever, I wear a patch on my glasses so that I can drive (my left eye prescription is fine for me to drive as long as my right is covered). I can get single vision for distance but anything close up I just get a image over the top & slightly off centre. As I didn't have a rupture its more a case of the damage that has been done to the nerves which control the muscles of my eye. Like Bill it was mentioned about operating on my left eye to make it move like my right, I am not keen on that suggestion either & the orthoptist said my eye was too unstable still to consider it. The only option they have really given me is a cosmetic contact lens which I would not be able to see out of but woul look like a normal pupil. If you have pressure behind your eyes it could be residual blood from the bleed still, the best thing is to get it checked as soon as possible. as for the headaches & eye pain yes I still get them, stabbing pains behind my eye. Both are lessening now but when I do too much they are always worse. As for fatigue most of us describe it like hitting a wall, not painful but the utter tiredness that means you cannot do anything else no matter what. AS you were busy you probably missed the signs that were becoming tired but you will learn the early warning signs & take a rest before you become worn out Hope some of the above helps although my eye problem is probably very different to yours xxx

Just the best news Jess, so pleased for you xx

Dawn yes headway are a charity but they did receive a charity grant from the government. that money is no longer available as they are making direct payments to individuals who can then choose how to spend it for their own care. The problem with that is that most social workers won't get involved unless you are not capable of looking after yourself (feeding. toileting & dressing) & so there is no funding for people like me who physically are pretty able. I rang social services about direct funing & they weren't interested in me at all. So although in principle direct funding sounds like a great idea, you can choose who cares for you & when, in reality it has meant Headways funds being considerably reduced. My Headway is still funding the majority of their services but the basic charge for tea/coffee/contribution to running costs has gone up. Its still minimal but compared to the £40-£50 an hour per course attended its a drop in the ocean!! Being reliant on donations means that some people will have to pay towards the cost but wherever possible they do try to keep that as low as possible. I hope you get some assistance from your social worker & you willl be able to attend Headway as they are a valuable support service, just a shame the Government doesn't see it that way?

wow what an amazing man & his wife too

Hi Karen & welcome to BTG. this certainly is a great place for info & support & we all know how you feel. If you need to ask anything just shout & there's usually someone around to help Take care xxx

Lovely GG you have come so far as have we all, the journey to acceptance def takes time & each person has their own way to achieve it. I was given loads of advice last July prior to taking Nathan to the cinema, I planned lunch & shopping too. Pre sah that wouldn't have beena problem but I thought I could still do it, not exactly a rock & roll lifestyle but hey I loved it. I crashed & burned big time & spent many tears of frustration at what I couldn't do & the fact that I had pushed myself too far & I too early. I danced with my past yesterday as I revisited my FB pages for the time my SAH happened & then the 6 weeks leading up to diagnosis & operating, then the weeks afterwards. I posted from HDU but then a day later my posts & replies made abosolutely no sense at all. Looking back I can see how far I have come. I put off joining Headway because my Dad had had a big stroke & was a completley different man(I still feel I lost him then rather than 10 years later when he passed away) I didn't want to spend my time with people that badly damaged (sorry I am different now honest!!) & I thought hwo could that be good for me?. Now Headway is one of the best things to have happened to me & the people there, no matter how badly affected have helped & inspired me no end. I don't want to be that judgemental again, the new me is much more accepting of other people. I would love to be able to do more than one thing in a day before the fatigue sets in, to be able to sing to the radio at the top of my voice while driving, music turned up loud! To work again & feel energised & challenged by my day. But hey I am still here & that is the biggest blessing ever. I think it's good to dance with your past but not to dwell on it,

I am lucky in that my head is relatively pain free although with everything I have good & bad days. When I get a bad head it is usually sinus related or feels like a metal band tight around my fore head. I did have some very unusual pains on my left side the other week & they did scare me because I'd not had them beore, I also found the back of my head & my neck felt tender but that soon passed & I've not had it again. I have some pressure feeling today along the area of my scar which feels like wearing a hat or the crash helmet feel others have mentioned. The foggy feeling seems to have got a bit better since I started taking vits & iron but not sure if its related. I def find if I rest my head isn't bad but if I sleep badly my head is always worse. My Gp prescribed amytriptaline which helps me sleep & seems to have helped with the headaches too (its a muscle relaxant as well as an anti depressant in higer doses).

I experience exactly what you have described but now I can feel it happeniing & know that I have to rest. In the early days I didn't listen to my body & would hit the wall & then need complete quiet & rest & my brain would refuse to do anything more. Now I can feel myself gradually withdrawing from a situation & becoming quieter & my smile becomes more forced & I go to one word answers, then I know I'm getting tired & need to take myself off & regroup somewhere quiet. It sounds perfectly normal to me & in time you will recognise the early warning signs & be able to head off the crash into the wall at the end. xxx

The problem with 'recovery' is that people are used to being able to put a timescale on it but when it comes to brain recovery its completely umeasureable & that is what 'normal' folks don't get. They expect you to be better/recovered after a year at most & to be quite frank so did I in the early days. When the neuro nurse told me I would be recovering for 6 months I poo poo'ed the idea & was convinced I'd be fine after 2 or 3. In fact 6 months is a gross underestimation for most of us & the neuro pysch said in actual fact recovery is more like 1-2 years & can be ongoing from there. As it can't be seen a brain injury is thought to be 'fixed' once the external scars heal & people do lose sympthy after a while.I get so fed up fo saying I'm tired I'm sure everyone else is even more fed up with hearing it!! This is one of the things that scares me if I ever return to work with people who didn't know the old me & won't have the patience bourne out of knowing me before. One day I will have to take the plunge but it still feels too early & I am almost 2 years post op. For those of you back at work I salute you!!

Hi lesley & welcome to BTG. I think your hearing loss is probably due to the area of your bleed & which part of the brain has been affected. You do need to take your recovery slowly & drink lots to help ease those nasty head twinges. Don't be afraid to ask anything on here as everyone is so helpful. BTW guess you live in Dunoon? Lovely part of the world xx

I know SL has one of these but I wondered if anyone else has one to advise of their sah & coiling/clipping? I hadn't thought about it before but as my right eye still has a partial palsy my pupil is still blown & dilated (so it looks like I have a bleed to anyone who doesn't know I'm clipped)so in the event that I am unable to pass this on to a medic should I have a bracelet? I have also been told about this type of bracelet from some fellow US SAH'er s & wondered what you thought? http://medicalhistorybracelet.com/ I am going to speak to the nurse specialist at Wessex about it but would be grateful any views & feedback x

LOL Carl I wouldn't dare!! It has been said to me on several occasions & I really don't think you can seperate your sah from who you are now. I wish I was as articulate as Lynne as she has said perfectly what many of us feel.

Carl I agree you need to find your new place but I don't think putting it behind you is the answer. we had a discussion like this a while back & a very wise lady (Lin Lin) wrote this which I have copied & shared on my FB with her permission. See what you think? I can relate to this thread, but I have undoubtedly improved lots since the early days. More importantly, I am relaxed about it and accept the slight differences in me as part and parcel of who I am now. I may improve further, but I am ok if I do not. I am presently engaged in two voluntary work placements. I work at the Citizens Advice Bureau offering free legal help at a drop in centre. I find this job manageable because it is familiar (and easier) to the job I used to do. However, I sense that some of the managers treat me as a (healthy) qualified lawyer and they can inadvertently explain things as a pitch which is slightly out of reach. (And my goodness they speak quickly!!) I used to feel ashamed of this and just smile and nod my head. I feel more confident to say now that they need to explain things differently. I also work at an office which helps disabled people get back into employment. They have taken me on knowing I have a brain injury and understand brain injuries. They are teaching me reception work. It should be easy for me, but the tasks are new and I do not find it straightforward. I am not embarrassed about this. I am given short and succinct instructions and given time to master them before moving on to something else. They insist I have regular breaks saying my brain needs ‘time off.’ I work alongside many disabled people. Some of my work colleagues are wheelchair users, others are deaf, some are blind, not to mention countless people with hidden disabilities. They have taught me about equality of outcome and how this involves treating people differently sometimes. This is not about treating people better nor is it positive discrimination. It simply acknowledges that if everyone is treated exactly the same, some people get left behind. My brain works a bit differently to before. I can’t retain information as quickly, crowds tire me, my memory is poorer and the pace of my life needs to be slower. But all this is ok. I’m not stupid and my intellectual capacity is the same. Things are just a bit different. I feel empowered when I tell people I have a brain injury. I look upon it as a measure of what I can achieve despite the SAH. There’s no point in me pretending that everything’s going to be exactly the same as before and ‘putting it behind me’ as JayKay’s friend suggested!! (Aren’t people just full of helpful advice!!!) If people treat me as I was before the SAH and if I try to emulate all aspects of my life before the SAH, I am not going to cope and I will feel depressed. ‘Putting it behind me,’ will not help. Harnessing the experience of the SAH in a positive way will help me improve. Facing up to things is healthy. Sweeping things under the carpet is not, and problems do not go away in doing that. I am not going to put the SAH behind me. It is going to be the very thing which drives me forward to achieving a better life than what I had before the SAH. A previous work colleague told me at her retirement party that you ‘can always play a new tune on an old fiddle!’ I intend to follow the advice

'You need to put it behind you & move on' like it doesn't affect every part of my life & how I have to plan my day now!!

WE all get silly off th cuff remarks & it's very frustrating but it is hard to explain how we feel to someone who hasn't been through it too. I have a friend who has a very busy life, 3 kids & she does a lot of work with her church & when I say I'm tired she replies she knows how I feel!! How can she feel the same when she is voluntarily busy whereas my fatigue is like a brick wall which I hit & then I feel both physically & mentally unable to do any more. I tried to explain to her that it the same as babies having info overload & turning their heads away from any stimulus & that seemed to get through a bit more. Spoon theory is good to show persistant offenders, if you google it you will find it(there is also a link on the site somewhere). I am taking a computer course next week & goodness knows if I can or will be able to work properly to complete it, I have explained my problem to the training co & they seem to be ok with it, have also said that a noisy room will lessen the amount I can do & that seemed ok too but lets see what happens. I am lucky in that most people are aware of the seriousness of my condition, after all if my anni had burst I wouldn't be here in the words of my surgeon!!

not sure with coils but they would strenghten the weak spot & prevent blood pressing on the weak spot maybe?

GG the blood gets reabsorbed as it doesn't have a fresh flow. I was told once the clipped my annie they used a syringe to extract the blood from the balloon to collapse it straight away!

It was hit for the Carpenters

You do have to be ready to accept help with Headway,I certainly wasn't initially & put off my assessment about 3 times thinking I was doing fine on my own. It took me a long while to see that I wasn't actually fine & although I was physically recovering mentally I was really a mess! Having done the initial course they told me I was early on in my recovery & that they normally take people from year onwards but my need for them was clear & it has made a huge difference to my life. Good luck Dawn x

Hi Dawn I go to Headway & I'm sure I didn't get a gp referral (I think diffrent strokes do ask for one tho). I did have to fill in a form including my GP#s details & info as to what injury I had. They do ask what kind of help you need & I think I put I felt isolated, less confident & needed to talk to people in the same situation as me on mine. It took a few weeks from sending tha back to them contacting me so perhaps they do contact your GP to verify your condition. I have done several course with them & some social events, the most useful one was Introduction to Brain injury which explained why I felt like I did