DawnS

I remember getting to A&E, the receptionist telling me that I was 'clearly having a panic attack' and to go sit down. I remember slumping on the floor and puting my head on Andy's knee and him stroking my hair. After that, there is nothing for several weeks. I do know that I assumed I was going to die when it started because I knew I was having a brain haemorrhage when I heard the 'pop'. Sah is what killed my mum and I had no idea it could be survived. What I do know is that I lived in fear of death for almost 10 years prior to my sah and then when it happened I knew nothing about it. At all. What a relief! I am so glad to be rid of the fear both of death and of having a brain haemorrhage. It has been a part of my life for so many years and I feel so much lighter now. I am not afraid of it happening again and now I know that I am capable of surviving such a huge thing, there's not much I am afraid of anymore.

Hiya Carl, I get like this too and in fact it is the source of my insomnia. When my brain gets going, it simply will not stop. People always tell me to go to bed and get some rest, but I don't get any rest because my brain never stops. To begin with, I thought perhaps my mind was trying to piece together the weeks that I lost immediately after the sah, but surely that can't still be the case 11 months on. Dawn x

Hiya Donna, I have never seen my consultant since I left hospital, but I had a 6-month MRA and I've been told I will have a 2-year one, then that's it! Dawn x

I watched it this morning. I have to admit, a lot of it I had to mute because it was too noisy for me and I've had a banging headache since. I found it a bit arty-farty, but when it wasn't trying quite so hard it was interesting in places. I always thought I knew I was lucky to have had coiling but now I know I was fortunate. I thought the images at the beginning of a quick blast of traffic and people captured quite well what it's like in to be in a busy place.

Good Morning Mike, sorry to hear you have been having a bad time of it. As I understand it, psychotherapy digs a little deeper to find the root cause of how you are feeling. This can take longer, but ultimately as it gets deeper can be very effective. Some people find it strange to begin with as they will go back to your childhood but bear with it, there's good reason. Everything we learned about life, relationships and ourselves, we learned as children. Back when we were a blank sheet of paper waiting to absorb the world and be taught how to sail through life, we were shown the way by parents, grandparents, school teachers, peers. The way we were taught these things makes a massive difference to who we are and what we believe about ourselves and therefore how we deal with life's situations. These become core beliefs and stay with us. Psychotherapy can help you to discover these core beliefs and where they originated. Only then as a fully aware adult, are you free to decide for yourself what you would like to hang onto and what you woule like to rid yourself of. It can be very challenging, but it's very freeing and rewarding to discover that much of how you think and feel was given to you and as a result can be altered. Good luck with whichever you choose, I wish you well. Dawn x

I only know the answer to this one because I dug out my discharge notes recently to take to France in case I set off all the airport security with the metal in my head, an unfounded fear as it turns out thankfully Anyway, I thought I'd read the notes again with the misguided idea that I might understand a bit more this time. It turns out I had vasospasm during the op as well as a week later. After a lot of googling (always a mistake!) I do indeed understand a bit more. To answer your question (I always ramble on, sorry!) I had an ACOM aneurysm which is an anterior communicating artery aneurysm and it was 9mm x 5mm.

Hiya Michelle, I agree with Win, you always make me feel much better and today is no exception! As a newbie in her first year, it's nice to hear positive stories. I know you have off days too but regardless of this, you always find something postitve and cheerful to say which is an inspiration. Dawn x

My friend has just told me about a programme to be aired next week that might be interesting to watch: BBC4, 22:00 Thursday 12th July - Rupture: Living with a Broken Brain. It's about Maryam d'Abo who was the Bond Girl in The Living Daylights. She suffered a sah in 2007 so this might make interesting viewing.

Hi cfw, you have said that you are both young, what age is your husband? I had my haemorrhage last year when I was 35. My partner was told that my age would work in my favour for both survival and recovery. When was his sah? Over the last 10 months since mine, I have made significant improvements. To begin with, my memory was virtually non-existent. It's still a bit rubbish and can't be relied upon, but it's vastly improved now and I have also learned coping strategies to help. Like a diary is an essential part of my life now. I write everything down from appointments to medication, especially things like paractamol as I forget I've taken them almost instantly. I get physically stronger all the time and I can honestly say that I see improvements on a regular basis. Dawn x

Hiya Win, I don't get visibly twitchy eyes (I don't think it's visible anyway!) but they do jump around a bit when I'm reading or watching TV. I used to use my bookmark to mark the line I was reading but stopped that after a while because I felt like I was about 4 years old It's definitely more pronounced if I'm tired. Dawn x

I've noticed the tv thing too, the music is way too loud to hear the speaking clearly. I've also noticed that every shop in the universe plays music! When did that start?? Sandi, like you noise makes me fatigued. It comes on very quickly and I go from being fine to really not ok at all in a matter of seconds. This is even with earplugs in because I can still hear the music/announcers/traffic etc. This is the main reason I am dreading going back to work, my office is very noisy and I used to wear earplugs before the sah just to be able to get some work done, I can't imagine what it's going to be like now with my new super-hearing. I can't actually listen to music any more because it drives me nuts, even if I have it on low. And as for the radio? Not a chance.

Hiya Mary, mine is not so much hearing loss as hearing gain, but it's definitely different. I can hear a helicopter coming several minutes before it flies over (while I'm inside the flat), the neighbour downstairs snoring and if I happen to be watching the same channel on the tv as they are, I can mute mine and listen to it from theirs. I'm with you on the sound-direction thing though, which makes for hard work when you are a bird watcher I also hear things that no-one else can hear, like very high pitched siren-type of sounds. I don't have bells, but at night when I in bed, I am able to hear a crowd singing and cheering, like hearing someone watching a football match on tv in another room. This makes no sense I am sure, but it's there most nights and it can keep me awake. To begin with, I thought it might be my neighbours tv, but surely football can't be on every night for 10 months? As for hearing something different to what was actually said, I would say this is a daily thing for me. I have entire conversations that have nothing to with what the other person was talking about. I even do it with my GP who gets this patient look on his face and I realise straight away that I'm off on a tangent again. A bit like I am now really! Dawn x

Hi Everyone, I have realised with a bit of a jolt, that I have only 8 weeks left on my sicknote. HR came to see me 8 weeks ago to discuss terminating my contract on terms of 'capability'. They usually write to me within days to confirm what has been discussed but 2 weeks later, I had heard nothing further from them. I got my driving license back and called HR to let them know. She apologised for having not written to me yet and assured me she would remedy that immediately. Last week, having still heard nothing I called her to find she was in a meeting. I left a message and heard nothing back. A friend suggested to me yesterday that I email rather than call so that there is a written record. I have emailed HR this morning and annoyingly, she called back rather than emailed, so I still don't have a written record of what was said. She tells me that I'm to see another OH doctor, but this time a specialist who deals with brain injury and I should know this because she told me on the phone when I called her about my license. Well yes she did, but that was 6 weeks ago and I've heard nothing further. The reason I am posting is that people keep telling me that I mustn't go back before I am ready. Well, how will I know if I'm ready or not if I don't try it? If I go back and find it sets me back, what happens then? I have used up all my sick pay and won't be entitled to more until I have worked for 12 months. Will I be entitled to apply for benefits again or will that have changed because I went back to work? These thoughts are using up all my brain space right now and I can't seem to concentrate on anything else so any thoughts or advice would be most gratefully receiced! Dawn x

Hi Michelle, it's so hard to be on the outside looking in at all the 'fun' everyone else is having. It is worth trying to push the boundaries a little at a time, while keeping within what you already know for sure is a definite no-no? It might sound a bit daft, but wearing earplugs to a gig should leave you feeling the atmosphere and hearing the music whilst not having your head blown off with the noise. Sarah-lou has some good idead there, still do what you used to enjoy but modify it to suit the new you. That way you get the best of both worlds. It's a bit like doing a 3K Race for life but walking round instead of running. You would have still participated and raised some money while completing the course at your own pace - no shame or embarrasment in that! As I'm still on my first year, I haven't actually attempted something big like a gig. I refused an invite to a wedding last month for the very reason that the biggest crowd I've been involved in so far is about 14 people. Perhaps a wedding is for next year when I've had more practise. I thought I wouldn't be able to go to the cinema because of the noise but again, earplugs saved me. Like everyone else has said, would it be worth giving these things a go but with a time-limit in mind? Tell everyone involved who you trust enough to divulge to how you really feel and state that if you decide to leave early, you would prefer it if no-one really took note of you leaving or tried to talk you into staying which you might do out of some kind of misplaced loyalty or guilt. Your real friends will understand. As has already been mentioned, this of course becomes a million times easier whan your license is sorted out, then it can all be on your own terms. I hope you feel better soon! Dawn x

Hi Teechur, well if that is what you were told on leaving hospital then no wonder you are angry at the things you cannot do. Not only have you discovered lots of limitations, but they are unexpected limitations too. I find it very annoying when people say that you should be glad to be alive. Well of course we are glad to be alive but in a way it's not us who survived, it's someone else. Someone slow and tired and physically weak. This is just my view of course. I have never been physically fit - I'm a little fatty, but my old coping mechanism was running (or is that wobbling?). That's how I got a bad day at work out of my system. I'd go to the gym and run as hard as I could for as long as I could and if that failed, I'd go home and drink a bottle of red wine. I can no longer run and I can't touch a drop of wine. On the plus side, I did try riding my bike a few weeks ago. Because my balance is bad I didn't think I'd manage it. People looked at me strangely and said 'you never forget how to ride a bike'. Honestly, get lost with your clichés! But, it turned out to be true, I did manage to balance and the first time I got 6 miles out of it and the second time, ten. I felt so much better afterwards. It's not as effective as running, but I certainly felt more calm. The reason I'm rambling on about this, is I wondered if it's worth you giving the bike another go? I don't know how you are finding things, but what I am capable of changes on a monthly basis pretty much. I went through the angry stage for a few months recently, I seem to have come through the other side reasonably intact, there are a few dents on the freezer though! I have no idea what stage I'm in right now. It seems to be a 'panic cos there's only 8 weeks left on my sicknote' stage. What I'm trying to say is that it does change and progress, but things will improve at their own rate and we can't work to anyone elses agenda. Dawn x

There's quite a lot of chat on here about the startle reflex, it seems it's quite a common thing. My GP told me it's because your system has just had a massive shock. Back in Feb, I got a fright so badly that I fainted. A bit extreme I know, but this seems to have reset everything. I rarely get a fright now and it had become ridiculous before - to the point where I would hang some sheets on the line and then immediately get a massive fright from those same sheets! Not that I'm recommending passing out obviously I have found that everything seems to be amplified. I don't get angry, I get furious. I don't get upset, I get devastated. On the flip side if something strikes me as funny, I'll laugh til I cry. I don't really see an improvement in any of these things yet but I'm hoping it will all level off one day in the same way that the taste distortions suddenly vanished.

It's amazing that getting across to people what we mean by fatigue is so difficult! No, I'm not a wee bit tired or downright lazy thank you, I feel like I've been ran over with a steam roller a few times, or have had a round in an iron maiden. My nana, who many of you are 'familiar' with is always saying things like 'I don't know how you can sit still or lie down all the time. I'm 83 and I could never sit down as much as you do'. Then the very next day, she'll tell me that I do too much and 'no wonder' I'm tired. Even the staff at Headway seem to have no idea what I'm talking about. If I say I'm tired they will say, come and play scrabble - have a rest. To be fair, I don't suppose they see many sah'ers! Thankfully, Andy gets it and I guess that's all I really need. I have never actually discussed it with my GP because this last 10 days or so is the first time the fatigue has taken over and affected my quality of life for months and months.

I have been taking advice from Community Law Services, not from friends. This is a free solicitor service in the local area. I have another meeting with them next week as I have to fill out yet another form to see if my ESA will continue past the initial 13 week period.

Hiya Stephanie, it is so difficult to get others to understand and sometimes it's those who are closest to you that are the worst for it. These days I put it down to positive thinking on their part. I have had to do this, because my negative thoughts towards all these people were really bringing me down. Like you, for the most part I have escaped sah physically unscathed. Sometimes I wish I had a badge or a label I could display. My partner knows that things are different for me now, but then we have always been very close and could talk about anything and I know I am lucky in that respect. I have a few close friends who understand too and these are the people I surround myself with. I don't actively avoid anyone, but I try not to spend too much time in the company of people who insist on telling me that they have alway had a bad memory themselves and other assorted useless platitudes. I am 9 months in and it really does get better. Even the off moods get better, although I have to confess that I know little or nothing about bipolar. Have you spoken to your GP about this? It might be that your meds need adjusting to cope with the changes in your brain, if you are taking meds for it. Other people on here have explained to me that I am going through a grieving process for my old life and the old me. I miss having a logical brain so much and I get very frustrated with that. Going to Headway has really helped me to calm down in that respect, meeting other people who have brain injury was just what I needed to get some perspective. I hope things improve for you very soon, Dawn x

There are 3 things that have helped me really; BTG, my partner Andy and my friend Libby. Like most people on here, we left hospital with no information and had no input or support until I got a placement at Headway a month ago. I really could have used that 8 or 9 months ago, but it's done me a world of good to see how others have been affected by brain injury and to realise that really, I'm not too badly off at all. Everything I know about sah, I have learned from BTG. It was very good to find out that the weird itchy brain and watery feelings were normal along with the neck and shoulder pain and that I still suffer from even now along with the sleep issues. Andy used to do memory tests with me as soon as we realised that I was beginning to have a few moments of memory. I still remember the first time I could remember something from the previous day. BTG taught me to be patient with stupid comments like 'oh, I have a bad memory too, so don't worry about it'. I used to want to say to people, 'really? can you remember whether or not you have eaten today? Or if you have showered or not?' But everybody here really helped me to calm down on that one. As for Libby, she lives in my street and while I had no driving license she took me out once a week, every week. We went shopping, to cafes, to big houses, to museums. She well and truly kept me sane and has been an absolute godsend, everyone should have a Libby of their own.

Hi David, I am not sure that I can add anything that everyone else has not already said. I was wondering though, has your doctor looked into other reasons for the headaches? It might seem that the sah is the obvious root, but could it possibly be something else? A food allergy, a reaction to medication, the aniti-Ds you are already on perhaps? It's just a thought because if you had not had sah, the continuous headache would be investigated and not left for you to manage yourself. I am sending you love and hugs xxxxxx

Hiya Carl, I think my sleep pattern is the worst after-effect that I have! Even the fatigue (which would no doubt be less severe if I could just get some proper sleep) is not a patch on the sleep issue. It's better now that it used to be. I regularly would not get to sleep until after 4 or 5 a.m and then I'd be awake again by 8 or 9. My GP refuses to give me anything to help as he states that my body will reslove the sleep issue itself and that the more interventions put in place, the longer this will take. He sais not to even try anything herbal. Well, I eventually gave up and got some Kalms Night which contain valerian only. I thought I'd better tell doc and he was not happy with me. These days, if I'm having a bad night, it will be 2:30 ish when I nod off, but then I will be awake again by about 8. If I'm doing really well like today, it will be 9 ish. I know my ceiling soooooooo well. I am usually too tired to read, watch tv or use the internet and yet sleep just will not come. I don't nap through the day at all, I cannot get to sleep if I try that either. I've tried setting my alarm and getting up a bit earlier, but all that happens then is I spend the day like a zombie and still don't sleep the following night.

Is this commom? I was speaking to my Mum when I was out of it. It was so real to me and my memory was so badly affected that when Andy and Nana explained to me that my Mum was dead, it was like I'd heard the news for the first ever time and was devasted. Well, for about 3 whole minutes until I forgot what I'd been told again. Very sad, and feel badly for Nana who must have felt awful as Mum was her only child. I keep hoping I'll get another chat with Mum but so far she hasn't appeared again. I'm glad I got the chance to talk to her though as it was very, very real to me at the time. It is in fact, one of the very few memories I have of my time in hospital. Sorry if I'm going off topic a little here

Hello, when looking into applying for benefits, I was told that Andy's wages were too high apparently a couple living together need only £105 per week after rent and council tax to live on. I'd like to know who it is that decided that, clearly they have never paid for water, electric, gas, tv, internet and telephone or food and peterol! As a result, I was told I would not qualify for council tax or housing benefit. The reason I am confused is that I have recently been means tested to see if I was to pay a contribution towards attending Headway. Although I declared Andy's wages, they have only taken my personal income - ESA - into account. Surely, Social Services and the DWP are both government bodies, why do they have such different criteria? Should I perhaps have claimed these benefits anyway, despite being told I would definitely not qualify? Dawn x

This is a great thread. I am at the absolutely furious stage right now! I guess we can rename the stages to suit a little huh? Acceptance just doesn't seem to be near for me at all and my fury usually results in me throwing whatever it is I'm trying to do that my brain simply won't wrap around. This includes a drawer front and screwdriver (yesterday) and for my efforts, I now have a dented freezer as well as feeling like an absolute moron. It's good to know that we all feel similar things and we are not alone in our fury, tears or what ever it is that we are feeling right now. Mary, I like what you are saying about others and their issues. There is a lady at Headway who had a stroke in her sleep and when she woke up, she was paralysed and couldn't speak. How terrifying! It makes me feel bad for getting frustrated the way I do. Things could be much, much worse. I try to remmeber how mum was after her sah. It took her 2 days to die as they didn't feed or hydrate her, she drowned in her own lungs eventually and the brain damage was extensive. That could have been me, so what have I got to moan about?