Leaderboard

A letter from your brain Hello, I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me. As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before. I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost. How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh? Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best. What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me. I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you. I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die. I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that. Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me. Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now. Love, your wounded brain ©1996 Stephanie St. Claire May be reprinted for personal, not for profit use.

I think that many of you have perhaps heard about or you've seen the Stroke Awards publicised on Behind the Gray. https://www.stroke.org.uk/what-we-do/life-after-stroke-awards I would just like to say, that I believe that everybody, who's suffered any type of Stroke/SAH, is completely worthy of an award and over the years, I've seen a lot of courage and humanity on Behind the Gray. There are so many members who've had to go that "extra mile" and who still give support to others and that includes our Moderators, who are a complete joy to work with and I'm blessed! I applaud all of you, for your support and the help that you give, despite your own problems .... You're all very special and valued. I've had the privilege to see many members move forward from the very beginning of Behind the Gray and I've watched them struggle, trying to find answers and at the same time, re-build their lives and find their new "normal"... We also have Carers on this site, supporting their partners and family and that's been an extremely humbling experience too. However, if there was one member to pick this year, for the 2016 Stroke Awards, it was our Win ....I can remember Win's daughter joining Behind the Gray and how very poorly Win was and still in hospital .... I just look at Win now and can only say "Wow!" I know that Win still struggles, but "way to go girl!" Win was nominated by Behind the Gray but unfortunately she didn't win her category ... but to us, that really doesn't matter as Win is a winner and will always be a star in our eyes! Macca wrote the following as a tribute to Win and how we feel about her .... "You are an inspiration to us all. When I first joined this site, forlorn and feeling sorry for myself, you made me realise there is life after these events and that there is always someone worse off than ourselves. Your bright and breezy, lemon squeezy attitude brightened my days then and it still does now. You always have words of encouragement regardless of religion, colour or creed or status. Also, it matters not where anyone is in the world, you are a very giving and selfless lady and you command my utmost respect. Your humour with CarolynUSA is reminiscent of Victoria Wood and Julie Walters or Dawn French and Jennifer Saunders. It injects laughter where otherwise tears would flow and that can only be a good thing. You are always pleased for improvements in other peoples' situations but never moan at your own. That is so special Win and I just thought you ought to know it. Bless you just for being you - you just don't know how much the rest of us appreciate the values and humanity you bring to us all." On behalf of the Team at Behind the Gray, I would like to wish Win, a very happy SAH Anni-versary! .... and to also thank you all, for your kindness, humour and support.... You're all truly, very special people. xx

As a healthy sixteen year old being told that you need life saving brain surgery is a little more than unexpected to say the least. In April of this year I collapsed with friends and was rushed to hospital. After many different scans and an extremely Ill teenager who had never had an issue in the past, let's just say I left doctors puzzled. However, my medical mystery wasn't left without an answer for long. My family and I soon found out that I had a ruptured aneurysm which is otherwise known as a Subarachnoid haemorrhage. Within 48 hours I was having life saving brain surgery as my aneurysm was coiled. I can't remember much about collapsing or the sudden shock of pain, but I can remember and always will remember the excruciating pain that I woke up to which I can only explain as my head exploding and my entire face becoming numb. I have since found out that 3/5 people do not survive a ruptured brain aneurysm which has since been extremely difficult for me to deal with as being faced with death at such a tender age is possibly the most frightening thing I could think of. I was keen to share my story as it is extremely rare for someone of my age to have had a ruptured aneurysm, this has been made very clear to me as I can find nobody close to my age that understands what I have gone through. Thankfully my story has a happy ending and with the wonderful support of my family I was able to make a full recovery. However, I feel that I have done a lot of this alone, through this life changing process I have had no one my age or older to talk to about my experience as empathy seems to be lacking in almost everyone I know. I wanted to write this to support any young person like myself, who feels like they are the only teenager with this condition, as I know that this is exactly how I have felt and still feel.

At the time of the SAH, I was a few weeks short of my 51st birthday. My ritual in those days was to get up, make coffee, and take my cup out to the deck, where I sat in peace and smoked a cigarette, listening to whatever was moving on or in the river. Being the first Saturday of the month, a local group called Friends Of the River San Bernard was having the neighborhood breakfast at a nearby restaurant, which my husband, Al, and I almost always attended. Al was chiding me for dragging along that morning, kind of pushing me to get in the shower and get moving. I was pretty grouchy; I had been working quite a bit for many months due to personnel changes at my job with a State agency, plus we were coming off of Hurricane Ike and I had been involved in damage assessments and then been injured at work just a few weeks before. My response was something like “I rush around every morning to get to work on time and I am not rushing on a Saturday. If you are in a big hurry, go on ahead and I will meet you there.” Thank the good Lord that he did not take me seriously and told me we would go together. I got my shower and was combing out my waist-length hair when he got in for his shower. While combing my hair I began to get a strange sensation in my head; didn’t know why or what it was, but somehow I was prompted to move to the bedroom, just thinking I need to get clothes on. It was like an electrical hot feeling, not really pain at that point, but something that I just knew was not good. Getting dressed became an urgent thing and I just threw things on, then returned to the bathroom. I told my husband, “ I don’t want to alarm you, but I think I really need to go to the hospital….” I still see him standing there with soap in his hair and the curtain pulled back and it all exploded. I think I was able to say “my head”. I know he got out of the shower and I was begging for aspirin, which I meant to chew as the pain in my head was so bad. I know he got them out, but I went down – again, thank God for those angels looking over me – and was violently ill. At one point I could hear him on the phone, describing my condition to someone. I was trying to get up and he kept telling me no, don’t move. I remember nothing from there. My next conscious moment was in the emergency room of the local hospital. I never opened my eyes, but I could hear and answer. A female voice was explaining that I was being life-flighted to Houston as they could not help me there. I remember asking for my husband to go with me and her telling me there was no room in the helicopter. Again I was gone out; I remember nothing of the flight. I awoke briefly in the Houston emergency room, but again didn’t open my eyes. The male voice was telling me they would be doing an angiogram, going through the femoral artery in my thigh and up to my brain. I was lucid enough to say “And I will be asleep for this, right?” because it sure did not sound good to me. Then, nothing. I’m not sure how much time went by before I woke up in ICU. My husband was there and some medical staff. It took me a while to absorb where I was. I remember asking “and what happened to Saturday?” as my husband was talking about Sunday morning. Family and friends came in for quick visits and that quickly became overwhelming. As I came around more, I started asking where the dogs were (3 at the time) and insisting my husband go home (over an hour away) and feed them. We laugh about that now; I could have died, but was so worried about the dogs. Al was so worried about me that he went ahead and drove back home so I wouldn’t be so upset. In time, as pieces of what happened were relayed to me, I know I was so very, very blessed. My husband tells me I went out on the bathroom floor and lay there pale, twitching, breathing very shallow. He thought I was dying. When the ambulance came, he had the choice of two local hospitals for the ambulance to go to. We found out later that the physician on duty at the emergency room of the one he chose had done her residency with one of the best neurology teams in the US at Memorial Hermann Hospital, Houston, TX. She recognized immediately what was going on, ordered a CAT scan and showed my husband the blood that was on my brain. She then ordered the Life-Flight and asked my husband where he wanted to send me. He told her he had no idea, and asked where she would send her family member – which is how I ended up at Memorial Hermann. Upon arrival at Memorial Hermann, a wonderful interventional radiologist , Dr. Suzuki, coiled the ruptured aneurysm. The time after I returned to consciousness is confused; there were teams of doctors, asking me questions about who I was, where I was, what day it was, who was the president. Thankfully, my memory came back strong. Since I was relatively lucid, I got control of the ICU TV, which was near me. I remember lovely nurses. I remember becoming so sad that I cried at one point over a person not far away from me who obviously was not doing well. I remember the headache that wouldn’t quit, the nausea and vomiting if I moved too much, and the sensation that I was in a closet. After a couple days, I got transferred to the neuro ward. My dad and sister traveled from New York at my husband’s request. Between the three of them, they made sure I was never alone and kept a vigilant watch for signs of dreaded vaso spasms. I was in the hospital for 11 days total and had more medications than I could name. During that time, I learned there was a second aneurysm that was unruptured that would have to be corrected with clipping due to the size and configuration of it. I met Dr. Dong Kim, who would be my neurosurgeon. I underwent a spinal tap to pull blood off my brain when the drugs wouldn’t touch the headache . I had a second angiogram that left me with temporary amnesia that surely put my family into a tailspin as I asked repeatedly “No really, why am I here?”. I remember the day I left the hospital, the freeway traffic and city sky scrapers were totally overwhelming; it was all too fast and too close. When I got released, my husband had to go back to work. I stayed briefly at my inlaws’ house, but just wanted to be home. Once there, one of the dogs, Annie, became my couch companion. When the anxiety crept up, Annie snuggled in with me and kept me from feeling too alone. I drank herbal tea instead of smoking cigarettes. I had to turn down a job opportunity that I really wanted because I didn’t know what the future was. Eventually, the headaches became less frequent, less intense as the blood on my brain broke down. In January 2009, I was deemed strong enough for the craniotomy to clip the aneurysms. In February 2009 I resumed my twice daily 1.5 hour commutes and went back to work full time. I know that I have been totally blessed by God with a miraculous second chance and I know that there are Angels among us. I know the neurology team with Mischer Institute, Memorial Hermann Hospital is second to none and I love them dearly and forever. I also know that I am not the same as I was before the aneurysm and never will be again. Since the SAH and surgery, I have been monitored on a roughly annual schedule. The first couple years, I had angiograms to check the status of the clips and the vessels in my brain. When I found out that Dr. Suzuki had left for California just prior to the second re-check, I wanted to leave the hospital; it was very, very difficult to trust a stranger with such a procedure. I was thoroughly miffed when that physician didn’t even bother to introduce himself to me and am glad I have not had an angiogram since then. CAT scans are much less nerve wracking. Like others on this site, I have experienced deep-seated anxiety and fatigue. My memory doesn’t function as it did previously. I can remember ridiculous facts that I learned prior to the SAH, but have to work very hard to remember new information. Many, many times I have felt as though the SAH left me with a bad case of ADD. Some days, every little noise has made me want to go off into orbit while other days I can tune it all out. I finally went to a neurologist who validated all my frustrations. He explained that a part of my brain has died and while the functions it performed have been re-assigned to other portions of the brain, they are not able to perform them with the same efficiency. As said, I realize how very blessed I am to be here, to be able to still walk and chew gum at the same time, but sometimes I miss myself quite intensely. I get so agitated when that simple word I want won’t come to the surface or when the conversation in the office down the hall hijacks my ability to stay on task. On better days I grab the MP3 and ear buds. On the worst days I’ve been angry that God spared me. Medication prescribed by my neurologist has helped as had membership in a local church. So, now it will be six years. I lost my sweet Annie in September. At the beginning of October, I started the job I had to withdraw from six years ago. Once again, November 1st falls on Saturday. I believe I’ll go ahead and go to that neighborhood breakfast.

Just as I was thinking 'this hurts' I started to feel sick as well. Deciding immediate action was required, I did what any right-minded cricket fan would do and headed for the loo. As I made my way to the loo I was aware that the pain in my head was increasing dramatically and by the time I got there I didn't know whether to sit on it, kneel in front of it or lie down. I had never experienced anything like the pressure that seemed to be building. 4 years ago, when he was 49, my younger brother had a severe stroke and almost twelve months to the day my dad had one too. Not that it's a family trait or anything but I knew what was happening to me was not what my brother had experienced as I was with him when he had his. If it wasn’t a stroke, what the hell was happening to me? This made me start to panic. Hot and cold sweats and faintness added to the pain. Thankfully, I recognised the panic attack for what it was and tried my best to not let it get the better of me. I was also in a situation where I was almost on my own. Our downstairs loo is at the back of the house and my wife was asleep in our bedroom, upstairs at the front. Feeling like I would pass out at any time, I still have no idea how I got myself to the top of the stairs and made it to the bedroom door. I woke my wife saying that something was not right and maybe she should call the NHS helpline. I remained conscious (in a heap on the floor) and, as the panic attack subsided, was able to communicate what I was feeling to my wife who was talking to the NHS operator. Within minutes an ambulance crew was at the door and the next thing I remember was being on my way to Blackpool Victoria Hospital (not where you want to be after midnight on a Saturday in the Illuminations). I remember being given something for the pain, having a CT scan and being sick a lot but most of the evening is a whirl. The quality of the scan was not good enough for the A&E doctors to make a firm decision but they suspected an SAH. I was transferred to the Neurosurgery Unit at Royal Preston. Another CT scan showed the bleed at the base of my skull but still the cause could not be specified. So, a scary angiogram followed and a non-aneurysmal SAH was confirmed. When I say the angiogram was scary, although it was a curious sensation occasionally feeling this thing navigating its way around my brain. What was scary was the quick, pre-op chat that one of the team gave me about an hour before I went in where he calmly told me of the risks. My wife was on her way to the hospital but I couldn’t reach her on her phone. I lay for a while and cried when a trainee nurse, who was being shown the ward, asked me if I was OK. I wasn’t and I couldn’t even speak to communicate this. As only my close family knew I was in hospital, I posted on Facebook, said my goodbyes to my friends and hoped for the best. Within seconds I had so many shocked friends wishing me well that I burst into tears again. I was still like this when the porter came to take me for the angiogram. I asked if I could wait a few minutes but was told I had to go now. I have never felt more alone or scared in my life. Thankfully, my wife arrived just after I’d gone into theatre and they let her in to see me for a minute. The procedure went well but I was dropped when being transferred from the trolley to the table (and again after the procedure) right on my Coccyx which now hurts a lot! This only became apparent after I’d come home and was not having morphine any more. That said, that standard of most of the care that I received was really good. I would like to thank the staff at both BVH A&E and Royal Preston for the care they gave. Some of the nursing staff are fantastic in their attention and dedication to duty (sadly, some aren't!). After a week in Preston I returned home to spend a further week or so in bed before the pain had subsided enough for me to try to move around. I was tired and stiff from not moving. I had tinnitus in my left ear and was sensitive to bright lights but was eating regularly, sleeping often and drinking lots of water. As I started to get about a bit I experienced an odd sensation of dizziness and a numb/tingly feeling in my left thigh. If I had been sitting for a while and stood up, I would go about 7 or 8 steps and then a 'wave' of pressure felt as if it came up my back and through my head. It stops me in my tracks. I feel as though I have to get hold of something to steady myself. After a few weeks the pain in my head started to fade, as did the tinnitus and light sensitivity. The coccyx pain is a whole other story. After a couple of months the dizziness also subsided but the odd numbness remained. Four months on and I feel as though I should be back at work. Not quite got ‘cabin fever’ but I think I need the routine. I still get quite tired if I do too much but I can just about cope with that. The most annoying (worrying) thing that has made an unwelcomed return is what I can only describe as dizziness. It doesn't feel like any dizziness I had experienced prior to the SAH and I really struggle to describe exactly how it feels. It’s a bit like a ‘wave’ of pressure that comes up through the back of my neck and through to the top of my head. Some days my head just feels ‘thick’. The consultant at Preston sent me for another MRI to see if anything shows up but I haven't had a follow-up appointment yet. The scan was just before Christmas. I’ve read a few posts on here of other people struggling to describe similar sensations and am curious as to how many other NASAH sufferers have experienced this dizzy sensation and whether it ever goes. I'm not desperate to return to work. They say they're not desperate to have me back! (I hope they mean that in a good way) I count myself lucky that I get full pay whilst off sick (not sure how long that will last). However, in my absence someone else has to teach my students (I'm a University lecturer) and I'm acutely aware of the difficulties associated with that, and the thought of already burdened colleagues having to step in doesn't sit easily. But if this dizziness doesn't ease up I don't think I will be able to do the job that I have loved for the last 17 years. This 'Catch 22' situation of wanting to do more but cautious about doing too much gets to me a bit. Please, someone tell me it gets easier! Time will tell.

I was working out at the health club in a class doing push-ups when it hit. I think I felt a pop and then pain. I left my class and put my sweats on. I walked to my car feeling worse and worse all the time, got in and called my husband. Not sure what was happening, I drove to my parents' house only a few blocks away. By the time I got there, I was feeling the pulsation in my head and the nausea was setting in. My husband had called my parents and they were outside by the time I got there. They took one look at me and called the ambulance. I didn't think I could move. When the ambulance arrived, they said, "You probably just pulled something in your neck when you were working out." I said, no, I think this is something vascular. My head hurts a lot. They took me to the closest hospital. Upon arriving at the hospital, even with these typical SAH symptoms, it took an hour of waiting and shaking like a leaf before I saw a doctor. He immediately ordered a CT scan and they saw the bleed. I was rushed to another hospital. I don't remember most of the first week in the ICU and after 2 angiograms, they never found the source of the bleed. I moved to the neuro floor for another week and then was sent home. That was 6 years ago. My memory has been affected and i have chronic headaches, but I am so happy to be alive and to have minimal lasting effects -- and to have found this group!

The week before Christmas I was at home with my son just waking up laying in bed while running a bath when suddenly I noticed a severe headache in the back of my head. I also noticed I suddenly had diarrhea and sweating. I went upstairs and told my son I was not feeling well and he might have to drive me to the ER at the very least he should check on me in an hour or two. OK I opened my emergency travel pack took, Zofran, Vicodan, Pepcid, Tylenol and curled up in a fetal position for 18 hours. I remember thinking I had a stiff neck thinking should it be worse in flexion or extension for meningitis? and I did think I should go to the ER but they would ask me a lot of questions and it would be noisy with bright lights, I did not want to move from my dark bed, soft covers and fetal position. After 18 hours I felt a bit better and for the next 6 days went about the Holiday stuff, we even had a family of house guests. I did have a pretty bad headache this whole time and lots of trouble sleeping. I did hear a little voice from a neurology professor of mine from medical school saying "a person who has the worst headache of their life deserves a CT scan". Now the funny thing before I became an ophthalmologist I moonlighted in the ER and if a person came in with a stiff neck and severe headache I would have been very concerned, funny what denial can do. So finally went to ER and told had bleed transferred to University hospital and had angio negative and NASAH perimesencephalic hemorrhage though that is with an asterisk because initial scan was a week after bleed. Only kept for two days because so far out. Recovery still that denial thing, went back to work after one week home and it was way too soon. Fatigue, headaches, insomnia were the big issues with me also photophobia and phonophobia. But much better now 6 weeks out mostly things have returned to normal but endurance still lacking also my sense of taste is altered and with it much of my appetite. There was a good review article in World Journal of Neurosurgery about these types of bleeds and although most people do very well I think if people had extensive neuropsychological testing before and after a bleed (if people had a baseline to compare) it would show that usually there are a few deficits somewhere though these might not be clinically relevant. This is the conclusion of the authors. One example for me is scanning behavior, if I was timed in word search puzzles I am sure I am a lot slower than before. Driving in multiple lanes of busy traffic is something I am sure I would find quite fatiguing. The one thing I think I share with many posters here is there is really no way to know what your limit is until you have passed it, so this a source of frustration. Since I have recovered well I view this whole thing as sort of a blessing, I realized I have a very supportive and loving family and realize my 20 year old children are adults but more importantly I got a view into what aging is and while denial can be healthy, really it can be overdone, part of getting older is slowing down. It did force me to take a look at my life and what I want to do before I really have to slow way down for good.

Never thought I would see this day, Never thought it would be this way, Lying in hospital day after day, Not knowing if recover I may, Strong as an ox then weak as a kitten, Down to the ground I’d been smitten, Searching for answers but not much is written, Five years on now since I was bitten. Long days, still longer nights, Never giving up on these daily fights, Pick myself up, but my head is so light, Yet the slightest movement took all of my might, Every small thing proves such a strife, Yet misunderstanding is unbearably rife, Only BTG and my sister and wife, Witnessed my struggle, my lash out for life. Pre SAH, back then I was quicker, Then came the headache and so I got sicker, Thanks heavens above it wasn’t my ticker, Only my brain, my very own clicker, So came the fightback, onto recovery road I stepped, A long winding way, along which I crept, Thankfully now, I’m much more adept, Helping others deal with precept. Thank you my doctors, Thank you my nurses, Thank you to all for ridding my curses, Hope it means something, my try at these verses. Life is for living, And now I am giving, Thanks for belief, And the untold relief, For the return of my soul and dispatch of grief And the chance to turn over another new leaf. Bless you all BTG Macca

Hi, firstly I want to thank each and everyone of you for helping me during the last year albeit through words of encouragement and understanding from people I have never met. Today is my 1 year anniversary and what a roller coaster year it has been! Christmas 2014 and at the time I was supporting my stepson in his new venture of running a pub - life was good! I had a fair that day and had loaded my car and was walking up the stairs and pop! It really didn't sink in that something major had happened to me and proceeded to post on the pubs Facebook page that days 'Twelve Days of Christmas'! Sitting there typing away I randomly googled 'head pain and neck pain' ( my computers history showed that) and remember thinking "my step-son will find me"! Well he did and due to living on the Isle of Wight was air lifted to Southampton Hospital where I had my Subarachnoid Haemorrhage coiled and stayed in hospital till 5th January 2015 - a Christmas my family will never forget, as for me thankfully I don't remember much! This past year I have experienced, like many of you, the ups and downs, mentally, emotionally, physical and learning to listen to my body is a daily event even though sometimes I don't! If I had a £1 for every person that said you look well I would be financially secure! The hardest thing for me is that the independent- never asking for help- person I once was now struggles with this and has got to come to terms with the fact that 'the old Wendy' is no more and on the 14th December 2014 a 'new Wendy' was re-born and those adjustments will take time but I will get there! Sorry to waffle on but I can't think of a better way than to embrace my 1st year anniversary than with people that have been an enormous support without knowing it! Have a good Christmas everyone and thank you. Love Wendy xx

My Rememberer's Broke My Forgettor's getting better But my Rememberer's broke To you that might seem funny But to me, it is no joke For when I'm "here" I am wondering If I should really be "there" And when I try to think it through I haven't really got a clue! Oft times I walk into a room Say "what am I here for?" I wrack my brain, but all in vain A big fat zero is my score At times, I put something away Where it is safe, but Gee, The person it's safest from Is, generally me! When shopping, I may see someone, Say "hi", and have a chat. Then, when that person walks away I ask myself, "who's that?". Yes, my Forgettor's getting better, While my Rememberer's is broke And it's driving me totally crazy And sadly, that isn't a joke.

At around 7am my partner Verdun left the house to walk our little dog as usual I told him I was going to the loo and then would have my shower. I got in bathroom went to sit on the loo and I got this really strange feeling up the back of my head, it made me feel as if I was falling over to my left I could neither sit down or straighten myself back upright and I wondered what on earth was happening. I managed to get a hold of wash basin and got myself stood upright but I still felt as if I was going over to my right. I knew I had to get into our living room because that's where the telephone was I managed to do this by sliding myself around the walls and doors. When I reached the living room that was when THUNDER STRUCK, I have never felt pain like it. I can remember screaming then the next thing I remember is the paramedics bringing me around on the floor, my partner had come back and found me unconscious on the floor, I had vomited all over. I can remember asking had I had a stroke and the paramedic saying I was getting ahead of myself he said I had just fainted. They took me to hospital where they decided id had a migraine, they were going to discharge me but I started to vomit again so a young doctor ordered a brain scan. Thank the lord he did. They discovered I had a massive bleed, it took hours for them to get me transferred to the RVI in Newcastle and that was where I had coiling done the following morning which was 9th June 2014. I can remember the professor who operated on me telling me I was a very lucky lady, as they had found a second aneurysm that hadn't ruptured. So they had coiled them both. I had the best care in that hospital they were fantastic, I spent 11 days in there I was given lots of information to read when I felt up to it, I don't think any information can prepare you for the life changing event that has occurred. My partner has been fantastic. When I first left hospital I was in a wheelchair as my left side was very week, that has slowly got better. He was pushing me everywhere and he has a heart condition luckily we live in a village that is flat. I used to worry about all sorts of trivial little things not anymore I have been given a second chance and I do not intend to spend it worrying about silly things. Yes my life has changed and I do have headaches, dizziness and I have problems with short term memory, but I am still here when I could so easily have not been. I have a brilliant partner who really does look after me and I have a lovely family also. I count myself lucky.

My SAH happened on 10th February 2015 whilst on a skiing holiday in Italy with my husband. It was a perfect day, blue skies, powdery snow and we'd just caught a cable lift to the top of the mountain & stopped for a lovely cappucino. We decided where we were aiming to ski to for lunch (always a very important decision!) and set off again. I hadn't got very far when I had a small fall - didn't hit my head just sort of fell back on my bottom - felt ok at that point but then heaved myself back up to a standing position and suddenly all hell was let loose in my head. I had a weird sensation of being able to feel my pulse roaring from the top of my back, all the way up my neck into my head, a massive headache, feeling of huge pressure inside my head and nausea. Amazingly I did consider trying to ski down to my husband (who was slightly ahead of me & hadn't seen me fall) but with each second I was feeling worse so decided to move to the edge of the slope and sit down, in the hope that I would start to feel better. Vain hope! I've never suffered from headaches and this one was so intense and sudden that I knew I needed to see a doctor. So I 'phoned my husband (thank heavens we always carry our mobiles with us), explained what had happened and he alerted the piste monitors who were with me pretty quickly. If anyone's been skiing you'll know that when you're injured on the slopes they strap you into a rigid stretcher and basically drag the stretcher throught the snow behind their motorised snowmobile - affectionately known as 'the bloodwagon'. The name was strangely appropriate but the experience isn't great if you happen to be suffering from a SAH ! Anyway, although still in lots of pain, I did feel a bit calmer knowing that I was in safe hands and on the way to hospital. After a bumpy journey down the mountain and a short ambulance ride, we arrived at the local hospital where they did a CT scan and quickly diagnosed the a SAH. As they didn't have the facilities there to treat me I was helicoptered off to a regional hospital with a neurosurgical unit. Once there I was seen immediately by the consultant, given an angiogram and told that I had a burst aneurysm that would require clipping. Luckily I was still conscious, not confused (well no more than normal) and had no paralysis, so they were able to operate straight away. I was also told that I had another unruptured aneurysm on the other side of my brain. The consultant said that they were congenital and I have had them all my life, which I found quite a scary thought - I'd be interested to find out if anyone knows how the doctors can tell if an aneurysm is congenital as I haven't been able to find out from my various searches on the internet. The next thing I remember is waking up in the ICU where I was to stay for the next 6 days. I don't speak much Italian but some of the doctors were reasonably fluent in English so we managed to communicate without too much difficulty. The care I received was amazing - the doctors undoubtedly saved my life and the nurses were angels to whom nothing was too much trouble. During those days I had dreadful headaches, neck ache, eye ache - everything ached in fact but luckily I spent most of the time sleeping and much of the achiness had improved greatly by the time I was transferred to the neuro ward. There I realised just how lucky I had been as I was in a 4 bedded ward and my 3 companions were all bed bound, unable to speak or feed themselves. I was confined to bed for 14 days after the bleed - they were very strict about that, I couldn't even swing my legs over & sit on the bed, I had to lay flat. By that time they'd taken my catheter out so I had to very quickly learn the Italian for bed-pan (padella, in case you ever need to know). If someone had told me that the most useful Italian word I'd learn on my holiday would be the word for bed-pan I wouldn't have believed them! Anyway on Day 17 after the bleed I was discharged from hospital and 2 days later I flew home. That was quite a scary experience as there was a lot of debate about whether I was fit to fly and I really had to keep pushing thoughts about 'what if something happens at 35000 feet' to the back of my mind. Thankfully the hospital doctors had insisted on having a paramedic with me for the whole journey and he was a great reassurance on what turned out to be a wholly uneventful flight. So here I am back at home, wondering if this all really happened to me. I have been SO fortunate in that I have no major lasting effects of the SAH apart from the dreaded fatigue/headaches/general muscle weakness. I feel incredibly lucky to have been given a second chance at life and I am able to draw on lots of positives about the experience - the amazing effort of all those people on 10th March who all contributed to saving my life; The support of family and friends; the kindness of strangers and the lovely Italian ladies I made friends with on the wards - although we couldn't speak each others language, we still managed to have a laugh about the pain of having needles inserted and sticking plasters removed (we decided that 'ouch' is a universal word, understandable in any language). I've done a lot of internet searching since I've been back as I had no advice on discharge other than 'take it easy' and it's been great to find the BTG site as I've learnt so much and everyons seems so friendly and welcoming and, most importantly, has first hand knowledge of SAH and its effects. I had an appointment to see the specialist neuro nurse in Cardiff last week who was very helpful and gave me some booklets and I heard from her today that they want me to have another CT scan to check on the untreated aneurysm. The Italian doctors seemed to think it would be suitable for coiling. I'm in a bit of a quandary about that as I really don't fancy another op (although I know it won't be as invasive as the craniotomy), but on the other hand I don't want to have a 'time bomb' ticking away in my head for the rest of my life either. I guess it's a dilemma that many people on here will be familiar with. Anyway I hope you enjoy reading my story as much as I've enjoyed reading all of yours and I look forward to talking with you in the future.

While on the freeway driving home after working out in the morning, enjoying my birthday spa massage gift at noon and looking forward to my birthday dinner (which was planned for that evening), I felt a "pop" in the back of my head near my neck. My vision went crazy and my head felt like it was about to explode. Fortunately, I was able to slowly keep driving, make it the rest of the way home about 7 miles and have my husband get me to the hospital. From there, I don't remember much until I woke up in NICU at the local hospital about 36 hours later hooked up to many machines and surrounded by loved ones who had been told I may not make it, and if I did that I would likely not ever be the same. I spent 11 days in NICU and was given the best care by their wonderful, talented staff. After that, it was home for a year long recovery and 18 months medicine for pain. During that time, I endured CT scans, MRI's and a terrifying pan-cerebral angiogram. I also spent time with a therapist with whom I could talk freely about what happened to me and what I was feeling as a result. Three years later, here I am ... alive, healthy and knowing that I am blessed and highly favored. God is good ... All the time!!! "Trust in the Lord with all thine heart and lean not to thy own understanding. In all thy ways acknowledge him and he will direct thy paths".

It was 0750hrs on 25th April 2014, my husband had just left to take our 13yr old daughter to school, then he was heading out for the day to work. I was left at home with my 7yr old daughter getting her ready for school and myself ready for work. Had finished cleaning the kitchen after cooking scrambelled egg for breakfast. What happened next changed my life forever. It is still a blur and I cant remember much. What I do remember was the pain in my head was excruciating never experiencing anything like it before. I remember sitting in the frontroom and calling my daughter, grabbing hold of her and telling her, she has to call 999 for an ambulance and to call Daddy to come home, she asked me if I felt unwell, then i remember saying yes really ill. I remember holding her tight, saying those few words and that was it. We live in a rural area with hardly no signal only at the window sill in my dining room. Four weeks later coming round in the Neuro ward and being told of my 7 year old daughter saving my life, she managed to call my husband back and when he got back home she was on the phone to the ambulance service who had said to my husband not to worry as the ambulance was on the way and that my daughter had been very brave. she was amazing, she was my guardian angel that day, as without her i wouldnt be here today. When the ambulance arrived they rushed me to Exeter A&E and sedated me before blue lighting me to Plymouth Dereford. During my stay in ICU i had 4 brain operations, my anuerysm was coiled and a VP shunt was fitted. I suffered a massive bleed and only now have recently discovered the severity of my haemorrhage was a stage 10, which still to this day shocks and scares me. I still suffer with headaches, fatigue and have trouble sleeping. I find it difficult in social environments and loud noises as my hearing has become more acute and sensitive. im still not back at work but am contemplating in returning next month as I feel the longer i live it the harder it will become. I feel very lucky and grateful to have another chance, although sometimes I feel 'why me' there was no reason for it to happen in the first place. I dont want to sound selfish because I know i'm very lucky and I was called their miracle in hospital. It does seem unfair sometimes. This is part of my story, I hope I haven't bored you too much. Looking forward to meeting some of you on here. kind regards Sammy

I was cooking a curry when I fell on my bum I shouted out “Oh help me Al! Oh help me Mum!” 5 years have passed since that awful day But never give in say, “I’m here to stay!” If it wasn’t for loved ones I dread to think! Keeping us happy and causing a stink. We are lucky, so lucky to be alive and be so happy Let’s make the most of our lives, and not be crappy Now let’s see a smile for all who have brought us laughter. Thank them now, tomorrow and forever after. Thanks to all on Behind the Gray and my family xx WB

Hello all! My name is Carolyn. I live in Champaign/Urbana Illinois, US. First of all I want to thank all of you for being here and congratulate you all that you have the ability to be here. I have been reading this site for a few weeks and have grown fond of you all. Wish I could hear Win sing! I don't remember any of the following: June 3, 2014 my husband and son woke to the sounds of me screaming and vomiting. My husband realized something important was happening and called for an ambulance. Initially I was taken to a hospital that - after an hour or so of examinations - turned me away to be treated at Carle Hospital in Urbana. Thank God and unbeknown to me this hospital has one of the best neuro men in the country. The ambulance guys were thrilled, I'm sure, to be able to dump me somewhere as I fought them every step of the way. Dr. Wang discovered I had a ruptured aneurysm on the right side and set about to perform the coiling procedure on that. After that emergency procedure it was discovered I had 2 more aneurysms on the right side and these were clipped the following day. After a few days of measuring how much spinal fluid was draining from my brain Dr. Wang implanted a shunt. My family were told I had approximately 30% chance of survival. I was held in ICU/CCU for approximately 4 weeks where I was mostly blissfully unaware of anything. As I began to slowly come around it became apparent that I was going to be difficult to deal with. I wouldn't eat and had to have a feeding tube installed in my stomach. I said very bizarre and sometimes insulting things whenever I was lucid enough to talk. i.e. A very sweet young Mennonite nurse told me she had a chicken that laid green eggs and I told her that sounded like a bunch of horse.... to me! That became a theme for me. I also announced we were all in the Pacific Northwest and that I had an account where anybody could donate funds to plant trees for Israel! I know a lot of you are familiar with the crazy behavior thing. I guess I lost my filter for a while. My memory kicks in here: 4 weeks in I was transferred to the Therapy Unit where I stayed another 3 weeks. My recovery rate was astounding the docs and nurses. In a week or so I could walk without assistance and perform most therapy tasks in record time. A therapist took my husband and I (at my husband's request) back up to the CCU where I walked around unaided and hugged the nurses I don't remember and thanked them all for helping to save my life. It was very touching. Meanwhile I fell in love with most of the nurses in the therapy ward and actually have gone back to visit them. I'll never forget them. Forgot to mention that, while I was still in CCU, my second son was in a serious car accident and came to the same hospital with a head injury. Crazy stuff! He is fine now. Anyhow...I am home now - since 7/17 and am doing relatively well. There are a lot of things that frighten me such as weird feelings in my head, etc. But I read your stories and I feel much better. The things that are the most annoying are the changes in my senses, i.e. taste, scent, sound etc. I hate almost everything I used to like to eat and it is heartbreaking to me. Today I had a great moment in that I made chocolate chip cookies and still loved the cookie dough! Win - this one is for you - I played my favorite Beatles CD the other day- and couldn't stand the racket! I almost wept! I'm losing weight - 24 pounds so far; not sleeping; still taking anti-seizure medication and narcotics for post-stroke headache. But, all in all, we are doing much better. Doctor says I can't work for another year or so so if I can live that long with the boredom and lack of paycheck I guess we'll be good. Thanks for listening and bless you all! Stay healthy and happy. Me...I'll be singing for Win.

Fatigue seems to be something that all SAH survivors experience on Behind the Gray, to a lesser or greater degree. The definition of Fatigue - Fatigue (also called exhaustion,lethargy, languidness, languor, lassitude, and listlessness) is a weariness caused by exertion. It can describe a range of afflictions, varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles. It can be both physical and mental. Physical fatigue is the inability to continue functioning at the level of one's normal abilities. Mental fatigue, on the other hand, rather manifests in somnolence. Somnolence (or "drowsiness") is a state of near-sleep, a strong desire for sleep, or sleeping for unusually long periods (c.f. hypersomnia). It has two distinct meanings, referring both to the usual state preceding falling asleep, and the chronic condition referring to being in that state independent of a circadian rhythm.” (Quoted from Wikipedia.) Many SAH survivors on this website, would agree that the fatigue factor, does slowly improve with time, but many survivors still seem to experience fatigue many months and years after their SAH and still consider it to be problematic in their day to day life. Many would also say, that they haven’t returned to normal levels of activity since their SAH and that when they have increased periods of activity, they then have to make allowances, either by making sure that they have a period of rest before the activity, or that they can allow themselves a period of rest after the activity. The level of fatigue can also depend on other factors, such as whether we are experiencing depression, anxiety etc. The reason for the continuing fatigue that many of us suffer following a SAH is still not entirely clear. The bleed is often around the area of the Pituitary gland and Hypothalamus, hence, posing the question of a possible endocrine dysfunction. Hopefully, more research will be carried out in this area, as it's clear that many SAH survivors would benefit and enjoy a better quality of life post SAH, if the fatigue issue could be helped, even if it couldn't be entirely resolved. (I would also advise any SAH survivor, to visit their GP to rule out other possible causes, if they feel that their fatigue is excessive or worsening.) http://en.wikipedia.org/wiki/Hypothalamus http://en.wikipedia.org/wiki/Pituitary_gland Individual accounts of fatigue from Behind the Gray members can be found below : - Sami – “I used to get the fatigue quite badly in the beginning ... my turning point was my first holiday after my SAH - a year later. It was the first time that I didn't need to sleep during the day and I haven't really since a year on.” Evelyn - “I still suffer with a lot of fatigue, pain and weakness, even after 3 years. My pattern of sleep has undergone changes. At first, I couldn’t sleep at night and I would only get 4-5 hours in the morning and I would take naps. Now, I have times, where I will sleep 10-12 hrs or it can be 6-7 hrs. When I have a long sleep, I can have very vivid dreams. I no longer need to take naps during the day, but sometimes need to sit and vegetate for at least an hour, if say, I’ve gone shopping. I don’t like anybody talking to me during that time, it makes me feel irritable.” Janet – “I used to get it a lot in the first year. I do still get it now and again and had a bad case in August, which was why I cut my hours at work. I think it’s not listening to my body and letting myself get overtired ... stupid I know, but sometimes I just push myself a little too hard.” Keith – “Fatigue is about the only legacy I have from my SAH after 2 and a bit years. It got better up to about a year, but even now, the fatigue still hits me pretty hard sometimes and it takes me much longer to recover from it. My sleep pattern was all over the place following SAH. You couldn't really call it a pattern ... more like random snoozing. The feeling of overwhelming tiredness could come on quite suddenly sometimes. It was probably about 3 months before it got back to anything like normal and I still needed a short nap in the daytime on most days. I've never been one to need much sleep and generally 6 or 7 hours a night is enough and that’s how it was pre SAH as well." Laura – “I agree with Janet about pushing ourselves too hard. I do suffer with fatigue quite often and sleep for most of the weekend. I am working full time though.” Karen – “Well, I still get the fatigue and I'm now 3 years and 4 months on. It's got better and better, but I still have days when it's overwhelming and can't do late nights anymore. I definitely need more sleep, but have noticed that I wake up quite a few times during the night and it's extremely rare for me to go through the night without waking at least once. Vivid dreams are also quite frequent. I no longer need to take a nap during the day. I do have to take the odd “chill out hour”, where I will sit quietly and switch off and like Evelyn, if anybody talks to me during that time, I get pretty irritable!” Elaine – “My Mum Maggie is permanently tired six months on during the day and goes to bed 8.00 p.m. most nights.” Yasmin – “Fatigue the bain of my life... some days I could just lay down where ever I am and sleep, only those who have been through this, can know what I mean. But 2 years post SAH in Jan 09 it’s so much better and sometimes, I can go for a few weeks before it hits me, I have learned to accept it now though it’s just part of the new me, nothing wrong with that.” Jess – “I still suffer fatigue 6yrs on ..... but, not that often now." Caroline – “I am 6 months post SAH, I was fatigued for the first few months after coming out of hospital. Now, I don’t very often sleep during the day, but always sleep well at night from 10 til 6. I haven’t started back at work yet, but expect to be tired then. I have got a bit more energy for doing things now.” Myra – “I am 8 months post SAH. I still get the fatigue and have been told by the Neuro Surgeon it's something that I will have to come to terms with. I get tired doing even the smallest things. I do take naps during the day. The biggest problem is the nausea during the night and I’ve actually been sick. During early recovery, I was having problems sleeping, the hours were so erratic. I was scared going to sleep as I had my rupture about 2.00am and it took a long time not to think about it especially in the exact position that I was sleeping.” Tina – “I am 11 months on since my SAH and I do suffer with the tiredness...sometimes more than at the beginning...maybe because I am trying to do more and my brain is still mending!" Vivien – “I am 18 months on since my SAH and still have problems with tiredness, it just sometimes hits me and all I can do is lie down. However, it is slowly improving and I can recover from just a half hour rest ( not always, sometimes I rest for a whole day to recharge) I also still have problems sleeping but I now sleep for longer than 2 hours at a time and I have had the odd 6 hours in one go!” Julie C – “I'm 9 years post SAH and I still suffer with fatigue, not as badly as in the early days when I needed to sleep most afternoons, but if I get an energy burst I'm sure to suffer for a few days after. AND.... we've been home from our holiday 9 days and I'm still struggling with "jet lag".... Mark was back at work the next day, I took an extra few days off.... but hey ho!” Anne Fleming – “I'm almost a year post SAH (next week). My tiredness has improved over the past couple of months. I'm working full time and I can go out 3 or 4 nights a week, though I don't stay out late. I definitely don't have the stamina I used to have, but hoping it will improve.” Ann – “I am 10 months post SAH and the fatigue got gradually better until the 6th month, then I hit a plateau which I have not moved on from. Prior to SAH I could walk 3 or 4 kilometres followed by a 100 length swim, then go to work in the afternoon and out in the evening. Now I cannot do any of those things on their own in one day. I can now EITHER go for a short swim, about 15 lengths, or a short walk, or half a days work or do the food shop but when I try to do more than one thing in a day, I can't do anything for the next day or two. Even if I do half a days’ work, I can't do it 5 days a week, only 2 or 3 half days. All I want to know from medics is .... is this the new me I have to accept or will it improve?” Michelle C – “My SAH/stroke was 13th Nov 07 and then recoiling done 24th Sept 08. I used to nap during the day which I needed, although shattered, I then had trouble sleeping at night. I don't nap or try not to, during the day now, as I sleep a bit better at night. I seem more fatigued now since the second recoiling. I seem to have an energy burst mid morning, which probably lasts about 1-1 half hours, then I have to sit down most of day.” Sarah – “Fatigue is a major factor for me. I don't need to sleep every day now, but at least a couple of times a week. Sometimes it's so debilitating that I can do nothing but sleep. I think the two lots of surgery exacerbated the fatigue. Surgeon says it will always be there, but may hopefully improve a little. It's the one main thing that I worry about regarding working full time again. At night I am going to bed much earlier, generally, usually around 10pm and get up at about 8am but I will have woken at least once, usually 2 or 3 times, in the night which I never used to do. I also have a lot more vivid dreams than I did before." LesleyM – “I had my SAH two years ago and I still get very mentally fatigued. I think this is because I have to concentrate so hard when doing things. My physical strength is much improved." Louise – “I seemed to level off with the fatigue and then in the 3rd year of my recovery, I seemed to improve again .... Just when I thought that was that! When I first came home from hospital, I was on anti seizure meds, so I would sleep all day if you let me, then when I came off them, I found it harder, now it all depends on what's going on. I have a good couple of days then pow!!! I can lie awake for hours, it's a vicious circle.” Shelscha – “I had my SAH June 2007 and then another brain surgery August 2008, which caused a stroke. Fatigue is still one of the biggest things that I have a problem with. I do not fight it and when I feel I need the sleep, I let my body have it. I still sleep a good 10 to 12 hours a night and it seems that every couple of weeks I have a weekend where I also sleep a lot.” Shiree – “I am just over 8 months on from SAH and did not really suffer too badly with fatigue. I am not as energetic as I was, and am guilty of having an energy drink in the middle of the day (nearly every day) which helps. I never had to have afternoon naps, but I go to bed about 9 - 9.30pm every night and now the nightmares are not as bad, I usually sleep well.” John –“I am nearly 3 years post SAH and have suffered fatigue on and off all the time. It has got considerably worse recently but as you will see from my new post there is a very different reason.” Andy H – “Heather still suffers from fatigue and we are 3.5 years into this. It seems to come in cycles that cover a 2 month period. For 3-4 weeks she will be up and busy with little to no extra sleeping during the day followed by a period of light naps during the day to full blown snore outs on the couch!” Prue – “As the weeks have gone by, I have felt more tired, than I was at the start. Okay, I know it’s early days for me, 7 weeks and I have a longer way to go.... It does frighten me now, to even dare to think about it, especially at the age of 70!” Janet Walker – “I still suffer from fatigue, now 3yrs and 2 months following the SAH. Work full time, I just have to pace myself, but frustrating at times.” Sarah C – “The tiredness factor is still a very big issue for me nearly eight years on. I do really think that in all this time, I have not had one day, where I do not feel tired and like a lot of people that have had a SAH, it is NOT like just feeling normal tiredness, it is overwhelming. I have to quite often go for a sleep in the afternoon; it actually gets me down quite a lot, as before the SAH I was always full of energy and hardly needed any sleep at all.” Perry – “I am certainly a victim of post SAH fatigue, it is early days I know, only seven months since I had the SAH, but fatigue is a major factor! I sleep very well at night (for the first time in my life!) something in the region of ten hours or more and then can sleep for several hours during the day. I too have energy bursts, which last for about one hour or so and then I crash and have to sleep again. I hate it! I was very energetic ,so am finding it very hard to accept! I have just been referred to the Brain Injury Team. Yesterday, my Neuro Physio said that she could and would refer me to their sleep therapist Yay!!” Lesley – “Fatigue was a big problem in the first few months. I had to lie down after completing a few tasks say like having a bath or washing my hair, washing up etc.It gradually improved over the months. The past 2 or 3 months have noticed I've had the odd day were I've not needed my 4:00 pm nap and gone straight through until bedtime (watching TV or reading in the evening though - not running around). But still think the bad heads and fatigue are affected by the weather were I'm concerned. Bad head today and very tired and its low grey cloud overhead.” Cal – “Jim still gets fatigued. He suffered his SAH 12-1-07. 9 days and one year has passed. We did finally get an appointment to see a neurologist. Jim has had an MRI which they said seemed fine but wanted him to also have an MRA so they could use the dye in order to ensure everything seemed fine since he is still very tired all the time.” Zip2me23 – “I am always tired just in varying degrees since my SAH and it has been about 19 months now. I had completely lost the use of my right side so I guess I should be thankful to be up and around. I feel like my brain gets an overload very easy and my legs will feel like lead or I am trying to walk on someone else’s at times which I am having a real hard time with at the moment and it really upsets me. I think it is in the back of my mind when I having this problem that, even though I know it won't, that they will just stop working!" Dee Woods – “I know it's only been about two months since my SAH, but l really do suffer badly from fatigue if I go into town for a couple of hours then that’s it for a couple of days.” Matthew – “I had a non-aneurysmal SAH on March 1st last year, so 21 months ago. I don't get fatigued very much now, but every so often (usually at the end of a week) I simply have to sit down and stop. I need time in which to do absolutely nothing (and, bizarrely, feel guilty about it afterward). That takes about half an hour or so. I also crave peace and quiet! ... difficult with our 22 month old, but achievable.” Terry –“I am six months in and the fatigue is daily. Each time I go to the Doctors I complain that I am sleeping too much. 10 to 12 hours a night and a 2 to 3 hour nap in the afternoon. I think my depression is only making the situation worse.” Paul – “Since my main stroke Dec 2005, fatigue has been a very major factor in my life since, causing big upheavals at work and home. The more you try to fight it, the worse you seem to get. I am currently still under hospital guidance for this problem and i was told today that I should not work full time again whilst having this fatigue. I tried too hard this year and ended up in hospital for 7 weeks, so I have to learn to relax.” Leo – “I too suffer from fatigue. It's been nearly a year now (on New Years Eve) and I still have headaches most days, but the really severe ones aren't as frequent. I sometimes feel like it’s one step forward, two steps back, because good days (where I almost forget about the SAH) are followed by a huge crash - my head feels like it is going to explode and I can barely move with fatigue. On those days my head feels almost as bad as the weeks immediately following the coiling and I get really, really scared.” Tekemeee – “I had a non-aneurysm SAH on July 26, 1993 - I was in the hospital for 23 days in NICU. My major complaint afterwards was being so tired - I had some people tell me that it takes so long just to recuperate from being in the hospital and not being able to move around. It took at least a full year maybe a little longer for me to be able to stay awake all day and not be so tired - I didn't have anyone to talk to back then so I had no idea that this was normal. I wish I would have found this board 5 years ago." Lucie – “I still get tired 3 years on, it's all about learning how best to deal with it, like early nights and looking after yourself. Slowly but surely it gets better!” Vaughan – “I had a SAH coiled in 2005 and a re-bleed in 2007 that was re-coiled. I found the chronic fatigue that meant I had to stop and have a sleep had more or less passed by the time I went back to work six months after the bleeds. But I do still get tired (like most people who work and commute!) and I find the best way of managing my fatigue is to take regular short breaks from work. I am in the fortunate position of being able to take a week off every 12 weeks and do so. If I stay at work more than 15 weeks without a break I get really tired: I feel I am dragging myself out of bed and haven’t much energy. I also find that sleeping in on Saturday mornings helps recharge the batteries."

Life has been very difficult since. I did go back to work- but it was very stressful. The job I loved was taken away after being back to work only 3 weeks. I am sure they felt with a brain injury I could not do that difficult of a task. The position they put me in was something I had never done before and I told them I didn't want to do it. I didn't have a choice. I came home everyday in tears feeling like I was going to have a nervous breakdown. So after 7 months I went out on leave for neck fusion surgery and have been out on disability since then, that was Nov. 2013.

Pat I suffered a subarachnoid brain haemorrhage at the end of November last year, driving home from work on the M4, I blacked out without any warning whatsoever, no headache or feeling unwell or anything. All I remember is getting in the car at 4pm and nothing else until a week and a half later. I lost a whole week and a half. Thankfully my car rolled over to the left a few times and down the embankment only being stopped eventually by a tree having knocked down six fence panels. If I'd have gone to the right I'd have been killed and wiped the motorway out at tea time on a Friday evening. Someone kindly reported it and I was airlifted to frenchay hospital and kept in for three weeks. On arrival it was touch and go for three days as to whether I would survive of not, so I've been lucky on both counts as I've been told one in three that have this don't even make it to hospital let alone whilst driving. I had a coil fitted in my head and also suffered a fractured skull which thankfully has now healed. I wanted to come on this site just to see what other peoples recovery is like. I'm still really tired and get strange pains in my head and most mornings wake up with a headache which sometimes lasts all day. I'm still taking aspirin each morning and paracetamol when needed. I've had a follow up scan and everything seems in order and have been told that my symptoms are normal and I am doing well in my recovery for what I've been through. I thought I would be feeling lots better by now as I'm experiencing the above and I'm still quite forgetful and muddled at times. Does anyone else out there feel this way? Would be nice to get feedback from fellow sufferers. Pat

Hi all, Having read a lot of the posts on this website, I have alternately been cheered and depressed as I've gone through them. In the hopes of adding to the "cheered" column, here is my experience. 19th December, sudden crackling sensation in my neck whilst out at dinner with friends. 5 minutes to see if it went, then 999, then to my local hospital. Their assessment needs a little work, they left me alone in a wheelchair for an hour, bleeding into my brain, although they couldn't have know that. After 5 hours, someone thought to get me a CT scan. I remember them saying they had found some blood in my brain and then - nothing. I woke up 18 hours later in Coventry hospital, having had a burst aneurysm, a sub arachnoid bleed and then a coiling procedure. 20th December - relief. Never mind the crossed eyes, double vision, headache and catheter - I'M ALIVE !! 21st December - Headache gets worse, I have an infection from the catheter and hydrocephalus (water on the brain). 22nd Headache worse, lumbar puncture number one. Pressure should be 10-12, it's 29 23rd, lumbar puncture number two, pressure 26 24th, no lumbar puncture, due to increased risk of infection etc. 25th, Oh god the headache, time for another lumbar puncture. Pressure 40! 26th. Headache easing 27th. Catheter out, and I con the night staff into thinking the day staff gave me permission to walk to the toilet for a number 2. Walk (stagger) over to the loo, with my bum showing (love those gowns). 2 and 1/2 hours of blessed relief. Headache still easing 28th Headache coming back, lumbar puncture 4. Pressure 17 29th Headache going. 30th Headache gone, also opthalmologist comes in and tells me my crossed eyes are the result of pressure on the brain. Cobblers of course, as I have no headache, but the only way to prove that is another lumbar puncture. 31st. I request another lumbar puncture, to prove that the hydrocephalus is gone and the opthalmologist is wrong. "No ones ever requested one before", says the consultant. 31st. Pressure is 13. Whoop whoop. 1 hour and 20 minutes later, I'm transferred to the general neurology ward, where I will stay for between 1 and 2 weeks. 2 days 23 hours later - Discharged ! Folks, the reason I'm sharing this is that I now understand, having had a heart attack 8 years ago, that your own attitude can make a difference. Not always, but the nurses in both cases confirmed my theory. I got out in 3 days by getting dressed, drinking every cup of tea offered, glugging down my 3 litres of water a day, sitting in the chair to eat meals and walking up and down the corridors so the docs and consultants saw me. I have transferred the same positive attitude to the post-hospital period and here's what's happened so far. I live alone so asked my ex-wife and daughter to stay the first night, then just my daughter the second night. Cross-eyed, dizzy, absolutely knackered, with no interest in tv, reading or going outside the front door, I was very shaken by going home. That was 4 weeks ago. After 2 weeks, my eyes straightened out, I started walking outside. Last week, I played 5 holes of golf. Saturday, my consultant said that because I had had coiling and no seizures, I could start driving again. I didn't know how to tell him I had already tried twice, the second time driving my Porsche 911, 10 minutes before I sold it. All the horror stories about people not being able to drive after an SAH are absolutely true. What isn't appreciated is that if you don't drive for 6 months, and your eyesight isn't 100%, and your confidence has taken a hell of a knock, then it's no wonder people are affected. So, without being patronising, get someone to take you to some private land and just drive the car for 1 minute. It WILL make you feel better. Get out of the house for a bit too, it's not helping you as much as you think. We all know about those people who say "the glass is half full, not half empty". I could punch them too, haha. For me, it's simpler: I either spend time saying "Why me? Oh God, I can't do this, this or this anymore" or say "I am one lucky *** to still be here, how can I get fitter, stronger, lighter (17 1/2 stone). I still get completely knackered for hours at a time, I hate loud noises, can't take 2 conversations at once, or one conversation plus the telly, so I think I am the same as all of us. I set myself one job per day, if I can't do it first thing, I rest and do it later. If I can't do it later, I bump it till the next day. I just want to share the joy of little steps (seeing straight) and big steps (driving!) I wish you all a good recovery and if I've helped just one person feel a bit happier or more hopeful, mission accomplished. Kind regards, Nick Metaxas

Intracranial Bleeds Simply speaking, this is any bleed that occurs within the head. A subarachnoid haemorrhage is just one type of intracranial bleed which occurs over the surface of the brain, due to a weakened artery. It causes cerebro-spinal fluid to mix with the blood- hence a lumbar puncture (drawing off some spinal fluid)can often be used to detect a bleed. Although CT and MRI scanning will more likely have been carried out first. There are around 8500 cases in the UK every year, predominantly in the 40-65 year age range, with 3 cases being women for every 2 of men. It is a potentially serious life threatening condition, where statistically around 10-15% die before getting to hospital and 50% within one month of the occurence. The nature of the bleed will likely be different in each case as will other factors, but common in most cases will be headache, nausea, vomiting and neck stiffness. Sometimes there is seizure, loss of consciousness and disorientation. In 75% of cases a ballooning out of an artery forms, this is called an aneurysm where the vessel wall is thinner and bursts under pressure. An aneurysm may have been slowly forming since birth or childhood. An angiogram, which maps out the blood vessels in the brain, will be used to locate such potential weak points and there may be more than one. Pre-disposing risk factors include smoking and high blood pressure. The aim is to stop a bleed recurrence which is usually done by clipping or inserting platinum coils within the aneurysm. In 15% of cases the cause is unknown - whatever weakness was there has gone - the angiogram will have been negative and it is said that no vascular abnormality was found. In 5% of cases there will be what is called an arterio-venous malformation (AVM) where arteries and veins have joined from birth in a haphazard manner. Risks After a SAH there is a short term risk of getting what is called a Vasospasm, where there is a narrowing of some blood vessels in the brain. This gives rise to an increased risk of a stroke, so medication such as nimodipine is likely to be prescribed as a precaution in most cases. With a SAH, the blood surrounding the brain sets up an acute irritation but it will eventually be re-absorbed in a matter of weeks. In some cases the blood can cause problems with the normal drainage of the cerebrospinal fluid (CSF) which can build up and cause hydrocephalus - If this happens, then it will need to be drained off manually. There is also a possibility that some people might have seizures or epilepsy due to abnormal electrical discharges in the brain. General symptoms following a SAH Timescales vary but many will be short term Headaches Tiredness Short term memory Lack of concentration Emotional issues Anxiety/Lack of confidence Anxiety of family members Noise sensitivity Feeling stressed more easily Limb weakness-physio may be required Slurred speech/difficulty getting the right words Some problems with vision Some personality issues NB: As there is a general lack of information about, I have put the above very brief list together from a number of sources. I hope you find it useful. There will no doubt be persons who are members on this site who can offer their personal opinions on specific issues which we hope will be of help. Please note I am not a medical professional, the above is a generalised guide only and you should always seek advice from your health professional/Specialist.

Going Home - The Early Weeks Headaches Headaches are very common following a subarachnoid haemorrhage. They are not usually so severe as the headache experienced during the event itself, but they can persist for some months as the blood around the brain is re-absorbed. Taking pain killers as recommended by your doctor can help. The headaches will ease in time and may disappear altogether, but you may be more prone to headaches than you were previously. You may feel strange sensations in your head and this is common, especially during the early weeks of your recovery. If you are at all concerned about headaches or sensations you should consult your doctor. Keith (46) from Hampshire, SAH August 2006 says: The constant severe headaches got me down at first and I ended up back in hospital after a particularly bad episode. The headaches started to ease in severity after a few weeks and I remember the first day that I went without pain killers as a milestone in my recovery. It took about 6 months before I was virtually free of headaches and one year on, I don't really get them any more. Sarah from Wiltshire, SAH October 2004 says: I had bad headaches prior to SAH and in some senses I have fewer now - because if I feel a headache coming on I am more likely to stop and rest up. I know that battling on will only make it worse in the long run, and after 3 years I am not so scared the whole time I have a headache, and I know I'm likely to get a headache if I over do it. During the early weeks at home, you will feel very tired. Even simple things like having a bath can leave you completely drained. Having a rest or sleep period each day can help, but you should try not to do too much too soon. Gradually build up your activity as you feel able and the fatigue will ease with time, but you may find that you never completely regain your previous level of activity. Vic from Frimley, SAH January 2006 says: It was much worse in the beginning but still get tired very easily and can sleep for England. I think this also has a lot to do with my medication for blood pressure as they keep me quite low. I also get tired limbs very quickly if I exert myself, like trying to run upstairs. Keith (46) from Hampshire, SAH August 2006 says: When I first came home, I was constantly tired and slept a lot. Even simple things like getting dressed or talking to friends and family would leave me completely drained of energy. I needed a sleep during the day for several months and returning to work was particularly difficult as the fatigue increased and I needed longer rest periods. Emotional Most people feel more emotional, especially in the early weeks. Mood swings and crying for no apparent reason are common. As with most other effects of subarachnoid haemorrhage, this generally improves with time. Karen (45) from Dorset, SAH July 2005 says: I had days where I would feel so low with trying to cope with the aftermath of the SAH that I would just escape to my bedroom and cry. I would become inconsolable and cry tears of frustration. I felt so frightened, so alone and felt as though nobody could help me. I always tried not to let my children see this, as I didn’t want them to worry. I cried buckets of tears over the thought that my children could have lost their Mum and I feared for the future. I felt like a different person and wondered whether life could ever be the same again. Anxiety & Depression Once you return home from hospital it is natural to feel anxious and worry that it may happen again, although this is very unlikely. You may feel low or isolated at times, especially in the early weeks, but it generally improves with time. If you feel very low, it may be worth talking to your GP. Attending a support group and talking to others in similar situations can help, but if you feel uncomfortable talking to strangers face to face, an online support group like the one here at behindthegray.net can also help. Sami (36) from Nottinghamshire, SAH August 2006 says: I was very anxious in the first few weeks about being left alone and that I was going to suffer another SAH. I became so depressed that I was referred to a councillor. He helped me to realise that this wasn't my fault and that I had nothing to feel guilty about. Memory & Concentration Short term memory is often affected following a subarachnoid haemorrhage and memories of the event and the time spent in hospital is often very vague. You may also have difficulty concentrating and find that you can only concentrate on tasks for a short period. You may need to write things down and keep a diary as an aid to your memory. When you visit your doctor or hospital, write down a list of questions before you go and write down the answers so you can remember them later. As with other aspects of subarachnoid haemorrhage, your memory will improve with time, but your short term memory may never be what it once was. Karen (45) from Dorset, SAH July 2005 says: My short term memory had become very bad. I would walk from one room to another, forgetting the reason why I went in the first place. I had to start to make lists to help me remember. My brain seemed to be on "meltdown" and was reluctant to absorb any information. I would also forget a conversation very easily. Sarah from Wiltshire, SAH October 2004 says: I have to write work things down now and I might have to go back to some one and clarify details of our conversation. Unless I've overdone it, or have a headache, or am fatigued, I am OK to concentrate and remember most of the time although things do fall off the edge when I am busy. Learning new things is harder, but I am less embarrassed at the thought of appearing stupid so I cope with that! Communication and Speech Speech is often affected by subarachnoid haemorrhage. Hesitation and difficulty finding the right words are common and usually improve with time. It may be necessary to see a speech therapist if problems persist. Keith (46) from Hampshire, SAH August 2006 says: My speech was very hesitant at first. I would often stop mid-sentence, unable to think of the next word. It was worse when I was stressed or tired and speaking on the telephone was particularly difficult. It was very frustrating as I knew I was doing it, but it gradually got better and my speech was back to normal within a few weeks. Noise and Visual Stimuli You will probably be more sensitive to noise and visual things such as bright or flashing lights during the early weeks of your recovery. Being in crowded, noisy or busy places such as supermarkets can be particularly difficult at first. Karen (45) from Dorset, SAH July 2005 says: My first visit to a Supermarket was traumatic and I didn't cope at all well. My eyesight was awful, my legs weak and my brain went into overload with the bright lights, piped music, door alarms going off, children crying and people walking at me. It was all too much and I had to leave and sit in the car whilst my Husband finished the shopping. I cried my eyes out in desperation and wondered what the hell was happening to me.

I haven't been around here for a very, very long time. Life with children (13 years and 4years old as of today), family and all the rest is a busy thing. I just got a pm from someone 9 months post-SAH, looking for info about my experience. I responded, then I remembered how incredibly helpful and useful BTG was for me in my first weeks post-SAH. The doctors told me I was fine. I knew I wasn't "fine". But it took me a while to realized that what they meant was there was nothing they could do for me. Thank goodness I finally found BTG and all the helpful folks here. So, I figure by posting this I might be one of the helpful folks for someone else coming along post-SAH, confused and looking for answers, direction, clarity, or at least a little flashlight in the darkness. So, here's my story: I'm now 2 years and 3 months post-SAH. The best way I can describe it is in computer terms, which makes sense if you think of the brain as a Central Processing Unit (which it is, just a biological one as well as an electronic one). Looking back my experience was something like this... My brain crashed and needed to restart. Many programs remained "off-line" for several months. Through reading Jill Bolte Taylor's book (have you read it? you should) "My Stroke of Insight" I suspect my bleed was in the right hemisphere of my brain (since there was no aneurysm the doctors couldn't tell me where I bled, only that I had bled as by the time they got a look my basal cisterns were flooded). I think this because my linear reasoning was never affected nor diminished (however my ability to make connections was severely disabled). My speech, pronunciation, vocabulary, motor skills were all normal (though I was incredibly tired). The doctors told me I was fine and should slowly get back to my normal life. Maybe take a couple of weeks off. Months later I was telling the doctors I wasn't fine. There were things missing. I am an artist and dancer and when I went into my studio it was like I entered into a fog of pea soup. It was thick, confusing and exhausting. In retrospect, part of that may have been due to non-essential services being off line while the organism of my brain healed itself. Over the course of the first 6 months I had several waves of "programs" coming back "on-line" and being available to me again. For Christmas I got the ability to dance and to be social back again. It was such a beautiful present. That was the last significant "wave" of restore. A few things trickled back after that, but nothing as noticeable as the previous waves (a wave was like all of a sudden I could "think" my way through things I hadn't been able to make any sense of the day before). In the first few months, before my artist's brain came back on-line, I was searching for some sort of stroke rehab to help with my right hemisphere recovery. However, most/all stroke recovery programs are based on restoring left-brain function - language, linear reasoning, physical acuity. Our society doesn't value the more artistic pursuits - making connections, spirituality, creativity, and so much more that is of deep value to me, as an artist and a human being. That was a difficult time for me as much of what I value about myself was taken from me. I was sad, but I also believe in brain plasticity so I just had to keep reminding myself of that and give myself pep talks several (or more) times a day when I got frustrated about not being able to do something I "should" or used to do, or wanted to do. After the initial 6 months of recovery waves, there was another 6 months of very inconsistent energy. I would get tired suddenly and there was no rhythm to map out or predict what would exhaust me. Just all of a sudden I was exhausted. At the time I had a 2-3 year old. This was extremely challenging for me and my family. I just kept checking out on them. I spent a lot of time lying alone in the dark, or in my studio lining up my pencils and/or paints in order by colour (I felt it was important to log studio time, even if I wasn't producing anything...I just needed to spend time there), or whatever quiet and restful time I could spend. I was working 2 days a week by that point and I was able to manage that, though it was a deep energy sucker. By the time I was at 9 months, my cycle became work on Monday, take Tuesday off from everything, work on Wednesday, take Thursday off from everything, kids home on Friday - be the Mom till hubby home from work, go to bed exhausted after dinner, Saturday and Sunday Mom when I could, retreat when I couldn't. That was my life schedule...but my energy usually didn't conform to that. Shortly after the 1 year mark my energy got consistent. It was such a gift. One never knows if that is going to happen or not. We really don't know what cards are going ot be dealt to us. I got lucky. I know it in my bones and deep in my brain and I am grateful for that every single day that I wake up. While my energy got consistent, it didn't return to what it was pre-SAH until the 2nd year. There are a few intangible things that came back during that 2nd year, but I would be hard pressed to say what exactly. It's just a feeling of "being a little more here". I used to do 7 things at once. It was truly insane, but I could manage. My top speed now is doing 3 things at once, but that leads to an emotional meltdown pretty quickly. I think my sense of self preservation is much stronger now than it was pre-SAH. I feel less guilty about saying no to others. I still have a difficult time saying no to things I want to do. I still struggle with accepting my own limitations and not overdoing things. I am (once again) a passionate engaged artist. I love life. I know life is short and I want to express/experience everything I can in the short time I get. However, I do want that time to be sustainable, so I often must say no to things I'd really like to do. I don't have the energy I used to have. I have wiser energy. (I'm 44 now, was 42 when I had my SAH). Having said that, I still have more energy than a lot of people I know...I'm a high energy person, however I don't have the ability to "run" as much energy as I used to. Long term effects - I would say that the SAH aged my brain. I seem to be at a similar capacity to my friends who are 15 years older than I. I have to write everything down (and later look at my notes) to remember anything. I forget conversations. Most of the time I remember them when someone twigs me, but some conversations I honestly have no recollection of. This is a bit disturbing, but then I think of my older friends, shrug my emotional shoulders and remember that memory loss due to age beats the alternative (being dead). And, then I do something to exercise my brain and keep the muscle working in new ways. Maybe my memory will improve with age! Maybe not, it's irrelevant and doesn't much affect my quality of life...unless I let it, which I don't. That took some time for those around me to get used to. My family especially. Now if my 13 year old is frustrated with me forgetting something I turn to her and say, "I'm sorry, have we met? I'm the mom who is awesome and has recovered from a brain hemorrhage. Have I mentioned that I have no memory?" She doesn't like it much, but I guess in a way it's a lesson for her in learning how to be take care of what she needs to take care of. My 4 year old doesn't have the same expectations of me. She doesn't remember me pre-SAH. Hubby, got with the new program a while back. I still deal with sudden rushes of temper if I am pushed too far and feel the need to protect myself. However, I am the Mama who has a 13 year old and a 4 year old at home, so I am often pushed too far...seems pretty common (SAH or no SAH). I do my best to verbally warn when folks are pushing too hard, but sometimes it takes a meltdown to get their attention. I don't feel guilty about these anymore. I leave, and apologize when I return. And remind them that my brain is very sensitive. What I remember were the most helpful things that first 2 years were - Behind the Gray (life saver especially when the doctors were telling me I was fine, but obviously just having emotional problems so I got referred to a psychiatrist. That was the single most frustrating thing I can point back at); I was so relieved to have found BTG, it was a life saver in so many ways - DRINK 3 LITRES OF WATER EVERY DAY! I learned that here and it made all the difference with the headaches (I took acetaminophen daily for the first 3 months, then didn't need it anymore as long as I was drinking enough water) that tip came from here at BTG - Be selfish. Do what I need to do for self preservation, including a whole lot of walking away - Being patient. Being kind to myself. Stopping when I found myself getting into any kind of negative self talk. That negative self talk was one indicator that I was pushing myself too far. Which reminds me of the nausea. That was my early warning indicator. I dealt with waves of nausea for over a year and a half (tho they decreased in frequency as my energy increased). When I felt like puking I knew that I had just crossed the line and had pushed too far. I learned that slowing down was not enough in that situation. If it got to nausea then I had to STOP. drink water. go lie down. rest. try again another day. I have changed though this experience. I hope for the better. I believe that I am more compassionate. I don't take things for granted. I know in my bones how temporary this life thing is and how quickly it can all end. I am lucky that hasn't happened to me yet. I want to honour my own new pace as I live the rest of my life....however long that is to be. I hope this helps. Please feel free to write back if you have any specific questions, want to share your story or just want to connect with someone who's gone down her own version of this path, before you. And, don't feel obliged to return any long letter to me. You must be selfish in how you spend your valuable and rare energy. I wish you the best in your recovery. Please remember that whatever abilities you may or may not get back, you have your life. It is changed. There is no going back, there is only going forward...into mystery and hopefully into health. You will not determine what that will look like. There is a certain amount of surrender and fear involved with that. That part is out of your control. All you can control is how you meet these challenges. Be kind to yourself. This is a big thing. All the best, Riane

Hello All! My story began 2 months ago, when I woke one morning feeling very dizzy. I interupted my busy schedule to visit the doctor and was given medication for vertigo. A few days later (still feeling dizzy) I helped my sister move my 93 year old mother into an Assisted Living Facility nearby. Yes, I was literally moving heavy furniture! I was extremely stressed over this move for my mother and agonized over whether this was best for her since she had experienced 3 years of depression due to the isolation of living alone (it was!). Two days later, when I awoke, the dizziness and nausea was so intense that I couldn't even get out of bed. My family had gone out for the day to move my daughter into college (another stressful event for me!). As I sat in bed alone, I thought that surely I could cure myself of the vertigo. I found some helpful videos online that gave exercises that could "cure" a person of vertigo. As I rolled around on the floor, the nausea overpowered me. It was all I could do to crawl into the bathroom. When my husband came home, he insisted on taking me to the hospital. Thank goodness he did! After a CT scan, I was sent to see a neurosurgeon, who told me that I had a "small" brain bleed. When I asked if it was still bleeding, he said, "Oh no! If it were, we wouldn't be having this conversation!". Scary, indeed! I had an MRI and angiogram. He said that it was like a bruise on my brain and I would continue to have dizziness until the blood reabsorbed into my body. The nurse said that she would bring me a stroke folder with information. My naive reaction was, "Why on earth do I need that? I had a brain bleed, not a stroke." She had the pleasant task of explaining that what I had experienced was, indeed, a stroke. I confess that I'm still having a hard time with that one! I thought that it was a simple matter of taking it easy for a week or two. Here I am, 2 months later, still experiencing constant dizziness (although much less than before!) and now I have stroke fatigue. Most days I hit a wall doing a fraction of the activities I had done before. The good news is that a recent CT scan shows that most of the blood has been reabsorbed. Here are my questions: 1. For goodness sake, how long does this recovery take? As many of you have mentioned, I appear "normal" to people who don't know me. For those who do (including myself), I don't have any energy. I've been told that the light is gone from my eyes and I appear and feel very unenergetic. I want to return to my busy life, but my body says no! 2. Should I quit my part-time job? I have a wonderful job where I work for a non-profit 3 days a week. I took off the entire month of February and am working only 1 day a week this month. Yesterday I worked an 8 hour day and was totally exhausted! My family fears that I am pushing myself too hard. Fortunately, I don't have to work, but I love what I do. I don't love laying in bed- but that seems to be what my body wants me to do. Am I risking another stroke if I work to exhaustion? 3. What is up with this stroke exhaustion? Every day I feel like I hit a wall. I tell people that I used to do that, that, that , that and that. Now I just do that. If I do anything else, I hit the wall and have to climb into bed for a while to rest. I think that a major part of what defines me is that I live life to the fullest, and enjoy being active. Now I can't. 4. My main question is, what caused this? The strange thing is, I had no headaches, hits on the head, etc. The one odd thing is that I had the "worst headache of my life" six months prior. I went to the hospital, had a CT scan and it showed nothing. I can't help but wonder if the two events were related. Thanks for taking the time to read this. I have so much to be grateful for, and yet I can't help but wish I could have my energy back!

I had just finished what I felt was the best workout, for being in my 50's anyway. I have a home gym and got a bit carried away. I did about an hour of cardio (eliptical 30 minutes and recumbent bike 30 minutes) because I got hooked on a good movie that was playing on my 37" flat screen. Then I did my hour of weights on my Bowflex, and sets of reps in between on my AbCycle. Feeling quite refreshed, I drank a big glass of water and headed to CVS to buy, of all things, toilet paper. Just after checking out and heading to the car, I felt this sharp pain in the back of my head. I'm not one to get migraines or even headaches, so I knew right away something was wrong. I kept trying to tell myself I must have turned my head the wrong way while bending down or something like that. Having worked out since I was 16, you just have these aches and pains after. I put my tp in the trunk and got in the car as it worsened. I was 3 miles from home. I prayed, "God, please help me make it home." The road home is hillly and winding. I made it home and thought if I just sat on my bed a minute and took deep breaths, this would pass. I finally gave in and went to my neighbor next door and asked her to drive me to the hospital. Luckily, it is only 3 miles away. I went straight to ER and you know how it's hard to convince them that you are really an emergency when you're conscious and not bleeding? They seemed to know and got me right back to CT scan which showed blood in my brain. The rest is kind of a blur. My daughter showed up, having just come from the airport after celebrating an early Thanksgiving with my parents in Minnesota. She had to celebrate early due to having to defend her thesis that week, as well as take her license exam for her. She slept in the hospital every night in my room with me. She has not yet forgiven me for what happened, blaming it on the fact that I drink. Six days after I was in the hospital, I had some kind of "episode" where I got out of bed, ripped out my PIC line and said I was going home. They put it in my chart as "acute alcohol withdrawal delirium." When I spoke to my family physician later, who has known me for 20 years, she said that was impossible as any withdrawal would have occurred within 24 hours of having no alcohol/consumption of whatever the drug was to be going through any withdrawal of that type. I had the entry removed from my chart (after much effort) because I did not want it to appear that I was an alcoholic, because I am not. After all, how can someone who follows a healthy diet, works out 3-5 times per week (1-1 1/2 hours) and drinks 3 times per week be considered an alcoholic?? The nurses told me they quickly put that tag on anyone who admits to drinking anything. The meds they have me on now make me feel drunk all of the time. They are Neurontin (600 mg 4 times per day), Losartin for blood pressure, Atarax and Cymbalta (60 mg). None of it takes away my head pain completely. When I read stories of people going back to work, I am amazed. I also have pain in my left leg, right at the site where they ran the catheter to my brain for the angiogram. I had two of them. One on the day I was admitted and one on the day I was discharged. I found out that femoral nerve neropathy was a rare but known complication of the angiogram procedure but no lawyers will take it as a medical malpractice case. When I went back for my follow-up with my neurosurgeon, all he was concerned about was scheduling me for yet a third angiogram, because of the large amount of blood that was in my brain, and I said no due to the pain in my leg and the fear that they would do further damage to my vein if they ran the catheter another time. I had heard that some people end up with paralysis in their leg from this. Plus, I had had numerous MRIs and CT scans, with and without contrast, after leaving the hospital and felt that if there was still a problem, it would have been found through these procedures. I was in Intensive Care for 12 days and on the regular floor for 2 days. I went 12 days without a shower. It was horrible ! I could not understand why I was in the hospital so long. They said because the drugs they were administering could not be given at home. I had a PIC line with 8 bags hanging from it. They could not get my salt level to where it should be. It is called cerebral salt wasting. When I went home, I was taking 6 grams of salt a day.

Life seems different now.

The frontal lobes are considered our emotional control centre and home to our personality. There is no other part of the brain where lesions can cause such a wide variety of symptoms. The frontal lobes are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control and social and sexual behaviour. Personality changes can be apathy, decreased motivation, emotional lability, irritability, anxiety and depression, disinhibition, increased temper flare-ups, aggression, cursing/swearing, lowered frustration tolerance and inappropriate sexual behaviour. Some people after a brain injury become sexually disinhibited; always talking about sex, trying to touch other people in a sexual manner, or wanting to have sex all of the time. Sexual disinhibition occurs because of the damage to the part of the brain that helps control our behaviour. This usually improves with further recovery, therapy or some may need medication. Apathy A general apathy or disinterest in life and a lack of self-esteem and self-confidence. Emotional Liability An individual may find themselves laughing uncontrollably at something that is only moderately funny, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent; an individual might laugh uncontrollably when angry or frustrated, for example.

July 9th, 2014. A-day. The day after our anniversary. I was 49 years old, thin to average build, and a smoker, had been for about 35 years. I had been having some pretty beastly headaches for the last three weeks. That morning was like every other, I woke up with a head ache. And like every other morning, I showered and got ready for the day. I went to see my chiropractor, now most times this offers relief but not for the last two weeks..I should have listened to my body. I also think as a medical professional he dropped the ball too. After my appointment I went shopping with my youngest daughter (Adeline 20). My head hurt more and more. Addy suggested that I eat and have some water, so I did. No relief so we came home. By the time we got home I had started vomiting. Addy went to change her clothes and in the few minutes she was gone, I found the floor. She came back and asked if I had fallen, I said no, but I felt like I was having an aneurysm. Addy helped me up and took me to the couch along with a bucket since I was still barfy. I complained about being hot, so she went to my room and got me looser clothes. Addy then called my husband to tell him there was something wrong...he was five minutes from home. He came in to talk to me and I made no sense so he had Addy call 911. We are right down the hill from the fire hall so it was only a five or ten minute wait. The EMTs were sure I was drunk. When my girl lost it on them and told them I had not had a single drink or any drugs. They then decided I was dehydrated, again Addy said that was not the case. So they stood me up and made me walk out to the ambulance (which I can't believe!). My husband and daughter were to follow in our car. Not three minutes in the ride the ambulance pulled over and the driver got out and into the back. My family was having a fit now. I think I had a seizure, because my clothes were cut off me. I arrived at the first hospital where they put me in a trauma unit and put me in a coma. My husband and all three of my daughters(Melissa, 28 and Cynthia, 24) and my in-laws were there by now. the doctors spoke to Addy about our day, and by process of elimination decided to transport me to a second hospital with a leading team of neurologists. When I arrived, they sent my family to the family room to wait. I think at one point there were over 20 of my family in the family room. They sent in a grief councilor to speak with my family before they spoke to a doctor, it scared the daylights out of them all. They were told that the chances of my pulling through were two - three percent. My bleed was huge and they would do their best. I had one surgery that day, and a second one the next morning. I, being the world's best patient was extremely violent. I had fourteen IV's and things poked into me, arms and legs were a mess of hoses. I also had two large holes in my head, one of which was the EVD. I ripped all the hoses out of my head, arms, legs and chest. Then I ripped off my hospital gown and started to head-butt the nurses..screaming the entire time. Can you picture it? I told my husband he was horrid and I was going to divorce him when I got out of there, I said the meanest things to my kids...breaks my heart. So they sedated me and restrained me. I don't remember doing any of this. I was ten second Tom from 50 first dates. I would ask why I was there and before they were done explaining to me, I asked why they would do this to me, what have I done...and on and on it went for about three days. There tried to move me from ICU to the neurology ward, but I took a turn for the worse and went right back down to ICU where I stayed for sixteen days. In those sixteen days, all I wanted was to go home and to see my dog. I got to go home with restrictions. No driving, no alcohol, no getting my heart rate up for three months. Addy quit her job, and missed a semester of university to stay home with me. I turned 50 sixteen days before my three month check up...no wine on that day. I had cut my beautiful long auburn hair short and dyed it platinum blonde in honor of turning 50. The OR nurse didn't recognize me. She told me that I was the neurology wards miracle because no one in the ward thought I would make it. But I was cleared, I was now able to drive, fly and do things again. I am approaching my first anniversary and I have to say I'm okay. I still have a lot of headaches, can't do yoga and have some deficits that I am trying to work around or with. I am a non smoker now, and will never put a smoke to lips ever again. My husband quit the day I came home, and my middle daughter quit too. I can't believe my grandkids had a grandma that stunk like that!! I am angry, confused, guilty, a little sad and I am blessed. But I am here. Recovery takes a long time, and I don't like to sit still. I am trying to accept the new me. I am trying to get my drive back. I am going to do this, and I'm going to make it a trip to remember. Next time I'm going to listen to my body better!

Hi all - I'm new to this site & hope I am following the rules on posting...I'm looking for some reassurance that my hopes for a positive outcome is not naive. My Dad (71 yrs old) suffered his SAH 07/22/14...this changed both his & my mom's life in the blink of an eye....he was, fortunately, only 1 mile from the hospital. The neurosurgeon was able to coil the ruptured aneurysm and remove the blood clot....we were told his bleed was extremely severe and it would be wait & see throughout the night...Dad was in the hospital for 3 weeks before being released to a sub-acute skilled nursing facility for rehab...I should mention one week prior to his release he had a ventriculoperitoneal shunt operation. He was making progress slowly...he could speak and was able to read. He was quite confused and babbled off an on...but, we were happy he recognized us all and could communicate somewhat...still after 3 weeks, they were not able to get him to stand up but, continued to work with him...suddenly he seemed to just go backwards....he would not talk, was sleeping constantly and finally to the point where no one could wake him up. He was transported back to the hospital where he was operated on and they adjusted the shunt valve....they discovered the shunt was not functioning properly and he had shunt revision surgery this past 09/30/14. The valve was replaced and the catheter into the valve was also replaced as it was not draining properly. Tuesday 09/30 we thought, this is it - the next chapter - and even though it feels like we are back to square one, we are moving forward...He remained in the hospital a week as he spiked a 104 fever, and once again the nurses, doctors, could not wake him up....they sent him for CT scans, X-rays, EEG, blood work, etc...No infections (other than a UTI which he was being treated for)...they were stumped...he was released on 10/06/14 to the sub-acute skilled nursing facility b/c there was basically nothing more the hospital could do...the shunt was functioning properly.... My mom is beside herself....he is barely eating...but, well eat if someone feeds him..not a lot, but some...he won't open his eyes at all....he will answer questions off and on....but just keeps his eyes closed and all he wants to do is sleep. I keep telling myself it's one day past the shunt revision and his body/brain has been through so much...maybe it's just going to take a very, very long time for him to get on the road...the other side of me thinks, how can he get on that road if he won't open his eyes? How can he participate in physical therapy? occupational therapy? I pray and pray for a sign that he's progressing but can't help thinking we've gone backwards....it's so sad & disheartening as we are just shy of 3 months into this...I have patience but, not sure how to keep positive anymore...the doctors have no answers as to what is happening... Just wondering if anyone out there has had this similar experience..any bit of hope I can latch on to would be a God send. Thank you all - hugs.....Truzzi

2006 was meant to be a year of new beginnings my darling husband Morris had been given a new lease of life in May of 2005 when he had his quadruple heart bypass. He had been really poorly from the September of 2004 and it was a stressful time for us as a family. For his mother it proved too much and she suffered with a heart attack the day before Morris was discharged from hospital and ended up having a triple bypass herself within days of her son. It was also the year we would celebrate our 25th Wedding Anniversary. I was running on low batteries and felt constantly tired from about the May. We had booked to go to Majorca for two weeks at the end of August as we would be celebrating our 25th Wedding Anniversary. A couple of days before we were due to leave I noticed that my left eye was badly bloodshot but thought nothing of it as it wasn’t painful just not particularly nice to look at. It cleared up and we had a really lovely and relaxing holiday. I had only been back at work for less than two weeks when I had to take a further two weeks off when Claire was ill. I returned to work at the end of September and life began to return to a normal routine. In retrospect and to be honest I really can’t remember but Morris tells me I was suffering from more headaches but as I was taking quite a lot of Nurofen for tendonitis in my right ankle I just don’t know. It was about the beginning of October when I started getting very sharp pains behind my left eye. I put it down to stress at first after all that had happened with Claire and the fact that I was proof reading training documents at work. I also had quite a severe chest infection and had been sent for x-rays, the first lot of antibiotics failed to clear it and during this time the pain behind my eye was becoming more severe and even more intense, at times that it would wake me up. I had decided to discuss it with my G.P when going back for more antibiotics but because I’m a stubborn person and she wouldn’t let me get a word in edgeways, too busy lecturing me on smoking I ended up leaving in a foul mood without mentioning it at all. It was now the beginning of November and the stabbing pain was happening more often. I had phoned the surgery for an appointment with a different G.P but could only get an appointment with the same G.P for the 3rd of November the Friday. On the Thursday was on a late shift 12 - 8 at work so went in as normal by about 2 p.m the pain behind my eye was quite severe whereas until that day it had come and gone and was mainly a stabbing pain now it had changed. Its quite hard to describe the stabbing sensation was still there but also constant throbbing and pressure. I took some painkillers hoping to ease it off and continued working. I went into a meeting at 3 p.m and it was during the meeting that I felt extremely ill and had to run off to the toilets. I felt really sick but wasn’t actually sick. I splashed my face with cool water and returned to the room and told them I had to go. I must have looked bad as no-one argued with me I cleared my stuff away and called Morris to pick me up, he was painting his mum’s house so said he would send Claire. I didn’t make it out of the building had to dive into the toilets and was violently ill managed to rinse my mouth and face which helped slightly and made it outside to wait for Claire. Don’t you just love sympathetic children she took one look at me and said don’t you dare be sick in my car mum. Claire dropped me at home were I literally crawled up the stairs and put myself to bed with a bowl in tow. Morris came dashing home from his mum’s really concerned it was unheard of for me to go to bed no matter how ill I was but I just couldn’t move, any movement at all and the pain behind my eye got worse and the nausea. I suppose if I had to get ill I had chosen the right time in one respect. Morris had just bought a black cab and was just that week starting up as a self-employed cab driver. Prior to this he was a rapid response driver for a security company working up to 50 hours a week and would have been unable to take time off to look after me. I made Morris go out to work and refused to go to the Doctors as I had an appointment the next afternoon. I just stayed in bed drifting in and out of sleep cringing and moaning every time a firework went off. Morris kept popping in to keep an eye on me and that night I did manage to sleep fitfully. On the Friday couldn’t really move a lot without pain but dragged myself out of bed in the afternoon to go to the Doctors. The Doctor was as useless as usual and not really very interested in listening to the type of pain I was having, merely pressed on my cheekbone asked if it was sore and said it was Sinusitis. I was sent home with Sinutab and told to go back the following week if it was no better. The next morning actually dragged myself downstairs as Morris had been working and when he got into bed every time he moved my head hurt. I phoned work to let them know I would not be in as it was my Saturday to work and tried to lie on the sofa as could not manage to sit up right. Callum had Cbeebies on and the colours were playing havoc with my eyes now realise that I had photosensitivity so put up with it for as long as I could then crawled back into bed. I don’t know what was worse being downstairs with the telly or trying to keep my head still with Morris in bed eventually had to wake him up and ask him not very nicely to get out as he was making me feel ill. My poor husband and children were really worried about me and kept popping up to see how I was. Morris came in about 1 a.m the Sunday morning to check on me and wanted to take me to hospital as my left eyelid was partly closed and my vision had become blurred and double. Morris wanted to take me straight to the hospital but I said I would phone the NHS helpline. One of the Nurses called me back and I described my symptoms and was told to get myself to hospital immediately, they did offer to send an ambulance for me but I said I didn’t need one and Morris took me. We got to the hospital early hours of the Sunday morning thankfully A.E was not too busy and I was seen fairly quickly. The Doctor actually knew there was something badly wrong with my sight but it went downhill from there as the A.E consultant would not approve a scan as they thought it might be caused by Glaucoma. So I had to wait hours for the on call Ophthalmic Registrar to come out and they had no cubicle with a bed for me to lie down on. I was eventually seen by the Ophthalmic Registrar at 8 a.m and she diagnosed a Third Nerve Palsy and stated there was no damage to the eye at all that it was caused by pressure behind the eye. Back to A.E who now had to authorise a scan but as it was a Sunday had a further wait as they only have on call Radiologists at the weekend. It was 10 a.m before I finally had the scan completed and was sent back to A.E to wait for the results. Finally at 11 o’clock they made the decision to admit me. Then began my bed hopping around Arrowe Park, I started off on a Trolley Observation ward until I was eventually transferred to a general observation award about 2 o’clock. Which is when I sent Morris home for some sleep poor man had been up all night and had not had much sleep the day before either because I had ejected him ruthlessly from the bed. I was kept in Arrowe Park hospital for six days during which time I was moved at least three times. I also had an MRI and a neck scan done I was supposed to see the visiting Neurologist on the Tuesday but due to an emergency it was the Thursday before he came. Although I remember all of my time in the hospital I was still suffering with excruciating pressure in my head and the stabbing pain behind my eye. I now know that my Aneurysm was leaking during this period and that sometimes I felt able to move about and leave the ward and at others could not lift my head from the pillows. During all this time I was really hoping that it would just go away Morris and I were supposed to be going away for a long weekend to Santander on the Friday it was somewhere Morris had always wanted to go so I had arranged it as a surprise for him. Morris came in early on the Thursday to be there when the Neuro came. We saw him come in with the scans and he was just holding them up to the light not placing them on the boards to look at them. After about 10 minutes he came across to talk to us and said he could not see anything obvious but would take them all back to Walton with him for the team to look at. At which point I asked if I would be alright to fly to Spain the next day he said no I had to wait for them to examine the scans first then he would let the hospital know the following day. I woke up the Friday and was really bad, the pain had intensified even more and could not bear the lights, noise of the ward and was extremely sick yet again. I buried my head under pillows and covers and didn’t surface again until lunch time but still could not face hospital food. I finally managed to pull myself together and told the nursing staff where I was going down to the Cafe in case Walton got in touch. I called Morris and told him I was off the ward and he and his mother came up early. I was trying to eat something can’t remember what so I must have stayed off the ward for nearly two hours before we went back up. When we got onto the ward the Nurses told me they had been looking for me, Walton had called telling them to get me on flat bed rest immediately as I had an Aneurysm that might go at anytime and they were arranging an immediate transfer for me. No doctor came to see before transfer to explain what it was or what the effects might be and I had never heard of them but did realise that if it was in my brain it was serious. Morris went off to take his mum home and let the girls know what was happening and told me he would then meet me at Walton. I only had to wait about an hour for the transfer and what was then to be the longest few hours of my life. To say I was terrified is an understatement for the whole time I had been in hospital I had been going up and down in the lifts a few times a day and going outside on my own for a sly smoke. My thoughts turned to my family and I was really scared that I might not see my daughters and grandsons again and I certainly did not want to leave Morris, we had promised each others years ago that we would grow old, grey and wrinkly together. The trip over to Liverpool was awful it was through a Friday night rush hour and my poor head hated every single pothole and bump along the way. I got taken straight up to a Neurology ward and whether it was the journey or not I don’t know but the pain behind my eye became really excruciating and I had to wear an eye mask to block the light as it hurt so much. The on call Surgeon came to see us about 11 p.m and explained a little about the condition and said if you get a really bad pain like someone kicking your head hard we’ll whip you into theatre tonight if not a Consultant will see you in the morning. Morris was sent home and told he could come back first thing and I spent the rest of the night in horrendous pain made worse by the fact that nearly all the women on the ward had eaten something for tea that disagreed with them. I spent the night groaning in pain and no amount of pain relief touched it. I made it till 8 o’clock the next morning then it ruptured again the pain was so bad that I was screaming with agony how long it lasted I don’t know probably seconds but it felt like forever. The nurses came running and tried to give me a cold compress but I demanded a hot one and when applied it eased it a bit. Morris turned up just after and I think I just clung to him in absolute terror that I might not see him again. The Consultant came around just after Morris and went through the options with us. He explained that coiling was the preferred and less intrusive method but that it could not be done till the Monday as they don’t have the staff in at the weekends. He then went on to say that he considered that I should have an immediate Craniotomy as he did not think I would survive till the Monday for the coiling procedure. So really no choice at all but I was in so much pain I just didn’t care anyway and told him to go ahead. He did try to explain the risks in both procedures and the percentages but I don’t remember much of that conversation. I think I realised just how serious the procedure was because they let Morris accompany right down to theatre and he stayed with me until I was sedated. I don’t know how long I was in theatre and even Morris is unsure as no-one came out to see him after the operation. The first he knew that I was alright was when he seen me being transferred to the H.D.U. My first memory is when Morris and my daughter Sarah came in to see me but as to the time really don’t know. I do know that later the Xfactor was on as the Nurses asked if I minded them putting the T.V on. I must have drifted in and out as remember the dreaded questions every couple of hours and always gave them the wrong hospital. On the Sunday because I obviously was doing really well they transferred me from H.D.U to a Neurological ward. I remained on the critical care part of the ward until the Tuesday when they got me out of bed and started me walking. Then moved further down the ward as I no longer needed constant observation. I remained in hospital till the Friday and then was discharged with no information at all just a letter for my G.P with my medication listed on it and an appointment for the Nurse to call the following Tuesday to remove my clips. I can honestly say the first month or so doing anything at all just made me so exhausted and it was a real effort just to bathe and dress myself. I would cry buckets for no reason and even the simplest of tasks was beyond me. If I managed to get to the kitchen to make a drink chances were I would forget I’d made it and return several times and each time forget to take it back with me. I also suffered with my grammar and speech for quite some time much to the amusement of my family and friends. I always knew exactly what I wanted to say but what actually came out could be very different indeed and in some instances very embarrassing. I also had a very short concentration span and could lose the thread of conversations altogether especially if more than two people were involved. This still happens even now if I’m tired or in a busy place. My balance was all over the place because of the Third Nerve Palsy and it was really difficult to open my mouth to eat and chew food. In the second month I did start to feel slightly more able to do things but trying to load the washing machine was a definite no as bending made me really nauseous. I would start to cook but trying to keep upright for too long played havoc with my head so needed someone nearby to take over. By Christmas although still suffering badly with the fatigue and head-pain I managed with Morris’ help to cook the lunch. It was while sitting in the dining room after lunch into the evening with just low lights and candles burning that Morris noticed that my lid was opening on my left eye. It was the best present ever even though it caused quite a few problems as the vision was still distorted and double. Over the next two months with patching the vision started improving at the end of February I had my follow up appointment with the Neurosurgeon who promptly discharged me but gave me a leaflet that I really should have been given when I first left the hospital. I returned to work on a phased return in June 2007 and slowly increased this to 30 hours by the December. I did have ongoing problems with head pain and had started to try different types of medication to help control it. In my second year it very slowly dawned on me that I was working 6 hours a day Monday to Friday and was too tired to do much of anything either in the evenings or at weekends. Being stubborn I struggled on till July of this year. After a really enjoyable meet in Cheshire I returned to work on the Monday by the Wednesday fatigue had kicked in and had to call in work sick both the Thursday and Friday. That’s when I made the major decision that I had to reduce my hours back down and work were really good letting me do so from right away. At the moment I’m working 25 hours a week but will most likely be reducing this further still the beginning of next year. Physically I am still suffering with a lot of head-pain in March of this year I returned to my G.P and discussed how I was getting on. The Doctor was unhappy that the pain I was getting was still almost continuous and sent a referral over to Walton for me to be seen by the Neuro he also had another C.T scan done to check everything was still ok. The scan result was alright which was a relief and I eventually got my appointment with Walton who had not received a copy of the scan so had to return 8 weeks later once they had a chance to review it. I had started taking a low dose of an anti-depressant in the October of 2007 for nerve pain but whilst stopping some of the pain it was not getting rid of it all. On my second visit to Walton the Neuro talked about what type of treatment we could use and gave me an anti-epilepsy drug in a low dose to try and explained that they are not certain why some people suffer with nerve pain and others not at all and some can develop it years afterwards. The tablet I’m on at the moment isn’t working either my Doctor wanted to increase the dose but have asked to come off them as they are making me gain weight. I will be going back onto the low dose anti-depressant tablets as I already know they do cut down the pains a bit without making me turn into the Michelin Man. Recovering from an SAH is not easy or straight forward, it is a continuous journey of rediscovery that has to begin with acceptance which is perhaps the hardest thing to come to terms with. Once I learnt to accept and adapt to the new me it did get easier. I still get frustrated and angry about some of the things I used to take for granted. There are also quite a few things I would love to do like returning to studying but I now realise that at the moment my brain is not yet ready for that. I would like to say a big thank you to Karen and her family also Keith (Bogbrush) for creating and maintaining this site and all those who contribute because it has played such an enormous part in my recovery.