Liz D

Hi Dawn I'm not on here much at all these days but do 'pop in' and do a bit of reading. That's great news and a big milestone. It really makes so much difference when you get support on your return to work and also that the support is continuing for however long that may take! I'm now back at work 3 years and have seen the improvements in memory and concentration. I'm still improving! I still have crashes but they are no longer related to just work, usually I've had busy weekends, parties, weddings etc. These crashes are just part of me now and that's when I rest, sleep and bounce back with the support of my lovely colleagues and family. Good luck to all who are striving to get back to work.

Hi Scarlett I've been reading through this thread and can understand why your anxiety levels are quite high. My bleed was diagnosed by lumbar puncture and like Lin, I didn't find it that bad at all. I'd heard all sorts of horror stories over the years about this procedure but it really wasn't all that bad. They do give you a local anaesthetic so you don't feel any pain, the thought of it was far worse than the actual procedure. It's also over and done with much quicker than an angiogram. Does your GP realise how anxious and stressed you are? Can't he suggest any ways for you to reduce this? I only ask beause I work in Psyhcological Services and this is a website we pass on to clients. http://www.ntw.nhs.uk/pic/selfhelp There is a booklet on stress towards the bottom of the list. You can either download and print off the booklet or dowload it onto an MP3 player. There are relaxation excersises in it. There is also a booklet on Anxiety. I hope you don't mind me butting in but I just thought maybe this might help whilst you wait for your angiogram. Take care.

Hi I had my SAH in February 2009 and was treated at the Edinburgh Western Infirmary. There is a Clinical Nurse Specialist Interventional Neuroradiology in the department of Clinical Neurosciences. She was present in theatre when I had my coiling. What should have happened is that she should have visited me prior to my discharge and gone over things with me. Unfortunately the system didn't work in my case and she only found I had been discharged after I'd been home for one week. However, she did write to me, explaining what procedure I had had, how many coils they inserted etc. There was some information on how I would feel and about how much rest I should be getting. Also she gave me a list of support groups, but they were all 35 miles away from me. She also sent me her business card with her contact details and I could contact her with any questions that I might have had. Whilst this was very good, what I really needed was to speak to someone who had gone through this and see how they had managed. The biggest questions I had were, will I recover from this, how long will it take, has this shortened my life expectancy, what will my life be like? I thought I would be back in my old routine in 12 weeks and couldn't understand why I still felt so poorly. It was my Gp that told me that it would be a long time, he has seen quite a few patients over the years who were recovering from a SAH. I know that's not the case with every GP. It was finally finding this website and speaking to others who were further down the road of recovery, that helped me. The people on here made me feel normal for the first time, that how I was feeling they had felt the same. I finally got hope that there is life after SAH! A booklet with survivors stories and their rocky road to that survival would have been very helpful to me. I wouldn't have felt so alone. I also wish I had left hospital with a note of this website.

Just thought I'd add to this thread. Hubby and I were given free UK & European travel insurance from Nationwide last year, we have a flex account. If you pay in £750 or more each month you're given this. If less is going into the account, the trick is to pay in enough to bring it up to this amount and then take the money back out again! We're going to Vienna for a few days tomorrow and I called their Medical Screening number to tell them about the SAH and that I take 2 blood pressure meds. I've been given what they call a Medical Extension and it's completely free. The SAH made no difference because I've not been prescribed medication in the last 12 months, as a result of it. Also because my BP meds haven't changed in the last 6 months, that's also had no impact! Not often you get something for free and it's useful!

Hi Dawn I'm sorry that you're manager's attitude is making you doubt yourself. You are doing really well for only being back at work for 4 weeks. I've said it before, when we return to work we are at the mercy of our managers personality. If they have very good people skills, then we will get on great but if they have poor people skills then our hill is even harder to climb. If people are walking on eggshells then that's their problem! Do you talk to your colleagues about how they feel you are coping? When I first returned to work and was feeling the lack of support from my manager I asked my colleagues how they felt I was doing. They were great, they all said they thought I was doing really well. One said that if she had been off work for a year she would have needed to be retrained completely, never mind having had a brain injury too. This reassured me that I was doing my best. Michelle is right, you will find it easier to learn the new computer package when you are learning together. Your manager was a bit silly in starting you off with Windows 7 when you had never used it before. Shows she doesn't understand about brain injury unfortunately. Good idea to keep a work diary, I did that. Looks to me that your manager sounds a bit like my old one. Her reports to Occy health were always negative, which annoyed the occy health doc. He said he'd never seen reports that didn't mention what I was coping well with. A good manager will give you a full critique, you will be told what your doing really well, as well as what needs to be worked on. Then a good manager will discuss with you what support you need to improve your weaknesses! If she perceives the phones are going to be a problem for you then she should be thinking about the support you will need. As for getting emotional, what's wrong with that, you're human!! My line manager's eyes well up at the least wee thing, it's just how she is and she's never had a brain injury! We've never seen this as a problem in our office. You are doing really really well and try not to let this affect your confidence. I hope this coming week is better for you. Take care.

Hi Mark There is no waiting time, you can fly as soon as you feel up to it. There are people whose SAH happens on holiday and they are treated, discharged and then fly back home. I found the flight was fine, take off makes me a bit a dizzy. I find that airports affect me more. The noise, people and bright lights tire me out. I have to have a bit of a lie down when I reach my destination.

First rupture was walking home from work and second rupture, 4 days later outside of a restaurant.

Hi Kris I think I can relate to your post. I've thought about the meaning of life a lot. I was very poorly but wasn't fully aware of just how ill I was. I was told by the doc (a colleague) that I was very seriously ill. My memories of the first few days are a bit mixed up. I was going into organ failure and do remember seeming to go off into blackness but being very peaceful. Then I remember someone shouting my name, which cut through this blackness and when I opened my eyes there were quite a few medical staff around me and administering a lot treatment. It was at an appointment with the consultant a year later that he went into detail of what they had to do keep me alive and again stressed that I was their miracle for 2009. This kind of shocked me and started me thinking. This is one of the few vivid memories I have of those few days. The thought of death doesn't scare me because of this very peaceful feeling I had but no way am I ready to go yet! I often wonder if this is why I no longer get angry and am a very laid back person.Before I would get frustrated and annoyed in some situations, now I tend to smile and just get on with things. I just can't see the point of wasting energy on this emotion, life is for living and enjoying every moment and particularly enjoying my family. I really don't understand why some people are grumpy and horrible to one another. This laidbackness could be down to some damage but I really like the way I am and the way I view life. I keep telling my husband that life is all about memories and that life is a very fragile thing. He works very hard and long hours and I keep telling him to make sure he has time to enjoy his life because if it were to end suddenly does he want his life to have been about work, work and more work! When we're not here all that's left of us are memories. So I want to leave as many happy memories as I possibly can. I know I see the world very different to others because of having had a SAH and all that came after it. When I'm no longer around I want my family and friends to be able to smile when they remember me because they knew I was happy.

Hi Mike That's quite a difficult choice for you to make. Who's asking you to decide? In our NHS you would be referred to Mental Health Services by your GP and then an assessment would take place. The referral will have details of the problem from the GP, this would then be looked at by a psychiatrist and a psychologist. They would then give the client a date for an assessment, where questions would be asked by both of them. After this appointment and after they agreed on the best course of treatment, you would then be given an appointment with either a psychiatrist or psychologist. A psychiatrist is a medical doctor who will see patients with mental ill health, they can prescribe medication. Sometimes clients are treated by a psychiatrist first and then when the condition is stablised they made need the help of a psychologist and sometimes they are treated by both at the same time. A psychologist will work with the patient to find a strategy to enable them to deal with their troubles. Dawn is correct, some will go back into your life. However, my experience with working with psychologists is that they prefer to deal with the here and now. They focus on what is troubling you now and encourage you not to dwell in the past (you can't change the past or control it but you can start to make changes now). I hope you get the help that you need, take care.

Hi Bhav Welcome to BTG. If you go to the box just below the blue lines with New Posts, Gallery etc. You'll find a box titled 'Search Forums'. Type in Critical Illness cover and the discussions for this topic will come up. I don't click the 'advance search' button I just hit return. There is also a thread from some time ago, I'm sure, with a member who also had an AVM. This should also come up after a search. This is a link from Karen http://www.avmsupport.org.uk/index.php Take care and good luck with your claim.

Hi Michelle I don't come on here much now but I do try to catch up with things when I can (usually when I'm at work, where I am now). Congratulations on your 4th anniversary. You have come through some tough times but the one thing that comes shining through from your posts, is your positivity. I hope you are having a lovely day.

Hi Dave You have been and are still going through such a lot and it's so nice to hear that you have such a supportive family around you. I had a brain stem stroke during my coiling procedure. This has affected my left hand side causing me weakness in my arm, weak grip in my hand, weakness in my leg. The left side of my body sort of 'shunted' and everything is slightly lower than the right! I can have problems with my balance which is worse when I get tired. I have also suffered with quite bad anxiety which caused me to have panic attacks. The anxiety gave me quite a few physical symptoms but I've been lucky not to have suffered with depression. I'm now 3 and half years post SAH and with the initial help of medication my anxiety is now under control. I can recognise the symptoms and try to keep myself calm until it's over. Other than the weaknessess I don't get any stroke like symptoms. I know you are getting professional help for your depression and I don't know if you will interested but may I suggest a couple books that might be helpful? They are: I Had A Black Dog and Living With A Black Dog both written by Matthew Johnstone, who suffers with depression. These are books that the consultant phsychologist (I work for the NHS within our phsycology department) suggests to patients that they may find useful in explaining depression. Depression is a dreadful illness to have to live with and one which takes an enormous amount of effort to combat. Winston Churchill suffered with depression and it was he that used to call it 'his black dog'. Have you been given any relaxation excercises to try? There is a very good website www.stepsforstress.org funded by the Scottish Government. It has tips on how to deal with stress. There is a booklet that you can download and also a relaxation CD that can be sent out. I hope this may help in some small way. Take care.

Hi David I've just read your thread and I'm glad that you are making your way out of your dip. This site is such a lifeline. We've all had days when we've got nothing left to give, I know I have and the wonderful people on here helped me see my way through. You are so very right that we don't need to explain ourselves, the others just get it. The important thing is to come on here and post when things are tough. Chronic pain is a dreadful thing to have to live with and hopefully the pain clinic can show you a way to some respite. I manage to work 18.75 hours per week and read with awe the posts from people, like yourself, who manage to work full time. As for crying. I asked one of the psychologists I work with why we cry. She said there are a number of triggers, one is that it's a response to a build up of energy with feelings. That it could be a sign of being overwhelmed and a need to address something. But more than that, she said it's a very important survival mechanism. Be kind to yourself over the weekend and take care.

Hi Claire I think it depends on what tests the lab is able to do. My local hospital was limited in what tests they could carry out and I was told if there was no blood in the sample then they would have to send it to another lab for further testing. I had symptoms of having previous bleeds. In December 2008 I had been on a night out with colleagues and they thought I was a bit too tipsy (I'd only had a couple of drinks)! My husband actually thought my drink had been spiked because when I came home I was slurring my words and couldn't remember where I had been. I also was very sick during the night and had a headache. Similar in January 2009. Out with the girls and this time I'd only had one drink and had to leave early because I didn't feel well. I woke up in the middle of the night being sick and had a headache, I was sure it was the curry I'd eaten! The next afternoon in work I noticed that there was blood in my eye but just put it down to bursting a blood vessel because of how violently I was being sick. Never did I even think to connect these two! Then in February the aneurysm ruptured, refilled and ruptured 4 days later. It was the fact that I'd survived all of this amazed the docs, they always referred to me to as their miracle! But my aneurysm was on the left vertebral artery, so a lot of the blood went down my spine. This was why they sent my sample to a university lab for further testing. I hope it goes well today and you get some answers to your questions.

Hi Claire I'm sorry you're having to go through this and for all the worry it's causing you. I had a SAH in February 2009. My CT was clear (the aneurysm showed up on an angiogram) but I was diagnosed with a lumbar puncture. They look for blood particles within the spinal fluid but if it's not performed properly, there can be no spinal fluid, only blood from the surrounding tissue. There's a process that goes on, sorry I can't remember what it's called, within this fluid that can tell them when the SAH occured, if there are blood particles. My lumbar puncture showed the process at 4 different stages. That's why they knew that I had sentinel bleeds in December 2008, January 2009, February 2009 and then the SAH. The doctor showed me the fluid, it was sort of the colour of dark urine and it was the lab that said it was full of blood but the blood wasn't visible to the naked eye. Maybe you should ask them to clarify that there was no blood within the fluid they eventually managed to withdraw. This at least might ease your worry over the lumbar puncture. As for giving you a paper bag, is that not an 'old wives tale' and does nothing to slow down breathing when hyperventilating! I hope it goes well for you on Tuesday and that you get the answers you need and deserve. Take care.

Hi Tom Good luck with the angio on Thursday. I was beside myself with anxiety for my follow up angio and that was 12 months after my coiling, I'm not surprised that your dreading it with it being so soon after your operation. But look what you did get through 7 weeks ago, so you can get through this. I too have never really felt 'lucky' for having to have gone through all this and it took me a long time for the anxiety to lessen. My advice would be to accept all offers of help. Don't cancel your appointment with Mental Health, go along and see what they can offer you. I work for mental health and in our department, the first thing after we receive a referral from a GP, is to book the patient in for an assessment. This is done by a psychologist and psychiatrist and I'm afraid they ask quite a few questions but they're needed to make sure that the patient gets the right treatment. They need to know if it's low mood, mild depression or a deep depression and gear the treatment appropriately. If the patient is referred to psychology, they are told they can have 6 appointments but patients are never discharged until they are well, so however many appointments they need they get. Have you let any of your family have a look at this site? Maybe it might help them understand that how you are feeling can be very common amongst SAH survivors and how in time most of us have made great leaps. Take care.

Hi Sandi Well done, what a very brave and hard decision to make. I understand a bit of how you feel. When I left college and started working, I was very ambitious. I had goals and was meeting every one I set, I was a senior manager and being a director was my end goal. After 5 years of being together we got married. Hubby was as ambitious as me and we were in the throws of moving to London from Glasgow, which would get us onto the next step. Then I discovered I was pregnant, I was 27 and devastated. I was determined that the baby would not get in my way and planned to resume my career. But after being on maternity leave for 3 months before she was born, I started to have another look at my life and questioned what was really important. So when my daughter was born I made a huge decision, with hubby's blessing, to resign. I gave it all up and became a full time mother. It took a lot of adjustment but I have to say, stepping out of 'the rat race' is the best thing I've done. My pace of life slowed right down, although I did have to come to terms with this major change! Loss of status (why are mums so undervalued!), loss of income, loss of independence and loss of mental stimulation. Change is not easy but handled correctly and you can have a positive outcome. But I always thought that it would only be until my children had finished school and then I could have another career. I wanted to teach business. This is what I had started, I was in my 2nd year of a business degree when I had my SAH. I knew that it was never going be, my brain would have come to a complete stop if I tried to continue my recovery, whilst working, studying and being a mum. I knew I could cope with work, so the studying came to an end. But even then I had to make changes, I couldn't cope with a 35 hour week and had to cut my hours back to 18.75. The most important lesson I learned, all those years ago, is that you have to get a work life balance. That's why I had to cut my hours back. I feel now that I have it all! I can still work, I enjoy a good social life (although not as hectic!) and I have time and energy to enjoy my hobbies. Last week, due to colleagues being on annual leave and one on compassionate leave, I worked 37.50 hours. I managed this but by Friday evening I was exhausted, had brain fog etc. Today I have slept for most of the day. I did nothing else last week, no cooking no housework, nothing. That's fine for this one off, it was exceptional circumstances at work but I'm not going back to that. My life can't be just about work and nothing else. It will be hard for you these coming months, it is time to reflect but also to look forward at opportunities. You have so much drive that I still believe, whatever you decide, you will succeed. Take care.

I also think it's strange, did they give you a reason? I know data protection can be a pain but if they're concerned they're not speaking to the right person then they usually call you back on the contact telephone number in their file!

Hi Marie Welcome to BTG. Gosh I remember well the first months of recovery. I questioned everything and needed a lot of help. I too had my operation in Edinburgh. Were you given a card with Neuro Nurse Specialist's name and contact details, is it still Edith Wood? If so might be an idea to give her a call and let her know how you are feeling. You sound a bit overwhelmed at the moment and that's completely understandable. You've been through a major trauma. I work with psychologists and they are always encouraging clients to at least try any solution or medication that is offered. Anti depressants can lessen your anxiety whilst you try to find solutions for problems. Might be an idea to try them and see if they help. I would also go back to your GP and ask to be referred to either a psychologist (our waiting time is about 4months) or a counsellor (7 weeks wailting time). Get yourself on the waiting list, if you don't need it when you come to the top of the list you can cancel. What about your work? Some employers have employee assistance programmes where you can get this kind of help quicker. There is a website www.stepsforstress.org where you can get a relaxation CD sent to you as well as having lots of information on coping with stress. It's very usual for us SAH survivors to suffer with fatigue, especially in the early months of recovery and it must be exhausting to have to deal with a 9 year old too! Remember this little person needs mummy and your feelings of worthlessness is the depression talking and it's the depression that needs to be tackled. Have to you told your GP about how you are feeling? If you have and not been listened to then if you can see another doctor at the practice! This is a wonderful site full of wonderful people and we've experienced just about every emotion possible. It does get better Marie but it does take time. There will always be someone on here ready to listen and share their experience with you, so keep in touch. Sending you big hugs, take care.

Hi Dawn Did occupational health let you see what your manager had asked them to report on? Their reports depend on what is being asked of them by managers and you are entitled to see everything written about you. Was a return to work talked about at this session? If your mananger asked OH to give an idea as to how long you would be off, then it would be OH's job to try and give anopinion on this. In our NHS, depending on the illness, you have about a year before they start looking at ill health retirement. I think this is what is meant by 'further management action', they may be thinking about going down ill health retirement road. I agree with Sandi, phone them and ask what they mean by that sentence.

Our dog new I was ill months before my aneurysm ruptured. She's usually a very well behaved (and lazy!) dog and very seldom barks. She knows upstairs is our area and she's not allowed to go there. Also when you come through the door she just lifts her head, has a look and goes back to sleep. Her bed is her very favourite place. But for months before, she had taken to sleeping outside of our bedroom door at night. When I came home from work she would launch herself at me, barking and did seem relieved I was back. In the evenings she started to sleep on the floor at my feet and would follow me around everywhere. We were starting to worry that there was something wrong with her and decided to get her checked over with the vet. I got sick in between this and it was the vet that mentioned that she would have been aware that all was not well with me! My neighbour said that she would howl and whimper during the day, when my husband went to visit me in the hospital and he said she was hardly eating. She watched me like a hawk when I came home from hospital and continued to sleep outside the bedroom door for months. She still has periods when she'll sit at my feet, follow me around and go back to sleeping outside the bedroom. This un-nerves my husband and he keeps a closer eye on me. But I think she's aware that the fatigue is about to hit and just keeps watch. They are very smart our furry friends!

Hi Macca I had treatment last year for a malfunctioning pituitary gland that was damaged by my bleed. This does cause fatigue and is releived by replacing the hormones that are affected, although I'm lucky enough to take tablets. But I had other symptoms, I was starting to put on weight, my hair was falling out, nails becoming brittle and breaking, very dry flaky skin, puffy fingers and even spots on my face! My treatment worked, hair grew back in, nails are fine, weight is finally starting to come back off and energy levels started to get better. But I still get fatigued if my brain's had a lot of stimulation, all the usual things we complain of. So if it is your pituitary you will find things get better with treatment, good luck.

Oh Carl, some people can be infuriating. There's a world of difference from being tired and being fatigued! I returned to work 10 months post SAH and my then manager and office supervisor were so unsympathetic and put me under so much pressure that I lasted 10 weeks and was signed off sick with stress for 4 months! My union (and our occupational health service) was invaluable to me and got me through the grievance process.I was redeployed to work with wonderful people. My colleagues are so supportive and understanding. They know what I mean by fatigue! I've said in posts before, we are at the mercy of managers/colleagues personalities when we try to return to work. If they can be understanding and empathetic and generally just nice people then we are very lucky. But if not then we've got an even bigger mountain to climb! Thank goodness for Unions, hopefully yours will help.

Hi Tom Sounds like the antibiotics are starting to work. Might be an idea to try steam inhalation to clear things and ease the pressure. A good nights sleep works wonders when recovering! Take care.

Hi Tom I was coiled, so don't know anything about stents and that healing process. But gosh do I remember the anxiety! I had my SAH in February 2009, the weather was very cold and icy. So when I came home from hospital I was too scared to even stand at an open door because of the cold air. It took me 3 months and warmer weather before I stepped outside. My GP always made home visits (he said the surgery was full of sick people and didn't want me catching anything) and he kept telling me to go out but I just kept saying once the cold air goes away! I used to have to sleep with the light on because a few times I'd woken up having a panic attack, thinking it was happening again, the dark made it worse. Only this past year or so have I not had to sleep with the door open and the landing light on. The anxiety does ease over time. Have you thought about asking your GP to refer you for some counselling? A lot of us on here found it a great help. You can talk about all sorts of fears and thoughts you have, things you might not want to speak about to your family for fear of worrying them. It was my counsellor that explained that I was suffering with Post Traumatic Stress and unless you deal with it, it only gets worse over time. It's only a thought, I know it's not for everyone.