ClareM

Oh dear Sophie you don't seem to be having much resolution with this. It's a pity you didn't stay at A&E the other day and wait for the consultant. Someone would have had to give you an answer, by leaving you let them off the hook. The consultants secretaries are usually very good and will try and help so maybe worthwhile giving that avenue a go. Are you still getting headaches and what about the other symptoms. I do feel for you as it must be very frustrating. Regarding your holiday plans you would be very unwise to go away without knowing if you have a problem. My nurse specialist at the Neuro unit that treated me was very good and arranged for me to have my follow up MRI before I travelled (3 and a half months after my bleed I flew to Menorca). When it came back all clear with no follow up the hospital discharged me and said I was fine to travel. But you need to get this sorted before you make any plans. I wish you luck and as Super says, any deterioration get straight back. Clare xx

Hi As Jess says everyone's recovery is different and it depends on what happened and how you are treated. At 4 days I was still in Neuro ICU was barely awake and have very little memory of that time. I was transferred to another ward after about a week but still have little memory. Was discharged after 15 days but the recovery is long and slow. Dont expect too too much too soon. Your mum is in the best place being looked after by the best people. Keep us posted on how things are going. Clare xx

Happy New Year Sophie. Glad to hear that your symptoms have not worsened. I am sure you are very confused, I know I am . You really have had a bit of a run around with all this and I feel that it may well be worthwhile lodging a complaint about your treatment. I am at a loss as to what you have actually suffered and can only hope that as you were not referred immediately to a Neuro unit, that there was no cause for concern. Very strange though and I will be interested to hear what the Neurologist has to say. Hope you keep well and are enjoying your New Year. Don't forget though, any worsening of symptoms, go and get help immediately. Clare xx

Hi Sharon Welcome to BTG sorry to hear your partner has suffered a SAH. Very early days for him. The pain at the bottom of his back is probably due to the blood dissipating and will subside in time. He is probably very frustrated and bewildered. Just bear with him. Plenty of rest, quiet and lots of water. Hopefully he will improve in a few days. I am sure other members will be commenting soon with helpful advice. You are not alone. Clare xx

Hi Sophie I do feel for you and am disappointed , not in you but in the hospital that dealt with you. I hope that the symptoms you have described do not become worse. Please, if that does happen, call 999 and get blue lighted in, maybe you will get more attention that way. Watch out for worsening headache, worsening stiffness of the neck and vomiting. Any change in those symptoms do not hesitiate to ask for help. I hope that this action will not become necesssary. Keep us posted on how you are feeling and remember we are all here for you. Clae xx

Hi Sophie i agree with Super that you need to go to A&E now. I work in an extremely busy hospital and there are people who visit for water infections. You have a letter stating possible SAH and as you are now suffering from neck stiffnes you need to be seen now and would not be wasting anyone's time. Please go and jet us know how you get on. Clare xx

Hi Sophie I had my bleed whilst out running. I was blue lighted to my local hospital who diagnosed the SAH and sent me to the nearest Neuro unit (In another town). I was conscious when I had the SAH and for the first hour or so in my local hospital. I then do not remember anything for around 10 days. I have certain 'flash backs' and apparently was talking but have very little memory of the Neuro unit. I only needed surgery as the hydrocephalus had caused a lot of pressure on my brain and needed to be drained. I never saw a Neurologist, only a Neuro-Surgeon and then only when an in-patient. Since then I have had contact with a Nurse Specialist at the Neuro unit. Perhaps go back to your doctor again (maybe by phone), explain your worries and ask if he can find out where you will be seen and when. I am really sorry I can't be more helpful to you, it must be very hard not knowing what is going on. Keep us posted and take care. I hope you have family to help you and your daughter. Clare xx

Hi Sophie This must be such a worrying time for you especially as you do not seem to be getting any answers from the medics re your condition. I suffered from a NASAH. It started with an explosive headache, photophobia and vomiting. I was diagnosed using a CT but I also had a hydrocephalus which resulted in surgery and a 2 week stay in a neuro unit. As Skippy has said I am sure that if there was any worry that you needed urgent attention you would have been referred to a Neuro unit straight away. Have you actually spoken to your GP? GP's are often fairly uneducated about SAH, mine had never had a patient with one. Would it be possible to have a telephone consultation with your GP to discuss your predicament? Perhaps he/she could be persuaded to contact the Neurologist himself by phone to discuss your case and then possibly put your mind at rest or at least give you some idea when you will be seen. I hope you manage to get some answers soon. In the meantime I hope you can continue to find some help here on BTG. Clare xx

Wow Robert what a past 24 hours you have had on BTG ! (well maybe slightly more). Bet you and your family are glad you crossed paths with us all. As Subs says it is great that you are feeling so positive about the way ahead. Hope you enjoy the book (let me know what it's like - I haven't read it) and hope you have a fantastic Christmas. Great that you have that Headway appointment. Lets hope that 2017 is YOUR year when you regain yourself and accept and learn to live with the new normal Clare xx

Hi Jennifer you are definitely not alone in your feelings. I am not quite 2 years and still feel very much the same as you. I have definitely changed , I'm not as sharp but am beginning to accept that. I sometimes wonder if I should try and forget I ever had a bleed and everything that went with it. I tell myself to act 'normal' be like I was before. But at some point I realise I can't do that. It may be the fatigue or my memory but something always pulls me back to remind me that I have a 'new normal' now. I think that maybe that's our brains way of telling us that it still needs time. I totally understand how you feel that's because I feel that way too, as do many other people here on BTG. You have come to the right place for advice and help. Tell us more about yourself and your bleed if you feel able. Look forward to hearing more from you. Clare xx

Hi Robert Today seems to have been a good day for you. So glad that the posts from BTG members seem to have given you a real incentive to change the direction of your recovery. If you can get back to see the psychologist I would recommend doing so. I presume it would have been a neuro psychologist, specialist in dealing with difficulties after brain injuries. I have found the sessions with mine to be invaluable, she has helped me realise that I have limitations and need to take heed of them. Yes the sessions have at times been intense and I admit to shedding tears on several occasions but they only have your best interests at heart and do not intend to be intruding or patronising. You seem so much more positive already, I hope that you continue to feel this way. Clare xx

Hi Robert I think the book that Daffs mentioned is called Touching Distance by James Cracknell, it is available from Amazon. Wise words from Subs, with a view from a carers position. Clare xx

Hi Robert welcome to BTG. Were your haemorrhages caused by trauma or were they spontaneous? Sounds to me like a very brave step to take to move to a more high pressured job, well brave or slightly mad . Most people take a step back after such an event. You may well be struggling with anger due to fatigue. I know when I am very tired and the fatigue is bad that my temper is a lot shorter and I become anxious about trivial things. Maybe the time has come, after 3 years or hard work, to take a step back and look at what is important in your life. Maybe less work would make you less tired and possibly more abe to control your anger and anxiety. I am sure others will offer their advice too, be good to hear your take on their comments. Take care Clare xx

Hi Welcome to BTG, hope you will find the site useful. Ditto what Jess says re speaking to your Doctor re exercise, either that or the nurse specialist at the hospital you were treated (if there is one). My nurse specialist encouraged me to take exercise and I gradually got back to running and also do clases at the gym. You obviously need to be careful due to your falls history so take it easy. Best to take medical advice first and if they say fine then get going. You can maybe have a telephone consultation with your doctor, always feels that you are not wasting so much time that way . Good luck and keep us posted, Clare xx

Hi Myra As Chris says I am a runner too and my bleed happened on a run. I started back on a c25k course in the June after my bleed, about 4 months later. This is a course that gradually gets you running again from the couch to 5K over about 8 weeks. I am now back running at least twice a week 5-6 miles each run and I go to gym classes too. In October I did the Great South Run which was 10 miles. That was my goal and I did it in just under 2 hours, slow but steady. You will get back to it just take it slowly gradually building up your distance. I find I can run even if really fatigued as I don't need my brain to run - I just shut off and let the legs do the work. Good luck, just take it slow and keep up the water. (Plus never run without your phone! ) . Clare xx

Hi Myra wise words from Subs You are are still very early in recovery and maybe need to take a step back from work. It could be that that is affecting your sleep by playing on your mind. I too had a NASAH and took nearly 6 months phasing back to work then changed my job due to pressures. Now on a 4 day week but I still have days I struggle. It takes time to realise that you need to be kind to yourself and take a step back from life occasionally. You will eventually find a new normal but even then may have to make adjustments to fit stresses of the bad days. I don't really understand what your doctor means about memory loss side effects of sleeping tablets, Melatonin seems like a strange substitute however as you are in the USA prescribing is probably different. I have sleeping tablets that I take when I am desperate and only then - I call them my treat. Maybe worthwhile going back and seeing if there is anything else he can offer. Sometimes you just need a couple of good nights to get you back on track. We can't give medical advice so your medic is the best person to chat with. Take things easy you are early days and keep the water intake up too. Good luck, look forward to hearing how you get on. Clare xx

Happy Anniversary and hope you have a Happy Christmas. I think we will always have good and bad days but hopefully the bad are less often as time passes. Well done for getting to where you are and nice to see you keeping up with BTG. Clare xx

Hi Deb Sorry to hear you are having such a bad day, it's hard to deal with especially as other people jut don't 'get it'. Glad your family are a bit more on board now and sad to hear that it took a 'hissy fit' to get their attention. I know how that feels . Is there a Nurse Specialist as the hospital you were treated that you could speak to? A lot of the Neuro units have such a person who you can call up and discuss problems you are having, such as your headaches. It may be worthwhile giving the hospital a call to see if there is such a person. The other option is to call Headway who I believe have trained nurses you can speak to. How are things with your daughter now? I hope you are still getting lots of support for her. Hope you managed to get a sleep and that you are feeling a bit better later. We are all here for you so keep coming back and we'll help all we can, even if it is by just understanding and 'getting it'. Take care Clare xx

Hi Jan You are just behind me in time of recovery. I am 22 months on and must admit I still have bad days. It's so frustrating I agree, when you think you're over it and then bang a day of headaches and fatigue. My neuro psychologust says it takes up to 2 years and even then the fatigue can last forever. I think acceptance is the only thing we can do and take the bad days with the good. There is no doubt mine have become more infrequent, but saying that when they hit it's hard! You are doing really well, keep smiling and sewing those bears ? Clare xx

Such sad news Gill and such a young age. Does make you think especially as both you, I, and many others on BTG were treated at Wessex. A lady I know was also treated there for a similar type of event though I don't thing it was a SAH. She is only 40 and pregnant but the bleed has left her with severe memory problems. I heard Sunday that she has to have surgery after the planned birth as if she has another bleed it will kill her. So sad as again she is so young. Makes me glad to be here, I may moan about the fatigue but at least I am here. Hope Nathan takes the news ok. Clare xx

Hi Maya Hope all goes well for you tomorrow, try not to worry too much. Is this a MRI with contrast? If so although you have to keep still, you can raise you hand to ask them to stop if you feel you are going to cough. Keep us posted on the results, and don't forget all your BTG friends are here to support you. Sounds like you have a lovely family, try and enjoy them and Christmas even though you are having a worrying time. Clare xx

Hi Suzie I too had a NASAH nearly 22 months ago and agree it can be worrying not knowing the cause. I think we all worry about it happening again but have to put that to the back of our minds. Recurrence is very rare. I am not surprised your husband is still fatigued, he is working long hours in a stressful job. Did he phase back or just jump straight in on 40 hours? Either way he probably needs to take a step back and reassess his working hours. Benign or not his brain has suffered a massive insult and it really does take time for it to recover. I too worked 40 hours a week pre bleed but now have dropped to 34 hours, having a day off mid week to recover - and I still need that now. Headaches can be a sign he is doing too much, is he drinking plenty of water as that really does help. However if they persist it may be worthwhile having a chat with his doctor. Welcome to BTG I am sure others will have more advice for you so keeping popping back. Take care and see if you can persuade him to cut down a bit. Clare xx

Hi Fiona Hope you are feeling a bit better and have had a chance to have a chat with a nurse specialist. Regarding work I think they are being very insensitive saying 6 weeks is too long off, have they had any other employees who have suffered a SAH? Once you have spoken to the nurse specialist you are probably better to speak to Occ Health and getting them to do a report (whcih you see first) before you see your boss. Any consultation with Occ Health should be private and not a general meeting with all and sundry. Macca is correct, as this is such a rare condition many employees know very little about it and the recovery needs. Gather as much info as you can to show them and please don't be forced back to work too early. Keep us posted, I am rooting for you. Clare xx

Hi Fiona Where abouts in the country are you? My personal advice would be to get in touch with the hospital that treated you and ask their advice. I presume that you had a NASAH as you did not have any treatment for an aneurysm, this is what I had but with the added complication of hydrocephallus. I was told that I needed to have a minimum of 3 months off work then a gradual phased return but everyone is different. Re the driving it is normally the consultant who treated you who will say if you can drive or not. If there was no invasive treatment I think the DVLA rely on the hospital and GP's advice. Don't quote me on this though as other people here may tell you different. Also as your work involves driving you need to take advice. My HR department held a meeting at my house as I was unable to drive. If you think you are unable to get there tell them so and ask if other arrangements can be made. There is a lot of legislation about sickness and what firms have to do which most people are unaware of. Make sure they do not make life difficult for you especially as you are pregnant. I think you really need to speak to someone where you were treated though, if it was a Neuro unit they may have a Nurse Specialist who will be able to help you. Alternatively you could try Headway. I understand they have trained nurses you can speak to on the phone so maybe that would be an idea. You can find them by googling 'Headway'. Good luck, keep us posted with your progress. Make sure you rest plenty and drink A LOT of water, it really does help. Clare xx

Hi Maya As others have said I am sure if they thought it necessary they would have got you in before January. I know it's hard but try to keep calm for yours and your children's sake. Do not give up on your hopes and dreams, sounds like you are doing really well in your career. Be positive and wait till your January appointment. I am sure they will then tell you more and what to expect, then you can make plans. Be strong and patient and keep coming back to BTG for our support. Clare xx