Gemma B-B

Hi Irene, Yes I found everything a bit too much at first, but over time it has all improved. Now I can do things like watch the TV or listen to music, but as you said it has to be when I am not tired. I think it is quite difficult for people who have not had this happen to them to understand - I would have found it difficult too if I had not experienced it. Even now I find I get surprised at how tired I get or other symptoms and I am the one experiencing it, so it is not surprising that others find it hard to grasp. Sorry to hear about your husband's shoulder operation. You are right that does add the pressure on to you. I know it is not easy but do try to take the time you need to recover as well. I wish you both well in your recoveries. Gemma xx

Hi Irene, Yes it was definitely tough on all my family. I have been very grateful for all their care and support over the past year - they have all been brilliant. Not knowing the outcome of all this is something I still find quite difficult. I think it is my impatient nature as I would just like to know the outcome and get on with it. These things can't be rushed though. I too have been surprised at how much the brain does without us realising it. Everything we do involves the brain having to work in some capacity and I have definitely had to change the way in which I work to deal with the fact that my brain simply can't do everything it used to. For the first 6 months or so after my SAH I couldn't really even watch the TV as it was too much stimulation and going to a supermarket was awful. These things have all improved with time though, it is just a matter of keeping going with it all. Even now I have to remind myself of these things and make sure I take the breaks I need. Hope you have had a lovely time in town today. Enjoy your weekend and cuddles from the grandchildren. Take care, Gemma xx

Hi Irene, It is ok - I always find it good to come on here and get reassurance off others who have had a similar experience. You are right that you should not worry about telling people that you are tired or need to rest. It is definitely all part of the healing process. You need to be kind to yourself and give yourself the time you need to heal. Yes, writing down all your questions for your consultant is a very good idea. I went with a massive list of questions when I went for my 6 month appointment. Hopefully he will give you the all-clear to fly and you can plan that holiday. Having the SAH was definitely a scary time for my whole family, as I am sure many on here will agree with. To be honest it was probably easiest for me as I actually don't remember anything for around 4 weeks after I had the SAH. I was on life support for a while and even after I came off that my memory was so bad that I have not retained any memories from it. I had the EVD fitted for around 10 days after the SAH and was completely dependant upon it so the decision was made by my husband, parents and consultant that I would have the shunt fitted. After I had that done I was able to start recovering more and eventually come out of hospital. I have been in rehab since June and am currently working on returning to my previous job. A very slow process though! Take care, Gemma xx

Hi Irene, Welcome to BTG. I had my NASAH in January this year and unfortunately ended up having to have a EVD and a shunt fitted for hydrocephalus. I have yet to get my driving license back as I need both medical and DVLA approval, both of which are taking quite a long time. Clare is right that the DVLA are quite slow to make their decisions. If they have said you are fine to drive with medical approval then it is worth talking to your consultant about it when you go for your appointment to see what they think. In terms of the head/neck pain you describe - it sounds quite normal to me post SAH. I found I had to take painkillers for a couple of months after my bleed and I still get pressure/tension headaches when I am particularly fatigued/stressed even now. If there is anything that concerns you then do speak to your GP or consultant about it. The 'few hours of tears' you describe also sounds familiar. After my SAH I would cry for almost no reason at all! In rehab I was told that this is all quite normal after a bleed and it has improved over the past few months. Good luck with your holiday plans. I have yet to fly, however I have taken some trips in the UK since my bleed (my health insurance for abroad is very expensive due to the shunt etc. so we have yet to go abroad). I hope you get to go on your holiday soon. Take care, Gemma xx

Congratulations Clare! Enjoy driving again. Hopefully mine will also make an appearance soon. Gemma xx

That is a useful link Greg - thank you very much. Funnily enough mine says I still hold a full UK licence. Unfortunately I think that must be an error as everything they have sent me has told me not to drive. When I see my GP tomorrow I will see where she is up to with the form. I didn't realise that you could fill out some of it yourself. I am happy to do this so might see if it is an option. Yes I was very lucky with the Access to Work. I think my home location helps - there is literally no public transport at all so without it I would not be able to get home from work. My GP was also happy to provide evidence that I could not drive so I dropped lucky. Gemma x

Very useful to know Greg - thanks for sharing. Unfortunately for me my consultant did not reply to the DVLA either time they wrote to him so they are now trying my GP. I am seeing her on Monday, so hopefully can ensure that she does reply to them. Once I know she has I will get on the phone to the DVLA. It is very frustrating not being able to drive - especially as I live in a hamlet with no public transport whatsoever. I am fortunate in that Access to Work pay for my taxi home from work on the days I go in but it is annoying to be house bound. Gemma x

Hi Greg, Like you I had my SAH around 10 months ago and have been off work since. I am fortunate enough to get quite good sick pay as I work in the public sector, however I started claiming contribution based ESA when I ran out of statutory sick pay. The contribution based ESA is the one you can get from having paid full National Insurance - I can't claim the income assessed one as my husband works full time. I also had to complete the medical questionnaire and was then sent a letter saying I had to attend a meeting at my local jobcentre to discuss my return to work as I had been placed in the 'work related activity group' (I am not sure if this is the same as what you are having to go to?). In my case I believe this was because I do have a job to go back to and my currently working with an occupational therapist to achieve this. I went along to this meeting with my husband and all documentation I had about what had happened to me. The meeting actually went fairly well and the man I saw was sympathetic. You are meant to attend the job centre once a fortnight on the work-related ESA but he was willing to simply ring me at home instead (to be fair this is also because I am currently still banned from driving and therefore can't get to the jobcentre). He approved me to still get the ESA whilst I am working on returning to work. I think your GPs advice to record the session is a very good one - then if you don't get the outcome you want you have the evidence to appeal. My husband and I always discuss what outcome we want from these things beforehand so that when we go along we are both clear on what we want to achieve - this also helps me with my memory issues and slow speed of though processing. Make sure you have all your evidence together and know what you want as an outcome from the meeting. As far as I am aware you can claim the contribution based ESA for a year regardless of circumstances etc. so you ought to be able to get that. If you are working towards returning to your previous job also take along any evidence of that as well. I hope it all goes well for you and you get the outcome you are looking for. Good luck! Gemma x

Hi Gilly, Welcome to BTG. I had an NASAH in January this year either during or just after heart surgery. I don't remember much for about 3 weeks afterwards due to the bleed and hydrocephalus I got as a result of it. Like you my neurosurgeon was surprised that it was not caused by an aneurysm as I had such a big bleed. They have found an aneurysm in my brain, but it was not that which ruptured. I had a follow up MRI at six months and from that they confirmed that it definitely was not caused by an aneurysm. As it was such a big bleed my neuro-surgeon wants some further tests doing so I have been referred for this to see if they can get to the bottom of it. As others on here have said it might be worth trying to get your GP to speed up the waiting time for you to see a neuro-surgeon and hopefully they can try and get to the bottom of it. Good luck and take care. Gemma x

Yes the fatigue diary was very useful in identifying the things that I find most draining. It was actually quite surprising as some things were quite unexpectedly fatiguing. I also had to note how I felt emotionally about each task to see whether or not it was worth getting more fatigued for. It was a useful exercise in helping me pace my activities and decide on what I wanted to spend my time on. From doing it my OT thought that the worst things for me were those that involved both visual stimulation and noise as well, which I guess it why I didn't like the TV or going into town. Like you Momo I also find car journeys much worse than I used to so we make sure we stop so I can have some breaks. Learning to manage it all is still an ongoing process though and I think will continue to be so for a long time to come. It is good to hear of recovery continuing for years to come, so thank you both for sharing that. Take care xx

Hi Sarah Lou, Thanks for sharing your experience. It is useful to hear about other peoples experiences of balance issues post-SAH. I do think my current balance issues are to do with fatigue as it does vary based on the amount and type of activity I am doing. I think it will be a matter of learning my warning signs and pacing my activities well, however I imagine that it will be a somewhat permanent fixture in my life - at least for the next few years. I have seen 'the spoon theory' and it does explain well what it is like to have something like neurological fatigue. I did a similar exercise in rehab where I kept a fatigue diary and had to grade myself on how fatigued I was at different points in the day. It was a useful exercise for identify the types of activity I actually find the most draining and the points of the day I find the most difficult. The hardest thing I find is that I never actually seem to get back to a full battery (or a full set of spoons). I think I make the mistake of resting for a while, feeling better and therefore doing something else which means that I then deplete any energy I have built up. I am trying to get better at taking full breaks away from anything to give me that time to rest up. Work have also been supportive in this and have set aside a space where I can go and sit away from any colleagues or pupils in order to rest up as well. I am also trying to make sure I use my rest days at home well. It is encouraging to hear about your return to work and also that you managed to change career post-SAH. Well done Take care of yourself, Gemma x

Hi Macca, An interesting point - thank you for sharing. I will definitely mention it at my next appointment as it could be a possibility and I think it is always worth getting these things checked out. It is encouraging to hear how you have improved over the past 5 years. Even in the 10 months since my SAH I have noticed improvements with the fatigue. For example I used to stammer and slur my speech a lot more when fatigued whereas that isn't that bad now. It is always good to hear of the progress people have made. It just goes to show there is always hope and possible improvements. Gemma xx

Some lovely advice and sentiments everyone – thank you so much for taking the time to share. It is so nice to be able to come onto here and post about an issue and hear back from other people who have also had some experience of it. It is really encouraging to hear about the progress you have all made in your recoveries - so thank you xx Carolyn – your point about the ‘weeble, wobble’ made me smile. I do remember the toys and think I am quite like that now! I always do take care in the shower and when I am out and about as I know my balance is so much worse. I do have a stick for when I am feeling particularly bad, which I mainly use if I am going out to town as I find that a bit of a trial. Luckily for me I already live in a bungalow so don’t have stairs to contend with on a daily basis! Daffodil – I definitely know what you mean about legs not doing what you want them to – that seems to happen to me quite a bit and even with the physio I do not feel like I have made much improvement. Thus far on the bus the worst thing that has happened is someone getting mad at me for sitting in the seats for those less able to stand, which I was doing as I try not to move about the bus when it is moving. I (politely) explained to them about the brain haemorrhage and resulting physical issues - I think they felt quite bad afterwards! That is one of the main issues - the better you look the more people don't realise the daily struggle. It will definitely be useful to see the team down in London and see what they think about the shunt. I agree with your opinion on the effects of the hydrocephalus and the bleed being quite different, but again do not have any real evidence for this. I also think you might be right about taking it a bit slower. I have cancelled some of my plans for my days off this week and am taking it easy. I have also started to take a few more breaks whilst in work, which is helping (my OT says I have to call them ‘total cognitive breaks’ so my colleagues know that they are for that and not just because I am feeling ‘tired’). I think I just get impatient with how long recovery takes, but I know I need to be realistic about what I can achieve. Win – thank you for the formal invite to join the prestigious Shunters Club – I gratefully accept! Sue – yes everything does get worse when I am tired too – speech, balance etc. just goes. I think my brain simply can’t do everything it once did. It is nice to hear about your experience and how far you have come. You are definitely right about not apologising for when your energy is gone – when it is gone, it is gone! Thank you once again everyone xxxxxx

Thank you all for sharing your experiences. As you have said Super Mario - it is difficult to know what is causing the issues - the bleed or the hydrocephalus! Louise - you could be right about me simply doing too much. The reason behind all this is to try and build up my stamina to return to full time work prior to starting my phased return. I can't seem to get past doing about 3 or 4 days of activity a week. That seems to be my limit at the moment and no matter what pacing/strategies I put into place I can't seem to overcome it. Perhaps that is simply my limit and I will have to accept that. I know if I push myself too far I get worse balance wise and also have headaches etc. to contend with. I think I still find it hard to get my head around my limitations. They are not what you expect at 28! Win - you are right it is still early days. I do always try to tell myself that and look back and see how far I have come. When I was in hospital I failed my first set of discharge tests as I couldn't dress myself or do anything and now I am at home and able to look to going back into work. I just need to have some patience! xx

I was wondering if anyone had any advice or personal experience to offer in this area…. As a quick recap – I had an NASAH at the end of January this year either during or immediately after heart surgery. I have no memory from this time as I went into a coma and was put in life support. I was transferred to another hospital to have an EVD fitted and then later on a VP shunt when my hydrocephalus did not right itself. I have no memory from this time and didn’t start to retain any memories until the very end of my hospital stay. I came out of hospital at the end of February into full-time care and began my road to recovery. From subsequent appointments and discussions with my specialist I have found out that my SAH was a grade 4/5 due to the amount of bleeding and my presentation at the hospital. As a result of this I have been left with a few on-going issues – this includes cognitive issues (reduced speed of thought processing, executive dysfunction and attentional memory issues), fatigue and also some mobility issues (mainly balance, precise movement with my lower limbs and processing where objects are in relation to myself – I walk into things most days and walking in crowds is a disaster!). From what I understand these are all fairly standard post-SAH and are not unexpected given the severity of the bleed I had. I am fortunate enough to live near to a specialist brain injury rehabilitation service. I was referred to this when I was discharged from hospital and assessed by them in May. I began my programme of rehab with them in June and am still going to it now. I see an occupational therapist and have also had sessions with a physiotherapist. My physiotherapist has assessed my movement and determined that I have issues with movement in my legs (upper body movement is fine). This makes walking long distances difficult and precise movements hard. Generally speaking I have made quite a good recovery. With my rehab support I have started going back into work, not actually teaching but doing admin and other tasks in order to build up my stamina. The plan is to start a phased return in January where I will begin teaching again and building up my hours and duties. At the moment I am going into work two half-days a week and then doing rehab on one day. I usually try to do something else on one of my ‘days off’ as per my OT advice – such as getting a bus to see a friend. I am also doing more around the house in terms of cleaning/cooking etc. The thing is that my physical movement and balance actually seems to be getting worse. I am limping most days now and my balance is often off. Friends/relatives have also noticed this as well. I am not quite sure what the reason is for this. It could be a physical manifestation of fatigue as I have noticed that it is worse the more fatigued I am (when I am very fatigued I even putting on my shoes is a struggle). My OT has also suggested that as I make gains cognitively I may get worse physically as my brain simply doesn’t do everything it used to. It is also possible that it is connected to my hydrocephalus – potentially my shunt could need adjusting, though I would imagine the symptoms would be more severe if that was the case. I have spoken to my specialist and have an appointment to see them in the coming weeks so am covered from the medical point of view. I am not looking for any medical advice but more wondering if anyone else had experienced anything similar in their recovery. I know every recovery is different but had anyone had their balance/movement etc. get worse or noticed it varying in connection to their fatigue? Any advice or shared experiences would be appreciated!

Hello Dawn, That is very useful to know - thank you for sharing. Did you get in touch with them via your local job centre? Gemma

Hello Dave and welcome to BTG. Glad you have found the site. I think it is quite normal to feel emotional after an SAH. I had mine back in January and since I came out of hospital I have had periods where I have cried for no reason - it has got better over time though. I have been in rehab since May to deal with the issues I have been left with and one of the people I saw said that feeling emotional was quite normal - part of it is a reaction to the traumatic event that has occurred and part of it is chemical due to what has happened to your brain, therefore it is both psychological and physiological. If you are unsure about anything though then do go and see your GP. In terms of work - when I was discharged my family was told by the neurosurgeon that they were not sure if I would be able to return to my previous profession (as a teacher) and that I would not be able to attempt it until September at the earliest. As I have said I have been in rehab for the past few months and have just started going into work with my OT to do assessments and get ready for me to start a phased return. When I first left the hospital I thought that time-scale I was given was ridiculous and that I would be back at work much sooner than that but now I can see that I needed that time to recover. Take the time you need to recover and look after yourself. Gemma

Daffodil - That is reassuring to know so thank you for sharing - hopefully with some prodding I will get a result sometime soon!

Hi Clare, I am also experiencing similar issues with getting my license back. I had an EVD at the end of Jan, but then also had a shunt fitted in Feb, My 6 month ban was up in August from the date I had the shunt fitted. Like you I reapplied for my licence at the end of May and was told the DVLA had got in touch with my hospital. Last week I received another letter from the DVLA to say that my consultant still haven't got in touch with them so they have written to them again. I have also got in touch with the hospital to try and move things along. The DVLA have said it will take them a number of weeks to decide even once they have the information. I imagine I will be asked to go and sit a test as I have been left with residual physical and cognitive issues. My OT at my rehab centre has said it will be at a specialist disability driving centre and if the DVLA request it they have to pay the fee for it (which is around £50). You can ask to do the test yourself, but then you have to pay the fee. The test involves sitting in a simulator to check your reaction speeds and then a practical test. I am concerned about sitting the test as I know my thought speed is greatly reduced (I sat an assessment at my rehab only yesterday and came in the 'severely impaired' category for speed) but I can understand why it might be necessary. I live in a hamlet with no public transport so if I can no longer drive we will have to look at moving to a larger settlement. If you have been left with no residual problems hopefully it will just be a matter for waiting it out for the DVLA to get everything in order and to get your license back - the wait is very frustrating though! If you are a bit nervous about driving again you could potentially have some lessons or have someone sit in with you at first. Hopefully it is just like riding a bike and will all come back! Well done to hubby for the promise of a new car I actually bought a car two weeks before I had my SAH which now sits outside unless my husband takes it out. Gemma xx

Hi Claudette and welcome to BTG. You have been through a very scary time and that takes it toll - both emotionally and psychologically. It takes a long time to get your head around what has happened and what might have been. It can also be tough dealing with the changes that can come following the SAH. I had my SAH in January (of which I have no memory as I went into a coma and ended up on life support) and also ended up with hydrocephalus and a shunt. When I first came out of hospital I felt completely shell-shocked and began the process of dealing with what had happened and what changes had taken place. I am now 9 months down the line and over the course of that time I have experienced a whole range of emotions. I too have felt isolated at points - as much as people are understanding and sympathetic it can be difficult for them to understand how life changing something like this can be. I found that coming on here and reading other people's experiences and advice very useful in helping with that. I was also very fortunate to go to a SAH support group at the hospital where I was treated (The National Hospital for Neurology and Neurosurgery in London) which allowed me to meet others who had had an SAH face to face. That definitely helped me feel less isolated. You could see if where you were treated or another local hospital runs anything similar? Good luck with your continued recovery Gemma x

Hi Daffodil, A very interesting post that I think sums up how many of us feel a lot of the time. Thank you for sharing as it is interesting to hear your perspective as someone a few years down the line who has useful advice and reflections to offer. The sudden change in activity level after a SAH is a hard one to take. I am still adjusting for it now and trying to accept that I am still in the early stage of my recovery, 9 months down the line. I find it hard to take that I constantly have to weigh up my options and decide on what I really want to do, rather than do everything I want. Having gone from a full-time demanding job and an active social life I am still off work and partaking in a year long rehab programme. Whilst I know I am VERY fortunate to have access to this level of rehab to assist me with my return to life and work, it also makes the changes hit home on a weekly basis as I am confronted with the evidence of more things that have changed and have to be worked around. I also find the unknown aspect of the future a difficult one to come to terms with. At the moment I am going into work on a 'therapeutic' basis (so still on my sick note and not actually doing any contractual work) whilst also going to rehab with a plan to start a phased return in January, which will be a whole year since my SAH. I do not know the extent to which I will be able to return to my previous job and might have to accept part-time or something similar, which is not what I expected at 28. It is encouraging to come on here and hear other people's experiences and successes in returning to work and I guess time will tell on what I can achieve. I particularly find your comments on never getting full back to full battery very interesting. I completed a fatigue diary as part of my rehab and found the same thing. No matter how little I had done, how much I had paced and slept I am never back to a 'full battery'. I guess it is just a matter of trying to manage it as best as possible. Thank you again for sharing your thoughts and insights. Gemma xx

Hi Andrea, I also wear a medical alert bracelet which details my heart condition, SAH and hydrocephalus. I also have a medical card in my purse with more details on it including my specialist's information and the fact I have an untreated aneurysm and shunt. I don't think it is overkill at all - I know it makes my husband more comfortable about me going out and about and is also reassuring for me as well. Unfortunately you never know what might happen and if something does and you are unable to communicate it will be useful for people to have that information. Gemma

Hi Clare, Yes it is annoying - I also reapplied at the end of May thinking I was doing it quite early on and that I would hear back quite quickly. With what I know now I should have done it even earlier! Hopefully you will hear from the DVLA soon. Gemma xx

Hi Clare, Glad to see that you are getting somewhere with work. I hope that the new hours work out well for you and give you the work-life balance you are looking for. Let us know how they go. I am also still banned from driving, which is quite annoying as I live in an area with no public transport so when my husband is at work I am stuck at home. I also had an EVD but then later had a shunt fitted so my ban is actually 6 months from the date I had that done. By my calculations that should have been up in August but I am still waiting for the DVLA to make their decision. They have also told me that it could be a number of weeks before they do make a decision. Unfortunately I do not have much advice to offer - only sympathy! The only thing I can suggest is that you offer to sit a hazard perception test to show that your reactions have not been affected at all. The rehab centre I go to has said I might need to sit one to get my license back. The DVLA can request it themselves or you can sit one before they ask and pass on the result. Apparently it costs around £50 to do but if the DVLA request it then they have to pay. My husband and I decided that we would wait and see what the DVLA said before paying for anything that I might not need to actually do. Maybe you could contact the DVLA and see if they do want anything like that as evidence? Good luck with it all! Gemma xx

Hi Daff, Yes I have been very lucky with the level of support I have received. I literally have no idea how I would return to work without it. Everyone who has an SAH should have this help in returning to work - but I guess it is a postcode lottery on what help you get. Like you I attended the SAH workshop at the NHNN in London, which was useful in helping me get to grips with all the cognitive changes. The one-to-one support from the OT has also helped me work around my issues. I am lucky that at the moment my work place seems happy to take the advice of my OT and work with me to return. I find the uncertainty the most difficult thing to contend with. I had my work assessment on this Monday just gone where my line manager and OT watched me teach a lesson (the first in 8 months!) and I did ok on that so I know I can do the job, it is now just a matter of building it up and working out exactly how much of it I can do. Time will tell I guess.