ClareM

Hi Graham you are not a fraud. I think it is very easy for us to think that after suffering an NASAH. We look fine from the outside function relatively well and seem back to our old selves. But we know that's not the case. The neuro psychology testing will be beneficial for you I am sure. Although mine showed that I had no actual deficits it showed that I had suffered subtle changes which had to be accounted for in my work place. Occupational Health have said that theses changes should be treated as a disability and I have to be treated as such. Not saying I am disabled but saying allowances have to be made for me. I'm 21 months down the line and still have bad days. I know when enough is enough and I when I have to stop and rest. I'm sure some people think that I 'play on it' but the people I know best know that's not true. Terrible memory, balance issues and fatigue still plague me. Dafs is right in everything she says. Take someone with you if you can. You may find the initial consultation is just that and that you have to go back over several sessions for the actual testing. And it will be testing, but it will prove that you are NOT a fraud. Kepp us posted. Clare xx

Hi I had a lot if pain in my legs with shooting pains. It was worst when I was in hospital but I was there for 2 weeks. I was told it was the blood dissipating down the spine. However you need to get it checked out. Sounds like it was a pity you were not seen in a specialist neuro unit. Clare xx

Hi you are very early days and it will be sometime before you can gauge what your normal will be. I still struggle with balance occasionally but it's much bettter than it was. Take your time, rest and drink plenty of water. You'll find your new normal in time. Clare xx

Hi Verna Its normal to miss your old self. Things do get better , and you will learn to embrace the 'new normal'. I am 20 months down the line and can say I think I have forgotten my old self now. I know my memory is not perfect and I have learnt how to deal with that. I still get tired and grumpy but it is better than last year. You are still fairly early down the line so have hope, things do get better. Clare xx

Hi Gemma Glad to hear all went to plan yesterday and that they didn't find an AVM. It will be interesting to hear what the Neurosurgeon says, I would love to know what caused my NASAH but like you probably never will. Hope you enjoyed your afternoon nap today and make sure you relax the rest of this week . Clare xx

Hi I suspect that your last comment is correct. I met a lady from Dorchester when I was at Wessex. She had to travel to Southampton for all her scans. However it's always worth asking the question of the hospital. I live in Portsmouth which has a huge 'super hospital' but still had to return to Wessex for my MRI. Good luck Clare xx

Hi the pain will lessen after time. The pain relief needs to be constant, I know I was constantly being fed drugs whilst in hospital. I don't remember much about my first 2 weeks post bleed but do remember pain and a lot of vomiting. My bleed had no cause either. I presume your brother is still in hospital, if so make sure you talk to the nursing staff and doctors about the amount of pain your brother is in. Hope things improve soon. Clare xx

Yes Greg very interesting and apt post. I can relate to much of that. Clare xx

Hi Debs While reading your posts I almost cried, my heart goes out to you. To be dealing with your own recovery post SAH and a daughter with problems such as yours has must be such hard work. There is no way I could have dealt with that, I could barely look after myself for the first few months and relied so much on my husband and family. I think you need to try and get some help, for you, not your daughter, I can't believe that with all the outside agencies you have involved with your daughter that no one has thought about you. I think the key person to this has to be your husband. He can't bury his head in the sand and leave you to cope with it all, that's just not on with all you have been through. Can you not sit down with him and explain what you have been through and how are feeling? You are different now and you may never be the person you were - I know I'm not and never will be. But you need to embrace the new normal and make allowances accordingly. Maybe you need to get back to that Saturday routine, if only to give yourself a break. You don't need to shop or do anything else that assaults your brain. Maybe just a gentle walk and coffee away from home, just enough to get you out and away from all that stress. Please try and make some changes, it will be hard but I am sure worthwhile. In the meantime just keep coming back to BTG, we're all here for you. Clare xx

Will be thinking of you Jan,. Hope it goes ok. As Super says it may be a good time at 2.30 as you will not be at your best. Sure John will support you well. clare xx

Thats funny Chris, I run past the place I had my thunderclap headache nearly every week too. It is near where my jogging club meet and actually outside a Porsche garage! I reckon it was seeing the price of those cars that set me off lol! Glad you've had a good day, keep running. Clare xx

Happy NASAH Chris, hope you are enjoying your day and maybe throwing in a short run? Well done on such a great recovery and thanks for sharing with us. Clare xx

Hi Jac, Don't know about superwoman, more like mad woman! I know what you mean about a day at work though. I have had one of those busy stressful days today and am good for nothing this evening. In fact most evenings I just lay on the sofa resting my head, surfing and watching TV - that's when it's not a running night I could feel my head getting woollier and woollier at work this afternoon and was glad when home time came. I need to learn to take time out when I feel like that but it's difficult when you are working as a team and want to get the work done. They never found a reason for my bleed but the hydrocephalus did resolve so I didn't need a shunt. I just have the tell tale EVD dent in my temple, I think of it as my battle scar! So glad you are making plans for next year, be something to look forward to. My husband was very supportive and still is though I think he gets a bit fed up with me constantly saying I am tired. My daughter has just moved to London and wants me to go and visit next weekend. I will go (by train) but I can't say I am really looking forward to it as after my working week (only 4 days) all I want to do is relax. Don't feel a fraud being at home, use it as time to relax gather yourself. I phased back over a long period and now have Weds off as my recuperation day. I haven't had to have anytime off since but if I felt ill enough I would, life's to short to be a martyr for work. Hope things continue to improve for you. Clare xx

Hi Jac You had your sah just before me, mine was 10 Feb 2105. It was a NASAH with hydrocephallus and an EVD so no driving for a while. Sounds like you had a nightmare getting the diagnosis, just goes to show how wrong medics can be sometimes. I too like a wine but can't drink much now without becoming a total amnesiac. My husband always has to remind me the next day that I've already told him stuff and I really can't remember conversations I have had too. I find if I drink lager it's not so bad. Sometimes it really is just best to give in and take time for yourself. Hope this week gives you time to recharge your batteries and rest. The fatigue is one of those things that unless you have suffered from a sah is difficult to comprehend. I say to my husband I am not physically tired but exhausted mentally which does actually spill over to the physical side too. Yesterday I ran 8 miles with a friend (we are in training for the Great South Run) it was a great run and I could have gone further and I was not too tired after. I spend 2 hours at work checking (I am a pharmacy tech) and it floors me. I have to take a break and be quiet for a while. It just shows that it's stuff that needs the brain that causes the fatigue. Sounds like you have had a very hard last 20 months. Hope things are settling on the personal side now and that stress levels are coming down. There is no doubt that coping with stress post sah can be very difficult, I try and avoid it now - anything for an easy life! Take the time for yourself this week and relax. Be good to hear more from you. Clare xx

Hi Katy Welcome to BTG. Your story sounds so similar to mine, it actually sent shivers up my spine! I Like you I was running when I had my NASAH in Feb 2015. I had hydrocephalus and had to have an EVD but no other surgery or long term problems. I started running again about 3 months after my bleed. I joined a Couch to 5k group so my re-introduction was slow and controlled, It's a 9 week programme and I did my 5k in July 2015 about 6 months after the SAH. I have continued running - with a group now, my husband is not keen on me running solo - and now do about 6 miles twice a week with a few shorter runs thrown in if I have the time. It's the one thing I can do without the dreaded fatigue setting in. I don't need to use my brain to run, just my feet and consequently I can have a really busy, brain draining day at work and then run for 6 miles and actually feel refreshed. Bizarre but true! The feelings you have had over the last couple of months sound very similar to mine and a lot of other people who have suffered a sah. Head and neck problems are common but have a chat with your gp if they persist. I only saw my gp yesterday about pain in my neck and am having an x-ray to rule out anything sinister. It's more likely to be muscular so I am having physio referral too. Foggy feelings and not sure of the words, I know that too. Sometimes it takes me ages to remember what I wanted to say. I hate it when people say 'It's our age, I do that all the time'. For the record. It's not my age it's because I had a SAH and I am working on strategies to help me. But what I need now is not people telling me they do the same thing but people helping me with reminding me what I have forgotten lol! ( And for the record the younger people at work are a lot better at doing that than the older ones!), And yes I think we all suffer from a bit of post traumatic stress but that doesn't mitigate the feelings of worry. Re-bleeds are extemely rare but they have been known to happen. Drink plenty of water, take return to work slowly and always take a phone when running! Good luck, be glad to hear more from you. Clare xx

Hi Chris Your memory sounds just like mine. I couldn't find my sock the other day, searched high and low only to find I had already put it on! It seems to be the 'immediate' memory we often have a problem with. I have discussed this with my neuro psychologist and she is going to give me some strategies to deal with that when I next see her. I find repeating things helps, like if I know I have to remember something I keep repeating it either out loud or in my head as soon as I know I must not forget. Sounds daft but does work. Take it easy and enjoy those dog walks. I remember my first one with my dog after my bleed, he was so good, it was almost like he knew he had to take care of me. Clare xx

Chris not much I can add except be kind to yourself. This is such a life changing event and I don't think you realise at your early stage how momentous it is. The memory problems may improve but you may be left with some more long term deficits. It is something I am coming to terms with and using new strategies to help with. Embrace the new normal and don't push too hard against the fatigue - it will always win! Keep coming back to BTG as it's one place you won't receive inane comments such as those from your neurologist. ? Clare xx

Hi Brian, when I was told I would have 3 months minimum off work I thought - what? 3 months, I won't need that and what will I do with all that time? I had never been off sick for more than a couple of days at a time, I didn't do sick leave! But I DID need 3 months, in fact I would have liked more but I only got paid for 3 months so back to work I went on a very slow phased return. If like me you are used to being busy and working full time it can be difficult accepting that amount of time off but strangely you do get used to it and actually quite enjoy the slow down with life. I ended up returning to work on reduced hours, I don't think I could work 5 days on the trot now - I'd be floored. I was told in hospital that I would not drive for at least 6 months due to the EVD. Didn't find that too bad, luckily my husband and children drive so they ferried me around. I didn't actually drive for 10 months due to DVLA delays but I got a free bus pass so got used to public transport. I am now actually considering giving up my car as I don't use it much and know how fairly reliable public transport is - I live in a city with good transport. Everyone is different and I am not sure if a small bleed makes that much difference. There are certainly people on BTG who seem to have suffered more than others. I do think in the early days it is easy to think ' I'm ok, I can do that' but the reality then sets in when you find you can't do that and all you are really good at is sitting, staring and sleeping! Take the advice of the medics and really take the time going back to work. Ok you may not need 3 months but don't rush back and when you do go make sure it is on a phased basis. Be good to keep up with you and your recovery, keep posting. Clare xx

Hi Brian welcome to BTG, another Wessex survivor. You sound remakably well for just over a week. Yes it is a life changing event, certainly changed mine. Hope you get home on Monday and continue to make a good recovery. Make sure you get plenty of rest and drink plenty of water, it really does help with the headaches.Look forward to hearing more from you. Clare x

Visual reminders are best for me too. Like Karen I leave stuff on the kitchen side to remind me. Unfortunately I have a tidy freak husband who keeps putting things away. He's getting better but I do have to tell him - leave it there it's to remind me! Yesterday I put my sock on and then spent 5 mins looking for the other one only to find it on my foot. It's funny how the short term memory is so short sometimes. Mum is lucky to have such a caring son around. Keep up the good work I am sure she appreciates it. Clare xx

Well I have finally got around to updating this post after receiving the written results of my neuro-psych testing. As predicted by the psychologist the testing did not show any major deficits. However there have been changes to the my ability to recall visual and verbal non contextual (list format) information. These results are congruent with the difficulties I reported to the psychologist. The psychologist said I had not done myself any favours by changing jobs after the hemorrhage as the way I now learn has changed. When I returned to my original place of work I slotted back in well and did not find any real problems other than fatigue, this is fairly normal as the work I was doing was ingrained. However by changing my job and having to take on a lot of new learning I am having to learn new strategies to deal with that. Where as before I could learn things easily now I need more time and have to keep repeating to make sure it 'sticks'. I agree with this as repetition does seem to be only way for me to learn new stuff nowadays. The report states that the changes represent a slight decline in my abilities which I am probably more self conscious of and in the process of adjusting to. They are unlikely to be noticed by new work colleagues, only being recognised by family and close friends. The report states that it is crucial that on-going fatigue is managed as it is likely to impact on my ability to concentrate and emotionally cope. I should avoid performing the same high intensity tasks for long periods.That being the case my senior boss has decided to refer me (with my permission) to Occupational Health within my workplace. I spoke to my neuro psychologist about this and she seemed to think it was a good idea as it will protect me against any unreasonable demands within the work place. I have now started my checking reaccreditation and with the help of my training manager have drawn up a plan to enable me to complete this with not too much pressure. She has been really helpful and told me not to push myself to do more than the plan as she doesn't want me to fail. So far so good and I am feeling more confident that I can succeed. Hopefully in the next 2 weeks I will be done and working in the role I was employed for. I have a review appointment with my neuro psych at the end of this month so hopefully will be able to tell her how I am getting on. Also should have seen Occ Health by then and can make sure proper guidlines are drawn up re my hours working on intense concentration actitivies. All in all this has been a really positive experience and I am so glad I was given the opportunity to do the tests. It has shown me where my difficulties are and how to deal with them. It has also rattified what I was feeling in the way of fatigue, that it is still ongoing and may be for some time. It's not JUST me getting older! Clare xx

Hi there interesting symptoms. I was so dopey after my nasah the restlessness did not kick I until I was a good few months down the line. I can understand the anxiety, you always wonder with the slightest twinge whether it's happening again even though you know it's highly unlikely. Maybe he needs some form of distraction, get out and do some gentle walks or maybe some projects around the home. As Jess says a trip to your gp maybe a good idea. Hope things improve soon clare xx

Hi Georgia gal You have come to the right place for sharing and answers. Sounds like you have had a hard time of it but are getting there. It takes time, a lot of time, much more than you expect. But you will feel better eventually, you are still early days and also adjusting to your new drug therapy which will take time. I'm now 19 months down the line and only just now feeling more positive about everything. I have learnt how to deal with the fatigue and darned memory problems but still feel I have a way to go till I perfect that! It's so easy to think 'yes I am fine, I can do that, no problem'. Then the realisation that maybe it's not that simple. But failure doesn't need to be just that, it can be a lesson on how to do it better next time. I hope you continue to feel good and that life returns to near normality. It will take time and you will learn a new normal but you will get there. Clare xx

Ditto Chris very well said. I have never really thought about it feeling like a dream but totally get that and have that too. Its early days, the memory does recover but to what level depends on the individual. As Daf says and like her, if you didn't know I had had an SAH you would not think I had any problems. It's the loved ones close to you who recognise that fact. Just take each day at a time, you'll both get there and eventually recognise the new normal. Clare xx

Hi Suzy Ditto all Gemma says. I too had an evd but was lucky not to need a shunt. Do you have the tell tale evd dent in your right temple? I'm 18 months post bleed now and back working albeit in a new place of work - the hospital I was taken to when I had my nasah. Like Gemma I work 4 days with Wednesdays off, it works well for me having a break mid-week. I was not given a cause for my bleed, just an unfortunate event. Sometimes I wish I could be told why it happened then I would not worry about it happening again. I am lucky that my after effects are minimal, in fact if I didn't say, people would not know I had had a haemorrhage. But I KNOW. My memory is not as it was and I still get easily tired, but I am coping and enjoying life. I have days when I wish it had not happened to me but they are few and far between now. You are early days, things will get better. Just don't rush back to work, I wish I had taken longer but I was only paid for 3 months. And when you do go back make sure everyone knows you will get tired and will need breaks, teaching is a hard job so be kind to yourself. I agree with Gemma that although friends and family are great, it takes another survivor to truly understand how you feel. Keep coming back to BTG there is always someone here who will listen. Take care Clare xx