Greg 21.01.15

I would agree with Daff, I'm ~18 months down the line, and right now things are feeling tougher than last year. Maybe for slightly different reasons to Gemma, but I guess by now I kind of thought some of the issues that I had 6 months back might have started to ease, I'd be doing better with my phased return to work, the fatigue would be slightly more under control etc. etc. I guess this is the time where, at least for me, there is the learning to accept this is the new normal, and learn how to better manage life to make the most of everything. With my positive hat on for today , one door may close, but another one opens, I'm not a big believer in fate or destiny (apologies to those that are), but right now this is what I have got, so "blow it" time to get on with it, and see where I land up! Happy Tuesday folks! greg

Hi Jan I get the feeling besides some understandable variation due to severity of bleed, there is quite a degree of regional variation. Addenbrookes where I was treated seemed to be going through a bit of a hiatus in terms of linking neuro patients to the appropriate follow up support services. All the things we got we had to either fight for or arrange ourselves, we weren't even told about Headway. I was discharged kind of assuming that within a few months that more or less things would be back to normal as no one said otherwise. Things that we accessed for support and testing included a local GP based neuro community support team, BUPA for neuro psych testing (I have this through work), and eventually the NHS neuro psych. Separate to all of this I have been working with an OT from Headway, who is an absolute star and life saver for me. I managed to get the NHS neuro psych testing by getting this arranged through my consultant, and as I mentioned further up the post, for me, this was really helpful, and helps my OT understand which areas we need to work on. Good luck, persist till to get the support you feel you need. Knowledge is power, an old and obvious quote, but so true, All the best Greg.

Clare Glad that the testing is going well, and they are being really considerate in the way they are spreading it out for you. You make a really good point, very few of us will have undertaken these test pre our SAH so a true baseline comparison is really hard to make. I don't quite understand how, but there is part of the tests that apparently allows them to estimate a calibration point to give a good indication of where you were generally pre SAH ,so that you can get an idea of the degree of impact. (I'm not sure if this is for all or just certain parts of the tests, it wasn't explained to me very clearly). Sorry to hear last week wasn't good, it can be a bit of a roller coaster ride at times, good luck with the rest of the tests, let us all know how you get on. All the best greg

I had a session with my OT from Headway last week, and she left some information sheets with me, one of which was on executive skills. Often impacted post SAH due to the impact on our frontal lobes. Anyway, one bit that I thought was particularly interesting was the bit I quote below as it pertains to formal tests: "Hidden problems more noticeable in unstructured situations. Problems with executive skills tend to show themselves in unstructured situations. Therefore the problems are not easily observed in formal tests, which provide a structure. The problems appear variable, since the complexity, novelty and around of structure provided in any given task also varies with the situation" Neuropsych testing looks at a whole spectrum of different cognitive functions, and executive skills is just one part of it, so I'm not discounting the huge value of the testing (and as Kris highlights at an appropriate time in one's recovery), but for some of the more subtle issues with executive skills things aren't always as straight forward as test results my suggest. For me, it helps explain why some tests have me as OK, but some day to day and especially work related activities really do my head in! Hope folks find this helpful Happy Tuesday! greg

Clare, First off well done for getting the appointment, I had to fight so hard to get mine within the NHS and also resorted to having a private one through my work BUPA scheme. My NHS one was by the far the better, and the neuropsychologist was kind enough to stay late and based on her initial reading of my results gave me some very helpful advice which included the first sensible indication of timelines for recovery/progress that I had been clearly given. I did the full three hour session (with several breaks), and boy or boy was I shattered, couldn't of thought of doing anything cognitively challenging afterwards, so not surprised you were more than a bit fatigued afterwards. As said by folks above, any knowledge you can get about where your cognitive blips are can only but help you deal with them. A good Neuro OT will be able to help you take the results and develop strategies to help you deal with anything that the tests may (or may not) reveal. If you need such support after the tests and you can't get it through the NHS, I can't recommend enough Headway, for me they have been a lifeline ( I had my monthly F2F OT session today as it goes). And at the end of it all, I think referring back to Macca's point number 7 is a very good place to start. All the best for the follow up appointments, I did really find these tests useful though as you found rather tiring to go through. Take care Greg

Hi Sherry, I also had an NASAH, same as you, and we asked the same question of my consultant, and his attitude was that my risk of having a second one, is baseline i.e. no greater chance than anyone else in the population. Giving up the cigs is one of the best things you could have done to reduce risk of reoccurrence or of having other vascular/heart issues, so well done, keep it up. Everyone fights this little demon in their own way. I took onboard what my doctors said and reckon that's very little I can do about it apart from trying to be reasonably healthy in what I do and eat, so I try not to give it too much thought beyond that. I'm 17 months out from my NASAH, and I have my ups and downs about this, but if I have learnt one thing from this malarky, we've got one life, and we all here on BTG are grateful to have held on to it through it all, so I am going got enjoy it (with the occasional blip, you can't help it!). Good luck, and as you've found, this is a great place to come for support to share the good and the not so good. Greg

HI Bronco, mine was low 45 ish bp resting (I assume from training quite heavily) pre SAH and post SAH still seems quite low. I know while I was in hospital my HR and blood pressure were a bit low at times for them to give me Nimodipine, so I used to lay there and waggle my legs up and down to boost HR and blood pressure, oh the joy!

Thanks Iola and Gemma for you posts, sorry don't seem to be getting update alerts from any posts at the mo.... Iola, I'm kind of with you, year 1 wasn't so awful for me as I don't think I really understood the impact the SAH had really had on me. Year 2 now, yep, you are right, spot on, frustration, so hopefully year three I will follow you in to more positivity. Congrats on your three anni, and thanks for sharing, as Win said it gives us newbies a bit of heart. Gemma, I am working on a similar principle, that given some time to settle into the new routines of more hours, so long as it isn't too much of an increase I should be able to adjust to it. I think what I still keep on forgetting (there goes those memory problems again ) is that it takes longer than your think to build up the stamina! So good luck with your move to four days, hope this week is going better and all went OK with your hospital appointments last weekend.

Hi Kerry, As with other folks the deficits, problems whatever you wish to call them you have are very similar to what I have. I think Colleen's question to you is a good one. How tired are you? Have you started do more recently? Or having such good rest recently (and nights sleep worrying about things?) I know that when I do more I fatigue more, and then the memory and the word searching gets worse. If I try to sit down when fatigue to work at the computer, oh my god you would think I was typing in a foreign language. At times the word searching can be funny, at other times so frustrating. My mood is something that until the last few month was relatively even (I'm 15 months out now post SAH) and now that I am trying to do more, do more work, try to drive a bit, if I do too much, I fatigue and I become a right grumpy *** My wife can spot it a mile off and knows when I have done too much and we have to chill for a bit. Good luck with it all, if you can try to pace things, and get some quality rest time, not always easy, but might just help greg. P.s. I recall standing in a sandwich bar ;last year trying to order a sandwich and I wanted to say leave out the cucumber, but could I remember cucumber for the life of me, no. I had to go into a full description long green thing, chopped up, and eventually the person got what I went, that was one of the funnier moments. The other day I saw a Giraffe on a hoarding poster, and I thought ****** what are those things called, took me two hours, but I got there eventually! Fun times!

Gemma, I think our OT's have been doing very similar things with us. I went through the same exercise, looking at what triggers fatigue and what activities help keep it at bay. Yes total cognitive breaks, I have been trying everything from walking around the block by myself, to breathing exercises, basically anything to distract my brain and give it a rest. It does help especially when at work, I'm the same I can't check in emails as a break from work, I can't sit and have coffee with the team to have a break, both especially the talking really gives me fatigue issues, the head starts spinning, and the aphasia kicks in. We have a quiet meditation room at work, but I've yet managed to find it unoccupied, shame as this should provide a nice haven from the hubbub of the office. The other thing I have bought myself are a pair of noise cancelling headphones so that when I'm at my desk I can keep distraction noise at bay, seems to be work quite well. With my phased return I need to be patient, but at the moment there isn't much room to do much too it, I am effectively doing 2.5 hours one morning a week at work, and 2.5 hours later in the week at home, all with carefully planned out breaks etc. I was doing two mornings at home, one at work but that was too much fatigue was just accumulating badly. Just hoping I can stabilise the fatigue with the two session a week, build up a routine, and then when conformable look at how I can start increasing it. Some clever thinking will be required to beat the fatigue. As you said Gemma, I need to be open to different solutions. Gemma good luck with the teaching, I can't imagine a scenario more hostile to my fatigue than a class full of kids of any age right now! Sounds like you are making some good progress into finding a work pattern that works, I hope it continues in the right direction, good luck with those 4 day weeks. And I'm glad that work are supportive, it makes so much difference. I worked this morning at home and had my weekly 30 min training session with an instructor, and I am still standing, tired but in one piece so not a bad day! Cheers greg

Thank you all, Clare, Win, Gilly, Momo, Paul and Daff, I appreciate all your wise words. A good reminder that I need to stop thinking about things in such a black and white way, and have a little more patience. Daff, I will have a read of the spoon theory post, I haven't read it yet, but will do. You mention pacing, and perhaps that's what I am not doing very well at the moment. I had it reasonably well sorted for a while but I know I underestimated hugely the impact of even a small passed return would have on me. So perhaps a little bit of a reevaluation of what is feasible to do in the periods when I am not work (which is most of the the time right now!) would be a good idea. Clare, as you said it's so hard for those around you to appreciate what the fatigue is like, in part because it is hard to explain. I'm pleased for you that you can still run, one thing I found out the hard way is that it is exercise or work, not both on the same day, both together really spells trouble for me! Shame really as there was nothing nicer than sweating out the rigours of a hard day at work on the bike or down the gym. But time to come up with new habits, forward! As everyone said, I should ignore the timescales, they do only serve to disappoint. I guess my uncertainty with where things go with work, makes me look where I am post SAH time wise, to see what is the likely outcome. Work aren't leaning on me yet, and hopefully they will be patient for a while longer, but we will see. It's good and encouraging to hear all that folks are managing to achieve post their cerebral incidents (as I like to refer to me SAH). My original post did start off in the main as a point of interest re EVD's, infections and prognosis. Neurology as a field is something that lags so far behind so many other areas of human biology/medicine. Our abilities to analyse and treat, though improving, still have such a long way to go. It's an occupational hazard of mine to be curious about it, who knows perhaps there's a paper in there somewhere! Again, thank you all, hope you all got to enjoy the nice weather we had here in the UK today, it was glorious ( at least down this way!) Cheers!

Dear All, Just curios to see if anyone out there is BTG land had a similar experience to me with their NASAH with complications and whether they feel this has had any impact on their long term prognosis. To recap, I had an NASAH while at the gym, and after being picked up from the gym by my wife, I don't remember an awful lot else till I woke up in Neuro ICU 48 hours later with an external ventricular drain (EVD) poking out of my head (and a few other tubes as well....). After about 3 days and I was not long down on the general neuro ward, I got an infection, ventriculitis, introduced into my head via the EVD, which was the point when the doctors starting looking a little bit more concerned. Needless to say with rather large amounts of antibiotics administered IV and IT (direct via the EVD into my ventricular space) after about 2 weeks or so I was clear of the infection. Phew! Now I know we shouldn't cross compare, as wall our cases are different, but I am just curious if anyone else had similar complications and whether they received any particular information, feedback, cautions etc from medics as to the impact of such infections. At the time I was in hospital I did quiz my medics about this, and all they would say is that it wouldn't help things but that was about the extent of it. And maybe that is all that can be said, but I was curious to ask out there to see if anyone else had travelled a similar path so to speak. If I am honest part of the reason for asking about this is that my recovery is not progressing as I had hoped. I'm not daft (well not particularly) and appreciated from early on that I had a good chance of some permanent issues/impairments but I was then and am still now dam happy to be alive and kicking so can live with that. However, where I feel I am hitting my head (metaphorically) against a wall, is with fatigue. All the cognitive stuff works (more or less, there are some issues) but it doesn't work for very long at all. With the support of a neuro OT from Headway, I have been trying to get back to work, on a very gentle phased return, but even early on we had to knock back what were really quite modest hours. I was building up too much fatigue while working that I just didn't have time to recover from before the next round of work, and this was then impacting my general health. I am 15 months out post my SAH, and know that the window for making major improvements is closing. I am lucky work are being very supportive, I am lucky to have a great boss who I have worked for 16 years now, but I guess a point will come, they can't wait for ever, and that give me pause for thought. I know there are folks out there, that have really bad fatigue issues and keep a happy smiling face about it all (I have one particular person in mind), so I feel bad grumbling away about it. I guess I am just getting to the point where I have to start thinking about moderating my expectations, and learning to love the new state of play, but part of me wants to be able to explain a bit more why things are working out as they are (I'm a biologist research scientist I can't hope it!), hence my open question to folks about EVD's and infections. Right I have rambled on enough, I hope this doesn't get moderated down in size! Thanks in advance for all your thoughts on this. Cheers greg.

1. Headache at the back of my head / top of my neck while I was in the gym. (thought I had tweaked a nerve in my neck so carried on stretching and stuff to see if I could loosen it out) 2. Pain developed into the classic thunder clap headache and I knew something wasn't quite right. Went and found one of the gym instructors. 3. After about 5 minutes started throwing up a lot. Then felt a little better. Called my wife to come and pick me up. 4. Got home and the thunderclap headache got worse, nausea returned, all started to get a little hazy at this point. 5. As a lay on the bathroom floor, I have a recollection of thinking I haven't got meningitis (as my wife lifted up my t-shirt to check my skin), and can't be a stroke as I can raise both arms...... and then as far as I'm aware I'm out of it. That took about 90 minutes from start to finish. Apparently I was communicative for a couple of more hours but that's all I remember till I come around in ICU with a lot of tubes sticking out of places they had no place to be! (I had an IVD) 6.

Hi Clare, This sounds all rather familiar. I am just a few weeks ahead of you, NASAH mid Jan 2015, and I have still to really balance what I do, and if I forget to moderate things it (fatigue) comes around and bites me hard. I've been on a trial phased return to work the last few weeks, two mornings at home and one in the office, and the first morning back was a Tuesday morning the same day I usually had my training session at the gym in the p.m. At the time the training session felt good, I like you used exercise to clear the cobwebs, and energise myself. Anyway, felt a bit tired after the session, but as the afternoon & evening wore on I felt worse and worse. The next day I felt really ill from it. I hadn't worked that morning really any longer than I had done previously and then trained, just a different environment (in the office) and that was enough. It took me two days to feel vaguely human again. I've moved my training session to a different day of now! Small changes to activities can make a such a difference to the onset of fatigue. I went out for a walk with a friend, not someone I know really well the other day, exercise wise it was easy, no challenge, but because I didn't know this guy and his friend so well, the concentration to make conversation for 90 minutes wiped me out for the rest of the weekend. I find it frustrating that I can't now separate the mental exercise from physical exercise because of the impact on fatigue. Pre SAH I had a far greater margin to train when mentally tired and to benefit from it. Nothing like training hard after a frustrating day at work. Now I am having to consider if there has been a mental workout during the day, then the exercise has to be lighter, a walk instead of getting on the turbo trainer etc etc. The fact that on a good day you can get out and put 6 miles down post SAH is superb, may be just not after a heavy day at work. I think we are learning similar lessons. Good luck Clare, and please send me any top tips, all grateful received!

Congratulations Daff on coming so far in four years, and thank you for sharing that, gives me encouragement, thank you.

Cool let me know if you do and what you think of it.

Not one of our normal posts but I thought this might interest some folks. The Welcome Collection in London (apologies to the non southerns/UK residents), has just opened a new exhibit entitled "States of mind: Tracing the edges of consciousness", see link: http://wellcomecollection.org/exhibitions/states-mind-tracing-edges-consciousness The bit I thought folks on here might find interesting, was that as part of this there is an installation entitled: 'The Whisper Heard', by Imogen Stidworthy, 4 February-24 April. The blurb on this is: "Contrasting the language acquisition of a young child with that of a stroke patient with aphasia - a condition which affects the language centres in the brain - 'The Whisper Heard' explores language, meaning and identity". I suffer with aphasia so was tempted to go along and see if I get the chance. http://wellcomecollection.org/visit-us/states-mind-installations There is also an open discussion with a guys with a traumatic brain injury during March. FYI the Welcome collection is near Kings Cross/Euston and which for anyone visiting the National Hospital for Neurology & Neurosurgery as I know some people on here do, it's about 1.5 miles from the hospital to the Welcome Collection. If you need any other encouragement it's free and the cafe does really nice cakes! (no I don't have a vested interest in it, it's just quite an interesting place!)

Claudette, being in south London, you shouldn't be too far from one of the good national centres for chronic pain management, I think it was Guys and St Thomas' that has a good department, sure your neuro nurse will know, let us know how you get on.

Hi Claudette, I'm one year out and I still get some form a headache every day, some days like today I hardly notice it others likely Friday I can't ignore it. As a lot of folks have stated, keeping really hydrated helps, some people find that changes in air pressure can cause the headaches to get worse. For me two things will definitely make them worse, one being tired / fatigued (either from bad sleep or doing too much) and second stress (such as going for a scan) will really set it off. They have got better over time, and if I behave myself don't get too carried away doing too much, and listen to my body when to take a break the worse excesses of headaches I can seem to avoid I was on three doses of ibuprofen and four dose of paracetamol a day for the first three months post SAH till the doctor found out and asked whether I was getting acid heartburn (Ibiprofen really isn't great on your digestive system long term), I can manage it with paracetamol but there are other things good for neuro pain that you can use long term that are more gentle on your system if you need to. As someone said above, don't martyr to it, see a chromic pain specialist if its really doing you in. My secret is avoid the stress, drink water and get out walking and get plenty of fresh air, seems to work most of the time! Good luck.

Claire, well done for getting through the past year, and for all you have achieved, and nice one for getting back into the running so well. I have had similar thoughts to you, that if I hadn't been training that night, or the type of training i was doing was different, could I have escaped it, would I be some where quite different now? And then I think it could have happened while I'd been travelling, often run when I'm away and depending on where I was the outcome could have been quite different for me, so I've come to the conclusion, it could have been a lot worse! Year one, down, well done, good luck with the new job, on with year 2, and think with all that you've achieved in one year, next year who knows!

Clare good luck for next week, will you mark it or ignore it? You've done amazingly in a year, particularly with getting a new job. The noise things is a pain. I'm similar to you Gemma I can listen to music for a bit but definitely have to be in the right frame of mind. We went to a show over Christmas (type of human circus / burlesque / comedy thing) and though I got through it OK is, the noise was too much and I was flattened for a couple of days afterwards with fatigue. At least it confirmed my decision to give away some tickets for a gig just prior to Christmas was the right thing to do, it would not have been a good idea. Good luck to both of you with your return to work. I'm talking to my boss tomorrow about the kind of work I might take on, and then next Tuesday I'm visiting work with my OT from Headway to talk about things in a bit more detail. Fingers crossed, wish me luck!

Gemma, A lot of what is describe is quite familiar. Long stints of "cognitively demanding tasks" just doesn't work so well for me any more. Gone is the approach where one head long ploughs through for hours on end, a little more thought and pacing is required. Re the noise, tell me about, I used to love music and never minded a decent hubbub when we went out, but now these have a real impact on me, especially if I am trying to hold a conversation over the noise. Divided attention, I am told is the activity your brain is doing at this point, and post SAH mine isn't quite so happy doing it! (lazy little......). One of the things I am trying to sort out to try to help with this is getting a pair of noise cancelling headphones. So I can knock down the noise when say on a train or a bus or when I get back to work to knock down background noise. When I find a pair that doesn't cost a fortune I'll tell you how I get on. I am going in to work next week for a meeting to discuss my phased return plans, joint visit with my OT from Headway, so fingers crossed work are happy with the initial plans! Good luck with your work, hope you find a balance of hours that works for you and the school. greg

Gemma, a belated congratulations on your 1 year anniversary. I am in awe that you are back teaching. A challenging job (and rewarding I'm sure) but not the easiest, even at the best of times, and post SAH and with all that your are still dealing with that is such stunning progress. Good luck with the DVLA, just pester, pester, and pester more, they will eventually get back to you. I hope if you have to have an assessment that it goes OK. If I am honest, I know that I can also loose my temper much quicker than I used to, and I'm still trying to work out why it is. I'm not sure that its directly down to the SAH, for now I assume it's the additional stress that it puts us under that shortens the fuse. I have started doing breathing exercises, to help recharge the mental batteries and smooth some of the rough edges on the bad days, it can help. By all you described you have come an amazing way in one year, and as I am being often told gains can be continued to made well past year and onwards, so good luck with all that your are still dealing with. All the best greg

Thank you all for your kind and as always thoughtful, thought provoking and supportive comments. Thank you for indulging me, it was quite cathartic to put some of what I felt into words. Gemma, good luck next week, and congratulations on starting the phased return, I really wish you all the best with that. Cheers for now g.

I couldn't make up my mind whether to post something to mark my "anniversary" but came to the conclusion that if I was giving it that much thought then I probably should. This time last year, I was just thinking about the last half an hour or so of work for the day, before closing the laptop and getting in the car to heading to the gym. Little did I know then that within 20 mins or so of being in the gym things were about to change quite so much. It is a cliche, but also true this last year has been such a journey for me (and for my family). In some respects I feel that the last year was probably going to seem easier than what is to come this year. For me, I will try at some point in the not too distant future to start a VERY gentle phased return to work, but I think everyone is realistic about this. It's hard even for those close to me to get the deficits I now have. I am lucky that the deficits aren't as obvious as they could be as they aren't that severe. Some of this lack of understanding I think in part is my fault. I haven't yet, and am still not quite prepared to change my mind set, tempered slightly for sure, but I am still want to seize life by the scruff of its neck and go for it. And in those quiet moments, when the fatigue is at bay I can feel just the way I used to, not invincible but full of energy and determination. That's what this SAH malarky has taken from me (just for now!). I would be foolish not to take the opportunity that this has also given me and not make the most of it. It might be a strange way to look at things, but sometimes having the pieces of life thrown up in the air and rearranging themselves, does (if in moderation) reinvigorate and allow us to re-evaluate life, something I know a lot of which is discussed here on BTG. I have been fortunate to have the support of some great people both here (so thank you all) and in my family, friends, work and support workers. Those that really matter and care come to the fore in our lives at times like these, and for them I am and will be eternally grateful for their love and support. Not my most positive of postings apologies, hopefully reflective more than maudlin (you are welcome to give me a metaphoric kick up the backside), but it fitted the day at hand. Again thank you all. Keep well.