adam

Hi All It's been a while since I've posted, but I've not been far, I suppose Christmas and family stuff has been taking precedence I'm now rapidly approaching my "Anny-Versary" and am frustrated still to be off work, for some reason I'm really dreading the 8th Jan, don't know why, it's not like it's about to happen again, it's just the whole thing keeps rattling round my head, I wish I could explain it to my wife, but the whole thing sounds stupid even to me! Anyway, enough about that, I wanted to let off some steam about my employer, I've been trying to sort out a back to work programme for some time now, unfortunately they are being somewhat less than helpful... How's this for an extract of an email "Our responsibilities do not extend to helping employees recover in the workplace. We have ample work that needs to be performed by you when you are fit and able to perform the work to the acceptable level of ability prior to your illness. Your doctor may very well have an input as to how many hours you can perform at this level. We would have to seek medical advice to understand how someone who is supposed to be fully fit and able to return to work is not able to obtain a fully functional driving license. However this would not preclude you from using public transport." I'm not sure how to respond to this one....If I'm not as good as new, I might as well join the scrap heap, and as for not understanding why I don't have a driving licence, well that's beyond me. Looks like I may be about to go down a disability discrimination route, that's the last thing I wanted after the last 12 months, wish I had an understanding and enlightened employer!!! Hope you are all well Take Care Adam

Hi Celia Well that taxed my schoolboy Latin, the best I could come up with was "that which is up"..only to see you had translated it for at the bottom..onwards and upwards... I like Carpe Diem...it summarises my post SAH attitude.... Anyway, welcome to BTG, I know you've been around a while, but it's nice to see your story! As everyone will say, it's early days yet, so don't sweat the foibles..or idiosyncracities as my wife calls them, they will get better, or you will learn to live with them. Look after yourself, be kind to yourself...after all, that which doesn't killl us, only makes us stronger. Best wishes Adam PS, I call the speeded up bit and loud noises you referred to "whizzy brain"..weird isn't it!!!

Hope the visit to the neurospyschologist goes well (did I spell that right)? My GP has just referred me back to see the neurologist for a counselling referral, my wife has been nagging me for ages. It would seem that I'm having difficulty getting to know the new me!!!! Seriously though, I'm sure it will be fine, he's there to help you, I hope it goes well and helps to solve some of the issues you are still having. Best Wishes Adam

Thanks All I appreciate all the comments made. As the saying goes, I'm between the devil and the deep blue sea, I know my immediate boss (the UK MD) will have a fit if I ask for my untaken holiday, however his boss (the parent company in Australia) I have a very good relationship with the HR director (I was Operations and HR Director for the UK) believes very strongly in doing the right thing! I'm not talking about accruing holiday whilst off sick here, the fact is, when I went off sick, I had 24 days accrued holiday leave, these have now been lost, I haven't taken them, and they haven't been carried over into the next holiday year. My point is that whereas I was paid my contractual sick pay for 3 months, almost 1 1/2 months of that could be construed as being taken as holiday. I fully appreciate your comments regarding "burning your bridges" however from the content of some of the emails I have had from my boss, I'm not sure he want's me back.. I already have an email from him that says "don't come back, until you have got your driving licence back" a clear breach of the disability discrimination act. It's a difficult choice, go up against my UK boss and hope the Australian parent company will support me, or take it on the chin and hope that in time I can get back to doing what I did well before my haemorrhage!!! On the other hand, does anyone know someone who needs a compliance/operations and HR director in the midlands........PS only slightly brain damaged, my wife calls it "quirky" Seriously though, what are peoples opinions, should I be trying to get last years untaken holiday paid or carried over, ie topping up my sick pay to what someone who had taken all their holidays would get, or should I just forget it... Answers on a postcard please Thanks Adam

Hi all You all seem to have more enlightened employers than I do I know my boss will "go ape" when I tell him of this, I can see why you didn't as you were on full pay, however I was only on full pay for 3 months and am now on half pay which is being funded by an insurance company. Anyway just thought I would mention it. I know I'll be doing something about it...the top up from half salary will be more than welcome. TTFN Adam

I have just found out that a couple of recent court cases mean that those of us on long term sick from work, continue to accrue holiday entitlement from your employer, throughout the time of your sickness. In addition your employer must carry over your untaken annual leave across leave years irrespective of contractual statements. Interesting, I'm not sure how to raise it with my boss though, think that will go down like a ton of bricks, he's a bit of a dinosaur! See the attached article http://www.guardian.co.uk/money/2009/sep/15/holiday-sickness TTFN Adam

Hi All Form my research, and as an ex smoker myself (gave up 2 years pre SAH) the reason for not smoking, aside from the cancer and high blood pressure, smoking is a apparently a causative factor in the weakening and loss of elasticity in the layers of muscle that make up arteries and blood vessels. As the arteries harden (atherosclerosis) they become less able to absorb blood pressure changes and make the rupture of an aneurism more likely. As with everything with SAH, this etiology is only the researchers best guess, but it makes sense to me, and it troubles me significantly that my young daughter (well youngish, she's 20) continues to smoke, especially given the fact that if a first degree relative has an SAH, your own risk factor is increased. Anyway, hope that helps, or if someone can add more I'd love to learn. Regards Adam

Hi Cal Obviously I can only speak from my own experience, however my wife and I flew to Thailand via Hong Kong (something like 15 hrs in total) 4 months after my SAH...it was our honeymoon, we had already cancelled it once as we were scheduled to fly out 10 days post SAH! I wont's say it doesn't make any difference, I found the constant noise of the engines very uncomfortable, however the actual flight wasn't too bad, we did fly upper class though, I'm sure that makes it easier. However that is the only long haul flight we've done. We've done a couple of short haul flights, Spain and Egypt, 3 and 5 hours respectively and we did those cattle class with charter airlines, can't even pretend it was as easy as the long haul upper class, the number of people in close proximity and the noise on top of the engine noise made it uncomfortable and made my "hurty head" a lot worse and set off one of my adrenaline rushes (a kind of fight or flight feeling) but it wasn't unbearable, and the prize of sun and relaxation at the other end made it all worth while. I would say "go for it" however you have to do what's right for you and your husband. Best Wishes...and enjoy your holidays, wish I was off again but my wife has run out of annual leave! TTFN Adam

Hi Bessie Please don't worry, I can understand where you are coming from, my wife tells me she had the same concerns whilst I was in hospital. To give you the details as the surgeons were waking me up following my coiling, I suffered a stroke and subsequent hemi-paresis (paralysed down one side), they put me back under and managed to fix that. I was then sent to recovery where I spent several hours before being sent to ICU for a few days and then onto HDU before being transferred to the general ward. Each time I was moved down a level of care, my wife was very concerned and thought I wasn't ready for it; I didn't eat anything for at least 10 days, I was on a drip for fluids and meds and was catheterised until I had been on the general ward for several days. But I made it and so will your Mum What I am trying to say is that it is natural for you to be worried, but generally (not always) the medical staff know what they are doing, they have seen it all before. Once we have come through the initial bleed and surgery, providing there is no vaso-spasm it is just a matter of supportive neuro care with a large dollop of TLC from your relatives. As for not having records to hand to record your mums temperature, well it is the NHS a government bureauracracy, they are the best in the world at losing files . Don't worry about your Mum, odds on she won't even remember her stay in hospital, and will rely on you and your Dad to fill in the blanks for her....believe me it's really frustrating not knowing what happened to you during that period! I hope this helps, take what re-assurance you can get, talk to the medics, ask us..we've been there! Take care, look after yourself, your Dad, and be there for your Mum..she will need you, not just while she is in hospital but for quite some time to come... Best wishes Adam

Hi Michelle Good guess on the whizzy brain...but no prize this time! Best I can describe is that everything seems to be exagerated and speeded up, if someone speaks to me, it's a bit like Mickey Mouse on speed! Visual stimuli have a similar effect. My doctor and my wife just look at me blankly when I try to explain it! Come on guys, own up has anyone else experienced this one...without taking illegal drugs TTFN Adam

Hi Michelle I haven't had an EEG yet, the consultant doesn't seem to think it is necessary, not sure why? He did request an additional MRI to rule out encepolopathy (I think that is what he said!). Thankfully the drugs do seem to be helping, have only had one "absence" since I reached full dose, so there is some good news The other symptoms such as "whizzy brain" (don't ask me what that is, it just describes it quite well!) fuzzy head and headaches which he said may well be caused by mis-firing synapses due to sub clinical epilepsy seem to be dissapointingly stubborn and are hanging around! Hope they get to the bottom of yours soon! Best wishes Adam

Hi First I'll qualify my advice, I am..or at least was before my SAH a senior compliance director at a major insurance company, so hopefuly can give you the "real" position. 1) The DVLA clearly state that a non aneurismal SAH does not require notification or withdrawal of driving licence, unless of course other medical conditions apply. 2) Providing you have not received medical advice not to drive, then legally you are able to drive. As you said legal and feeling able to are entirely separate issues! 3) Under the DDA insurers are not able to impose penal terms to policies, unless they can justify these terms, most insurers nowadays accept that if the DVLA have issued a driving licence, there is no justifiable reason to impose terms of restrictions to the policy. 4) Despite what I have said above, there are always rogue insurers out there who will not follow the party line and will rely on a non disclosure of material facts to avoid a claim. I would therefore advise that you formally declare the SAH to your insurers prior to renewal and keep a record. If they attempt to apply penal terms, remind them of the ABI agreement regarding disabled drivers..... Best wishes Adam

Hi Bessie I would just like to add my welcome to BTG, I'm a new member, but I can already say the people on this site have helped me enormously. Most of us here have been through what your mum is going through, and we are all still here, albeit with a few added foibles! The main thing is she has survived the initial bleed, something approx 35% of people don't, so she is already showing she is a survivor, she's now in the best place...other than Queens of course who fixed me . She'll be on Nifedipine to prevent vaso spasm and pain relief, before you know it she'll be home getting under your feet! Please don't worry, she's in the best place, she probably won't remember much of her stay in hospital, it's you and your Dad who will be having a hard time of it now, I know my wife did. Look after your selves and above all remember she is now on the road to recovery. Best wishes Adam

Karen, Keith Thanks for your informative and helpful posts. Hope I can be as helpful to someone else in the future. Regards Adam

Hi All Have just beemn reading the news article linked by Karen Professor Yasser Metwallys' newspaper http://yassermetwally.wordpress.com/cerebrovascular-disorders-stroke/subarachnoid-hemorrhage/ The section regarding scanning via MRA worried me..see below Magnetic resonance angiography (MRA): The role of MRA in the detection of SAH currently is under investigation; however, many authors believe that MRA eventually will replace conventional transfemoral cerebral angiography. Given the current limitations of MRA (eg, failure to detect posterior inferior communicating artery and anterior communicating artery aneurysms in one series) most authors feel that the risk/benefit ratio still favors conventional angiography. My SAH was in the anterior communicating artery and was coiled by endoscopic GBM at Queens in Nottingham. The article suggests that MRA cannot detect an aneurism in the anterior communicating artery, as such I am doubtful as to the efficacy of an MRA for the follow up scans to check the placement of the coil. Maybe I'm worrying unneccesarily, after all I'm sure the medics know what they are doing..but post SAH wit the way what passes for my brain reacts nowadays I can't help worrying. Any comments or re-assurance would be gratefully received! Thanks Adam

Hi Sandie Welcome to BTG, I hope you find it as ..ok now it's my turn I can't remember the word I want..... What you're feeling mirrors me to such an extent it's almost scary. You are about 2 weeks ahead of me, I had mine on the 9th January..my 3rd day back at work after the Christmas break. Like you, I thought I had made quite a quick physical recovery..to an extent, still have a few issues to contend with. What I'm struggling with now is the emotional stuff. I feel like I have caused my family enough worry and I really should stop whingeing about it. Whenever I am asked how I am, my default answer is "a lot better thanks" we all know that isn't true, I just don't feel like I can tell them how I really feel. Sorry, must stop whineing I'm supposed to be welcoming you. PS dont feel bad about being bad tempered, I am so much more irritable nowadays and probably a bit more emotionally needy, If my wife goes out to work without giving me a kiss It feels like she's fallen out with me...reidiculous I know, but that's how I feel. Hope it helps, you're not alone Best wishes Adam

Hi Debbie Let me add my welcome to the site, I'm new as well and like you "lurked unobtrusively" for quite some time before actually posting anything. You really are in the very early stages of recovery, you have probably only just been able to stop taking the nimpodipine every four hours, I remember my wife waking my every four hours and insisting I take them! At SAH plus four or five weeks, you really are doing very well to be even looking at support groups, at that stage I think I was still basically feeling very sorry for myself, something that I have thankfully been able to move on from. The one bit of advice that I would give you, is that whatever happens to you, however weird you feel or whatever strange symptoms you may have, talk about them, you will almost certainly find someone else here who has had the same sympoms. Whilst the medics are very non commital about recovery times and likely symptoms, I do believe that it is only the mix of ingredients and timings that change between different people, we all still "pick from the same pot of symptoms" Ok, I know that anology was a bit convoluted, but I hope I got my point across. For now, simply look after yourself, be grateful for your family and the support they offer you, and try not to be too independent..believe me I know that last bit can be the hardest. You have survived the bit the doctors can help you with, now it's upto us to help you help yourself to recover from the insult your body has just thrown at you. With time and patience you can recover, I am six months down the line, when I look back six months I'm amazed I have made such progress, it comes so slowly you don't recognise it at the time. When I hear from people who are even further down the line than I am, it gives me confidence that I can get there as well. Good luck, take care and let people help you. Best wishes Adam PS have a word with my boss for me will you, he lives in Melbourne and I need a good word in for when I start back at work! PPS, am happy to respond to any PM's if it will help

Hi Michelle I can relate to what you describe, I have been having "absences" for a few months now, the children say it's like I've stopped or been switched of for a few moments. They never last very long though I do feel a little peculiar after them. I asked my GP for a referral to neuro, when it finally came through it was months away, as I have BUPA I got a private referral and he confirmed sub clinical epilepsy and prescribed anti seizure meds. I'm still working upto full dose so can't report whether it has worked or not yet. You described your arm twitching, my wife who witnessed one of mine tells me I was twitching and my eyes were jittery...plus I dropped my bottle of beer!!!!! The problem I had was there was absolutely no warning, in fact I had one when I was crossing the road, I just stopped (I was on my own) I came round to find some irate driver blowing his horn and gesticulating in a very "Friendly" manner, needless to say I scurried off highly embarrased. Your symptoms do sound very similar to mine, hope the EEG gets to the bottom of it! Look on the bright side, if they do diagnose epilepsy, you meet the disability criteria and are suddenly protected by the Disability Discrimination Act, useful if your employer is difficult! Hope you get to the bottom of it Good Luck Adam

Hi All Advice and opinions would be wonderful, cos I havent got a clue what is for the best! I have been off work since my SAH in January this year, have just passed my 6 month anniversary and to be honest I'm getting a little restless and need to feel I am being useful. Financially whilst the extra money would be great (i'm on half pay at the moment) it isn't vital and my wife is happy to continue to support me. My boss at work is a dinosaur and to be honest is next to useless at this sort of thing, he means well but!! I have discussed work and he tells me he has a project he wants me to undertake starting in January. Before my SAH, he agreed that I could work from home Mon & Friday, be in the office Tues-Thursday and they would fund the overnight cost (I now live 150 miles from work) I think he is going back on that and the fact I have had my licence rescinded as I have been diagnosed with epilepsy post SAH. He has made it clear I need a driving licence to undertake the project. I'm not sure why it is only is a project overseeing the design and implemention of a new IT system. I may need to visit sites occasionally but there are such things as trains and taxis. I am also concerned that post SAH, I am not as effective as I used to be, I had a senior role as the companies operations director, it was very challenging and I'm not sure I will be able to do it as well as I used to, even after a back to work programme. I will not get my licence back for at least 12 months, I can do a lot of my old job remotely and could probably get away with visiting the office once a week, or even once a fortnight. I now have a poor memory, get frequent unexplained adrenaline surges, and have difficulty concentrating for extended periods. Last night we went out for dinner and I couldnt even remember which hand to hold which bit of cutlery! pathetic hey! Anyway, what do you guys think? I know I am not capable of returning to work full time and being as effective as I used to, but I also dont want my brain to rot away, it has been damaged enough already! Look forward to hearing from you all Thanks Adam I am aware that some of the issues are probably a lack of confidence

Hi Bobby Thanks for your comments, and welcome to the site...even though you got there first! I hope you feel as re-assured as I do that there are other people out there who really know what it feels like. Especially looking outwardly fine and sounding fine most of the time (if you ignore forgetting words) yet still feeling lousy. I was really suprised and gratified at the welcome I received, its lovely to feel that I belong somewhere and am no longer this weirdo who feels out of place. As everyone says, you really are in the very early stages of recovery and to be walking along the golf course is a really great achievement. As for feeling tipsy after one small ale..well think of how much money you will save! Best wishes Adam

Hi All Wow, what a welcome, it's great to know that there really are other people out there who know what its like to survive an SAH. Thanks for all your best wishes, and Aww Shucks about the wedding, as I said it was probably too soon, I wasn't really upto it, I was just too ****** minded to lose the money we had paid by cancelling it The thing that made me go looking for this site today was basically a real feeling of a loss of independence. I moved up from Berkshire to live with my future wife just before Christmas 2008, the plan was to work from home 2 days a week and stay in a flat near London Tuesday and Wed night for me to be at my desk Tues to Thursday. I was only back to work after the Christmas break for 2 days before the SAH and I've basically been under house arrest in Nottingham since then. Pre SAH, I was very independent, I had been a single parent for 18 years bringing up my daughter (she's 19 now), she decided she didn't want to move to Nottingham with me, so I miss her as well. I'm now still off work, have no real prospect of returning to work before I get my driving licence back and even then with my cognitive and memory issues I'm not sure I will be capable of doing my old job. I was the Operations director of the UK arm of a major Australian insurance company. Thankfully I benefit from permanent health insurance so I will remain on half pay as long as the insurance company are satisfied that I am incapable of returning to work. Luckily my wife is well paid and is happy to support me while I recover, but I'm used to being financially independent. Anyway, enough whingeing, I'm just feeling sorry for myself today! PS I'm 42 now and live in Southwell which is between Nottingham and Mansfield, thankfully it is a lovely market town and I can walk to the centre fairly easily.

I had my SAH and subsequent stroke in January 2009, just 7 days before I was due to get married! I did in fact convince the doctors to let me out, but to be honest I wish I had delayed the wedding, I don't remember most of the wedding, apparently had to go for a nap ,a couple of times through the day and was in bed alone at 8pm in the honeymoon suite! I remember the day of my SAH well, I was at work and suddenly developed the worst headache of my life, I perservered for 10 minutes the just told my boss I was going home, which was unfortunateley 150 miles away, don't know how I managed the drive, I must have been mad, I remember pulling over a few times to vomit and getting double vision at least once. I would criticise anyone else who had driven in my condition, but in defence I wasn't thining straight. I got home and my then fiance basically put me to bed and treated me for a migraine. Got up the next day, felt ok -"ish" in the morning then went suddenly down hill around lunch time, my GP was excellent, my fiance called the surgery for an emergency appointment, within 5 minutes the GP had called back and said he wanted to see me immediately. He referred me to City hospital in Nottingham where the undertook a CT scan, some junior doctor then wandered along and casually mentioned "well about this bleed in your head" you can imagine the shock, we had to then ask what he was talking about. subsequently got transferred to Queens Medical centre and underwent coiling, I had a stroke during the procedure which they succesfully treated and was the transferred to ICU for recovery. That was just the begining of the journey to recovery. I am now SAH plus 6 months, am still having lots of memory difficulties and have recently been diagnosed with epilepsy so no driving licence of at least another 12 months. I also suffer from unexplained adrenaline surges, the doctor says its anxiety attacks, but I don't buy it, I'm not someone who would normally suffer that sort of thing, but who knows I think I've changed post SAH! Whilst I have had a lot of support from my wife and family, but despite their good intentions they just don't get it..I'm sure you all know what I mean. I feel very vulnerable nowadays and am really missing my independence, I wish I could get the old me back Anyway, I'm glad I found this board, the support group the hospital told me about appears to have fallen off the planet! A good book I found was "A dented image, journeys of recovery from Subarachnoif Haemorrhage" available from Rutledge publishing. Anyway, thats enough for now, just wanted to say hi and tell someone who actually understands some of what I'm feeling! Thanks Adam