Anne Fleming

Hi Lesley Just wondering if you've had any support from an OT since your SAH? After I got out of hospital after coiling I got sent as day patient to rehab hospital where it is mainly an OT and neuropsychologist I see and I'm still doing tests there on memory and cognitive skills. I had to stop them for a while and instead just went along for a chat and sometimes a good moan and a cry! I think it must be difficult for employers to understand about SAH so I think my OT wants to meet with my boss to speak about SAH and the effects it's had on me/what it's reasonable to expect from me when time comes and I think I can return to work. It seems a bit daunting that you are facing Office Manager and HR Manager on your own. I don't know if I'm unusual in having a referral to OT after SAH. Anne x

Thanks everyone for your advice. Yes I think I'm much too up and down at the moment to seriously think about going back to work as have the odd good day but most days very tired. I think I need to wait until I have more good days than bad before I even think about it part-time. On my discharge sheet from hospital it said re work: three months before returning to work. I didn't realise at the time this was the very minimum amount of time you would be off so I did indicate to work that I would be back after 3 months. Will have to explain that this isn't going to be the case. Love Anne x

I know this topic has been aired before quite a bit already but thought I would ask advice all the same. I had my SAH last Nov. My main remaining symptoms are severe taste/smell distortion (though improving a bit), hearing distortion and tinnitus and fatigue and memory not so good. I had my check angiogram last week and though the results seemed good re the occlusion, it seemed to take an awful lot out of me & left me very fatigued & with headaches though those now clearing up. My employer is wondering when I might be up for returning to work on a phased return, maybe one day a week to begin with (they've been very supportive since I've been ill). My GP and my OT and neuropsychologist at the outpatient rehab centre I attend, are noncommittal and leaving it very much up to me and would probably be supportive either way. I find it very difficult to judge how well I am. When I compare myself to how I was before SAH, I feel I now have so little stamina. Some days I'm very tired, other days my energy is a bit better but if I overdo things I pay for it the next day. I also get anxious about my eating as although food no longer tastes like sewage, I have to brace myself to force most things down. Has anyone found that they've gone back to work whilst still feeling very tired and that getting into a routine has helped them? I would be worried about going back too soon and then having to go off sick again as I think once you go back, whilst colleagues tend to be sympathetic at first, they do soon forget about your illness. However if I wait until I no longer feel tired, I may never get back. Thanks Anne

Hi Thanks everyone who replied to my last posting on distorted taste and smell after SAH. I saw a dietician though she didn't have much scope to help me, she did enlighten me in that she said what I was tasting and smelling in veg and other cooked food was the sulphur and the reason bread smelt and tasted bluemouldy was the yeast which is apparently a type of mould. With my scrambled taste I was noticing all the horrid bits people don't generally notice. She did say it was rare after SAH and no one knew if it would improve. Just posting to say that after a few months of food supps, porridge, mashed potato and little else, my taste and smell seem to be slowly returning to normalish over past week. It seemed to happen at the same time as the propeller sound in my right ear changed to loud bells ringing so something must have changed, healed at the site of my haemorrhage. I tend to be both impatient and pessimistic so if there is anyone else out there like me, even I have to say some symptoms will settle down in time so don't give up hope if you're struggling with something. best wishes Anne

Hi all Just wondering if anyone had experienced hearing probs after their SAH. My aneurysym burst on right side of my head and since then, I have a ringing (like tiny bells tinkling) in my right ear when its quiet but once I start listening to any kind of noise it becomes a whooshing noise (so loud it's like standing beside the propellors of an airplane) just in my right ear. This loud noise getting better and it's now louder bells I hear when there's noise but it feels like I can hear the "hearing" part of my brain in operation. Also when I went to the cinema for the first time after my SAH I could not believe how loud the film was and in fact so loud I couldn't make out all of what was being said. I can listen to radio and TV no problem. Has anyone else experienced this? I'm seeing an ENT consultant in April so hopefully he may be able to help. I definitely think my heaing is distorted since SAH. Best wishes to all Anne

Hi Cal Do you remember what you were doing when the SAH occured? Did you feel a pop in the back of your head? on the loo of all places and it was definitely like a pop in the back of my head and I could feel liquid rushing down the inside of my head and I remember thinking "This is serious" and then I must have passed out Did any of you have a drain that made the blood disolve? no, but I was on Nimopdine (or some name similar) tablets for about 3 weeks after my SAH to help stop vasospasm though I did have a v/spasm How long were you in the hospital? 19 days How long do the headaches last? It's really strange but it's been 3 months since my SAH and I've not had any headaches at all since I came out of hospital. I know this isn't normal but I think it depends where the haemorrhage takes place. I think my aneurysm burst very near my right ear so I have loud sounds in my right ear instead, almost as if I am standing beside a plane which is about to take off. with very best wishes Anne

Hi all I would say definitely get checked out if there is any family history of SAH. As I mentioned in another posting, my mum died from SAH at 78 and my gran at 46 (not long after giving birth to my mum). When I was in hospital with my SAH last Nov there was one other lady in the ward who was early 40s and she had just had a SAH and she was telling me that her mum had one just before giving birth to her. Luckily her mum survived and is now in her 80s but she wasn't aware she had given birth to her daughter until 6 weeks after the birth. Certainly when I had my checkup recently the consultant was keen to find out if there was anyone else in my family who should be screened. I don't think SAHs always run in the family but in some cases they do, perhaps slightly more down the maternal line. Bestest Anne

Hello I'm pretty new to the site though I did put one posting about my distorted sense of taste but thought I would say a bit about myself and my SAH. I'm 44 and had my SAH back in November 07. I had no symptoms beforehand and in fact woke up in the middle of the night to go to the loo and sitting on the loo I took a sudden pain in my head and could feel liquid running down the inside of my head. I think I passed out at that stage but as I was in the house on my own I must have called 999 as I remember coming round lying in the hall holding my mobile and the ambulance operator telling me on the phone to unlock the door and try to hold on as the ambulance would reach me soon. When I came round I immediately thought of my mum who had died 6 years previously (aged 78) from a severe sub-arachnoid haemorrhage and I felt convinced this was what I had taken. So when I got to the Accident and Emergency Dept, I told the doctor I thought I'd had a SAH. They must have thought they had a major hypochondriac on their hands. I also remembered I had been told that my maternal grandmother died from a brain haemorrhage at 46 not long after giving birth to my mum though I had never made any connection to the condition being hereditary (though I know it isn't usually), probably since mum was much older when she had it and I never knew my gran. I had my aneurysm coiled a couple of days later - apparently it was a big one and the consultant joked that it took £11,000 worth of coils to bind it up. I had a couple of other events - a seizure before the coiling took place and a vasospasm a few days later but I got through those and got out of hospital a couple of weeks after the coiling. For the first few weeks after coming out of hospital I was just so elated to be alive but then then after that initial euphoria, it began to dawn on me that this SAH wasn't something that would take me a few weeks to get over and that it would be a long road to recovery and I began to worry about whether I would ever recover. Since the beginning of Jan, I've been going for rehabilitation at a local hospital though I'm still ploughing my way through tests on memory and cognitive skills and I'll get the results of those in a few weeks time and then rehab should begin. Apart from short-term memory and tiredness probs, which seem to be the norm with SAH, I would say the 2 main problems I have are my distorted sense of taste (or sewage mouth as I have begun to call it) and also tinnitus/hearing distortion(I feel another posting coming on about this). I think the most difficult thing is that the consultants, GP say that they don't know if taste, tinnitus etc will get better but it may do in time and I find the uncertainty hard to cope with as sometimes I can be optimistic and then at other times swing the other way and feel it will never improve. Anyway, I'm so glad to have found this site and hope I can maybe add something useful from my experience to others. That's enough for now. Anne

Dear Karen Thank you for your emails and help. I set up a new email account and then on the same day tried to register with behingthegray and not being very technically minded, I think I got in a muddle. I seem to have successfully registered now and have posted a message on the discussion forum. Best wishes Anne

Hello everyone This is the first time I've written on behindthegray. I had a SAH back in Nov 07, which I had coiled. The worst thing I have been left with is a distorted sense of taste and smell. I didn't notice this when I was in hospital and in fact I am sure I didn't have it then since I enjoyed the food in hospital. I first noticed it about a week after I came out of hospital and basically it seems to have got worse and remained very bad. Hot food like soups, stews, stirfrys etc, any food with any flavour tastes like sewage and foods like cereals and bread taste fusty. Due to the severe nasty taste if I try to eat them, they make me gag. The only things I can eat are porridge, eggs, mashed potato, bananas, vanilla flavour yoghurt and ice cream, I can drink milk and peppermint tea and I have been given special vanilla flavour food supplemenent drinks by my GP. It's almost as if I have gone back to being a baby/toddler with very unsophisticated taste. Food which is sweet like chocolate is bearable though tastes too sweet, but I can manage it. I do have some sense of smell though a lot of things smell unpleasant too. When I had the three month check up with the neurologist last week he told me that some people's taste inproves and others don't but it wasn't life threatening and there was nothing could be done about it. I think the name for it is something like dysgustia. This has got me down so much. I have lost over a stone in weight. I have other problems since the haemorrhage mainly tinnitus and hearing difficulties and also short term memory but I feel this taste problem interfers so much with my daily life that I am weakened and don't have much strength to get on with my recovery. The thought of always being like this is too much to contemplate as I think one day very soon I will have had enough of my daily mashed potato and porridge. I would be grateful if anyone else has had a similar experience or any advice they could pass on. I have tried eating cold food rather than hot food but that has not helped. I understand this is quite an unusual effect following a SAH. MY SAH was just above my right ear as far as I am aware and quite a large one. I look forward to hearing from anyone who can cast any light on this. With best wishes Anne