Anne Fleming

Hi Elaine I'm glad your mum's dry mouth problem is getting sorted and hope she doesn't have to wait too long for an appointment. It's hard to know after a SAH what's related to the SAH and what's not. For me I think it's my distorted smell that's causing the distorted taste as I think they are closely linked. Can your mum smell anything? Very best wishes Anne x

Taste has been a big thing for me after my SAH- I've already written about it but after my SAH everything smelled so strong and food tasted awful (everything had the same sewage-type taste) and I also had a bad taste in my mouth. It's nearly a year since my SAH and though it has improved a bit my taste and smell is still not back to normal and the smell of anything cooking still smells pretty disgusting. I've not lost any taste or smell, it's just badly distorted and over strong. I was wondering whether anyone has had this problem and seen improvement continuing after a year has gone past. I'm learning to live with it and come to accept that I may not enjoy food again but I'm still hoping for improvement. Anne xxx

I hope your mum gets on well at the hospital next week. There are certainly new medications on the market for creating saliva but it could all be linked to the loss of taste rather than saliva itself. I'll be interested to hear what the doctors say. Best wishes Anne

This is a bit of a strange one. Since my SAH, though I feel I drink the same amount I hardly ever need to go to the loo. I don't think I have fluid retention as ankles and tummy not bloated. I did mention it to my GP and she said that "what goes in must come out" and she didn't think I had fluid retention so itmust all balance up. However I used to be always going to the loo before my SAH and since I onlly go a few times per day. It's almost as if my bladder has got bigger! Has anyone else experienced this?

Hi Kelly I read Tme out of Mind, the book by Jane Lapotaire, last year. I don't know if you know the book but it's an autobiographical account of her SAH. I am sure there was a mention in it of her shopping more for clothes after her SAH as if she felt she had to validate the fact she was still alive - I'm not sure but it does ring a bell. And also she enjoyed the social contact with people in shops. I think I'm prone to treating myself a bit more as a way of comforting myself due to all my ongoing "things that are not quite right". I agree that cutting up cards is the way to go and maybe pay for everything with cash as it makes you realise how much you are spending. Any maybe write down everything you spend. Perhaps you could set aside an affordable sum to treat yourself now and again. If you think you are spending not for comfort but due to lack of impulse control it may be worth mentioning it to your GP for it to be looked at further. Sorry I can't be of more help on this. Let us know how you go. very best wishes Anne x

Hi Elaine I have had a problem with a very bad taste in my mouth since my SAH. For me it seems to be linked with a very distorted sense of smell and taste. When I first came out of hospital the taste in my mouth was so bad that it would keep me awake at night and no amount of tooth brushing, tongue brushing, mouthwashes would help for more than a few minutes. It has gradually got a bit better, more intermittent and maybe I don't notice it so much now. But when it was at its worst, I found sucking mints helpful at least for short-term relief. Best Anne

Yes I had neck pain too after I came home from hospital post-coiling. It was down one side of my neck (the side I had my aneurysm on). One neurologist thought it was connected to my SAH, another one didn't and my GP didn't. I was given Valium to take to relax my muscles and I took them over a five day period and my sore neck went away and I've not been bothered with it since really. Best Anne

Hi yes I've lost about 40% hearing in my right ear, according to ENT/audiologist. They think probably due to vasospasm I had after my operation. I also have constant tinnitus which is worse when I'm listening to someone or something and not very noticeable when it's silent. I'm looking into get a hearing aid for my right ear as I really miss being able to hear well. I find hearing on the phone and in background noise particularly difficult. Anne x

Thanks for your replies, it really helped yesterday as I was wondering whether I was the only one experiencing this. Yes I am constantly going over things at work and checking and rechecking them. I wonder why my brain doesn't work so well automatically any more. Has anyone had this explained to them? Is it to do with concentration or memory or slow processing? I feel it's not so much that I can't concentrate but that I have to concentrate all the time. Anne xxx

I just wondering whether anyone has a similar experience to myself. I've been back at work for a few months now but find I have to pay extra attention to everything, from taking care to look to my left as I don't have great awareness on that side and I really have to study new people's faces very carefully to try to remember what they look like and recognise them in future. The list is endless, of things that I used to do automatically, that now I have to concentrate on and it's like a full-time job trying to appear "normal". Has anyone else had this and do you get used to it in time? Thanks Anne xxx

Dear Laura I am sorry to hear about your brother's death. I am glad though your GP took your concerns seriously and has referred you to the hospital. It is probably extremely unlikely you will have a SAH but my gran and my mum both died from SAH and after my having one, the hospital was keen to scan any close relatives I have though in my case I don't have any siblings. I don't mean to scare you with this - I think it is a small percentage of cases where there is a hereditary link. Let us know how you get on at this hospital. With best wishes Anne x

Hi Nikki I'm amazed at how quickly you got back to work after your SAH. I had my SAH in November 07 and it was over 6 months before I went back on staged return and I've been full time for the past 4 months or so. I'm only beginning to gain my strength and it was a real struggle at first and I had to go home and fall into bed. I was nowhere near ready to go back to work 6 months after my SAH but I decided to go back as will probably be made redundant soon and I wanted to get back to my job before it ended. Before I went back to work my boss came up to meet my OT at the rehab hospital I attended for 6 months (as day patient). I found that really useful as my OT went over all my deficits and there was a very long list of them. It meant my boss was much better informed and in turn my colleagues were, and so everyone has been really understanding since I got back. I think it's good that your boss is understanding. SAH is very serious and it's good they are looking out for you a bit more than usual. My work is the same and I think "long may it continue!". I used to work incredibly long hours at times but wouldn't be up for that now and it's not expected of me right now. Best wishes Anne xxx

Hi John Yes I have a problem with my short term memory too. I sometimes think that when I worry about it, it is even worse. I also used to have a good memory for things that happened before my SAH and now a lot of things are a bit fuzzy. I feel a i bit like beore my SAH I was driving on the left hand side of the road and now it's as if I've suddenly in France or somewhere driving on the other side as I have to keep so focused and concentrate on what I'm doing. Best wishes Anne

Yes after my SAH I felt I lost my inbuilt sense of time though it seems to have come back, especially since I started back at work so maybe it was due to a lack of routine. But I remember when I first got out of hospital I would look at the clock and it would be 11am and then I would look later and think it was about 2pm and it would be 4 or 5pm, it was a really weird feeling. I couldn't understand where the time went! Anne xxx

Thanks Karen I think I am on them for a mixture of reasons. I went to the GP with buzzing in my head (the day after I started work) and my whole system seemed to be racing so she prescribed propranolol and the buzzing in my head settled immediately after I took the first tablet. So it's probably a mixture of anxiety, controlling my blood pressure etc. I do think they are causing the dreams and hallucinations and extra fatigue though I could be wrong. Love Anne xxx

Hi everyone I was put on propranolol, a type of betablcoker by my GP a few months ago. A while after I started having very vivid dreams all night long and also visual hallucinations (seeing bright colours, shapes and sometimes actual identifiable objects) for the first few minutes after waking from sleep. I also have very severe fatigue but that will at least be in part due to the SAH. I was wondering whether anyone else has taken betablockers and experienced similar side effects? I am seeing my GP on Friday so she may change my medication. Love and best wishes Anne xxx

Hi Shiree I've had black floaters in front of my eyes for several years now (long before SAH). My doctor said it was vitreous detachment and not to worry. Sometimes I notice it more than others, I would really notice it more on a sunny day. It's probably worth mentioning it to your GP if it's a new thing. Love Anne xx

Hi Donna I started back at work about 6 months after my SAH. I started doing 3 afternoons a week and after 6 weeks had worked up to full time, 10-6 Mon - Fri which I've been doing for the past 3 months. I was exhausted at first and had to go home and fall straight into bed. I still have quite severe fatigue which I struggle with but I hope it will ease in time. However at first I would feel nauseous a lot of the time with the fatigue and that is beginning to lift a bit. Going back to work has been good as it's taken my mind off my SAH and helped my confidence. Hope it works out - I think it will if you give it time. Lots of love Anne xxxxxx

Hi Donna sorry I'm long in replying. I got very depressed and anxious; it started 2 months or so after my SAH. I think part of it was the whole experience of having the SAH and also I was very upset about my taste and smell being heightened and everything tasting and smelling like sewage (I have other symptoms but this taste thing really got me down tremendously) and I couldn't imagine ever living anywhere near a normal life again. What helped me was being prescribed quite a high dose of antidepressants and also I was given Diazepam for a short time (couple of weeks) and then could take the odd one if required. Also I had cognitive behavioural therapy for my taste problem. I suppose what I'm trying to say is that I think it's ok to take medication for feeling anxious, it doesn't make you any lesser a person and it certainly gave me an edge and helped me move forward a bit. The other thing that helped me was frequent visits from next door's cat. Having her sit on my knee and purr contentedly got me through many difficult hours. I hope you feeling a bit better. Lots of love, am thnking of you, Anne xxx

Thanks everyone. To be realistic, I never went to the gym before I took ill so it would be a shock to start now. I think I will try to walk a bit more. I think Ann, I will avoid anything too strenous as it would probably make me feel worse. Anne xxx

I'm 8 months post SAH and though I'm back at work, I find I get so tired. My bones ache and I feel slightly nauseous with tiredness. I've only ever had it pre-SAH when maybe I've been up all night or something extreme like that. Someone suggested that exercise might help. I was wondering if anyone has tried this. I've never been one for exercising and now I'm worried that I might do myself harm by overexerting myself. Has anyone any tips on combating fatigue with exercise? Anne xxx

Hi Yvonne Yes I lost some hearing in my right ear after my SAH in November last year. I've had my hearing tested in March and the audiologist confirmed that I have an odd sensoneural hearing loss pattern in my right ear, affecting my heaing at 1000 and 500 kh. He put me on a course of drugs to drain away fluid from my inner ear but they didn't help and the second hearing test I had three months later showed the same results. It's likely the hearing loss was caused by the vasospasm I had after my coiling when lack of blood supply damaged hairs in my inner ear. My hearing seemed really distorted at first but over the months I have got used to it and am managing better. I have constant tinnitus in my right ear caused by the hearing loss. When I am in quietness, it is hardly noticeable but when I speak or listen to something, it is quite loud. I'm also getting used to this too. My neurologist didn't think my hearing loss was connected with my SAH but I knew it had to be in some way as I heard perfectly well before it. I find listening to music difficult as it sounds distorted as apparently you need both ears working well to hear music properly. Did you get a hearing test done at the ENT department? Best wishes Anne

Hi Myra I lost a lot of weight post SAH as food tasted so bad. I'm now starting to put on weight as I've started to ignore the bad taste. I think with me it's because I'm back at work and feeling so tired a lot of the time and eat chocolate, nuts or whatever to give me a boost of energy though obviously it doesn't last long. I'm going to try to do something about it before it gets worse and I get heavier. Anne x

Hi Janet yes it's true, you want a balanced life rather than one in which work takes up all your energy. My hours have crept up to full time again though I don't think I will want to do it long term as I find it exhausting. However I will very likely be made redundant in November this year so am trying to hold on until then. I'd like to work less time and have time to do other things I enjoy. On the weight issue, I no longer enjoy most food due to taste distortion (though it has improved a bit) and I lost a lot of weight following my SAH. Now I've got used to things tasting bad and find that I eat too much to keep myself going as am so tired. eg a cup of tea and chocolate to give me a boast in energy. Has anyone else found this? Good luck on Monday. Anne xxx

Hi Donna yes it has been v humid, heavy and oppressive here in Edinburgh this week and I've felt so tired, my legs are like lead and head feels very heavy too as if a lot of pressure in it. I think it must be connected to SAH. Anne xx