Anne Fleming

I was sitting on the loo when my SAH happened. It was weeks before I used the loo again as had a catheter in hospital but I remember I was a bit nervous the first time I used a toilet again.

For the first 6 months post-SAH my taste and smell has been very distorted with constant sewage taste in mouth and most food tasting like sewage or mouldy. I've found this hard to cope with tho my GP has been good, prescribing high cal supplements to keep my weight from dropping any more. The "sewage" taste is definitely easing up a bit and I think as I'm able to eat more real food rather than rely on supps, I'm beginning to feel stronger & more normal. I've never been a "foodie" but this problem has really worn me down.

It's been 6 months since my SAH. I'm just wondering how other people felt after 6 months? My recovery is SO slow. Do you ever get to the stage psychologically where you start to forget about SAH and it's more a distant memory? Anne x

Thanks everyone Keith - you've given me a laugh! I think I may be grinding my teeth at night and that may be causing it and may not be linked to my SAH.

This probably sounds weird but since my SAH I often get tired jaws. Has anyone else experienced this??

Hi Quokkagirl Good luck with your decision. It is good to chat with others about it but usually the right answer re what it right for us comes to us in time. Look forward to hearing how you get on. Best wishes Anne x

Hi Quokkagirl I had my SAH in Nov and am planning to start back at work on a very reduced hours basis in a couple of weeks tho I'm not sure I'm ready but time will tell. So I'm not the best person to give advice. Do you have a helpful GP? Perhaps if you slept better it might help. Could your GP refer you to an Occupational Therapist for you to discuss the job situation with? My job had a lot of interaction with people - on the phone and in person and I'm going back to duties which are more solitary as I think I would find constant interaction very fatiguing. Could you do a slightly different job within your organisation and work a bit from home? I think it's early days for you (that's what everyone keeps telling me!) so perhaps you could try going back to part-time for a while and seeing how it goes for the next six months and review it after that. It seems to be with SAH that no one knows how much anyone will improve or how quickly so you can only really plan on a more short term basis. Sorry I've not been more help but hope it goes well. Anne x

Thanks for your reassurance. I guess it will go in time. I hope to get back to work in a couple of weeks time (just a few hours a week) but will find to find a quiet space to work. I used to be one of those people who could type and chat away at same time but couldn't do that now.

Hi Keith It's interesting what you say re personality changing. I think I probably speak my mind more since my SAH without thinking of the consequences. It's subtle and don't think anyone has noticed yet. Also when a certain politician appears on TW looking very smug, I have to switch the TV off as I can't bear his self-satisfied look - I've never felt as strongly as that before! John - you may want to challenge these people who you feel dismiss you. It will be coming from their ignorance of and fear of a SAH. It might be better done on a one to one rather than as a group, I don't know. Bestest Anne

Hi Lesley yes it sounds like the same thing. It must be fatigue. When I first went to the cinema post SAH, a few months ago I couldn't hear the film properly as it all sounded so distorted but now I can go and make out most of the speech. I did see No Country for Old Men last month and I found it difficult to make out some of the dialogue due to the deep south accents and mumbling. I'm planning to start back at work in a couple of weeks' time on very reduced hours. I'll have to try to find a quiet corner where I don't chat a lot. Love Anne x

Hi everyone when i speak or listen to anything I have a ringing in my right ear. It's not like normal tinnitus as I don't have it when there's silence. it seems to be connected to the hearing loss in that ear as the noise echoes round in the ear. When I visited work yesterday i was there for four hours chatting to people, really nice to catch up but I thought my head and right ear going to explode at the end of it. I don't have headaches as such but a feeling that my brain may suddenly burst out of my head. Has anyone else had this? Anne x

Hi Mel yes it's odd never knowing how things are going to taste. I have a bad taste in my mouth all the time and I had been attacking it with tongue scrapers and mouth washes but nothing helps for very long. Do you get this taste? The hospital think a lot of the blood from my SAH must have landed on my taste and smell centre in brain. I've been very upset over it as most food tastes like sewage. Have you mentioned it to your doctor? It's the one thing out of all my symptoms that I would love to see improve a lot more. I miss smelling things like fresh linen, newly washed clothes, shower gels etc as they smell off. Love Anne x

Hi I was 44 when I had SAH. My mum was 78 and my gran 46 when they had theirs though sadly neither survived. Anne x

yes I get it too, it affects the right side of my head and my right ear. It doesn't really bother me. Because I've had sudden hearing loss in my right ear following the SAH I am on medication from the ENT consultant in case my inner ear isn't draining fluid away properly as my ear feels very full. But I think the feeling of pressure is different from that and is more in the area where I had the haemorrhage (above right ear). Anne x

Hi Louise/Karen Louise- yes I did have to make the coat hanger, it's one of the tests I did worse on as it took me ages to figure it out. I also had to do some memory tests and I've tried one of them on friends (no SAH) and they were scoring on average one out of eight and then beginning to worry about their memories (this was the test where she read 8 pairs of non related words out and then said one of the words and you had to say its partner) . It's interesting what you say about OTs and quotas, I hadn't imagined that they would have to try to get a certain number of people back to work, is this really the case? Also it seems that a few people take meningitis post SAH and I was wondering if there is a connection? Karen - I would say, having read about other people's experiences post-SAH on BTG, that my aftercare has been good and perhaps it is generally better in Scotland or certainly if you live in/near Edinburgh, I can't speak about other parts of Scotland. And of course prescription charges are being phased out here & council tax at standstill this year . But I have a bit of a sinking feeling about the long term repercussions of all these savings, as it could end up that it affects the level of services available to people but who knows? Anne x

Hi Cyberhorse Mel yes it sounds as if you're having similar problems to me. I'm vegetarian so don't know if meat tastes different but lots of other things taste horrible or don't have much of a taste. I think food with onions, garlic, leeks are particularly bad and of course they're a staple to flavour a lot of veggie food. Do things smell different as well? I had to get rid of my washing up liquid as the smell was so pungent and unpleasant and I am also smell quite a few bad smells walking down the street which I think are there but other people don't notice. Welcome to the web site and look forward to hearing from you again. Love Anne x

I'm about 5 months post-SAH. I certainly was euphoric when I came out of the hospital, just at the thought of having survived. Although my SAH was quite a big bleed, I had 2 vasospasms after the coiling which I think did more harm than my original SAH, one of them causing me to lose hearing in one ear and some left side awareness. My aftercare has been good in that I have an experienced OT and neuropsychologist at the rehab hospital. I've done a lot of tests (still awaiting results) so at least will have a clear picture of my "deficits" and hopefully they will suggest ways around them. Staff involved in my rehab are very careful not to give me false hope and one nurse said that as my bleed quite a big one, it would take at least one year to two, for me to make a recovery though they did not know how far that recovery would take me. I think it's all this uncertainty which makes SAH such a difficult illness to cope with. I find it very difficult to know whether ongoing symptoms such as fatigue and "fogginess" are as a result of the SAH or partly due to anxiety about the whole thing as it's knocked my confidence so much. I'm attempting to go back to work in a few weeks time on a very part-time basis. I was worried about whether I would be capable to do this until the other day when I heard that I will probably be made redundant anyway due to lack of funding. Now I'm so sad that I will probably lose my job as I'd been doing it for 11 years and really loved it and it's not an area of work where there are many openings. I'd almost like to have a holiday from myself for about 6 months and come back and hope to find myself in better shape. I think Karen re the Wikipedia, BTG is a really top notch site and you've done a great job starting it up and putting it together and I think people will find it without Wikipedia. This person at Wikipedia sounds too obtuse to get through to. Anne

Hi Since I came out of hospital after SAH I seem to spend a lot of time on "auto-pilot" especially when I'm in the house on my own and maybe doing housework. I can't remember whether I've filled the kettle and have to check and I can put things in strange places. I used to do this pre-SAH especially when I was overtired or anxious and would find my purse in the bin etc but now my brain seems to be switched off a lot. Has anyone else noticed they do this? Is it connected to memory? Hope I've explained what I mean. Anne x

Thanks everyone for your advice. Janet your description "bone weary fatigue" really sums it up! Yes I was told that I would have severe fatigue for the first 3 months post SAH and I think I didn't notice it so much then as wasn't expecting much of myself. After the first 3 months I've been trying to do more and get into more of a routine with my day and I think that has made it worse or certainly more noticeable. I'll try to drink more water. Also I've noticed since my SAH that my skin has been extremely dry (I've never had this before) so may get GP to do blood tests to check glands etc working normally. Anne x

Hi I'm glad you found the site. I'm not quite sure what post traumatic stress is and how it differs from feeling anxious or depressed but I think it's normal to feel very shaken up mentally after a SAH. For about 5 or 6 weeks after my SAH and coiling(Nov 2007) I was definitely on a high as I felt so fortunate to be alive and everyone was telling me how lucky I was and it was a miracle etc. Since the initial high wore off, I've been finding coping with post SAH and the ongoing symptoms very draining. A couple of months ago I started taking antidepressants which my GP suggested (this was due to my despair over distorted taste as all food tasted like sewage) and they have helped - not in that I feel superficially happy but they have definitely given me that extra edge to cope with things. I've also had cognitive behavioural therapy at the rehab hospital I go to which I've found very good and helps me keep things in proportion a bit more. Maybe as a starting point, you could organise a double appointment with your GP to give you time to chat about how you are feeling and look at the options. I think there will be professional help out there if you can tap in to it. You've done really well to cope for so long on your own post SAH and I really hope you get the help you need to get over this period. Look forward to hearing how you get on. Best wishes Anne x

Hi though I'm still early days post SAH (4 months) I feel very tired all the time. Wake up each morning feeling exhausted and really have to push myself to do things. It's the sort of tiredness where my calves ache with exhaustion. Just wondering if anyone has any tips on dealing with it and when it might start to lessen? Thanks Anne

Dear Stephen I didn't know that re Bonkle. Astley Ainslie in Edinburgh where I go does have a head injuries department but it is probably more general in that it is involved in rehab of a wider range of conditions including heart attack etc. Yes would be good to meet up and look forward to hearing more about how your rehab goes. I've found a lot of mine has been tests to work out exactly what isn't functioning, ie trying to see the wood for the trees or whatever that saying is. It takes the rehab quite a while to pin that down as the brain must be such a complicated area. There's still uncertainty whether my distorted hearing is due to my brain or my ear but am seeing ENT soon to clarify that. best wishes Anne

Dear Cal I have had big twitches just as I'm going to sleep which wake me up with a jolt but this was pre-SAH and not had one for a while. The only thing I noticed for a couple of months post SAH was that I had restless legs in bed (I think it's called Restless Legs Syndrome) when you need to move your legs all the time but this seemed to have fizzled out. I had it years ago though for a while so maybe just a coincidence. But yes it can be very hard to tell what's what sometimes and if things connected to SAH or not. Best wishes Anne

Hi Karen, Lesley, Stephen Yes it makes me sad that there is this postcode lottery. I was very aware it existed for obtaining medicines but wouldn't have known it affected after treatment for SAH. Stephen I think your stint in rehab sounds a good opportunity and look forward to hearing how you get on. I live more or less beside the rehab hospital in Edinburgh so they didn't really need to take me as in patient but you'll have them all at your disposal on the premises. The one I go to in Edinburgh is a very old hospital and has lovely grounds around it. Lesley, good luck with your "interview". bestest Anne

Hi Lesley On the rehab front, just to say that my rehab isn't connected to any type of physical activity as I can do things in the home ok and my movement fine. It very much concentrates on how my memory, cognitive skills have been affected by the SAH and the implications that would have for me working and they are going to work with me on any deficits that become apparent, once all the tests are finished. There are a lot of tests involved and I'm sure I couldn't have done some of them pre SAH never mind now but it's good in that the OT has got to know me and what I can cope with. It feels good to have someone like the OT on my side when I go on to think about possibly working again. All the best with your meeting. Anne x