Ann

Hello Prudence Welcome to Behind the gray. Glad to hear you are on the mend, don't go doing too much though, take lots of rest. Sorry you felt abandoned after leaving hospital, the last thing you needed was having to organise all those things at home. How strange that the dog had a similar thing, must have done it in sympathy for you! Hope you manage to celebrate your 70th sometime. Lots of best wishes Ann

Hi CAl, Yes, I still get very tired too, I do not sleep during the day but still have to rest at regular intervals and if I have been busy I just flake out and am good for nothing at all, sometimes that can last for a few days if I have been really busy. Similar reaction from my GP and I am on a similar time frame to Jim as I had my SAH in January 2008,I also have been referred back to neuro on November 13th but don't suppose it will acheive much. Seems it is normal according to everyone on here who really knows the score but does not appear normal from medics perspective who feel we should be mended by now. I know whose opinion I would value most! Ann

Hi there I too have had neck pain ever since my SAH. First of all the neuro said it was probably just because I had been in one position for too long in ICU for the first week after SAH. A few months later when it still hadn't gone GP phoned neuro to ask him about neck pain and he was pretty dimissive that it was related to SAH. Then went for X rays which showed only minor spondylitic changes ie arthritis type changes (prob not enough to cause so much discomfort) along with loss of normal cervical lordosis (basically a change in the natural curve of the neck) indicating muscle spasm. I was also then offered Valium but it was also suggested I could first try Amytriptelene (excuse spelling) which in larger doses is used for depression but in doses up to 40mg for relief of nerve pain. Just coming to the end of a month on that but no real joy. GP has now referred me back to neuro as he feels, like most of us on here, that it IS related to SAH.I am certainly convinced it is related. When tired it also radiates down my arm and is worse with each footfall of my left foot as I walk, especially going upstairs, its a real pain in the neck the whole thing! GP also suggested Physio which I have just started, she also gave me acupuncture which I was dubious about but am having again next week. Ann

Hate to disappoint you Caroline but Guiness only has 198 calories a pint wheras full fat milk has 375!!!! Not as enjoyable I know but worth thinking about!!!!!!!!!!!!!!!! Ann

Hi Caroline Afraid I have put on over a stone since SAH so no personal experiences but I work and volunteer at a Hospice and know some of the advice given there to maintain or put weight on patients. Fruit smoothies are high in calories, either shop bought ones or make your own.If you make your own add skimmed milk powder and/or ice cream to the blender too to up the calories.Banana ones are good. Milky drinks, make coffee etc using full fat milk and also add milk powder (Marvel type stuff) as well.You can add Marvel to all your full fat milk before using it to get invisible calories that you wont notice you are consuming. Avocados are easily digested and calorie rich and can be used as a spread on sandwiches along with anything else you may like to add as well as being eaten in salads etc. If medication and doctors allow it, a few glasses of wine also helps. Try adding lentils, pearl barley etc to soups. To hell with the cholesterol if the weight loss is an real issue add cream and cheese to mashed potatoes. Flapjacks with your milky drinks are a real calorie boost. Pity I know how to put on weight when all I need to do is lose a few stone!! Hope this helps you, please ask if you need further ideas as there are lots more tips. Ann x

Sarah I could have said exactly the same as you but certainly not so eloquently, a perfect summing up of how I feel too! Thank you. Ann

Hi Phil Welcome to btg from another non aneurysm SAH person! There only seems to be a few of us around. I had my SAh whilst on holiday in MAjorca in January of this year. On release from 2 weeks in hospital in Palma and on return to UK I figured that I would be able to return to "normal" very quickly, after all, they tell us that not finding any reason for the SAH is the best outcome and there seems very little advice or follow up (in my case anyway) for recovery.Whilst that is heartening to know, it still leaves us with unanswered questions, why did it happen and is recovery the same as for SAH with an aneurysm? Anyway, like you I headed back in to life only to find myself, like you, getting weird sensations in my head, totally non specific and hard to describe, sometimes felt like someone was stroking inside my head,plus the tiredness was so overwhelming all I could do was cry and take to my bed. I felt (and still feel) such an idiot, as, after all, we haven't had major surgery like many people here. I sometimes feel like a fraud and that I should have no after effects as even I can't see any physical signs that I have been ill. The neurologist here seems happy as long as I can walk in a straight line and squeeze his hand! Yes, seriously, district general hospitals are rather inadequate in these matters. 10 months on I have made huge strides in what I can cope with on a dayto day basis but I still get times when the cumulative effects of a few busy days lays me flat out for a few days afterwards. It is so baffling to me as I am a very determined person and have recovered from a very serious illness in the past against all the odds yet this silly thing has laid me so low! Heavens, what sort of welcome is this, a moaning session from me! Actually I think it is the best welcome because it lets you know you are following a normal path of recovery it seems, maybe not according to the "manual" but according to all the people on here who know how it really is. All the best with your recovery, do not run before you can walk as I did, take it slowly, do not pressurise yourself in to going back to work (just getting there wore me out!) and realise that your brain dictates the whole of your body and mind so it is bound to have some effect for quite a while. Anyway Phil. pm me if you want to know anything else about what seems to happen over the first few months although we are all totally different in terms of what is normal for us.Good luck and best wishes Ann

Thanks for the pm Matthew, so glad the info helped, tried to pm you back but you are not registered to accept pm's.

Hi Anne I am at the same stage as you, 8 months on. I was determined a month or so ago that I could fight the fatigue with exercise but I was not successful. I went back to the gym,walked and walked, swam and swam, through the stage when I was exhausted but it did not work for me, I just got more fatigued and ended up back in bed for a few days! That may just be me, I wish you more luck. I now just swim a couiple of times a week and take it much easier and I seem fine but still tire easily especially if I have to concentrate on anything. Ann

Hi Elaine Yes I agree with Karen that you should see the hospital doctor or GP. This comment is totally unrelated to SAH but it is worth mentioning that UTI's (urinary tract infections) in the elderly can often cause symptoms very similar to early stages of alzheimers/dementia. Could be a total red herring in your mum's case but worth checking out, it is such a common thing to happen. My mum had it and she became confused, agitated etc, it went on for a few weeks with my fathers become very anxious and scared to tell us that he thought she was getting dementia before we found out the cause. Good luck with finding some answers. Ann

Hi Laura See how you go but as I said before anything with Tramadol in is likely to make you feel "weird" or spaced out. It also makes you very constipated so beware. It seems odd to me that doctors prescribe something for a brain condition that can actually mimic the symptoms that make us feel so awful in the first place. For the first few weeks after my SAH I thought the spaced out feeling was a symptom of my SAH until my daughter (the one who is now a doctor) discovered I was on Tramadol and told me that is how I would feel on it. It is often prescribed after orthopaedic operations and it sends many elderly people quite distressed and peculiar apparently. It is one of the most effective pain killers (similar effect to morphine) but no use if it makes you feel c**p is it!? Good luck Laura

Hi Laura Your new tablets are a mixture of Tramadol and PAracetamol. Tramadol is a strong opiod (ie blocks transmission of pain signals to the brain) and very effective at controlling pain. I had that in early stages but is actually a strange choice as it can make you feel very "spaced out". Ann

Hi Cal Like others I get it as soon as I get overtired, especially when I have walked too far. Getting a bit better but had it a number of times the past few days as I have been overdoing it. Regards to Jim Ann

Hi Sarah Try phoning Headway and see if they can help . Good luck www.headway.org.uk Ann

Hi Donna I can only add to what others have said really. For a while I had a headache like a huge pulse in my head, that eventually went but the neckache continued constantly for a number of months, it then dwindled and I now get it only as soon as I get even slightly tired or stressed. Same goes for the ache behind the eye.I was given Tramadol for the pain in hospital and on leaving but that causes more problems than it relieves and is a very strange choice post SAH as it make you feel spaced out (adding to the problems!) I then took codeine for only the first couple of weeks then went on to codeine/paracetamol in one tablet (which has a MUCH lower dose of codeine, often the best way to get off codeine) then on to paracetamol only. Now I do not take anything unless I get desperate. As others have said, codeine causes headaches in itself (and constipation which can also cause headaches and must be avoided post SAH as straining can cause major problems, excuse the bluntness!) I know it is difficult to be patient Donna but it really is a waiting game, just waiting for things to improve, trying to get out every day and have a little walk, getting frustrated some days when you are too tired to even get dressed let alone have a walk, listening to your own body telling you to rest. I was totally hyperactive before SAH and have found the whole process so frustrating and upsetting but I have come to the conclusion that eventually I may get back to my previous level of activity or I may not but whatever I achieve is a bonus. Think about what you have already achieved Donna, you are home from Hospital, you can get dressed and showered, you can go for little walks, chat with your family. You couldn't do any of those things at first. Yes you will have setbacks and days when you feel totally distraught ( I certainly do) but things will improve. The neck ache and headache means slow down, be patient! Good luck, try to relax and go wih the flow, easier said than done I know. Ann

Hi Phil I have left a few days before responding again. Have you managed to secure confirmation that if you have private physio the home will still be covered? The last thing you want to be dealing with is beaurocracy at a time like this. I do hope you have managed to secure either NHS physio or peace of mind that the home is still going to be paid for if you have to find an alternative route.Perhaps your GP can help to sort this problem out as he can push for NHS referrals for you, I know the home contacted him but it may be worth you visiting him too and explaining your worries and concerns.There is also the possibility that a physio hearing of your plight could volunteer their help, I know that we have had a physio in the past helping out on a voluntary basis at the hospice, anything is worth a try, a bit of publicity would help your case if this was needed. Good luck and best wishes for further signs of recovery, stay positive and look after your own health and well being so you can be there for Sharon. I know that all you want is to be able to lead a happy life together with no worries. Ann

Hi Donna Go and relax, a change of scenery will do you good. The only thing to think about is the length of the journey and can you cope with it, I know I found car travel very difficult for a few months and my neck ached dreadfully even on short journies take a neck cushion along. I had to travel 16 days after mine as it happened in Majorca and I had to fly home! All was well although I had a wheelchair in the airport, no way could I have coped without that. I have recently been on holiday to Spain, 4 months post SAH , best thing I ever did, I came back feeling so much better. Just pace yourself, it is very early days for you and do not run before you can walk!!! Enjoy Ann

Hi Phil Who presented them with the bill for thousands of pounds? Was it the drugs company? I work for a hospice and it is always free at the point of care, no bill would ever be presented under any circumstances. If a patient has private health care we ask the families permission if we may contact the health insurer and see if they will contribute to the care, some do some don't but it is never an issue in any hospice I know as all care is free as they are all registered charities and would lose their charitable status. Many patients do give donations but they are purely voluntary. I am sure that it is totally different in care homes as they are not charities and then it is up to the local authority or NHS trust. Why don't you make an appointment to speak to the Medical Director (or whoever is in total charge) of the care/nursing home asap just to reassure yourself that seeking private physio will have no impact on the NHS care she is receiving and get a reply in writing to cover you for the future. This should remove any fears you have.I know you have enough on your plates without any added stress but I feel sure you have nothing to worry about, get the reassurance you need from the professionals involved. Good luck and best wishes. Ann

Hi Cal Like Jim I had no aneurysm and also like Jim have no futher follow ups or contact with Neurologist. Mine happened on holiday in another country, I had an initial regular CT on admission for diagnosis, a catheter angiogram 48 hours later (where they assumed they may find an AVM or an aneurysm hidden on the CT but found nothing)and an MRI 5 days after that.All text book and exemplary procedures. On arrival back in the UK I had a CTangiogram at about the 2 month post SAH stage folowed by a brief consultation with a neurologist who basically asked me to walk in a straight line(which I almost could do!), asked me to push him away with my flattened palms and tickled my feet, end of consultation and end of any contact. As long as I had no clearly obvious deficit he had no further interest or advice. Anything I asked about recovery was met with "no one really knows the answer to that" or "fatigue is a complex issue. My daughter who is a newly qualified doctor tells me that those responses are "doctor speak "for "it's all in your imagination"!!! I am now 41/2 months post SAH and over the past two weeks I have noticed a huge improvement. Hope Jim is improving too.I still get very bad neck ache every evening and the fatigue can be a real issue (GP is getting bloods done next week as he said it is easy just to attribute all problems to SAh and he wants to rule out any other causes of fatigue)but getting better all the time.Managing regular daily tasks now without any problems, have permission to drive, started swimming again but only very short distances compared to previously. Good luck with recovery, it seems hard to get any info about us few without aneurysm although all info says recovery time is the same whatever the cause. Ann

Hi and welcome As everyone has already said you are very early in recovery. Sleep problems are normal it seems and from research I have done it appears that only sleeping for 2 hours at a stretch is common, that certainly happened to me for the first few months, it has just got better the past week or so ( I had my SAH in mid January this year) I feel that the lack of recovery advice given on leaving hospital is at the root of many of our worries. When I first read the Recovery section on Salford Royal Hospital SAH website I could not stop crying because it made it so clear that everything I was feeling was totally par for the course and that I wasn't going mad or moaning and being a wimp! I was so thrilled to find that information, then I found this site and it reinforced it even more!! There is always someone here with a supporting response or personal experience to recount. I know it is hard but the tiredness and headaches mean you are doing too much.At the stage you are at I would walk to the end of the road for a little exercise and feel the headache and eye pain start after a couple of 100 yards, an elderly neighbour escorted me home more than once as they could see I was struggling! Listen to your body, it is upsetting to know that you can't do the things you want to do but better to pace yourself slowly, be patient and accept that life will be in the slow lane for a few months at least. Emotions will run amok, tears, tiredness, headaches, neck ache, eye ache, limbs that don't always do as you want etc etc. Things will get much better, especially with the support of some of the long standing people on here ( I am a relative newcomer too) Hope you can have a more peaceful day tomorrow. Ann

Hi Diane Really sorry to hear you have had a setback, it seems we take a major step forward and then have to step back again.After reading of your exploits I went swimming and slowly built up over a couple of weeks but have done too much and back to square one again this week!! One thing I have seen is a "medictag" which is a little USB device with all your info on it which seems good for if you are ever taken to hospital. Just google and you will get it srtaight away including an Australian ordering service.Obviously there is also medicalert but that seems a bit expensive but is world wide and recognised everywhere. Good luck Ann

Hi Marie and welcome Glad you were diagnosed quickly and you have lots of support. I had my SAH about 3 weeks after you so at a similar stage of recovery, although I know we are all totally different and recover at our own pace, frustrating isn't it? Can't believe the things that have made me weepy,silly stories in magazines, soaps, the news, even Jeremy Kyle,(you can see what a sad life I am leading at the moment!!!) you are not alone! As you know it is the terrible fatigue that is so debillitating.I also find people constantly saying "well, at least you are still here" is often not ALL that helpful. I work and also volunteer at a Hospice and I found it amusing when I went to try out how I felt working for just an hour last week when several people said " Bet you keep getting told that you are lucky to be alive, it isn't helpful is it?" It was so clear that they were more used to dealing with the emotions of patients than most people and quite refreshing. Not TOO sure about the colleague who said "At least we can all see from looking at you that you are not feeling well so no-one is going to pressurise you to do more than you can" Mmmmmmmmmmm, confirmation that I am still looking pretty rough and tired, actually I totally agree with her it is just that everyone else keeps telling me I look fine which the mirror tells me is certainly not true, aged at least 10 years I reckon. Anyway, enough rambling! Welcome. It is a great place to get confirmation that everything you are feeling is par for the course. Ann

As I had my SAH whilst on holiday in Majorca I had little option but to fly home! I did consider boat/train route as I was so worried about flying. I went straight to the airport from the hospital but consultant insisted thet my blood pressure be lower than 120/60 before he signed my flight worthy certificate.It was only 15 days after my SAH, had wheelchairs around airport etc but everything went without a hitch despite my worries. Whilst in hospital I voved I would never fly again but have just booked a short trip for later this month as I feel I need to do it again soon to get over the scary feelings and worries as travel is an important part of what makes me happy! We had huge travel plans for later in the year but we have abandoned that, I only feel ready to fly a short distance and I am not well enough yet to venture anywhere I am not totally familiar with, I haven't been more than 5 miles from home since I got back from Majorca in January as I am too weary. Hope a little holiday sorts me out, it will either kill or cure me I suppose! Good luck with your travels Ann

Thanks Keith, that's the one, much better at putting in the link than I was! Ann

Hope the document helps you with L&G!The document re being at no greater risk (therefore insurers should not discriminate) is only really relevant to non aneurysm SAH I am afraid so sorry if I did not make that clear and have built up any expectations in others re insurance cost reductions! But I do think It would be a useful item to make available to those concerned, I told my car insurers, as I have recently returned to driving and have just received a renewal quote which shows no increase. Ann