Shanti

Hi Anne I too have the same problem but on my right side (3rd nerve palsy like Tina was behind the right eye). I always double check when I come to a road junction, its as if there is a slight delay before I correctly assess the state of the road. I'm also careful to clasp things properly with my right hand otherwise I end up dropping things (sort of as if I don't have strength in my right hand anymore). Big hug Lesley xxx

Hi Karen Just read your reply and I must get my iron levels and calcium levels checked out. (I also had seizures when I came round after the coiling operation itself in ICU, but thankfully only twice and never since). My right ankle has developed tendenitis and I'm hobbling around. Also my wrists are aching all the time - it just might be related to those Nimopodene tablets we all took which are calcium inhibitors? Also noticed I'm definitely anaemic. Whatever, I'm going to have a word with my GP. You are always a mine of information! What would we do without you? Love and hugs Lesley xxx

Hi Shiree Oh dear, know how you feel. Its only to be expected that we're going to have the odd despairing day. Our lives have changed, sometimes irrevocably, and we have to adapt. You're not alone. If it helps: I went to bed last night and cried I got up to a most beautiful sunny day this morning and cried Still feel very shaky emotionally and not sure whether to cheer up and laugh or have another good cry But there is light at the end of the tunnel: you'll be amazed but you will have better days, and hopefully the headaches/dizziness will get better. Its been a very long recovery for most of us. I was told that the debris from the bleed (or operation: clipping in some cases) takes time to drain from the brain. In my case it seemed to drain into the sinus area around my right eye and down the back right hand side of my neck, could have sworn the large artery was being pulled tight at times. This produced sharp knife like pains and shooting pains down the back of my neck which were quite frightening. It has been mentioned on here that a lot of the bleed drains into the spine. Each one of us seems to have a slightly different symptoms whilst our body recovers. I rarely get these symptoms now thankfully. I seem to have more problems with my emotions and coping with the life changes it has brought now. But I'm getting there. (I got my driving licence back after 6 months and am now driving very slowly locally - this gave me a huge boost in spirits and helps tremendously because I can at least go out on my own when the walls in this house close in on me - so try to concentrate on resting and giving your body time to recover - and hopefully with time you too may be able to drive again). Sharing my story and progress with other SAH survivors on here has helped so much, it gave me confidence that if I held on and allowed my body to recover at its pace (not mine) things would change albeit very slowly. And they did. Keep posting: you've got friends here. One of us will always respond and usually at least one of us has been through something similar at one time or another. Just to be safe though: if the pain is really bad or you have really strange symptoms that you haven't experienced before I would phone your GP and insist he sees you to check you out. Janet's made good comments re keeping yourself well hydrated and checking our the drugs available with your GP - we've all been told to do this and it does help. Karen our leader: who bless her started this website which has saved our collective sanity says that we haven't lost anyone on here yet: and I think yes, we've come this far, we are the lucky ones: we've survived. It might be a long journey to recovery, but we will get there and you couldn't have nicer company on your journey Big hug Lesley xxx

Hi Shiree Like you, I was underweight before my SAH and my blood pressure was very low too: 90:60. They kept my BP up too in Intensive Care to prevent vasospasm. I think when they go in, as you put it, through the top of your leg, they were going in through the femoral artery, which is the main artery they use to go in and coil an aneurysm (well it was in my case anyway). Big hug Lesley xxx

Hi Shiree/Laura I've been getting that tipsy (dizzy) feeling again just lately. Especially when I lay my head down on the pillow or first thing in the morning, I sit on the edge of the bed until it passes a little before I get up. Personally I think perhaps its something to do with my blood pressure dropping to its pre SAH rate of 90:60. When I was having the SAH it shot up to 125/90 which was a lot for me. A few weeks back my GP said it had dropped to 105/80 (or something like that). Shiree I noticed on another post you'd said you had low blood pressure pre SAH. Perhaps it might be a good idea to ask your GP to check your BP for you? I also think its a good idea to always check out any new symptoms with your GP. If nothing else, it will put your mind at rest. Big hugs Lesley xxx

Hi Shiree I'm 8 months post SAH and just starting to feel like my old self. It did take at least 4 months (if I remember correctly before I could stand the light and the double vision had righted itself in my right eye, so I took off the pirate's eye patch). But strangely enough:these past few weeks, I've started to feel very dizzy when I put my head down on the pillow each night and when I first wake up in the morning. Haven't had those symptoms for months and months. I haven't gone back to work - semi retired (I'm 61) but starting to wonder if I could work part time in the winter time as money is a little tight around here! I know I am very, very lucky to have survived and have recovered remarkably unscathed. We all recover at different rates and only you can decide when you feel well enough to tackle certain tasks at home or even to return to work. Big hug Lesley xxx

Hi Pam, Janet, Rampmama, Sami et al I'm lost for words at times reading some of the stuff on here. Big hugs Lesley xxx

Hi everyone Yep, me too: ginger biscuits and a cup of tea or a glass of dry ginger ale always seems to sort me out. Other reason for feeling nauseous with me is my liver so I drink a glass of tonic water with some lemon in it. Big hugs Lesley xxx

Hi Jane, Joan, Janet and everyone Mentioned it at the eye appointment they just said it might happen sometimes if my eye is overtired. There is still some residual damaged behind the right eye and also they said my peripheral vision isn't too good in that eye and will probably not make much more progress. But over all they are very pleased with my progress so far. They still thought it was miraculous that I'd got my sight back in that eye (after third nerve palsy etc) and that I was driving short distances. Like Janet says, go and get it checked out. Big hug Lesley xxx

Hi Elaine Paul sleeps with his eyes half open sometimes. And yes, it is spooky. As far as I know my eyes remain tightly shut. Big hug Lesley xxx

Hi everyone Interesting bunch of replies. (Just waiting for Paul to come home 'cos we're off out in a little while). Yes, know what you all mean. Some people have disappeared but others (not necessarily those I considered to be ultra close) have come forward and have been fantastic. And also of course meeting people on here. Looking forward to meeting a lot of you on 26 July at Sarah's in Northwich. Had a few more days to ponder it all, and I suppose I'm travelling a different road now and some of my old friends are still on their old journeys, going in a different direction. Love and hugs, don't know what I'd do without the feedback on here... Lesley xxx

Hi everyone Just copied this from a reply I made to Wayne re loss of motivation. Just thought it might be relevant to some of you: I think we all have felt sometimes that some people around us think everything is now okay with us because we look okay. I've been really down about that particular subject all weekend. Watched a teary DVD on Friday night and realised that people who got in touch last Xmas with me, were filled in about the seriousness of what had just happened to me, expressed all these oh dears etc, and most of them have never phoned back since! These are people I thought were close friends. These are people who in the past I've held some of their hands for months on end whilst they we're going through stuff of their own. Big learning curve. Sometimes I wonder if I really knew some of them. Only a very few people have been there for me. I think in the final analysis: some people I thought of as close friends, were actually social friends and that when I could no longer join in certain social activities with them, they disappeared (out of sight, out of mind?). Or conversely they were people who I helped a lot through their bad times but either don't see or don't want to see that I might need support now. Don't worry anyone on here though, I've got my head around it and have bounced back up this morning. Just life isn't it - sometimes. Has anyone else noticed this? Hugs all round Lesley xxx

Hi there Yes, me too. Over the past week my right eyelid has been a bit heavy again. Once or twice I found that I'd closed my right eye and was watching tv with one eye. I was tired but hadn't realised the right eye had closed. This is new though don't remember it happening before say, 7 days ago since I took the right eye patch off in March or April (can't remember now when it was). Have eye hospital appointment this afternoon so will mention it. Big hug Lesley xxx

Hi Wayne Oh dear, join the club! Where people around us think everything is now okay with us because we look okay. I've been really down about that particular subject all weekend. Watched a teary DVD on Friday night and realised that people who got in touch last Xmas with me, were filled in about the seriousness of what had just happened to me, expressed all these oh dears etc, and most of them have never phoned back since! These are people I thought were close friends. These are people who in the past I've held some of their hands for months on end whilst they we're going through stuff of their own. Big learning curve. Sometimes I wonder if I really knew some of them. Only a very few people have been there for me. I think in the final analysis: some people I thought of as close friends, were actually social friends and that when I could no longer join in certain social activities with them, they disappeared (out of sight, out of mind?). Don't worry anyone on here though, I've got my head around it and have bounced back up this morning. Just life isn't it - sometimes. Re life having stalled. Know that feeling too. Because I'm not working at the moment, feel like everyone has gone off to a party I wasn't invited too. And it is hard to get motivated when you've got days ahead of you without anything definite planned. But I am getting better at that, though do have the odd day when I just can't be bothered. Think it helps that I've got the house to run, that keeps me reasonably busy and focused. Big hug Lesley xxx

Hi Ann Just read your story. You were very, very lucky. I was too. In fact I think most people on here consider themselves very lucky too. Wishing you the best in your continued recovery. Big hug Lesley xxx

Hi there Yep, me too. I suppose we should recognise that we're overtired, exhausted when it happens and just stop and rest. But yes, I know, sometimes we still want to finish something or other and plough on, even though we know we should just sit down and be quiet. I also notice when I've pushed myself too far and I just want to finish a chapter of a book or the paper, that when I look back I can't actually remember a thing I've read. (Just had to reread a whole chapter of a book I'm in the middle of reading, 'cos I couldn't for the life of me remember why 2 characters were suddenly involved in the plot). Not sure this paragraph makes sense, but sure you'll catch my drift... I'm off now, I'm rambling (that also happens when I'm tired) :? Big hugs lesley xxx

Wonderful news Donna. That must have taken some of the worry off your shoulders. I know you've been very worried about some of the symptoms you've been having, but hang on in there sweetheart. The healing process is long, takes patience and lots of time. You will have all sorts of weird symptoms and feelings, but when you look back in a few months time you hopefully will be amazed at how far you've improved and come since you left hospital. A few months ago I never dreamt I would be without my pirate's patch and would be able to see without double vision out of my right eye, nor that I would be driving short distances and would be going out to shop on my own. We're all here for you whenever you need us. People like Karen and some of the older members on here (in experience not age I hasten to add) have a wealth of experience and knowledge on recovery after a SAH. And never once has anyone posted on here with a query without someone quickly jumping in and offering support. Big hug to you, onwards and upwards, have a lovely day Lesley xxx

Hi Libby I did post you a long reply a few days ago, but it seems to have mysteriously disappeared. Oh well. I'll try again... I too have a smaller aneurysm which I've now been informed by my neuro surgeon is only 2mm (they only operate if they are 5mm or larger at Hope Hospital or obviously if they've ruptured and are bleeding). And that as its on the middle cerebral artery and would have to be clipped it would be more dangerous at this stage to intervene surgically than leave it and monitor it. (In your case of course your surgeon has offered to clip yours. So perhaps I would go for it if it was offered. I think it would depend on where the aneurysm was situated and whether or not the neuro surgeon said it would be more dangerous to operate than to leave it alone and monitor it as in my case.) I subsequently went off to query this with my GP. He pointed out that most aneurysms are congenital, meaning you were born with them, and usually they only burst in middle age in most people. He said post SAH most of us make and stick to healthier lifestyle choices and our blood pressure is better monitored and in the first couple of years hopefully we will be given MRI scans just to make sure, so the chances are slim of a second smaller aneurysm growing and bursting. I have been reading Jane Lapotiere's Time Out of Mind (Karen kindly forwarded it to me) and on page 206 she states that her neurosurgeon told her re second smaller aneurysms 'you're less of a risk than people walking around who don't know what's going on inside their heads. Only twenty per cent of the half a per cent of people who have second aneurysms have them burst. Karen: is it okay to quote from a book on here - edit it if not - thanks. I stopped worrying completely at that point. After all I've probably had the aneurysms since birth (I'm now 61) so the chances are that the second one won't have sufficient time to develop in the time I've got left (15 to 30 years if I'm lucky) to become too dangerous (also of course I know the symptoms now of a pre SAH (could any of us ever forget!) and would immediately SHOUT for HELP so the situation may not be so dire as the first time). Hope this helps Big hug Lesley xxx

Hi Ursula Sorry I can't help either. Obviously the neurovascular team must look at your blood vessels/veins/arteries, blood pressure etc. Other than that, I'm not sure. Personally I'd ask my GP, because I think he will have had a copy of their letter and perhaps his version has more information. Also, if it was me, I would definitely attend the appointment on 16 July - its so hard to get these people to see you - I wouldn't want to miss an opportunity for more info on my case. But first of all, yes, I'd speak to my GP. Big hug Lesley xxx

Hi Cal Me too. I guess we all get dizzy etc if we overdo things. You just have to take immediate action and sit or lie down or lean against a wall otherwise personally I get a tightness in the chest and feel nauseous (can't spell this morning sorry) and then start to feel faint. Like John etc say: listen to your body its trying to tell you something: its cream crackered and wants you to STOP RIGHT NOW. Big hug Lesley xxx

Everyone here seems to have problems with sleep patterns. I usually go to bed around midnight, read for an hour then find my eyes closing. Always wake up around 4 am and usually have to get a cup of tea and a biscuit and read a little more, then I'll drop off again. Had no problems yesterday though and slept in the afternoon in the garden for an hour (went out like a light and have sunburnt my face). Went to bed midnight and didn't wake up until 9:30 am this morning. When I'm worried about something is when I can't sleep at all sometimes. Or if I'm steamed up about something (emotional lability) then there's no way my brain will switch off. Doesn't serotonin or something effect sleep? Anyone know? I know levels of serotonin take time to sort out post SAH. Think it effects mood etc. Sorry can't remember, I'm rambling... Just copied this from wikipedia: In the central nervous system, serotonin plays an important role as a neurotransmitter in the modulation of anger, aggression, body temperature, mood, sleep, sexuality, appetite, and metabolism, as well as stimulating vomiting Lesley xxx

Hi Donna Hope you get some news soon and that it puts your mind at rest. I know the waiting is horrible. Hold on to the fact that you've survived worse and you're still here! Big hug Lesley xxx

Hi John I think like Janet that they don't think anything too untoward showed up on the scan. But when I just got a very unspecific letter after my MRI scan recently, I emailed the secretary (her email address was on the top of the letter) and expressed my concerns. I got a letter back about a week later which explained in greater details what their findings had been. So either email or write a letter (I think you get more than a phone call, they don't seem to discuss much over the phone in my experience anyway). Hope you are feeling okay. Big hug Lesley xxx

Hi Keith No I don't take Nurofen and Ibroprofen together (I think I take Ibroprofen when I've got a problem like my recent tendenitis in my ankle). I know I did take Nurofen and Codeine together a few weeks back when my headaches were really bad and that seemed to work. Hi Sami Thanks for the info on fizzie drinks. I do get weird looks in supermarkets 'cos I'm always reading labels. (Most of the time the price tag to see if I can ****** afford it!). Ribena sounds nice, think I'll get a bottle in later. Why does the food industry have to be so ****** complicated? Sorry swearing again, but they would make a saint swear! Why can't they just put SUGAR in stuff, why does it have to be all these weird derivatives of aluminium and goodness knows what else. Who the hell sits in an office and says 'I know let's use this poison instead of Sugar, if we only put so much in, we probably won't poison too many people and only those probably who drink too much of the stuff. But heh, those that drink too much have probably helped tremendously with our profits. What a conundrum. We'll kill 'em all off in the end.' See what I mean? Surely it can't be only a few of us that take exception to the food industry poisoning us? Sorry to rant. Love and hugs Lesley xxx

Hi Like Tina and Jess, I too get neck and shoulder pain when I've been locked into one position using the computer for too long. I too suffered a lot (even without using the computer) in the early days post SAH but as the months have gone by, I've noticed they have become infrequent. I guess I'm just one of the lucky ones. Hope you feel better and that the pain has now passed. Whatever, don't ever feel stupid for going to get something checked out. After what you've been through, it would just be being careful and vigilant. Big hug Lesley xxx