goldfish.girl

Hi Scoobs, I haven't been on BTG for a couple of days so missed your post. I hope you are feeling a little better now? There has already been some good advice on here. I just wanted to add that 'getting over it' or 'getting on with things' took me a very long time too. Much as you want to, you can't help the anger & the tears that hit you over all that has changed in your life since it happened. I also see a neuro psycholgist who has been a huge help in coming to terms with things. Losing your job through ill health just seems like another unfair blow when you are already struggling, it took me time to feel ok about that too. It sounds like you need to have what happened to you explained more to help you understand. Are you able to contact a neuro nurse to ask or possibly if you are referred to a neuro psychologist they may be able to help you with this. I think it's fair to say that no matter how much you want to be moving on and adjust to it all, you can't force this to happen. It took a very long time for me but eventually, one day all the things that had changed started to be ok with me. I can't explain how or why it happened, it just did. Funnily enough it was after a lunch out with ex work mates that triggered a change in the way I felt about everything. I stopped being either in a rage or days of tears with things that were different & started to feel a sense of calmness about it all. Michelle xx

Hi Scarlett, I can see how scared & frustrated you are with the lack of an appointment. I agree with Stephs' suggestion that talking to your own GP about how anxious you are is a very good idea. I don't think anyone hearing the news you've had about the anneurysm would cope any better than you are. It is a scary new world after you hear this news. Without wishing to belittle your anxiety as it is perfectly understandable, it's also worth remembering that many people go through their whole lives with anneurysms that never burst. Try to keep that positive thought in mind while you are waiting for treatment. I never thought to ask for a sedative for the angiograms but I'm sure your doctor will be able to advise you on this. Although Angios are not a particularly pleasant experience, mostly due to worry & stress involved, they are not painful (in my experience). There was just a feeling of heat & some visual disturbance for me, no pain, so try not to overly panic about having one. I think discussing all your concerns with your GP as soon as possible is a very good idea. I found the MRI scan far worse due to the claustrophobic feeling of being inside the machine, I'm planning to ask for a sedative for the next one! Take things easy & if possible work out a plan for someone to come to the GP with you to remind you of all the things discussed & decided at the appointment. It's often difficult to take it all in when you are worried & anxious. Michelle x

Hi Scarlet, That is what i thought I knew. All of mine have been brain angios (where they go in through your groin to look at your brain). All of these involved iodine being injected into the groin artery, so I have been told, after asking relatives since reading you post. I have also had an MRI scan using 'dye'???? I can't explain that apart from being told before I went in the scanner that they might inject a dye through my arm that would feel warm as it went in. It did. Have you been given any care plan or dates yet? Michelle x

Hi Scarlett, I'm sorry I can't answer your question about did I have a brain angiogram or a CT angiogram. I don't know what the difference is between then? I have had 4 (possibly 5) angios done. I don't remember all of them but I do know some used a dye, some didn't. Sorry I can't help more. Perhaps the dye was with the last MRI scan I had, I'm really sorry I just don't remember it all very clearly. Hope you hear news of your treatment plan & place very soon. It is very worrying to sit about waiting & worrying. I think they will probably move fairly quickly now they know what the problem is. Michelle

Hi Scarlett, I can imagine what a huge shock this has been for you after previously being told that all was ok. I have had 3 anneurysms coiled and my young son has had surgery for a cyst (his was sub arachnoid not on pituitary gland like yours). Although it is hard and very scary for you right now, the positives are that these problems have been found before any major damage has been done & will now be treated. Hopefully things will start to move faster now that a diagnosis has been made and you will soon have a clearer idea of what will happen & when. Sorry I can't help on hospitals in your area, I'm in Scotland, but hopefully Lin-Lins experience of her hospital treatment will be reassuring for you. Good luck, Michelle

Brilliant news Fern The relief is enormous after the stress & fear - you've done it, it's over. Take time to recover and then bounce back Michelle xx

Hi Vanessa, Good to hear you got thoroughly checked out & all is ok. Like others have said, I get dizzy, clumsy and disorientated with major head pains when I am tired or have done too much (even a few years on). All I can say is that as time passes, the fear of it happening again does go. I can feel really bad with a massive headache but understand that it is not like the SAH headache. You will get there too, honestly. Your comment about passing the A & E department struck a chord with me. It was 6 months later that I drove past the local park on my way home from work - the park has nothing to do with my SAH and I have no idea if I even passed it in the ambulance (there are two routes that it could have gone to the hospital). For some reason, as I drove past it, 6 months later, I though 'Oh my god, I had a brain heamorrhage' (I'm aware this is not technically correct as a diagnosis ). I felt like the air had been whacked out of me. I was so shocked at the realisation that I was shaking. Maybe there's an awareness at this stage of what you have been through & how lucky you are to be here??? Who knows! Perhaps this has been a wake up call that you could do with scaling things back a bit, not for ever, just for now? Good luck Michelle x

Happy 1 year anniversary Steph & Wem You have done the hardest bit and it will all get easier now. Here's to the next year! And all the others that follow! Michelle xx

Hi Amy. I share many of the points already mentioned here. I left hospital having no real idea of how seriously ill I had been. There was no support put in place. I was signed off work for 3 months & told not to drive for 3 months (I wasn't told I had to inform DVLA and I believe this happens a lot). I knew I'd had an operation and expected to recover from that and be exactly as I was before in a matter of weeks. I was put in touch with Momentum/Transitions 2 years later. I learned a huge amount from them and slowly began to understand that I wasn't going to fully recover. They also told me about BTG where I have met others with similar issues which helps us feel that we are not the only person feeling isolated, scared & confused at what has happened to us. I think one of the biggest problems is that you are not told you may never recover some of your previous abilities, like memory, cognitive skills etc. I realise that telling people this in the early days may stop them from trying to recover as much as they can as they might feel like giving up. But the realisation further down the line is a very difficult thing to come to terms with. I also think that there is a lack of understanding, including from GP's & Benefits agencies that these difficulties along with headache & chronic fatigue do not always get better and can be massively life changing. There seems to be a general opinion that after a year or two you are fine (for a handful of people this is true, not for everyone unfortunately). I think a lot of us have also found that GP's try to find a different explanation for the on-going tiredness. There seems to be a wide spread lack of medical information on the long term effects of a brain injury and until this is addressed I don't see how people leaving hospital are ever going to be fully aware of what they are facing. Having said that, I do think there could be much more realistic information made available to patients and their families when they leave hospital. Good luck with your research work. Michelle

Hi Fern, I had 2 large (??) annies coiled at the time of my bleed. They found a 3rd during the operation and I was given the choice too of having it monitored or further surgery to coil it. I asked the surgeon what he would do if my 3rd small anni was in his head and his response made my decision for me - he would have the coiling done, being fully aware of all the risks which he assured me were small in comparison to another bleed, even from the smaller annie. I would not have coped well with the worry of another bleed & I have never looked back on this decision with anything but positive thoughts (scary as it was at the time). Coming round from the op and the feeling of relief that it was all over - and the threat deleted - was a huge relief after all the worry from finding out there was another wee blighter waiting to cause me another problem in the future. The op went so well that I asked to go home the next day and was allowed to do so - straight from HDU, no general care ward required Good luck Fern xx

Hi Bluescat1, nice to 'meet' you here! Is there a blues music (which I love!!) theme to your name? I was in a neuro ICT/HDU ward too. I can't imagine how it would be in a general ICT/HDU as there are so many neuro signs for the staff to look out for without looking out for all the signs of other illnesses too. Scary stuff. Those staff really earn their pay!! I have to say, though, that I would not want them to be updating my girlfriend/boyfriend/parents/kids/or anyone else during the procedure I would be shouting 'step away from the phone and concentrate on me' Good to hear that all is going well for you now Michelle

Hi Donna, I'm at the same point as you time-wise (5 years in July). I also found at at my last MRI (it was also my 1st as I'd only had angiograms till then) that I am very, very claustrophobic. I go for another in July this year & already feel like I can't breathe just thinking about it.I don't want to go back in that machine & I worry that as I didn't stop smoking, there will be something new for them to find. I plan to ask for some kind of sedative this time. I worry, I know I need to change my lifestyle, but right now I just don't know how to. I can only deal with each day as it comes. I think we also 'spoke' on here before about flying? I have only flown a handful of times in my life. I don't like it. I flew last year for the 1st time since SAH, I still don't like it but it was no worse than it ever was before SAH. I took my 2 boys on a holiday in the sun, this was the first time I have ever been able to afford to, my youngest is now 12, my oldest is 22!!!! Worth every second of the flight to have those memories & photos to remind me of the moments I forget. I know that you will feel the same after your holiday . For me the dizzy, off balance feeling is regular but not all the time. The headaches and the fatigue are every day. I have found that once I stopped fighting to beat them & be BETTER and started living my life around these issues that it has all gotten so much easier (although my life, especially my social life, have got a lot smaller & quieter ). I still hope that I will wake up one day and they are gone. Maybe that will happen, maybe it won't. Until then I have to work around them, not fight against them. It sounds like such a simple solution. I know it's not both financially & emotionally and it's what I have to do for now. I'm happier on the whole since I accepted this. Michelle xx

Don't even get me started on the 'sporty' exhausts which have to be warmed up with the in-car stereo in competition in the summer, never mind frozen winter days - I have a teenager opposite Normal car warm up is bad enough!! As for my joined on to my house neighbour (who is 50+) with his music & xbox while his wife is at work Tv programs where they cheer, clap & shout at intervals get turned over quickly...........and why do the adverts in between programs have to be soooo much louder than the programs are???? So pleased to know I am not the only 'grump' around Michelle xx

All noise drives me INSANE!!! People outside running their cars to defrost them is my current nightmare, it has to be done but grrrrr it drives me crazy. Dylan gets told to stop moving about his bedroom if I am sitting in the kitchen (directly underneath) Noise of any kind sends me over the edge. I avoid some friends some days because they have loud voices & I cannot cope with being near them. Trying to think, write or have a conversation with any other noise around is just too hard & too confusing and makes me feel quite stroppy. I am hoping to become more lovely to be around again one day Michelle xx

Hi Dawn, This is something I struggle with too. A couple of tips that might help are: When I start cooking, I work work out all the timings of when to put each different pan on (or thing in the oven) and write the times & tasks down on a post-it note. I then discovered that this only works if I am not distracted - I have to sit in the kitchen with the note in front of me!! If I am cooking and have people round that I am chatting to the post-it doesn't work at all so I set the alarm on my mobile for each task. When the alarm goes off I can check the post-it list if I can't remember what task the alarm was for. Then I set the alarm to go off for the next task on the list. This works brilliantly As with most things post SAH, it's not about being better, it's about finding ways around what we struggle with. Hope you will be cooking many more meals & feeling more confident each time you have a success. I'm sure Andy will be enjoying your efforts!! Michelle xx

Ah ha! I knew there would be cleverer people than me knocking about Good investigating Daff! And thank you Sami for working out how to do it & making the nomination The different groups just confused me (nothing new there!). Michelle xx

Having seen info on here & elsewhere about nominating people for the Life After Sah/Stroke Award 2013, I have the most deserving person we all know in mind for a nomination I have clicked on the 'Nominate Someone' link but there are too many categories & too many questions about that individual that I am unable to answer. I am sure that most of the answers could be found in past posts but that is a research area I am not capable of undertaking successfully. Also, if you choose to nominate the person for their voluntary work in helping other SAH/Stroke survivors, they must have a stroke association membership ID????? I think every one of us on BTG would like to nominate Karen for all the years of work, compassion, support & information she has shared with us and if anyone can do this research to show her how much she personally and her monumental support work is appreciated by so many worldwide please help me to nominate her for the recognition we all know she deserves. Sorry Karen, I know you will be embarrassed by this post and if I could find a way to block you from reading it, I would've done so! Anyone know how to block the administrators on here??? Michelle x

Hi David, That's a very difficult question to answer. Reading the replies, though just reinforces that everyone is so very different. I went back to work after about 9 weeks (while waiting for a 2nd brain operation). I fought really hard to get my life back to pre SAH levels for 2 years, unfortunately I never got above 50% and eventually gave in and was pushed by an unsupportive manager at work. As well as working I was a single mum with 2 boys, one of whom has a brain condition too, I had a house to run, a dog to walk and it just didn't work out. I had worked all my life until about a year ago. I would say i'm now at 70% & I'm happy with that for now. I would also say that since early December I have stopped sleeping every afternoon which is a MAJOR break through and has taken 3 and a half years to happen!!!! I didn't plan to stop the afternoon naps, it just isn't needed every day now. Improvement can still happen this far down the line (albeit much more slowly) but this is a HUGE change and maybe it will lead to my personal percentage rising??? Interesting to read this thread, thank you for starting it. Michelle Ah ha David, you are right! I got off my lazy cyber bum and searched your posts from last January and the above ^^^ is what I replied then I may have been a little premature to declare the declare that the afternoon naps were over BUT they are still not every day. Although still a feature more regular than I would like, some days a lie down for a couple of hours (without actually sleeping) can keep me able to do the other stuff later on like cooking tea & just being here & communicating with my son after school. I think 70% may still be accurate and I now have a plan to ask my nearest & dearest what they think of this figure and if they think I have improved even more since then. Thank you for the reminder - I'll let you know the update from those around me Michelle x

I don't remember this from last January David but hopefully one of the computer boffins will pop up and provide a link. Maybe I didn't comment last year???? Who knows Every day is so very different. Overall I would not expect to be very different from a year ago BUT I was at 3 & a half years post SAH then (4 & a half years now). Earlier on I'm pretty sure there would've been huge improvements in a year. Michelle x

Hi David, Remember that this time of year can make the most optimistic of people feel a bit flat & dissatisfied with life. It's cold, it's dark, just a bit rubbish really BUT spring is coming! A dog like Tyler could be just what you need. Even when someone can't say words that make you feel better I find it helps just to know she's there & concerned and only wants me to be happy again. A bit like me trying to find something helpful to say to you.......Although, unlike my dog, I promise not to trip you up every time you try to move with my overwhelming concern & need to be at your side Feel better soon Michelle xx

The courage that your wife (and yourself) have shown is amazing. I don't know of anyone else who has gone through so much. The 'one that got away' will hopefully be the one which never causes any problems. I was told that there are anneurysms which never cause any trouble & never burst, they are only ever found after death by other causes. To recover from a coiling & two craniotomies is more than any of us could imagine ever having to do. To remain happy after them is a huge blessing and a sign of your wife's positive, fighting spirit. Best wishes to you both xx

Hi Dave, I remember reading about your wife a while back and being horrified at the thought of so many. She has had way more than her share with anneurysms. Have all 12 now been successfully treated? It's good to hear she is doing well now. Michelle x

That made me laugh Wem! Us Scots have the same financial traits It was a scary thought to go, more because I get muddled with times & struggle to find my way around unfamiliar places (airports were particularly bad) but my older son is 22 & acted as the dedicated adult for the trip. The holiday was fantastic & well worth the effort & worry to go away. And I think we all deserve some fun times after SAH! Looking forward to hearing where you are going Michelle x

Hi Wem I went abroad last May. I got holiday insurance through the Post Office (I got lots of advice from Penny our Explorer on this!). The insurance for me & my boys for a week was about £16. With SAH declared even though it was over 4 years ago & because I take blood pressure medication the price became £80+ for the week. Expensive but at least they were willing to insure me still! Michelle x

I think SAH is a bleed around the surface of the brain (in the membranes that surround it) rather than a bleed within the brain (which is what I think you're saying you had)? There will be far more informed people on here than me!! Never give up hope Bev. You may well get very much better than you feel right now, there may be no related risks to a further pregnancy and you will get the green light to go ahead as soon as you like Lin-Lin has said that she has been very lucky to have a lot of family support with her new baby & that may be something that you have too? Lovely to have these plans, hopes & dreams for the future, and thinking of them is probably just the boost you need to make the start of a new year a more positive, happy time Michelle x