KelBel

Hi Juliette It's not unusual to worry about these things. I have felt a bit odd now and again for the past two weeks; at work we have moved desks and our floor is being refitted and we have no toilets at the moment, so have to go up or down to other floors. I have been going down a floor and when I have walked back up the stairs again I have felt out of breath - almost as though I have a chect infection and can't get enough air in my lungs (very much like you describe) but 10 mins later I feel okay again. I do go to the gym a couple of times a week so am surprised that walking up and down one flight of stairs can make me feel this way!? And today I have a dull ache in the back of my neck, I feel tired and I think I may have overdone it at the gym last night! I think it is our bodies way of telling us to slow down a little... It is always worth getting checked at the Drs if you have any worries though. Take care Kel x

Hi Jod-dee Happy 2nd anniversary!! Well done on such a fab recovery. Take care Kel x

Hi John Wonderful post! You have done so well in your recovery. Keep up the good work, and well done for recognising and being able to drop to a 4-day week. Take care Kel x

Hi Ian I have completed the questionnaire for you - it would be interesting to hear the outcome Rgds Kel

Hi David Welcome to the site! I had an aneurysm SAH and was coiled 7 days after the initial bleed (as the hospital got dates wrong...). I was in hospital for 10 days in total (6 days post-op). I was back at work 11 weeks after my op, likewise because of financial reasons, and was allowed to do a 2-week phased return (lucky me). I did however use up holiday owed to have extra days off when I started full-time hours... and boy did I need it!! I don't actually know how I managed to do the hours I did It was a daily struggle, plus I had issues with a colleague at the time also. I suffer from light sensitivity and it was worse after the SAH to the point I needed all blinds around me closed, as it could cause migraine symptoms. My colleague objected to this on a daily basis and I ended up counting the days until he finally left the company...(that was a couple of months pain later though!). Every day I would get home from work and fall into bed for at least 2 hours, then cook some dinner, collapse on the sofa and then go to bed... it wasn't much of a life initially, so I struggled to feel grateful for being alive to be honest...but over the weeks and months you should notice things getting steadily easier. My manager was supportive to a point, and I had to have my pay cut for the hours I was not able to work but I think they could have been more supportive. I recently complained and the answer was that my GP did not provide enough information about my symptoms. He just put Subarachnoid Haemorrhage on my sicknotes/fitnotes. I had provided them with further information though. I look well enough now, so it feels as though everyone has forgotten what I went through, and can’t grasp that I still suffer in some ways. That seems to be a common thing though, because we look okay on the outside, no visible scars for anyone to base their assumptions on! Good luck with your return to work, and I hope you find some meds to ease your headaches. Take care Kel x

Hi David I always worry about becoming addicted to certain medication. I had an aneurysm coiled after my SAH and was discharged from hospital with; Nimodipine - to take every 4 hrs for 21 days (to prevent further vasospasm, that I had during my op) Along with Tramadol and Paracetamol for the headaches, of which they were daily and varied. I read up about Tramadol and decided early on to limit my intake as much as I could handle that. I did not want to become addicted to it. I took paracetamol daily for months though. It is always worth discussing your medication with your GP, to see if there is anything else that could help. I am sure our bodies must get used to certain medication after a period of time, thus making it less effective?! I hope you manage to find something to help ease the pain you are suffering Take care Kel x

Hello MollynJosie I agree with the others; the hospital must be able to arrange a meeting face-to-face with the consultant to discusss the procedure in full because of the potential consequences. You need to be in possession of all the facts and statistics. It is totally unfair to leave you alone to think this through and try to make a decision based on a phone call. Keep us posted Take care Kel x

Hi Ryan Glad you have now found this site! You will find that BTG is a source of great comfort, insight and understanding. It has been a god-send for me too, as I felt I was going mad when I came out of hospital, and it is so comforting to find out that others have felt the same and they understand how you are feeling. As others have said - lots of water and lots of rest are key to allowing your brain and body to recover well. Take care Kel x

Hi Zoe It is good that everyone is still on speaking terms, but it is such a shame that this is the way it has to be for you. I don't envy you having to make that decision, and I congratulate you for having the strength to do so. You are moving out so the situation does not get any worse for you, the kids and for Richard. I am sure once his parents move in they will soon realise just how big and difficult a job the caring is. Hopefully they will be able to cope as well as you did, and their relationship won't suffer. I am sure they will have a new-found admiration for you. Take care of you and the kids and I hope things will become brighter for you soon enough Kel x

Hi Juliette I was also very anxious to the build up to my 1st anniversary. My SAH happened on the night of my works Xmas do and I was nervous about attending it a year later. The xmas do landed on the day before my 1st SAH anniversary so it was still difficult, but I went. I drove alone to the venue, I drank only water all night long and I partied all night long, lasting way past what I had envisioned I would be able to handle and didn't leave there until 12:30! I don't think I have ever danced so much at a party! My mate had a few tears for me at the end of the night (she was drunk ) and it caused me to have a few tears too, but I made it through and everything was fine, and it felt good afterwards that I had managed to overcome that fear. We are not all the same, and we all have to do what we need to do to get through it, but it is not as scary as you think it might be. Good luck getting through the other side of that first milestone year. Kel x p.s. I didn't actually end up celebrating my 1st annie-versary as no-one seemed willing

Hi Viv Congratulations! The photo looks great, well done Kel x

Hi Gaynor Welcome to the site! Glad you have found us I can relate to the occassional feelings of 'why me' and 'is it such a good thing to have survived this?', as I felt that way in the early months when I was struggling with this new slightly broken version of me. But, things do get better. You don't notice the little changes at first but over the months you will notice how much more capable you are. We may not get back to our pre-Annie selves but we will certainly learn a lot about life, about ourselves and about others as we go through the period of recovery, however long and arduous that road may seem. I have found that changing to decaf tea as well as drinking lots of water, and cutting back on all caffeinated drinks (diet coke unless caffeine free) has helped with the headaches. I look forward to hear more from you Take care Kel x

Hi Jan That is shocking that he is suffering a bleed in the same place as you. But it is amazing that he is not in pain and is his usual self. The 50 mile round trip must be very tiring for you and we all understand. I agree with Lin's idea - any family/friends who can help with the driving? Fingers crossed hubby will be okay Kel x

Hi Juliette Congratulations! I was told it was not advisable to get pregnant for at least 6 months post-sah; I would think you should be okay. They may monitor you a little closer. Like Gill said, Jess will hopefully come along later and help out a bit more. Good luck Kel x

Hi Laura Good luck with the appointment on Monday! It is shocking that nothing was said any sooner Take care Kel x

Hi Kate Sorry to hear your dad has suffered an SAH. I can relate to not feeling lucky, even though I knew I was lucky I didn't like being told it as I just couldn't feel lucky. It felt like my world had turned upside down. I didn't know when I would be independent again, and initially I didn't know how I would be able to return to work, as it was enough in a day to get out of bed, shower and change... I realise now (21 months on) that I have been extremely lucky. I have returned to work full-time, I got my licence back after just 2 months post-op. I am back to the gym and going out 'almost' like I used to. Some things have changed; I have to make sure I drink a lot (3 litres) of water/decaffeinated drink each day and steer clear, or have very few, caffeinated drinks (diet coke, tea etc). I can't drink alcohol like I used to, and although I can now handle busy noisy situations I seem to pay for it afterwards. It can feel like a hangover without having had the alcohol BUT I am lucky that I have recovered as well as I have. I had a grade 1 bleed caused by a large aneursym coiled 7 days post-SAH due to misdiagnosis, which then caused a severe vasospasm resulting in initial left-sided weakness which has resolved. I hope your dad will be able to join us on here in time and read that he is not alone in how he is feeling. You could also download and print a copy of the Brain & Spine Foundation booklet and leave it for him to read when he is up to it. Getting counselling via my work and via my GP was really beneficial for me in the early months. I would highly recommend it. I hope you hear the news you want after the next scan. Take care Kel x

Hi Mollynjosie So sorry to hear about your friend. He was obviously very ill to do what he did and it is very sad that he was not able to find someone to talk to who could help him overcome his issues. Sometimes it feels as if there is no-one there who will understand and be able to help. Bad days affect us all. Highs and lows, and everything in-between. If you are often feeling very low then it is best to speak to your GP as soon as possible and discuss how you are feeling. You may need some medication to help or you may need counselling to help talk through what has happened and help you work your way through it. You should be able to get some counselling sessions via your GP. I had some counselling via my work and the lady I saw explained that I was suffering from Post Traumatic Stress. Once she told me that and I was able to look it up and read about it, it then helped me understand that I wasn't going mad, and that my feelings were valid and quite 'normal' after such a traumatic event. I hope you find a way to work through your feelings. Take care of you Kel x

Hi Katie Welcome to the site. 3 weeks is no time at all after suffering SAH (with or without aneursym). Your body has been through a huge traumatic event and it is not possible for you to just get back to normal in a few weeks or even a few months. Your brain needs time to recover from this. Have you got family and friends who can assist with daily life - cooking, cleaning, getting kids ready and taking them to school when they go back - for the coming weeks, to give you time to recover a little more? Have you been advised to drink 3 litres of water a day? This helps ease headaches and unwell feelings. I look forward to hearing more from you, take care Kel x

Hi Elaine I can identify with what you are saying. I had my SAH 11/12/09, and was coiled 18/12/09 (due to misdiagnosis and then incompetence in taking down the details correctly at the hospital, putting my SAH date as 15/12/09…). I was in hospital a total of 10 days and then home for Christmas Day I got my licence back 18/02/10 (although I didn’t send my actual licence off, so I didn’t have to wait to get it back again I just waited for the okay letter). I done a few short drives with my mum initially and then short drives on my own. I did try to go food shopping on my own but found it such an assault on my senses that I ended up ensuring I had someone with me during the first couple of months. I couldn't do it all myself, and didn't have the energy when I got home to carry the bags up to my flat! I still find it quite tiring now, but that is on top of full-time work, gym, etc… but the lights in some of the supermarkets are overwhelming enough without factoring in crowds and noise. One suggestion is that you could try ordering bulky dry goods online and getting them delivered, then you could find a smaller supermarket which you can take a short drive to, to pick up fresh produce? If you break it down into more achievable targets and work your way up (over months if need be) to the bigger busier store. Not that you ever have to even go back to the big brash busy store! You can write it off completely if you so wish. As Riane suggested it is best to now compare yourself to how you were when you came home from the hospital, rather than trying to compare with how you were pre-SAH, as that is an unrealistic comparison. Your body has been through too much to compare back to the pre-SAH you. It took me a good few months before I realised how far I had come, and how well I had recovered. I recall at the start that it was enough in a day for me to get out of bed. Then that worked up to getting out of bed, having a shower and changing my pj’s! Then to having the shower and changing into normal clothes, with actually having to decide what to wear also… It is all about re-learning what you can do and what your limits are. You could keep a diary too, to help look back on how you were, how you felt and what you were able to do; to make the comparison to today. And you may not notice things over a day or week, but over a month or two. Try to drink your 3 litres of water each day to help limit headaches, switch to decaf tea/coffee if you can, as this can help also, and allow yourself time to heal. Take care Kel x

I have never heard of an SAH Support worker!? That would have been a huge help! Although I did speak to nurses on the Brain & Spine Foundation helpline who helped with my questions and fears, it would have been even better to have access to a qualified SAH Support worker who would have my notes and details in front of them, and know about my particular case. Care varies so much around the country as well as around the world. I also feel as though my Dr's have had enough of me...

Hi Janet Welcome to the site. Your treatment (or lack thereof) was disgusting and I hope you do feel able to follow up and continue your complaint to make them realise that mistakes were made, and the way you were treated is not acceptable for anyone. I still get annoyed now when people trivialise what I have been through. I have recovered remarkably well, but I do have to take care not to do too much, and I do get so tired that I struggle to find the right words and get a bit ratty. I am 39 not 79 so I not accept that it is just me 'getting old' as some have said. And others get just as tired as me too... really??... I think not. But we can't expect others to understand unless they have lived through it themselves. I have one friend who seems to be able to comprehend how I feel as her brother has suffered and recovered from 2 strokes. Others just don't seem to have anything to relate it to, or don't wish to try to understand it. Look forward to hearing more from you Kel x

Hi Sam Welcome to the site. I hope you will also find lots of help, advice and understanding on here. Sorry to hear you have suffered as much as you have done. I was also 37 when I had my SAH but have been lucky and recovered remarkably well. I hope you don't mind me asking, but did you have an aneursym? and if yes, what surgery did you have? Are you having any physio to help regain use of your right side? - if this is possible? Have you had any counselling via your GP? (sorry for lots of questions - I hope you don't mind) I am not surprised you are angry. It is a traumatic and hellish thing to have been through, and you still have permament reminders of this event. You have now found a place to release your frustrations and get some advice and help from others who have been through SAH - albeit we have suffered in different ways and had different severities of bleed and other medical issues. Hope to hear more from you soon, take care Kel

Hi Eric Welcome to the site - I don't appear to have said hi before... Sorry to hear you have suffered SAH also, and it would seem from your posts that stress may have indeed played a part!! Wow, you and Riane sure know how to fill your lives Did you find any time to sleep??... I do hope you continue your recovery well and find a way to ease back into your work when you are able to. I still try to ensure I have approximately 3 litres of water a day, and I switched to decaf teabags early on to limit caffeine/dehydration effects - it definitely has a major effect on wellbeing and reducing headaches Take care Kel x

Hi Samantha Welcome to the site. Sorry to hear you have also been through SAH and that you have been left with complications. I was 37 when I had my SAH 19 months ago. I did have an aneursym that was coiled. I can't imagine not knowing the cause of SAH, although there are a number of members on here who have also suffered Non-Aneursym SAH so I am sure you will get some more assistance from them. 5 Angiograms is a hell of a lot to deal with - why so many :confused: Was that all in a short period of time? Have you been referred for counselling at all? Or is it something you can speak to your GP or hospital consultant about? I found it so helpful and I know others on here have also benefitted from it. Hope to hear more from you soon Kel x

Hi Michelle I have had the dye injected during a CT scan but not with an MRi scan, which gave me a warm feeling (I felt like I had peed) and they did advise it would feel like that. I have had a couple of MRi scans now and I was also scared before the first one, however I would rather have 20 minutes of that than have to go through an angiogram again. With my first MRi I was so large that I was just within the weight limit to use the machine! It was very 'snug' to say the least. Having lost more than 2 stone when I had my second MRi it was much easier and obviously less snug! I was put into the scanner head first and went in backwards up to the top of my legs - I also had a buzzer to press if I needed to stop the scan and come out, but I felt that if I had pressed it at any time I would just have to go through it all again; so I just kept still, kept counting to 60 (to count away the minutes) and got through it. I had to keep my eyes open during both of my scans, and was not offered any music, just earplugs. It is noisy in there, as if you have your head inside a cement mixer with a load of builders banging on the outside of it with different implements! But is is bearable and is over sooner than you think. Good luck for your scan. Kel x