KelBel

""Don't drink don't smoke, what do you do ....." - (Adam and the Ants!!) Somebody please tell me thay also remember that song" Oh yes Kaz; that song always comes into my mind when I tell people I don't smoke anymore and I don't drink very often now (and don't drink much at all if I do). It's been over 5 yrs now, so luckily gave up prior to having SAH. x

Hi Lizzy Welcome to BTG! You will find lots of friendly advice here, and will be able to get answers to the many questions you might have... Everyone seems to have a number of the same symptoms following SAH, whether they have been coiled, clipped or do not even have an aneursym to explain the bleed. Some suffer more after-effects than others, but we are all united in providing the best possible resting place for all survivors As others have said lots of water is key to helping recovery, and reducing the headaches. I switched to decaf tea following my SAH, and try not to drink many caffeinated drinks (diet coke etc) as I find it makes me feel 'muggy-headed' if I do. If that makes any sense?! I rarely have alcohol now too, just the odd 1 or 2 now and again, depending on the situation and who I am with. Dr's may say recovery takes 3-6mths, 12-18mths, 1-2 yrs, etc etc... we all seem to be told something different along the way... I was told up to 2 yrs. Well, I am now just over 2 yrs post-SAH and although I do manage to do a lot, I am not the same as I was before, and I no longer expect to be now. Any questions - just ask; either within this thread, or visit the Green Room, or even send a private message to one of us. Take care of yourself Kel x

That is so strange, as I have a sensitive dip or 'dent' in the top of my head; although I think that may have been caused by my car boot lock, when my boot fell on my head about a month before my SAH :/ I have asked a few of the dr's and they think that bears no relation to having the SAH though. I still have issues with light and noise sensitivity but not quite as bad as the early days post-sah. I had to put my glasses/sunglasses on to watch tv initially as I found it too bright. I never used to eat celery but am starting to quite like it chopped in a salad now, other than that I can't think of anything else food-wise... I did have an aversion to chocolate for a few weeks post-op. Not sure why, but it soon faded... Kel x

"- Do you also have episodes of anxiety and sadness? I often do at night and have difficulty sleeping. My mind tends to go over and over what I can remember of the experience. - The area of the incision on my scalp feels tight and kind of mimics a headache. Sometimes I have a little swelling on my eye and forehead in the morning. Anyone else have this? - At what week or month did you start walking? How long? -Some days I feel achy, tired and emotional. Does that mean I overdid it with activity the day before? -Is there anything that helps with the fatigue (other than napping of course)" Hi Lisa Welcome to this little group of lovely people - I am 26 months post SAH now (and I had 1 aneursym coiled), and I still have episodes of anxiety and sadness, although nowhere near as much as I had straight after the events... and I still to some extent relive the experience every now and again. - Others who have been clipped will be able to help with incision tightness and swelling. - Do you mean going out for walks? I started to try to go out with my mum and the dog some mornings within 3-4wks post op, and we would do 1-2 miles walking to the park and round it, depending on my energy level. About 4/5 weeks post op I agreed to walk round to a friends for lunch. She was only 5-10mins walk around the corner from my parents (who I was staying with). It was the 1st time I had been out on my own, and I hadn't even thought it could be a problem...I got to the end of the road and wasn't sure whether to turn back, as it was all so overwhelming. I was scared to be out on my own! The cars were whizzing past me at what felt like 90mph, but was possibly 20-30mph... I made it to my friends, but I was totally shattered when I got there, and found it really hard to have a conversation with her. From my experience, I would suggest going out with someone initially - maybe walking to the end of the street and back again, then around the block, and build it up gradually as you get used to what you can cope with. Ease yourself back into it. - Fatigue - try to ease yourself back into 'normal life' as much as you can, to find out your limitations. It can be difficult to work out what you can do without over-doing it. You will learn what will over-do it. It is all about pacing yourself and taking it easy. I know when I came out of hospital that is was enough on some days to get out of bed, have a shower and get dressed. I would usually go back to bed in the afternoon for a few hours, and I couldn't cope sat in a room with my parents and the tv on, with them trying to talk to me or each-other. It was all too much. I now know I cannot finish work (especially on a Friday after a full week of work) and go straight to do food-shopping. I have to come home and rest for an hour or so before I can contemplate that or that will do me in. But I am still learning I can't do everything...I am constantly being told by friends and family that I cram too much into my weeks... I try, as much as I can, to avoid busy, noisy, bright and/or smoky situations; I find these can take their toll on me and tire me out more. (Unfortunately I work in an open plan office with about 100 people on our floor alone, which has the brightest ceiling lights, impossibly thin blinds which are blinding when the sun shines through... and the noise level goes up and down constantly... I am trying to find some ways of making it easier for myself... I've ordered some earplugs to see if that will help, and work are looking into covering the windows with a film to block the light a little more...). I hope this helps, but I am sure others will come along with more answers and suggestions for you to try Take care Kel x

Hi Alison With all that has happened in the past month it is no surprise that at times you might feel low and a little negative. It is a HUGE thing that has happened, and your world has been thrown upside down and all around. I think you are having a very normal and a very valid reaction to what has happened. It might be worth having a read up about Post Traumatic Stress as you might identify with some of the information. (I am not saying that you are suffering from this, it is just that might help; I saw a counsellor a few years ago, after my SAH, and she told me I was suffering from PTS. Once I read up what it involved, it started to help me to realise that I wasn’t going mad, I was having quite a usual reaction to a traumatic situation). It sounds like Chris is in a much better place right now, and once moved to a stroke ward I imagine it can only get better as he should then get the right care, by nurses who can understand his reactions. And it is fantastic that you have the assistance of a social worker friend who can help ensure the right care is happening for Chris. I hope things continue to improve for Chris and in turn for you and the family. Lotsa love Kel x

Hi David Glad your appointment went well. Good luck with your MRi check-up Take care Kel

Ah-ha Carl, you have just reminded me of the torture I went through when they done a lumbar puncture on me at the first hospital I was at... After they had done the CT scan and then another CT scan with dye - they then attempted a lumbar puncture... 'attempted' being the operative word... I was quite nervous but the DR assured me it would take no longer than 10mins and he had done hundreds of them... One hour and 4 injections of local anaesthetic later he had phial of a miniscule amount of spinal fluid... I found it so uncomfortable... and he just kept telling me to curl myself up on one side on the bed, but I didn't have the energy to do it. I ended up sat on the edge of the bed and hanging myself over the bedside table, sweating profusely and wailing with pain... I told him to get away from me and never come near me again!! what a memory...

I had my SAH 11th December 2009, and I am sure I have read or been told that December is usually the busiest time for SAH?!... Kel x

Hiya There are certainly some similarities running through this thread already... I was treated 'quite' well whilst in hospital, but yes it could have been better... I started off at Hillingdon hospital and some of the nurses were lovely and some couldn’t have cared much less... one of the nurses was so nice, and gave me a cuddle when I was getting upset the night I found out that I would need an op. The lights were too bright in there, but like someone else said; there was no use closing the curtains as they didn’t go high enough to shield the light... then there were visitors for other patients, late at night – lights back on, and the noise!?... awful... The food wasn’t actually too bad at all. I had my op at Charing Cross hospital, and whilst in ITU there was a large male nurse who bumped into the end of my bed every time he walked round to check my obs! This stressed me out but I just couldn’t work out what to say without being really rude, so stupidly I didn’t say anything... When I was first able to stand up again in HDU 4 days after my op, I was struggling to hold myself upright with 2 hands, but I had a nurse stood there, arms folded, at the end of the bed asking why I wasn’t able to wash myself... she had got me a bowl of water and I had my flannel on the side, but I couldn’t let go of the chair with either hand as I was holding myself up! She then ripped my catheter out of me as I stood there... and I was then crying with her barking at me “why are you crying? What are you crying for?” She then went to get the ward sister who kept questioning me too... but I couldn’t even answer... I didn’t have the energy to explain. The original nurse finally helped me have a quick wash; well a very quick and rough wash!! (all I kept thinking was: 5 letters, starts with b and ends with an itch ). The food at Charing X was about 80% okay during my 7 day stay, although a little help here and there to feed me whilst lying flat would have been good! When I was transferred back to Hillingdon I was put in a ward with 5 much older ladies. My family and I asked about 3 nurses for a jug of water for me and it took nearly 2 hours to get it. I then started getting a headache after a couple of hours, as it was about 95 degrees in the ward, and I asked for paracetamol. They couldn’t give me any as they were waiting for my med chart from Charing X... I then started getting a migraine and all they could get me was a cold wet towel to put over my head (i asked for this specifically, in lieu of tablets!). I didn’t get any meds for about 8-9 hours, and I should have been taking nimodipine every 4 hours, plus paracetamol and tramadol for the headaches... I had to shuffle along the corridors at midnight looking for a nurse to get my meds, as it was scaring me that I hadn’t taken them, and I was in a helluva lot of pain too!! The buzzers were wrapped up about 4 foot above the beds, so very difficult for anyone to get to (let alone elderly patients) without kneeling on the bed, which is what I had to do at 2am when Doris next to me was screaming for a nurse and no-one came... I was going to discharge myself the next day had they not discharged me! I didn’t want to die in there, and I felt that could have happened... Kel x

Hi Donna, Good luck for Tuesday. I think I would probably be feeling just as nervous as you are, but I am sure all will be fine. I was in a major panic about having my 1st year angiogram check-up with general anaesthetic and that was totally fine, it was the fear of the unknown that got me in such a panic. Take care Kel x

Hi I use my calendar reminders on my phone to remind me of meetings/appointments and general stuff - like tings I need to buy that I may forget to write on my shopping list. I have written shopping lists for years, but used to be able to remember it all before, not now... I have to have the list with me and cross stuff off as I am shopping... I use my calendar notices at work to remind of anything and everything... My tablets sit next to my kettle so that I remember to take one each morning...it doesn't always work but is 99% okay. I have to use my kitchen timer when I am cooking, but have to get in the kitchen as soon as the buzzer goes off or I will forget... and I am finding I keep getting the 'what's that smell' and smoke alarm going off lately! How annoying... usually when I can't be bothered to cook a big meal and put a pasta&sauce on the go then forget... burnt offerings - yuk. I also send emails to work to remind myself to do things, and likewise from work to home... I use a word doc to write my replies to everyone in the green room, as I can barely recall one post if I don't write a reply as I read each post... My memory is massively better than it was post-op, but I still have little niggley issues with it now and again... but I cope (just about ) Good thread Dawn! Kel x

Hi Annie I have tried counselling via my work, and the woman I saw was brilliant! I did only have 4 sessions within the first 4 months post-SAH, however could probably have done with many more, but only have 6 per year so saved the other 2...but didn't end up using them in the end... I did then get some sessions via my GP but that wasn't so good. The guy I saw couldn't understand why I was upset, and was quite rude, and just wanted to keep dragging up my past, relationships with family, friends, boyfriends etc... not discuss the issue of SAH at all really. I only had a couple of sessions with him as it wasn't helping me. So it depends who you get, but a Neuro-Psychologist sounds like the best answer, but I wasn't sure how I could access that. Maybe I should have requested it at my follow-ups appointments... but that means taking more holidays off work...as I now have to for my hospital appointments. I would certainly give the work counselling a go, even if you do end up requesting a Neuro-psychologist (as that could take time to sort out) I hope you find the best course of action for you. Take care Kel x

Hi David I went back to work (on Dr's advice and everyone else's say-so too) 11 weeks post-op and was offered a massive 2-week phased return!! Lucky me... Had to scrape my jaw off the floor when they told me that level of generosity! I had to use holiday days each week to be able to cope with the increased hours, and would get home after work and sleep for a couple of hours before I could even contemplate cooking or anything else. I live alone and never get take-away because I have also been trying to lose weight too... I was back to full time work about 5 months post-SAH (because my DR and everyone else kept telling me I was okay to do so...even though I was saying different but still struggling to listen properly to my body...) and I started going to the gym about 6 months post-SAH doing a low exercise regime for a few months and then built it up from there. It was hard-going but it did make me feel better in some ways. (I had a 6-month payment break put on my gym account following my illness) I now do Zumba a couple of nights a week, and have been doing some overtime recently too, but that has set-me-back massively over this past week! I am shattered. Not surprisingly... (I am just over 2 years post-SAH so still haven't learnt to fully pace myself!) Zumba can be mentally tiring as well as physically tiring, as there are about 30-40 women in the studio, all chattering at the start and end of class, and then the music kicks in and you have to memorise steps etc... Yep, I am mad But I love it! I think you just have to give things a go to work out how much YOU can do. No-one can really tell you what you are able to cope with. You just have to learn how to listen your body. I always think Lynne’s advice is brilliant, and her idea of getting back to the gym on a non-work day sounds like good advice to me! Take care Kel x

Hi Dawn I agree with Gill - you have 24/7 care one minute and then nothing... you feel abandoned, dazed and confused... I got onto the PALS (Patient Advisory & Liaison Service) based at my hospital to ask for a follow-up appointment and had one 2 months after my SAH - because I specifically asked for it ASAP. I did however only see an assistant to the Neuro-consultant, who told me to go back to work, back to the gym and get back to everything!?! Yeah right! So I just had to listen to struggle on and learn to listen to my body... They did then book a follow-up appointment for one year later (09/02/11). Recently I had a follow-up MRi on 26/01/12 and have been waiting since to hear the outcome (I expected to get a letter to advise the outcome and next course of action) ... for the past 4 days I have been in email conversations with someone from PALS again, who kept telling me I had already had a follow-up appointment 02/09/2012... (erm, we haven't even got to Sept '12 just yet) ... then he said it had happened 09/02/12, but no he got it wrong again and eventually this morning he realised it was back on 09/02/11! So I have finally got a follow-up appointment booked for 7th March...phew. I think we just have to keep on at them all. We have to fight for our rights to be seen and heard! - So get on the phone to your hospital Neurosurgery department, or the hospital PALS and request/demand a follow-up appointment. Good luck Kel x

Hi Sue Welcome to BTG! It sounds like you are here to offer lots of positive vibes for everyone! You have certainly been dealt some rough deals but appear to be sailing through them with a positive outlook and hopefully that will radiate out to all those who need a lift in their recovery too Take care Kel x

Hi Alison I have HUGE goose-pimples after reading your latest posts about how Chris has been responding and squeezing your hand! It is brilliant news for you both! He is so very lucky to have you as such a ray of positivity and light in his life, willing him on to recover the best he can. Much love to you and your family. Take care Kel x

Hi Dawn Good luck for your angio. Like Gill said, it takes about 30 mins for them to take the pics they want, and then it took only about 10 mins for them leaning on me to seal the entry site. Then laying flat for 4hrs was indeed boring...and I had mine at 8 in the morning, but they hadn't thought to ask me if I wanted lunch...so had to lay there smelling everyone else hot lunch whilst they got me a ham sandwich Although I took a book with me I didn't feel like reading as I had a migraine after the angio, so had a little sleep during the 4hrs... I just saw it as another challenge to get through. It is really scary beforehand though, but it is quite an experience and the staff doing mine were really nice. Take care Kel x

Hi Allison Welcome to the site. Sorry I missed your thread initially but I am glad that Chris’s op went as well as expected and that he is now stable and squeezing the nurse’s hand is a positive step. I do hope he is now on the way to recovery and will be able to come on here himself soon enough. I look forward to hearing more updates from you Take care Kel x

Hi Yjc Welcome to BTG! You have indeed stumbled upon a great place to bem to get some much-needed advice, support and help during your recovery. It has been a god-send finding this site, and I was lucky to find it within a few weeks of having my SAH and coiling I too had chemical meningitis, but they didn't say what had caused it... (My SAH happened 11/12/09 and I didn't go to hospital until 15/12/09 and had CT Scans and a lumbar punture, which didn't show any blood in the spinal fluid at that point, but I wonder if it had already mixed and caused the Chemical Meningitis...) I didn't know I had suffered this until I was told by my neuro-consultant at my 2nd follow-up appointment 14 months post op! I too suffered massively from loud noise (or even not-so-loud noise!), bright lights and daily headaches initially. This has reduced over the past 2 years, however I do still have some issues with bright lights and sudden loud noises and the build-up of noise levels in the office I work in. In the early days of recovery I used to nearly jump out of my skin with sudden noises! Lots of water is the key to limiting the onset of headaches, and I have found that decaf drinks can help too. And lots of rest when needed. Take care Kel x

Great news

Hi Dawn That sounds like too much of a huge coincidence. I have never experienced anything like that... Kel

Hi Ron I am glad you are now getting help to learn to accept the new you. I read the Brain Book! It is really helpful. Thanks for mentioning that Take care Kel

Bill – It was me that said ‘wading through treacle’ in the past, as that is how difficult everyday tasks could be for me initially and for many months post-sah. I felt it explained the physical exertion of trying to drag myself through tasks and situations… Dawn - I think I experienced ‘the wall’ during the first few weeks post-op… I didn’t have to do much to be completely shattered and feel that ‘shut-down’ ‘lights on but no-one is home’ feeling… It is certainly true that you learn to listen more carefully to your body over time and start to recognise when you are over-doing it and can then implement coping strategies to help get through it. Mary – that is good that your company and colleagues are allowing you to rest when needed. I certainly frightened a lot easier post-sah although that has got better over the last 2 years. Take care Kel

Hi John! Wow your post made me smile this morning. I am so pleased to hear that you are in such a good place right now, and everything seems to be aligned to bring good things for you. Mary - you got it right, that really is food for the soul Take care John and may life just keep on getting better and better for you Kel x

Hi Carl That is a great link, it is always good to have some coping strategies for those 'blue' days Kel