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About SarahLS

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  • Birthday March 31

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    photography, space travel, space history, walking, reading, WW1history

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  1. SarahLS

    1year post sah

    Hi there, I’ve just passed my one year anniversary and have definitely had a few blips lately, these are being investigated but may just be stress related (job woes). However in the past few days I have also had a return of similar feelings in my head, my brain also feels, I guess for want of a better word, itchy. A scan in December highlighted a few ‘anomalies’ - and isn’t that a scary word - so I am waiting for a more detailed mri and then neurologist follow up. I will be mentioning these feelings and if I wasn’t already waiting for appointments I know I’d have been going to my gp or calling neurology. I hope that you have someone to speak to for reassurance and that the sensations stop soon.
  2. Hi Penny, I’m learning to like the new me, slowly. I have to actively force myself to concentrate on the things I can still do and not long for the past. I’m trying quality over quantity in everything and that seems to be working. I’d love to get through the day without needing a rest or nap and like you I occasionally see 10pm! i was always really skeptical about the health claims you need to drink so much water but I’m now a full convert (and know where every public loo in my home city is located!) sarah
  3. I’m just over a year out from my SAH now and I do still have head pain/headaches everyday still. Most of the time the pain is just there in the background rather than being a real problem but it is always there. I also have intermittent dizziness - but I was prone to labyrinthitis beforehand so I’m not always sure if it is a new thing or not. I try not to take too many painkillers and definitely notice an improvement when I get enough sleep and drink more water/squash. I hope that the headaches will go eventually but mostly I’ve learned to adapt to them and am regaining my life more, I think I could cope with this background pain long term if the fatigue were to ease...
  4. SarahLS

    Feeling scared

    Saw my GP and it is probably stress but a few of the symptoms/ surgery tests were a little odd and so she's referred me for an MRI to check all is ok as I don't have a neurology appointment yet scheduled. thanks for the support and advice
  5. SarahLS


    Vertigo is something I suffered from occasionally before my SAH, I had a few bouts of labyrinthitis and it was nasty. Since the SAH I have small episodes of dizziness/vertigo generally when I have a bad bout of head pain or am very tired. I did ask my GP about it and she said to keep a note of it and mention it at my next neurology appointment. I hate the feeling and find closing my eyes and counting slowly to an arbitrary number (depends how dizzying feel) calms me down so I can work through it. Definitely echo the advice to see a GP as if it is labyrinthitis there is some treatment out there.
  6. SarahLS

    Feeling scared

    Thank you Clare for the reassuring words, I feel you are right about the stress as I have woken up feeling better and wonder if that is because I haven't got to go into the office until Tuesday. I will keep my Dr appointment today and just get checked out just to be on the safe side. i knew this was the place to come for reassurance.
  7. I'm feeling a bit scared/worried tonight and rather than sitting at home stewing I thought I'd post here knowing that even without you all being able to give me medical advice I know you're all likely to understand. I'm just a week away from the 1 year anniversary of my SAH/RVCS and in the past month I've started feeling really unwell again. Headaches that come absolutely out of the blue and affect the back of my head (so not at all like how my migraines used to be - but equally similar but not quite as bad as the thunderclaps from last year). I'm taking all the medication that has been prescribed, drinking loads of water/squash and sleeping 8 hours a night. The only change in the last month is that I've been told my job is being deleted and they can't see any successor rights for me. I had seen part of this coming but thought there would be new less stressful roles I could apply for but that seems not to be the case. I thought I was fine with this, the job has ceased to be a passion/love and I was hoping to recover more (hopefully) and then job hunt next year. The problem however is twofold in that as the changes are all just 'in consultation' right now no one can or will give me a structure to how this will work timing wise (I could be in redeployment prior to redundancy in 2 weeks or maybe not until April) and the uncertainty is not helping. Then all my colleagues think I've been treated unfairly and so are feeding this back and I could find out I can apply for a new role - this sounds great but if I get this right I *have* to apply otherwise it is considered I am quitting and I get no help/payments and no reference. I have seen Occ Health and the Union and know my employer is just about staying on the legal side of how they are treating me, although there are some issues to raise and keep track of for discrimination/constructive dismissal. I guess as I am listing this rationally I can see that it probably is just stress that is causing the problems but the pain onset is so sudden and scary I am of course worried that there is something else going on. I have an appointment with my GP tomorrow (and amazingly at such short notice I get to see the dr I've seen all year about the SAH) and it is only 10 days until my first NHS mental health appointment but right now I just needed to write this out and ask others who may have experienced similar symptoms to reassure me that stress is my main problem and that I'm not missing anything obvious. Thanks for listening Sarah
  8. SarahLS


    The this may sound funny but I often worry about getting these hideous headaches (so different than anything I experienced before SAH) when out and doing things that the stress of this fear keeps them at bay until I get home/back to the hotel room and I relax - then bam! I'm afraid the only thing that helps then is water, pain relief and sleep. In some ways I'm just like my 8 year old nephew who gets sick after too much excitement. I'm hoping that I learn soon how to balance my excitement/stress levels out better - I can cope better with a slightly raised pain level for an extended period far better than I can with the hideous pain that comes after a good day. Sorry your trip ended on a down note and that this is extended in time.
  9. I'm struggling again at the moment and thought I'd post here as well as just reading all the posts and trying to absorb the good advice. I saw my GP in late June and she signed me off on restricted hours for a further 3 months which was a great relief over the summer, especially with the heat. I also saw my neurologist, he seemed pleased with me and won't be seeing me again until the New Year. He explained more about my initial heamorrhage and defined it as a catastrophic brain injury, which was a little scary. My work place is undergoing a restructure this Autumn and the neurologist kindly wrote a letter for me explaining that I was to be treated as a disabled candidate when it came to reapplying for jobs and listing what has happened to me in clear terms. All of this should be reassuring but my current fit to work note runs out on Sunday and I was called into the manager office and pointedly reminded of this earlier in the week as well as warned that if it got extended again more serious meetings with Occ Health will have to happen. The passive aggressive stance and implication that I am burden or shirking are getting me down. I have tried to work my contracted amount of hours but I still physically can't, and when I've left meetings for air/space/quiet I have been reprimanded afterwards. I had already made an appointment with my GP for Friday and have a list of questionsto ask, and I'm hopeful that she will extend my sick note. I will also try to ask for a mental health referral too but I've been fortunate in the past and never had to ask for this sort of health help - how do you broach this? I'm so used to trying to show my family that I'm coping that I don't know how to express how muddled I am. I can't say exactly what is wrong - most of the time I can cope but I know I need some help to untangle myself. Also does anyone have any ideas how to get across to my boss and colleagues just what has happened, how it affects me and just how poorly I often still feel? i've printed out and shared the Headway sheets but there seems to be no understanding that it isn't like I had a broken arm and it is now fixed. Thanks for listening, and for the great support and advice you give from your own personal experiences, Sarah
  10. Super Mario & Clare, My main issues at the moment are trying to remember things I need to do whilst completing another task, I guess this is short term memory... I've always been useless at putting names to faces and I finally have an excuse for this! I can also remember and 'see' the words/ideas I am trying to explain but the wrong words are coming out. This is often brushed off as a joke (by me too in order that people don't see how upset I am) and after the event I can see the humour but it is so different for me. Everyone was in stitches in a meeting when I talked about the Penguins nesting on the cathedral spire...I couldn't see what the problem was, as I was convinced I'd said peregrines. Now I can smile but at the time it was horrid. Here's hoping the brain keeps healing, or I develop a thicker skin. I travel,everywhere with a notebook now and my note taking skills are getting bettering! #silverlinings Have a good weekend all
  11. Thanks so much for this reassurance Skippy, you are right and it is getting better, I am playing online memory and other brain games so it is nice to know that they are probably helping and not just passing the time. It is just the way everyone else seems to think my memory etc are fine but I know how far from true this is - getting that message across is hard! More sleep and plenty of water while gently testing myself is the way forward, again thanks for replying
  12. As someone who was also known for their memory and is now struggling with that and some language problems can I ask if or what help you got with these issues Skippy? So far everyone I've seen says that I seem to be fine but both me and my husband can see a huge difference even if to everyone else I seem to just be just like them. I have definitely found that fatigue and not drinking enough do really have an influence on my memory and ability to find the right words but I am finding it hard convincing people that there is a problem. I realise that I am only 9 months into recovery so it is still early days but it is only when I see people who I haven't seen since the SAH and who know me well that I feel that my issues are seen. Of course I've only seen people like the neurologist and occupational health since the SAH so they think I'm fine...
  13. SarahLS

    Headaches and NASAH

    Whilst I am sorry that you are still suffering with the headaches you have no idea how happy I am that someone understands me whe. I describe the pain as being like a too small hat - most people just look at me like I'm mad. i do try to limit my screen time, but as I find my concentration is poor I do seem to spend a lot of time reading Twitter - it seems to suit my butterfly brain. I will look into the Calm/meditation apps tho - any specific ones that you recommend? I'm very new to these.
  14. SarahLS

    Headaches and NASAH

    Hi Charlie, I'm about 8 months on from my NASAH and as yet I haven't had a day without a headache, it is no ln Get there all day everyday but it appears at some point. At 3 months I was still really suffering, and had a feeling like my brain was being tickled from the inside but these feelings have lessened. I do occasionally get a sharp pain that reminds me of the thunderclap headaches but these seem to fade after a couple of seconds, just long enough to start my heart racing in fear. The pain I get now is mostly at the back of my head, I liken it to having worn a too tight hat for too long. When the headaches get worse they do tend to stay at the back of my head, this is new for me as before all the pain would have been front of head. Any stress, pressure changes and extreme fatigue all trigger much worse pain. I do do long for the day that I don't have a headache, but I try to hang on to how much better the pain is. Good luck , sarah
  15. On a similar note to this discreet assistance at airports I was very pleased to get an email from The Kia Oval earlier stating that there was a dedicated desk you could go to for a band that indicates to staff at the ground you have a hidden illness or just might need some extra help. This seems to be their standard way of operating and not a special thing for an international cricket match. They also have a fully accessible, disable adult changing loo on site. I was pretty nervous about going to a large event there tomorrow but just knowing they've thought about this has made me feel calmer and more relaxed about our outing. Now to hope that the cricket is good and that it doesn't cause my blood pressure or adrenaline levels to rise too much.