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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


    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.
  2. 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
  3. 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
  4. 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
  5. 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...
  6. 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.
  7. 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
  8. 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.
  9. Thank you for this information, currently the only trips we have planned are from our local airport (Norwich) and as this only has about 5 flights a day so even on the busiest days the terminal doesn't get too full but I was dreading having to fly from a bigger place. Knowing that there is some discreet help available if things get too much is another (currently non-existent) worry off my mind.
  10. SarahLS

    New Member - Charlotte

    Hi Charlotte, Like you after my NASAH (6 months ago tomorrow) fear and anxiety were my biggest worries, especially as I wasn't kept in hospital apart from one night. My GP took this really seriously however and we tweaked other meds to help this. Once the fear was under control I did also find that the severity of the headaches decreased too. I can still feel my anxiety levels are high, and there are definite moments of panic - and like Daffodil this wasn't how I was pre-bleed, but again some deep breathing and the feelings do ease for me (mostly). It has taken me a long time to get anywhere near back to the confidence I had before December - it took me 7 weeks to even leave the house without my husband but again thinking positively and talking openly about my fears/feelings is definitely helping me. Along with lots of hugs from husband and my nephew... Can I just say how impressed I am that you are back at your computer/reading a message board at just 22 days after falling ill. I couldn't focus on a screen for any length of time for a lot longer than that. I hope that you do start to feel less anxious soon but look after yourself, and be kind to yourself, Sarah
  11. I thought I'd update a little on this as I finally got a referral to Occ Health today. She was really nice and is appalled that I've been back at work nearly 3 months before being sent to see them, then even more horrified that I had to demand the referral. I am pleased that I have pushed for this despite the stress and worry about it making me feel really unwell the past couple of days. The outcome seems to be all in my favour, now that everything is noted and on my HR file it will be very hard for them to suddenly stop me working reduced hours and reduced duties on a whim, which was what I was worried about. She is happy to say that I can have another 6 months on this before another review is due. Also having it all formalised means that if anything does happen to my job then I'd have a good case for unfair dismissal. Another worry was that where I work is about to be restructured and while nothing about my health/hours/duties was recorded I'd have to follow a very prescriptive, cognitively challenging reapplication process (colleagues in the county went through this last year and it is horrible) with no allowances being made. Now I know what I have to ask my neurologist for in regards paperwork so that I can make it clear that I am still unwell and can't jump through every hoop. It all feels better, I think. My husband was allowed in with me and he seems happy with what happened which is reassuring but to be honest I am now so tired that I can't remember everything (or anything like). The Occ Health person did seem to take on board how much I had changed since December in terms of memory/concentration/cognitive ability while saying that I presented as a very well-together person. My husband was quick to stress how much I had changed but there was the - oh you can expect to lose your memory and be more tired as you get older...that's fine but I changed over night. I get the feeling that this is a common complaint for people who've had SAHs however. Sorry for the brain dump again - hopefully this positive meeting will set my subconscious to rest a bit more and I will start to improve again. Hope that other people are having a good day - or at least a tolerable one.
  12. Thank you all for the welcome and reassurance. My immediate line manager is so pleased I'm back at all and is very supportive currently - although how long that will last if I stay at this level and don't improve I'm not sure. My husband is also very supportive and really helps out around the house/with the cooking on my bad days. Today however was a good day and I shall store the feeling up for the less good ones! i hope everyone else is having a nice weekend.
  13. I had my NASAH in December and from reading the stories on here I have been very relieved to know that much of what I am feeling is common to other people but as I have noticed my mental health suffering recently I thought I would take the plunge and join the forum and share my story. At the start of December I needed emergency dental treatment and while the dental anaesthetic was being injected I started to feel very ill, excruciating headache, loss of hearing, nausea, racing pulse and then vomiting. The dentist was very calming and I stayed on the treatment chair for a few hours until the pain subsided and I could get home. I suffer from migraine and new this wasn’t a migraine but the dentist reassured me that she had seen this reaction before and it was all okay. The next day I was washed out but generally fine. The next day out of absolutely nowhere another headache hit and my husband was so worried that he called the NHS 111 number and they immediately sent a paramedic. She was on a pushbike so on looking at me decided I needed to go to hospital and arranged for an ambulance. Once in the hospital I was sent for a CT scan which came back normal. I was admitted to a general neurology ward overnight as a precaution. The next day (a Saturday) I saw the neurologist and he performed a lumbar puncture. This also came back clear and so I was discharged. 14 hours later I had another one of these headaches – the worst so far and ended up back in A&E. The same neurologist was on duty and came to see me, he thought at this stage it was nothing more than a run of thunderclap headaches (it had been a stressful time at work) and gave me stronger painkillers and an antiemetic. A relative died from a brain haemorrhage in the 1980s and there is a history of high blood pressure in the family so ”just to make sure” I was booked in for an MRI. I had a fourth thunderclap 4 days after this. The day after having this scan my neurologist called me in for an appointment that same day. The MRI had shown a large bleed on the front right side of my brain when nobody was really expecting to see anything. This was now over one month after the first symptoms. I’ve now had 2 further MRIs and the good news is that the area affected is reducing and no other problems were noted so it does appear to have been a freak happening which either was caused by RVCS or that caused RVCS…however my recovery seems to have stalled. I was known within my family for having a great memory which has now gone and worse still as part of my job is as a book reader and judge for certain book related initiatives and prizes I am still unable to concentrate on narrative fiction. My problems with reading improved greatly at first – in December/ early January I couldn’t read anything longer than a tweet and now I can read essays/diaries and short stories but nothing more. This hasn’t really improved since February but isn’t being taken particularly seriously by my GP or neurologist. Before I fell ill I was reading 3 or four books a week, this is now 1 or 2 a month… I was off work from December until mid-March and am now back at work on limited hours. I am lucky in that my work place & boss are so flexible and allowing me to recover at my own pace, but I sense that their patience is running out. I still have the same niggling headache I’ve had since the last major thunderclap (5 ½ months of pain is very tiring as I am sure many of you can relate). I also have terrible fatigue, poor concentration and memory plus at times of stress/tiredness I have trouble finding the right words. These are all invisible symptoms and I think harder for people to understand, there have also been a few issues with sickness and protocols surrounding a phased return plus a reluctance to involve the in-house occupational health team. Apologies that this first post is so long, it has taken me a long time to compose and type. I realise that in the grand scheme of things I am incredibly lucky – I didn’t need surgery, it is thought that I am only 2-5% more likely than the general population to have this happen again, and I am better than I was. However I feel like I have stalled in recovery in the past few weeks, and even slipped backwards – the headaches have worsened, as have my concentration levels and fatigue. A balance between work/life/health just seems impossible at the moment.