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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. Like Clare I had no surgery, and was lucky enough to spend very little time in hospital... My neurologist gave me the ok to fly 2 months after my haemorrhage- this was a short 27 minute flight from Norwich to Amsterdam (seriously we spent more time taxiing than in the air) and I was fine on this one. I was reassured on this flight by knowing that I could come back by train if it was too much and that the Dutch speak fabulous English! I then took a 4 hour flight to Greece 7 months out (again after checking it was ok) and while flight out was fine coming back there was lots of turbulence and the pilot had to keep changing altitude and this did give me a lot of trouble with head pain, however I wasn’t alone in this and there were several people far worse off than me needing oxygen and close care from the cabin crew. Now I know what to expect as (hopefully) worst case scenario I have booked to fly again this year, but a shorter flight. I’m hoping that there will be fewer/no problems as I really want to go to America next year. I’d be interested in any insurance company suggestions as my premium seems to be even higher this year, 12 months plus after the event, than it was last year at 2 months out...
  2. Thank you both for your input, wise words and for calming me down. I think that I just over reacted to the letter, I think I either expected to hear nothing about the ongoing issue until my next clinic appointment or to get an answer. More uncertainty just threw me in a week full of other issues. The letters I get from the neurologist are the same ones he sends my GP but I will ask her when I see her if she can explain the terminology further, I think it is just the word lesion that is freaking me - family/friends who’ve used this term have definitely had bigger problems than my headache/fatigue/cognitive ones. Thank you again Sarah
  3. Back again and feeling a little like it is two steps forward and then one back. The postman has just delivered the letter sent by my neurologist after the appointment at the start of the month and the diagnosis is now right frontal intercranial haemorrhage following recurrent thunderclap headaches, which is more detailed than any other letter which has just said haemorrhage... however it is the p.s. that has me confused/worried “The radiologists plan to deliberate further between themselves regarding the appearance of persisting, pronounced enhancement at edge of the cleft left over from the previous right frontal haemorrhage” I was hoping that as it had been nearly 3 weeks since my appointment where this was mentioned, and there were plans to discuss this in department meetings, that there would be some answers in the letter. I know that no one here can offer medical advice but has anyone else had this diagnosis and can help explain it to me? Or can point me to a website where I can find out more? I have a GP medicine review in about 5 weeks so will ask there too. thanks as ever. Sarah
  4. Thank you for that Daffodil, and for the link to the flooding video. It makes so much sense and sums up so many of my problems. Nice to have specialists backing up my requests to work early mornings not afternoons too! I’m back from my appointment and still a bit confused the good news is that there has been no new bleed and they still see no signs of any aneurysms. However, on MRI scans with dye then some ‘unexpected fringing’ is showing up around the initial bleed site which they aren’t sure about. My case & scans will be taken to a big radiographer/neurologist department meeting and discussed there to see if any more light can be shone on it. I’m also to call the neurology department if I get another spike of headaches or feared thunderclap rather than my GP now, and the same if I get any limb numbness or sight problems. I am simultaneously nervous that something is still amiss but relieved there is no new bleed, and also relieved that there is something still wrong to explain the headaches, fatigue and memory problems. I was beginning to think it was all in my mind rather than in my brain. The dr will write to let me know the outcome of the clinic meeting but for now will scan and see me every six months. Now if only that nice weather would come back...
  5. It has been a while since I posted this and the past 3 months have been a full roller coaster. My gp was also worried about the new head pain so sent me for another MRI before Christmas. Instead of hearing back from her my neurologist wrote back saying the radiologists had pointed out something that needed further investigation via another MRI with contrast dye. Today I will hopefully find out what is going on as I have my neurologist appointment- I’m really hoping that as the last MRI was 10th Feb and they’ve not called me in earlier that things are not serious, and not just that the NHS is so swamped they couldn’t fit me in earlier. As for the job woes... the powers that be decided I was allowed to apply for a rights to post position after all. However there was only one post I’m physically capable to do and I’m not 100% sure of that as it is a job that only can be done on a pc with no variety of tasks and worse still I will be the only person who can do the job, no team, no support for the bad fog brain days. Unsurprisingly my headaches and fatigue have got no better but I felt I had to take a post where my immediate boss is understanding of my recovery. Also didn’t have to have the full application/interview process which was a stress relief. thanks for reading, here’s hoping it is ok news later. S
  6. 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.
  7. 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
  8. 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...
  9. 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
  10. 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.
  11. 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.
  12. 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
  13. 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.
  14. 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
  15. 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
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