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SarahLS

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Everything posted by SarahLS

  1. My SAH certainly showed who my true friends were, and happily with them I have a far better relationship. I was sad that some dropped away, I thought we had a stronger friendship than we did. On good days I can understand the fear that may have caused the split - I'm not good with acute illness either - but it does still hurt. My dentist would have good reason to be nervous around me as I had the first thunderclap headache in her surgery but she's always pleased to see me, even though any dental work is now far harder as we avoid the drug that possibly triggered the bleed.
  2. Hi Carolyn, I didn't find out about the driving thing until my first appointment with the stroke nurse, well over a year after. Although I had a licence I wasn't feeling well enough to drive even by that point and so hadn't looked at the info here or realised I had to let the dvla know. Oops! They were nice about it and I did get my license back but I've lost all driving confidence (never high in the first place) and still haven't driven. It made job applications tricky but I now just say I don't have a licence! As for the fear/anxiety I definitely found the counselling
  3. Hi Carolyn, I had my SAH in December 2017 but wasn't diagnosed until January 2018 and only had 1 night in hospital (I'm not sure my experience is typical in that respect. I only went to hospital after the 2nd thunderclap headache where I had a clear CT scan & lumbar puncture. It was only after the 4th thunderclap that I was booked in for an MRI and then that didn't happen until after the New Year holiday). I was discharged from hospital after the one overnight stay with no advice and painkillers/anti nausea meds to last 3 days. I made an appointment with my gp to ge
  4. Congratulations on the 3 year anniversary, as someone about 6 months behind your recovery it is definitely heartening to hear that there is still more improvement possible. Take care in these testing times
  5. Hi Fiona, Thanks for your encouragement to keep going with the applications, I am lucky that I have a job with a lot of positives but although still in the library world it no longer has anything to do with books or people - the two aspects I enjoyed the most. The whole job thing last year was a bit of a saga... My initial post was deleted in a council restructure and it did look like I was going to be made redundant but all of my colleagues fought against this on my behalf and I was grudgingly given the right to apply for 4 news posts - however health reasons m
  6. Hi, 12 months after my SAH my job post got deleted and I had to apply for new positions. Like you I am so much better than I ever imagined but there's no way I could hold a multi part question in my memory and answer it in a formal situation (or to be honest in an informal situation!), I also struggle with finding the right word. I took advice from an occupational health appointment and my specialist and I do declare myself as a disabled applicant for roles. If I get as far as the interview stage and I'm asked what reasonable adjustments they need to make I ask for the qu
  7. Many thanks for all the kind words. We spent the weekend visiting family who we won't see over Christmas and this has wiped me out. Why do people always want to go out for evening meals in noisy places? Spending today quietly and looking after myself!
  8. Two years ago today I had a dental injection which caused the first of four thunderclap headaches. I didn't discover for another month that I'd actually had a SAH. It has felt an odd day, last year at this time I'd just been threatened with redundancy and so the anniversary passed me by in a haze of stress and fear about my job, this year I've felt just how lucky I am despite everything. I'm definitely learning my limits, and learning to say no more (especially to work) but I am fed up with having a two year headache and also with the fatigue. Knowing there are people h
  9. Thank you both for these replies and reassurances, knowing there are people out there who are slightly further along the journey than me is so comforting. I have made a long GP appointment and have already started making a list of things to ask. My fatigue/aphasia/concentration levels had improved a lot until recently but over the last month all have dipped significantly- to the extent my husband and colleagues have noticed. Not knowing if this is a seasonal dip/legacy of the bleed/something new is all a little disconcerting. My temperature issues are similar to yours
  10. I saw my neurologist this week for my (late) 18 month check up and we talked about the daily headaches plus the more severe ones I'm having 3-5 times a month. He thinks that my headaches are now more likely to be migraines than residual problems from the SAH. I'm not sure what I feel about this as I was on medication for migraine before this and the migraines were very different to the headaches I get now. I am a little worried I misunderstood his questions and that we were talking at cross purposes. He did say that an SAH can cause existing brain conditions to alter and he is th
  11. My dreams are an odd mix now, I know that I have vivid dreams pretty much every night because I wake up with the sense of them, and I know they must be vivid (and I'm guessing probably distressing) because of how emotional I feel on waking but I can never actually remember what has happened in them. I wish more of them left happy feelings...
  12. Hi there, I'm almost two years out from my NASAH now and I still haven't had a pain free day. Most of the time it is a dull background pain that I can tolerate but around 4-5 times a month is gets a lot worse, with a few being terrifying. Often sneezing is a trigger to increasing my pain which is an activity hard to avoid! I do find that drinking a lot of water and pacing myself helps but this has meant quite a change to how I live my life. I know we can't give advice but my story is that my neurologist is aware of my headache frequency & hasn't seemed t
  13. I had my NASAH at the start of December 2017 and we had a trip planned to Amsterdam in mid March, luckily I had an appointment with my neurologist just on 3 months after the event and he said I'd be fine to fly, but that if it did cause problems then the Dutch health service is excellent (he is also from Zimbabwe and made a joke that the English spoken by the Dutch was probably better than his!) he also pointed out that if flying really was terrible then you could get back to the UK overland. He also made the same point that ClareM mentions in that I'd had a recent MRI and definite
  14. Hi Jean, my my story goes the other way round, I had 4 Thunderclap headaches, two A&E visits and one overnight stay. As the CT scan & a lumbar puncture came back clear I was discharged with a diagnosis of thunderclap headaches probably caused by RCVS, but I was also given a MRI scan (with dye) a few weeks after the headaches where to everyone's surprise it showed I'd had a SAH. i guess I'll never know actually which came first now... I did spend a lot of time looking into RVCS and in the few months before the incident I had ticked almost half o
  15. The phrase about losing your zest for life really encapsulates how I'm feeling right now, but couldn't vocalise, so thank you for giving me the words. I'm still trying to come to terms with no longer having the ability/stamina for taking part in my old hobbies and although walking/nature watching & photography are replacements they are reliant on good weather (and a husband/friend being willing to do the driving). Combined with a new job that I'm struggling with & a pay cut it all feels too overwhelming. I'm hoping that our forthcoming holiday will help kickstar
  16. Hi Charlie, congratulations on reaching the one one year point and treating yourself kindly. I'm glad you do have lots of support from friends and family, even if some have dropped off along the way. keep looking after yourself, I'm finding that when people are dismissive of my needing naps I just tell them I'm following a fully Mediterranean lifestyle with siestas and not just the food 😆 Sarah x
  17. It doesn't make you sound bad at all, and to be honest I was relieved when my most recent scan did still show a large damaged patch in my brain, after a year and with no outward signs of what was going on I could feel people starting to question why I wasn't able to work at my old job, why I was still complaining of pain etc. Something physical does give you validation even though you shouldn't need it. Regardless of job worries etc I do echo the above advice of taking yourself off to a&e , it all gets added to your file and someone different might have a new idea or diagnosis.
  18. Hi Kerry, I hope that when you get your scans at the end of the month you do get some answers, although I'm hoping that a bleed of some description hasn't been missed. I had 4 of the thunderclap headaches, and a CT scan & lumbar puncture both came back clear after my admission to hospital after the 2nd one. I was discharged after one night and then ended up back in A&E just 10 hours later with headache 3. It was at this point the neurologist on call booked me in for an MRI but I had one more headache before this happened. I feel very lucky in the care I have ha
  19. I also had my SAH in December 17 and went back to work after 4 months, again like you on very limited hours. My GPs issued me fit to work notes on three month intervals along the lines of hours & duties as tolerated, my line manager was also great at accommodating my needs. All I heard from colleagues were horror stories about our occ health team but as restructures/redundancies were being talked about, and as I had no official guidance on work etc., I insisted on a referral to them, so that I had some support/back up if the worst happened with my role. In the end t
  20. Hi Swishy, Sorry that that your appointment wasn't as routine as you'd thought it would be and I hope that the new information helps you more than anything. Good luck with the core strengthening and digesting the news, Sarah
  21. 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 lo
  22. 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 problem
  23. 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 cle
  24. 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 mee
  25. 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 th
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