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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. 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 too bothered by them so far (I have an appointment in 3 weeks for a follow up so we'll see then) and my GP has recommended soluble paracetamol as one of the most effective painkillers. Since having the bleed I've found my GP and neurology department very reassuring and if it were me with these new symptoms I'd be chasing both for new, urgent, appointments - I've learned what my new normal is and do get new variants checked out. good luck, sarah
  2. 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 definitely had no unknown aneurysms. The flight from Norwich to Amsterdam was only 35 minutes and I was fine on that. We had a five hour flight (with lots of turbulence and altitude changes) when I was 8 months out and that was very uncomfortable and left me with really bad head pain for a few weeks after. This year's flights were fine. I do declare everything on insurance and found the premiums were huge last year but lower this year. We're hoping to go to the States next year and I'm already dreading the insurance costs of that... Definitely talk to your doctors before travelling, and even if you can't cycle Lanzarote is at least a break from everyday life and a good place to relax, especially if you are already back at work. As for the taste buds, hopefully they will right themselves - I lost my sweet tooth initially and craved salty foods and even now on my bad days everything can taste slightly off, I use it as a warning sign I'm over doing things.
  3. 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 of the possible causes, but there is also a history of SAH & high blood pressure in my family so who knows. I try to put it all down to the brain moving in mysterious ways but I really would like to know why... Sarah
  4. 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 kickstart things but as ever coming on here reassures me that I'm not alone in how I'm feeling, while at the same time feeling sad that others are also struggling. good wishes to all
  5. 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
  6. 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... take care
  7. 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 had, although a migraine sufferer for 20+ years, and being on the cusp of 'that age' I always felt listened to. I think it does come down to areas & individuals as my father's recent brushes with the NHS haven't been so great. Again, I don't know whether to hope nothing is found so you have reassurance that you haven't been misdiagnosed for so long or whether finding a cause would be better. Do you have a different GP at your surgery you could see, or is there a headache clinic at your hospital that you could ask to be seen at? hoping you feel better today from Sunday's pain, Sarah
  8. 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 the occ health person could not have been more helpful, positive and any less of a champion for me and when redundancies etc did come around I had support from her as well as her guidance for my manager and hr person to ensure I was treated fairly. It wasn't all plain sailing during the reconstruction but the Occ Health reports and support did make all the difference and I am glad that they were involved despite the doubts and negative image they had. I now have a contract for the hours I can manage, have the option to work from home occasionally and can also timeshift my day to match my 'best' hours. I don't think that without the occ health input I'd have been granted this, or known I could push for the latter accommodation. I hope that your meetings are as useful, good luck, Sarah
  9. 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
  10. 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...
  11. 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
  12. 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
  13. 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...
  14. 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
  15. 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.
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