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SarahLS

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About SarahLS

  • Rank
    Member
  • Birthday March 31

Profile Information

  • Gender
    Female
  • Location
    Norwich,Norfolk
  • Interests
    photography, space travel, space history, walking, reading, WW1history

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  1. 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 here who "get it" completely is wonderful, especially as I have learned exactly who my real life friends are. Thank you all for listening, and supporting during my journey & here's hoping that things do improve some more, however slowly.
  2. 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 Skippy, but I tend to feel hot/over heating most of the time however cold my hands and skin feel. At work people have been shivering with air blowing heaters on them while I've been sat in a tshirt looking longingly at the window! However if this flips and I feel cold it is full on shivering and not being able to get warm regardless. Again thanks for the replies and suggestions xx
  3. 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 the hospital migraine specialist so I guess I go with this. His follow up letter has arrived very quickly this time and he's recommended a medication change so I've made an appointment with my gp to talk all of this through. I also reported my increasing fatigue and my much more pronounced word loss, he put these down to 'poor attention' which made me think of primary school reports! He did say I should also ask my GP about possible menopause symptoms as the fatigue etc could be caused by that, but I'm only 42 so I'm not sure if this is likely, or if a SAH can trigger an early menopause? I am also having problems with regulating my temperature so I will ask. This all sounds like I'm uneasy with my neurologist and I'm not at all, more frustrated with myself that I don't think I'm explaining myself effectively at appointments. He always has plenty of time for us and does full examinations explaining what he's doing. Apologies for rambling, and I know no medical advice can be given but anecdotes and reassurance welcome!
  4. 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...
  5. 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
  6. 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.
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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...
  15. 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
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