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About SarahLS

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    photography, space travel, space history, walking, reading, WW1history

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  1. I had the Pfizer vaccine on Tuesday, my arm was very painful that evening & Wednesday morning, I then developed a headache that was really intense & painful but after about 6 hours it was like a switch was flicked and it vanished completely & since then I've felt fine. The vaccination centre we're really good at explaining what might happen & also who to call if we were worried but definitely talk to your doctor and the staff at the centre. Even feeling as rough as I did it is worth it not to catch Covid
  2. 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. I shall definitely try and take Daffodil's advice and remember the good times with old friends and make lots of new memories with those that stuck around.
  3. 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 help. It has given me ways to break out of the thought pattern that every headache is a new bleed but it is still there to some extent. I do get anxious when I get a bad headache out of nowhere in the same area that hurt at the time, I can handle headaches that build but the ones that sneak up on me unawares or that I wake up with do still cause a bit of panic, which of course increases the pain. This is also where the counselling came in useful. I have a mental checklist of things to check and should a certain threshold be reached I have a plan of action... The fatigue and mental woolliness have actually been harder the learn to live with, and I do still tend to over do things on some days and pay for it for a lot longer afterwards but I'm gradually learning to both pace myself & to not beat myself up when I over do it. Fluids, rest & listening to your body are essential but so is asking for help when it all gets too much. take care
  4. 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 get more drugs as the headache was still there & got prescribed amytriptyline. After seeing the neurologist in Jan 2018 I was given no more advice and wasn't told I had to let the DVLA know. I still see my neurologist (waiting to see about the appointment I'm due now) but have definitely had more info from here. At the last appointment he recommended a change in dose of medication via the GP and they wouldn't do that until his letter arrived with them, but even when I received the copy I had to chase with them for an appointment. My GP practice does insist I see the stroke nurse annually, although this was due on 23rd March and reasonably got cancelled. I've not been contacted by them to reschedule or have a telephone/video appointment. While no medical advice is given here on BTG I have definitely found the support and non medical suggestions for coping more valuable than anything anywhere else. The importance of drinking enough water/soft drinks is the best thing I learned here as is the message that it is okay to not be okay and that progress/recovery is not linear. It is also reassuring to know that on here there is likely to be someone who has had a similar journey who can reassure you. I finally realised I wasn't coping mentally about 18months after the original event and did reach out to the local mental health team. I received some great help in learning to process the event and help with the stress/anxiety/ptsd I was diagnosed with. I wasn't referred by the gp or specialist tho I did it all independently. So in short your experience with follow up care does look like mine pre Covid, but I had an unusual journey to diagnosis & not a long time in hospital. Take care of yourself and keep asking for help/advice here and with your medical team Sarah
  5. 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
  6. 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 meant that in fact although I had to apply for, and be interviewed, for three of the jobs there was only one role that was possible. Unsurprisingly the stress of this made the interviews even harder! I did (and still do) feel very uneasy declaring myself as a disabled candidate on application forms as of course most people assume (wrongly) that disabilities are obvious but apart from being asked what adjustments are needed for the interview (generally by HR departments not the interviewer) I've not had to disclose more until further through the recruitment process. Ironically I've had only 2 days off sick in the last year and the person who got the new role that was created in place of my post called in sick on the 2nd day... you have to laugh. Good luck with the applications and interviews- practicing is a good idea, but I'd also arrange for that to include a recreation of your journey time to an interview location, and that dreaded waiting to be called in time as they I found they added a lot to the stress and fatigue of the process, Sarah
  7. 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 questions to be given to me in written format and also to be allowed a pen and note paper for scribbling key words. I've got as far as interview stage on about 80% of my applications and in these interviews it has been a mix of being given the questions 10 minutes or so in advance of my time so I can jot down key words, or them being given to me in the room as the interview started. My specialist also wrote a letter for me to show HR in any job outlining exactly what my limitations are. I hope this is of some help (I got the third position I applied for - although I have had a couple of interviews since) Sarah
  8. 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!
  9. 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.
  10. 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
  11. 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!
  12. 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...
  13. 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
  14. 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.
  15. 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
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