Jump to content

SarahLS

Members
  • Posts

    78
  • Joined

  • Last visited

Everything posted by SarahLS

  1. Hi Lynseylou, sorry to read that things have got stressful and worrying again, definitely chat to a pharmacist or GP. I know that when I got a bad headache just a few days before the anniversary of my NASAH I was in such a state that I got an emergency Dr appointment and they were really good at checking everything, calming me down and then getting me some counselling to help process all the emotions. I hope that they can reassure you, and that they can tweak your prescription if needed take care & try to enjoy Christmas
  2. Congratulations and as you say, here's to many more anni-versaries!
  3. Congratulations on reaching your 24 year milestone, and for weathering the downs as well as the positives
  4. Congratulations on the milestone!
  5. I don't remember the back pain too much , but reading that others have problems regulating their body temperature is reassuring in that way misery loves company. Whenever I ask about this side effect it gets passed over, despite me actually dripping perspiration on the floor at one appointment despite the day not being that warm. As symptoms and side effects go it is bearable but it can be embarrassing and unnerving to be completely the wrong temperature for the weather.
  6. Congratulations on your 21st Anni-versary.
  7. Congratulations on the 1 year anniversary, take care of yourself even when recovery doesn't seem linear
  8. Congratulations on the 1st year anniversary, it certainly was full of anxiety for me too but I am slowly reforming the date as a second birthday like Skippy suggests.
  9. I'm so relieved to hear thar others struggle with yoga (and some other exercise types) post SAH. So many people suggest that I take it up as it is low impact but the two times I've tried it in the last 5 years it's caused huge pain, dizziness and weird head pain. I was looking into seated yoga just as the pandemic hit so I must look out for that, these sessions were advertised for older people but I think my brain counts me in this group now. As ever thanks to BTG members for making me feel more normal!
  10. It was a really beautiful morning here and we went for a walk, pretty much out of nowhere it clouded up, the wind picked up and we had a few claps of thunder and a hailstorm. The only warning we had to cut the walk short was the sharp head pain I got out of nowhere - the bbc weather app had only a 5% chance of rain for the day and definitely no warning of a weather front/pressure change. Definitely an afternoon on the sofa after that. Here's hoping the weather settles soon, these rapidly changing conditions are not pleasant. They may not be as extreme as the weather many are experiencing but far more immediately & personally unpleasant.
  11. Hi CHall, glad I could help a bit too. I'm coming up on 5 years since my bleed, and while I'm not the same as I was before I'm definitely doing ok for the most part. I've certainly learned what is important and how to pace myself so I can do these things. I hope your recovery is going ok? Sarah
  12. Thank you so much for explaining this connection in categorising NASAH & stroke. My neurologist has never used the term stroke but my GP always refers to it as such and as all my care has been pretty good I'd not questioned either of them on this discrepancy in naming what happened to me. It also helps me know which box to tick when it comes to declaring what's wrong on insurance forms & when booking Covid/flu jabs etc. Five years on and still learning!
  13. As another perimenopausal SAH survivor I'm also wondering what my options might be if things get worse. Even before my bleed I wasn't allowed to have most variants of the contraceptive pill due the types of migraine I had so I am unsure what what will be offered. Crossing everything at the moment that things don't get much worse so I shall follow this thread with interest.
  14. As everyone was so nice earlier in the year when I was really struggling I thought I'd update a bit as I saw my neurologist yesterday. A face to face appointment (even with masks) was so much better and easier than the ones I've had to have over the phone and I felt I had much more of his attention and we could work through everything that happened as I tried the new meds, and how my head is now. My sky rocketing heart rate & BP when I tried the drug swap in Jan is a cause for concern as it is likely the original SAH was caused by vasoconstriction & a BP spike. He thinks that the SAH has left me with chronic migraine which do need managing, especially as I'm limited in what pain killers I can take and how often. Rather than trying another new drug we're going to tweak what I'm currently taking to see if we can reduce both the frequency of bad headaches and hopefully get rid of the constant tight band feeling that I've had since 2017. He's also recommended trying vitamin B2 supplements as there's been some encouraging research into taking this as a headache prophylactic. I think the best thing about the appointment was that he outlined next steps if this doesn't work, so that I don't get despondent or try to cope on treatment that isn't working. After the phone appointment in November I did think I was at the end of options and when it all went so wrong and then not even returning to how I was in November I was pretty depressed but I do feel both supported and hopeful again now. As ever thank you all for the kind words & support.
  15. Hi there, All the advice here is great and I also notice that Headway, the Brain Injury Charity, launched their ABI awareness week this year to have a focus on how much of a "hidden illness" a SAH is https://www.headway.org.uk/news-and-campaigns/news/2022/new-research-shows-more-than-three-quarters-of-brain-injury-survivors-struggle-every-day-due-to-their-hidden-disability/ the information here might help both family & work? I know sending my colleagues links to some of the Headway resources as I was starting back at work did help some people be more tactful if not understanding.
  16. Congratulations on the 5 year anniversary
  17. One thing my occ health helper advised was getting my neurologist to write a letter that clearly explained what had happened & how serious it was and to get it added permanently to my HR file. This was really useful at the restructure as some people were disbelieving that I'd had a SAH and had long term problems as I was only in hospital one day and hadn't had surgery. One high up person did say that I couldnt have actually had a SAH as I was still alive and that wasn't possible, I was also accused of hiding a mental health condition by lying about what had happened. The more evidence and support you can have as you negotiate a return the better...
  18. Hi there, I had my SAH in late 2017 and returned to work on a phased basis 4 months later. I started on 2 hours a day 3 days a week and over the following 8 months managed to build to 6 hours a day 3 days a week I never got beyond this as the fatigue, headaches & cognitive issues all kicked in when trying to do the work I'd done before. After a restructure within the council I was redeployed to a role with set hours but no restrictions on when I had to work them and this worked well for just over a year - well until the pandemic hit. Working from home took some rebalancing- too easy to do too much - but now I can manage to work half days 5 days a week. After hearing horror stories about our work place occupational health team I have nothing but praise for them and definitely recommend getting them fully involved from the start - they had so many good ideas on how to make things work for me. And it really was about helping me get better and not about my employers. Good luck with it all and definitely take it very steadily.
  19. I definitely echo the advice here, after my SAH I got very anxious when on my own especially outside of the house despite not having had issues before. With support from my husband and some very good (and understanding) friends I conquered this mostly - although I can still feel anxiety building if I get a sharp headache when out on my own. I had my SAH while at the dentist and when it came to my next appointment my anxiety really increased, almost to panic levels and it was at that point I saw my GP and got a referral to the local wellbeing service. Some sessions with a counsellor definitely helped the anxiety and PTSD. I also found some of the advice and exercises on the charity MIND's website helped while I was waiting and in Norfolk the local Well-being Service also has lots of helpful resources which can be viewed by people outside of the county. Be kind to yourself as you continue to recover sarah
  20. I'm feeling a little despondent this evening as my neurologist appointment was cancelled with just 3 hours notice - he has Covid. The appointment has been rescheduled for mid-May which I know isn't too far away but as I've already been waiting 8 weeks to see him this feels an eternity away. I'm trying to put a positive spin on it - I've just had Covid myself and it was pretty horrible, plus the fatigue and brain fog I'm still experiencing are quite severe - by May hopefully I will be back to "just" whatever's going on with my brain but tonight every thing just feels too hard & I needed to vent with people who will understand.
  21. Congratulations on the decade milestone, and thanks for all the help and support you've given me on my journey.
  22. I was so reassured to read this, I'd noticed in the summer that my head hurt when it was stormy but put this down to the humidity not the air pressure but the last week has been a headache week and I hadn't connected it to the weather until reading this. Today has been better but still windy here in Norfolk as well as wet/sleety. Hope everyone else is doing ok?
  23. Congratulations on your 18th anniversary - what a great milestone
  24. Just an update on how things have gone with the attempt to change meds...in a word terrible! It would appear that I am at the very least 'sensitive' to Candesartan as every time I take a dose I end up with a crippling migraine. My GP has been amazing and we've tried a variety of strategies to wean off propranolol and on to Candesartan. But when I had a headache that was nearly as bad as the original thunderclap along with horrifically high BP and a resting heart rate of 135bpm the decision was made to immediately stop the Candesartan and to restart the propranolol whilst trying to see my neurologist again. A day after stopping the candesartan the horrific headache had gone, back to the background 'usual' pain and two days later my blood pressure is stable and my heart rate down. That was a terrifying month. Not sure what will happen now, I actually have a face to face appointment with my neurologist at the end of March and reassurance that if I feel at all unwell I'll get to see or speak to a GP straight away. Onward & upward...and as ever thanks for listening!
  25. Definitely celebrate in a way you feel comfortable with - my mum insisted on being with us on the 1st anniversary and we went out for a 'not dying dinner' - possibly a little tasteless but it was our way of saying 'ya boo sucks' to the previous year. Even though this year wasn't quite as celebratory we did still cook a special meal & like Skippy treat the day as an unbirthday.
×
×
  • Create New...