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Everything posted by Carolyn250

  1. Hi there I’m based near Leeds in UK. I also had my bleed in covid times which was tough cos it means you’re alone in hospital - well done for getting through that 💪 i have found that different NHS areas have different levels of support and in my case it was non existent. I was SO relieved to find this forum. It’s so true, the bit where everyone says it’s early days - I thought I’d recover quicker but I didn’t. I’m 9 months in and tho significantly better I’m still fatigued, headachy and at times a bit low. I also still panic it might happen again but that is reducing slowly. And I don’t feel like the same person. Everyone is different but Feb is no time at all to be “back to normal” or back to work. I called my GP after discharge and he said take 2 weeks off. Lol ridiculous! Headway advise 3 months minimum. Normal will be the new normal and for me I’ve not even got there yet either. I am fighting the acceptance that I can’t really work any longer. I had to reduce to one day a week. I don’t qualify for furlough or any SSP we’ve just had to manage. I don’t know how you are supposed to I really don’t but again you are not alone. Have you called Headway the brain injury charity? Do. They may be able to help and advise you and it’s free. They are lovely Push your GP to refer you for neuropsychology - it’ll be absolutely ages before you see someone - I’m still waiting - but I think they are the only ones who know enough to be of any use to you going forward. I had no hospital follow up, no advice apart from here really and that which I chased up myself and to be honest tho the NHS were fab while I was in hospital, I now feel totally abandoned! But on a positive note - read the advise abs stories on here - it gives you a sense of what’s typical and do gave me a real feeling of calm. Come back when we you feel the need Drink water, rest whenever your body or head tells you to, it’s a marathon not a sprint. There’s no way to speed it up but accepting this might help too take care onward and upward
  2. In the UK some of us do and some of us don't get called back for a follow up angiogram. In some ways I wish I had, because I feel like it would put my mind at rest that nothing else had developed since I had my bleed. Go for it, take/ask for a sedative and maybe it will give you greater peace of mind afterwards x
  3. I spoke to Headway support person today. Really lovely and supportive and saying much as you are - “be patient. It will get easier”. It’s all about managing expectations. If they’d told me it’ll be a year in first place I’d prob be worrying less!! 🙄
  4. I’ve raised it with GP but standard - “well we can try but with COVID.......”
  5. Hi everyone I hope this finds you all well I am now 5 months post NASAH and with no one to talk to about this I'm just looking for a bit of reassurance on progress - or not! I am certainly improving compared to how I was 6 weeks in but improvements are incredibly slow and frustrating. Maybe I am expecting too much? I have headaches and neck aches/stifness as a daily constant. The buzzing/busy head is also pretty constant although when it isn't it's usually when I am more able to do things and feel more 'normal' The memory is pretty bad compared to before too and I have come to realisation that unless we have a major change my ability to work will remain restricted and soon enough I will have to give up and retire. I am self employed so no sick pay and no furlough either! I can't find any rhythm or pattern to this recovery process - is there one?? I certainly have several days at a time when i feel OK followed by (often) a week of feeling just and fatigued and "unable" generally. Although I can do easy stuff around the house and but walks out and driving are a bit of a no no I wonder if this is recovery or low mood/depression setting in - I know it's covid and winter so bit of a double whammy!! I have wondered if there are any neuro-psychology services that can be accessed but certaily can't find any - I am in W Yorkshire. Anyone know of anything?? I have contacted Headway but as yet not found much from them apart from practical legal advice etc And of course there are the panics - feeling makes me think things aren't right and there is something else going on or likely to happen. I know it's not logical but i can't help it!! Any top tips or advice you guys can offer? Gratefully accepted
  6. Oh blimey worry not. I’ve driven 3 times so far and just locally and only when my brain feels clear and with a fall back plan in my head! I haven’t lost confidence in driving but I know I need to consider my head state each and every time. I’m a long way from being a “hop in the car whenever I need to” driver again!!! 👍👍
  7. Thank you so much for your continuing support. I have posted an update in 'Adjusting mentally' so won't re-do here However what I would say about having a NASAH in the time of Covid is that I think you are required to push that little bit more. Covid backlogs meant that I wasn't even on the list to get an appointment for a follow up, never mind have an appointment! So I searched for my consultant named on discharge notes to see if he practised privately. He did so having spoken to him I feel like I have had my follow up! He also had my notes with him which was helpful and diligent on his behalf. Impressed DVLA - both GP and consuktant have now appended to my notes that they believe I am fit to drive. Both confirmed that since I hadn't advised DVLA as yet, there was no need to do so retrospectively as I am now fit to drive again medically. I have also spoken to Headway - not really relevant for me but useful to feel I had tried all avenues. And at least consistency in limited info available. Not cos they don't know but because everyone's experience is SO different it seems So thanks again and onward and upward as ever Carolyn x
  8. Hi all and thanks very much for your wise words, advice and support. Really appreciated. I'm now day 65 and there are some changes. I managed to track down my consultant as follow up appt at 8 weeks was never going to happen because of covid. I decided it was better to pay to see him rather than wait. Too many unanswered questions. I had 30 mins with him on a video consult and he didn't charge me. Nice man. He said the chat we had was what he would have done at a follow up. So I felt re-assured. In summary My various symptoms ongoing were to be expected. Headaches, fatigue, tinnitus, weird twinges and twangs etc He expected I would be better by Xmas 2020 I was ok to drive again and there was no need to tell the DVLA retrospectively My bpm should never go above 120 for rest of my life. Not sure when they historically have but it means I have to take exercise steadily to build up fitness but he did say I would be able to run again if I did this. I was now twice as likely to get this again but since UK population were 1.5% likely to get it, that means I had 3% chance - so not too bad! I also spoke to a lady at Headway the brain injury charity. She was very sympathetic, a bit vague but she did send me a leaflet about fatigue which explains that brain fatigue is different from bodily fatigue in that rest doesn't refresh it but that rest is very necessary all the same. She also said that doctors say 6 months but that in their experience, the biggest quantity of improvement is seen in first 6 months, thereafter improvements continue but at a much slower rate. Last week I feel like a turned a bit of a corner - i feel more like myself than i have since this happened and that is a lovely and hopeful feeling. I find that I can do more and for longer before i need to take a break - this is probably the most perceptible improvement yet. I have learned not to feel guilty about saying no I can't - but I do still feel a bit lazy so maybe I do still feel guilty after all lol. You guys have been the greatest support for me and I thank you all from the bottom of my brain stem! Onward and upward
  9. Thank you all so much for your replies. Your support is massively appreciated
  10. Also does anyone else get this. When someone comes to see you they say how much better you are looking and stay for a cuppa etc for an hour or more. I can most often chat fine with people and if I start to get tired they don’t always see it. Just remark how well I look. I feel they think I’m fine but inside my head is a different matter. It’s buzzing/tiring etc. I wonder if people think I’m putting it on because I look well. Inside vs outside??? How do I explain that?
  11. Thanks - I’ll see if there is anything like that for me. Covid has made things more tricky it seems. I’ve had next to no support apart from 3 x 10 min phone calls from a GP who’s never met me. Still no follow up from hospital
  12. Thank you all for your replies. It’s always very reassuring to hear from people further on than me. Did anyone get any mental support and if so what? NHS or private and did it help a little or a lot? onward and upward
  13. Hi it’s me again - sorry to bombard you all with questions! I’m now 6.5 weeks (not that I’m counting lol) post a NASAH. I have no side effects physically so feeling very lucky. I am finding the speed of recovery a bit challenging as I’m a get up and do person and sitting around isn’t really me. I have however become best friends with daytime TV (arghhhh!) as I simply can’t sit and do nothing. My question today is how you managed with this whole thing mentally. I don’t mean the anxiety attacks that wash over me unexpectedly but the whole thing about what just happened to me, what the future holds ie will I get back to normal? And how I regard the future. A friend asked me if I had had an epiphany moment....a phew that was close I’d better get on and live fully going forward and make most of my time. I said I was as deep as a puddle and no I hadn’t really. Thing is the fatigue means I’ve lost my mojo a bit. Although if I’m truly honest I think I lost it before the ‘event’. But the event should really be a wake up call!! I need to lose weight (about 2 stone would be good) but have battled with that all my life so why should this make any difference? I need to change my thought processes whilst recognising that this recovery could take longer than I ever imagined.... I imagined about 3-4 weeks tops cos no one told me any different lol - ever the optimist me!! I’m sure the answer is pace yourself, be kind to yourself and just focus on recovery but for me part of recovery is this whole mental thing too. What did you do? Did it work? Any ideas or tips or thoughts much appreciated. Onward and upward Cx
  14. Thanks Skippy i fully plan to live freely - I’ve no intention of being defined by this but I guess it’s early days although tbh I thought I’d be back to normal by now!!! Lol silly me! thanks for the inspiration and wise words x
  15. Oh no not harsh. Sound advice im not driving either!!
  16. Thanks guys Very lovely to hear from you. at least I don’t feel it’s simply a Covid thing! spoke to GP today who is chasing the consultant neurologist who saw me to see if I can get to chat to him As my out patient appt could be months away! Driving - GP says he thinks I’m prob fit to drive. Will await official confirmation but won’t advise DVLA because I’m OK again so why tell them? Like many I’m still struggling with realisation this isn’t going to be a quick fix - can’t get my head round that! Anxiety - hmmmmm that usually becomes more startling as I tell people and experience their “**** that’s serious” reaction! And putting that with the general fear it might happen again..... When did you start living more freely and less like a recovering person? How long after the event? And what sort of mental support have you found useful? Thanks again onward and upward
  17. Hi there is there anyone who can tell me how much medical support to expect normally post NASAH in the UK? i had mine end of June 2020 and reading posts on here I feel I’ve had little support - maybe becos of Covid? I called my GP 4 days after discharge from 5 day stay in hospital. They didn’t call me despite having my discharge notes. I have had 2 x 10 min phone consults from the GP and tho he is very nice he’s told me SO little. The hospital just said go home and rest An 8 week FOllow Up by hospital neurologist is not confirmed because....“we don’t know when as we are very behind because of Covid” said the appts lady. i recently learned I’m not supposed to drive and need to inform DVLA - from this site not medics i also read on here I should maybe be drinking 3 litres fluid per day what else don’t I know or should I be doing/expecting support wise? Has anyone had any support for anxiety or psychological impact? thanks for being here :o))
  18. Thank you for your lovely reply and letter to my brain 👍🏻👍🏻 does anyone know whether I can legally drive or if I need to report this to DVLA? Reading some of the posts on here has really helped me to understand a) I’m not alone b) my symptoms are not uncommon c) I think I’m doing ok considering d) I’m not going to recover as fast as I had ignorantly imagined! All of these are a great help thank you x onward and upward
  19. Hi there I’m posting to ask for some simple advice as I feel very short of info. I had my NASAH (Grade 1) on June 28th - middle of a field, out of nowhere, thunderclap headache, vomiting, light sensitivity, stiff neck. Assumed it was a violent start to a migraine! Husband came to get me. Felt appalling, made no sense talking and tried to sleep the ‘migraine’ off. Next day headache lessened a little but all other symptoms still there and now with a really fuzzy and uncomfortable brain feeling. I tried to work that week but it was too hard. I’m self employed and do 3 days a week as a Marketing Director. In the time of Covid getting medical help is challenging but I phoned to doctors twice and a week later the doc suggested I just get checked out at A&E. They kept me in, lumbar puncture, a variety of CT scans, cerebral angiogram, 2 days in HDU and an MRI and 5 days later sent home. My post here really is about what to expect - no one has told me, just that I need to rest but I’m a pretty active person and what does rest mean? Do nothing?? Literally? I get fatigue and headaches and all sorts of strange sensations, stiff neck, fuzzy brain, most of the things I see people on here experience (good to read I’m normal!) and of course I get episodes of anxiety - usually when I have possibly done too much (although in reality hardly anything) and I get tired and twinges and aches and sometimes little panic attacks - bleurgh! I’m not driving but haven’t been told I can’t. I’m not doing much exercise as too tired but want to do more just so I don’t turn into a complete couch potato! I didn’t work for 2 weeks after return from hospital but am doing probably the equivalent of 1 day per week spread across the week as and when I can. I don’t know what taxes my brain/body more? Physical or mental things? If I knew I would avoid the most taxing and do more of the other. I’ve no idea how long recovery will take? `I’m hugely fortunate that I have had no other significant side effects like vision or paralysis. I’m just hungry for basic info and I know everyone is different. I’ve read the NASAH threads and it seems some people take a year or more to recover fully (scary thought). Just simple info would be massively helpful Thanks for reading and best wishes in recovery to all on here x
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