KJ_online

Wow thanks everyone for such practical responses! I’ll go through all these later and might make some suggestions to my ops manager who may be able to help me out with E.g anti glare or larger screens. I’m going into the office more now than working from home because I don’t have space for a good chair/desk/screen set up at home. I definitely think it is the work itself too, not just the screens - I definitely get fatigued so much quicker now doing anything that requires concentration, not just on screens! And everything is taking me longer than before. But I’ll get there I’m sure. In my ideal world I would change job and do something that doesn’t involve any screens ever again but that’s pretty idealistic in todays world!!

Hi all, Karin here again. I've recently returned to work full-time after my bleed in Dec 2022, had done a phased return from March and last week was my first full hours week. Whilst I mainly feel so much better, I am definitely finding work on computers much more difficult than previously, and get headachy/SO tired after a days' work. I know this is an occupational health issue and my employers are definitely so supportive and will help me out with adjustments I need to make, but I don't really know what those adjustments are! As it doesn't feel like an eye problem (I'm not straining or getting eye-headaches due to the screen) but just general head-tiredness, and headaches around the top of my head by the end of the day. Has anyone else had this experience after a NASAH / SAH and had any positive adjustments to working on screens? My job is completely computer based so this is going to be a bit of an issue going forward if I keep struggling with it! I'm sure it will be fine eventually and it will just be a case of getting comfortable again but if anyone had any tips of what perhaps helped them, I would know what to try or what to ask my employers for perhaps. Thanks in advance Karin

Hi everyone I wanted to hop back on here and say I got married 2 weeks ago and it all went really well, soo much better than I was expecting. I was definitely worried in the run-up to the wedding that my fatigue would be overwhelming, or my head/ears would hurt a lot, and I wouldn't be able to enjoy the day, but in fact it was amazing. Obviously I was exhausted afterwards (I'm sure most people are after a wedding, regardless of recent brain haemorrhage!) but all things considered I am so pleased with my recovery and that I was able to have the wedding which we planned for without too many adjustments. I wore my earplugs as loud noise is still difficult for me, and the tinnitus seems to be fairly permanent now since my bleed. I did have some quite extreme ringing in the days after the wedding but I was expecting that, and it's slowly subsiding. The exhaustion hit me heavily a couple of days after the wedding but definitely not as badly as I was expecting. I realised that I got married 5 months to the day after my bleed. It was a pretty great way to mark my recovery! I'm also now nearly back at work full time, but still finding long computer days tiring (more tiring than a wedding!) so am having to think longer-term about work patterns and whether I may need to shift into a role which is less screen-based before too long. Hope everyone is doing well. All the best to everyone on this forum Karin x

Hi Denise, I hope you don't mind me commenting on your post but I'm having some of the same experiences as you this week and thought it might be better just to join in the conversation here rather than starting a new thread.. I've had some lovely support on here already, and reading back through this forum has been really helpful when I've felt alone in this whole experience. Thank you again so much to everyone who so thoughtfully responds to us. I won't repeat my whole experience as I wrote a long post on the Intro Yourself section but I had my NASAH on 19th Dec, so I'm just over 3 months out. I started going back to work about 3-4 weeks ago, on a phased return, starting on 2 days a week for the first month or so and then I plan on increasing to 3 days after Easter if things are going well. It started off really well and I loved being back. Despite it being tiring it felt like a dose of structure and normality in my week after 3 months of not working (which I had found really weird as work had been pretty all-consuming before the bleed!). However this past week I've taken a nose-dive. It could be a number of factors, including that my sleep is poor again, and I had one quite full-on day over the past weekend where I actually had to accompany a friend to the same hospital I had been admitted to, and sat with her in A&E til 3am with a complex but very different ongoing brain situation she is dealing with, very strange coincidental timing (it was all a bit triggering if I'm honest!). That whole experience may have knocked me a bit. Anyway the last 2 days I've been SO wiped out, I haven't been able to manage even my reduced hours and have spent all of today in bed. My already-constant tinnitus has become deafening at times despite just being at home quietly really, I am getting little sharp stabbing headaches and all the really odd 'stinging' /icy sensations all over my head inside my skull again. I've been unable to concentrate or be productive at work even on fairly simple things, and I've not been able to handle barely anything stressful without getting teary -- including the fact that these weird head sensations are coming back when I've had a good few weeks without them. I'm torn between feeling so incredibly fortunate and grateful that I have recently had the clean bill of health after my follow-up MRIs and 3 month appointment discharged me from Neurosurgery, and feeling really adrift and alone not knowing how to deal with still feeling awful some days, and not having anyone officially to talk to anymore about my concerns . My GP has been pretty unhelpful previously on this -- as some others have mentioned on here, they don't see many NASAHs! And not understanding why after several weeks where I really felt I was improving week on week and getting back to myself, this week feels like several steps back. I've mentioned elsewhere that I'm getting married in about 7 weeks time, and these past few days have made me so anxious about being up to it by then. I mean I'm sure I'll be able to get through it, but I want to do more than just 'get through it' -- I'd love to be at my best and enjoy such an important time in my life! I know my fiancé is worried about me too this week and doesn't really know how best to support - because I haven't really known what support I want either. Denise, I wanted to ask how you're feeling now? What did you decide about work, did you remain on reduced hours, how have you been coping? Thanks to anyone who reads this.... Hope you are all having a good week. xx

Hi Jo, Glad to hear you are doing so well! As everyone is saying you are definitely still early days but it's great that you can be walking so much. I'm also glad you've got some loop earplugs! I love mine now, they definitely seem to help when I suddenly feel the need to muffle some of the sounds around me - have been using them in the office back at work this week. I also use them on public transport and will almost certainly even use them at my own wedding in a few months!! The tinnitus is such a drag. I also have ringing since the bleed in my right ear, definitely worse / more noticeable after a day where I might have been exposed to loud sounds, e.g. got the Tube without my earplugs. I've had the pulsing tinnitus quite a lot since too, which had been stressing me out a bit but it tends to be when I'm tired or have done too much -- and it's probably that I'm just hyper sensitive to all the sensations in my head and ears now. Also -- definitely don't feel guilty about going out for walks but being off work. It is definitely very different to be back at your job, compared to taking walks for your healing. I have found this in the last 2 weeks returning to work -- have found the brain-work and teamwork / social side of my job so much harder than I expected! So am having to really take it slow and be patient. I've been doing half days, but this Tuesday I did my first full day and I definitely overdid it, should have gone home a good few hours earlier than I did and suffered with such weird headaches, and ear sensations and just feeling a bit weepy and emotional by the time I got home. Lesson learnt! Take it slow. All the best and hope you continue to find this forum as helpful as I've done and lots of others too, Karin x

Hi @NicolaR, really hope you are doing well. I'm glad you've found this site! I found it soo helpful when I came out of hospital. Like Jo I'm also 33 and living in London and also had a NASAH recently (December). I would really echo everyone's recommendations to take it really really easy, you are less than a week out from your event and at this stage many of us were still in hospital (or only just coming out) please please please rest as much as you can if you have support around you to do so! I am about 10 weeks out from my bleed and only just going back to work this week. At your stage after my bleed I was unable to do anything much at all other than lie down. The symptoms have been a real mixed bag for me, hoping you don't get a lot of them, but I'm sure it depends a bit on where in the brain our bleeds were? I am finally free of most of them. I'm so sorry your doctors' bedside manner / being discharged left a lot to be desired -- seems to be the common theme with those of us having had NASAH that many of us are just told to go home and get on with life! I feel fortunate that I had some great doctors at the hospital itself (I was at royal london) who did prepare me for the recovery journey being a bit rough (e.g. recommended I took at least a month of work, and now I have hit 10 weeks) but yes my family and I were not armed with much info and from my experience, GPs do not know a lot about these bleeds. This site has been so useful in realising that even though I'm sure the doctors of course know what they're doing when they say to us, get on with life, they don't prepare you for some of the weird symptoms / feelings in the head during recovery which after reading this forum I realise that so many of us have experienced on our route to recovery. Which did wonders for my peace of mind when I was experiencing them. Last week I had my repeat MRI scans and my doctors appointment back with the neurosurgeons and they have given me the all clear that the scans look fine and now that I know that, I really feel that I am able to 'get on with life'! So that is definitely a big relief. But it definitely has been a journey (mental and physical) to get here! Re DVLA by the way, I didn't end up informing them (my doctors didn't tell me I couldn't drive) but I personally didn't drive for probably 6-7 weeks after the bleed, but that was just because I really felt I wasn't able to. All the best to you as you recover, and like Jo am happy to share any more of my experiences Karin x

Hey Jo, Wow what a mirror experience we've had... I suppose I am about a month ahead of you or maybe less in terms of recovery, I definitely feel like the last couple of weeks I've made more progress with recovery so hopefully this is on the road ahead for you too! E.g. this week I have definitely pushed myself more and it's been okay, for example I got the tube for the first time (haven't had the energy to do much outside the house until now, and have struggled a lot with loud environments so the tube has not been very tempting..!) but it went okay with some Loop earplugs that I bought. As I mentioned in my first post, I had exactly the same pain and spasms as you after leaving hospital (terrible sciatic / lower back and leg) but that pain has been managed by some nerve pain medication I was given after also going back to A&E and then seeing a GP who eventually prescribed stuff which worked. I've been on it for coming up to 2 months and am just reducing my dose down now. Once the physical pain was handled I have been mainly dealing with a lot of fatigue and really frustrating tinnitus/painful oversensitivity to sound (I haven't had any vision-related issues really, it's been much more in my ears -- which was even the case when the bleed had just happened, so it must have been about the location of the bleed as to whether it affects our eyes or ears more! -- that's me guessing anyway). My consultant appointment got pushed back from Feb 9th to March 3rd which was frustrating but yes still within 3 months of it happening. Looking forward to that and asking all the millions of questions i've been mulling over the last several weeks... I'm currently still signed off from my job, which is coming up to 8 weeks, but have just this week started a very gentle phased return. My work was very stressful before Christmas and my boss has been very understanding at giving me some non-urgent, less-stressful tasks to get on with first, rather than diving straight back in. I definitely feel my capacity has been reduced, and like you have definitely had increased anxiety since it happened, some related to the event but some just very generalised anxiety.. Wedding planning definitely halted for a good month but we seem to be back in the swing of things now and hopefully all will be okay, by then! Exercise-wise I have almost ground to a complete halt, but am trying to figure out the best types of exercise to restart with. Thanks so much for commenting on my post, given our very similar experiences I'd be really delighted to keep hearing about how you're getting on and perhaps we can share things that are working / not working for us. Karin x

Glad to hear your recovery is going well Dave, especially on the reduction of pain! Slow and steady. You definitely seem to be able to do more than me each day; my pain is dulled by the nerve pain meds I ended up being prescribed which I appreciate a lot, but the fatigue is crippling some days, I didn't get out of bed until 3 yesterday. Today is better -- I'm downstairs and was hoping to go for a bit of a walk but the weather is against me here!! Laps of the house it is. I also have a phone appointment this week with my GP. Interested to hear what yours will say. And interesting to hear from others that GPs may not have a lot of experience with NASAHs and that we should retain contact with our neuro-consultant -- I can imagine that is prob true. Hope you can return to some of your more fun activities soon! So nice that you live near the sea and enjoy sea swimming. I'm sure going back to swimming would be a great activity eventually.... I imagine it would be best to swim with someone else nearby whenever you do restart swimming (maybe you don't swim alone normally anyway so that wouldn't be a problem!) Re DVLA, I personally haven't managed to inform them yet -- I don't have any intention of driving anytime soon, and was wondering about just absolutely not driving til I next see my neuro consultant, and if they say I am fit to drive, do others think I still need to inform the DVLA after that point? I'm just trying to reduce admin to be honest...! All the best for the week ahead, hope your recovery continues as well it has been! Karin

@Swishy @Skippy @Dave W @Louise @Tina Thanks so much again for your supportive messages! I do keep having nightmares, some related to my hospital stay and some just completely off the wall horror-film nightmares (I've never been a nightmare-y person!) so hoping they subside too, maybe they're a meds side effect rather than a bleed side effect. In terms of flashbacks, bad dreams, sadness etc I will keep an eye on it, and seek some help from my GP if they persist for a while longer... The numbness on the right side of my head around my ear, which I forgot to mention in my original post, is subsiding which is nice, still have tinnitus in that ear and hope that goes away eventually. Just trying to notice all the little improvements, or if I manage to do something new again for the first time -- helps me feel positive I've had to up my dose of nerve meds (the doctor prescribed me some Pregabalin) so I am just adjusting to a slightly higher dose of that, it really has numbed my unmanageable nerve pain I was experiencing. The pain is still clearly there but it's like the meds have wrapped cotton wool round my nerves. Still napping a lot and unable to even go for a short walk along the road without total exhaustion, am getting very bored! Am trying to really hydrate more than I normally do too as everyone is suggesting on this forum. Wishing everyone a good weekend, Karin

Hi everyone, Thank you so much for all your supportive replies. I am playing good-day-bad-day roulette at the moment it seems. Today is a better day, I've managed to do a few handover things for work since I left a number of things unfinished before my unexpected dramatic start to my time off! (That 30 mins of computer work tired me right out!) But still feeling quite faint when I get up, sciatic pain easing (no spasms any more) but the deep ache remains. Have had some quite distressing nights, I am getting terrible dreams/flashbacks to the scarier moments of my hospital stay, making me not want to go to sleep some nights. I think I'm finding that now that my pain isn't so completely all-consuming, I have more headspace for the more traumatic thoughts and/or emotions about what has happened. So just working through that, have woken up a few days just feeling inexplicably sad. Even though 90% of the time I just feel so grateful that I've been so lucky, the negative emotions are creeping in sometimes. The fatigue is just like nothing I've ever experienced... Still, I'm very grateful that the nerve pain is more under control. Hope you are all well, Dave how are you doing since we are at similar stages with our recovery, time-wise? Hope things are improving for you.

Hi Dave, I am just amazed to read your account as I have also just recently had a PMSAH, two days after you 19th Dec. So much of your story is the same as mine, I won’t type it all out here as last night I wrote an “Introduce yourself” post, I think I’ve linked it below. My current terrible battle is sciatic pain, my headaches eased a lot whilst in hospital last week but the neck, back and sciatic pain worsened after leaving hospital so had to track down more pain meds after being discharged. Wishing you all the best Dave in your recovery - am on the journey alongside you!

Hi all, just to introduce myself: I’m 33 and suffered my NASAH ( I think perimesencephalic) on 19th December so I am 11 days out. It was a very traumatic experience especially given current situation our wonderful NHS is in (I’m in London so am aware I’m more fortunate than many other regions!) I was in A&E across two hospitals for an agonising 23 hours following my NASAH, before a bed became available on a neuro ward. I was in hospital for 4 more days, they did a cerebral angiogram to double check for no aneurysm, and then discharged me when they were content with my results and my pain management. I came out and was able to be home for Christmas, but the pain has just been unmanageable since returning home. I was discharged with paracetamol, ibuprofen and a little codeine, and nothing was touching the sides. The headache thankfully had lessened whilst in hospital, but the stiff neck remained and the absolute worst pain has been sciatic agony in my lower back and down both legs. I have huge spasms where my legs almost give way and can hardly walk without assistance, and sitting is also hard as is lying down so it got pretty desperate because nothing was giving relief. We tried without vain (obviously over Christmas) to contact my ward and also my GP about more pain relief; once the GP opened after Christmas I couldn’t get an appointment until 9th jan. I resorted to returning to A&E where I waited 8 more hours and left with three days of low dose diazepam. Eventually we decided to bite the bullet and pay for a private GP appointment who finally prescribed me something more for the nerve pain (pregabalin). I am still in lots of agony but the spasms seem to have lessened. Am so glad to have found this forum, it has been a very scary time and I haven’t managed to find much out about my type of SAH apart from on here. I also feel like I was discharged from hospital armed with insufficient information, and not a lot of follow up - vague mention of a consultant appointment within 3 months. I am daunted by how long the recovery may be: I’ve initially requested 4 weeks signed off work, but from reading here it seems that might be too ambitious. I’m also getting married in May and am anxious about the fatigue levels still being around by then Obviously everyone’s recovery is different and my family are so optimistic about my recovery being quick, I want to be optimistic with them too but inside I am worried. Big thanks to those who run this forum and to all the other posters. It seems like a very supportive place. Karin x