Jump to content
Search In
  • More options...
Find results that contain...
Find results in...


By registering with us, you'll be able to view our forums in full as well as discuss, share and private message other members of Behind The Gray. Why not join us now?


Super Moderators
  • Content Count

  • Joined

  • Last visited

  • Days Won


Daffodil last won the day on March 1

Daffodil had the most liked content!

Community Reputation

5,972 Excellent


About Daffodil

  • Rank
    Super Moderator

Contact Methods

  • Website URL

Profile Information

  • Gender
  • Location


  • Biography
    Mum of two daughters, married living in leafy buckinghamshire. I had a Grade 4 SAH and presented with acute hydrocephalus in March 2012 when I was 39 but the bleed was was successfully coiled ( just a teeny neck left) and a drain fitted to balance fluids. I spent a long 7 weeks in hospital before discharge with a fair stint in HDU . Unfortunately my hydrocephalus reoccurred post the SAH and I was readmitted with flashing blues and ended up spending another 4 weeks eating the hospital food and having an adjustable shunt placed in July 2012.

    Now nearly four years on and life is more steady for me ,I'm back working part time for a large consulting firm in HR strategy, my neuro folk check my coiled and the second uncoiled anni yearly and despite there having been lots of bumps in the road with some grey days ( excuse the pun) throughout it all this forum has been a very helpful and reassuring place to come for help.

    I'm mostly enjoying some better days now and am now privileged to be a moderator. I also started blogging whilst in hospital having my shunt placed and still blog occasionally about my experience .
    If you want to read my more Personal account of my SAH recovery you can find it at http://popgoestifty.blogspot.co.uk/
  • Location
    Bucks, UK
  • Interests
    Swimming and baking
  • Occupation
    HR Consultant
  • SAH/Stroke Date

Recent Profile Visitors

2,300 profile views
  1. Hi Margaret. there are a few doctors who have come through forum and whom I believe are back working. I’ll try and findlink to that thread but also do think that you probably do know where your limits are now and that’s not to say they won’t continue to change, they will , but equally if you feel ready then I personally would say lean in and try but be honest with yourself. Like you i was 39 when I had my SAH and later got a Shunt placed so things are permanently clunky with my Head these days , but that said I wanted to know what was possible, what this reformatted brain could do and where my new limits lie. I do a complex job, lots of analysis , detail and negotiation and work part time half day mon- Friday plus looking after two teens and importantly balancing my rest and my interests. I don’t socialise much these days as the late nights disagree but when I do work full days which often means travel into London too then I struggle the next day still. I am 7.5 yrs out but know I get huge purpose from my work , ( the wage is Important too for our household) and equally my employer get good value from me. Ego wise I would still like to think I could go full time again but my Neuro folk agree it’s a marvel I do what I do now and I think it’s unlikely I ever will. Balance is the most important I think. Work, money , we know that’s pretty essential but equally health and ability to enjoy time outside work is very crucial too. I say dont be boxed in by conformity to the norms, be disruptive and design what works for you, work is changing, sounds like you have a specialised skill so me thinks people may be happy to work around that and find news ways to satisfy that ambition streak ...you may be surprised.
  2. Yes don’t worry ever about speed of reply, So one of the reasons I paid to go privately because I had a rogue locum at my surgery who decided to say I couldn’t drive unless I had another LP!!! Grr...so paying £100 seemed a sensible route to be able to investigate what was happening with the headaches etc and assured DVLA that I was sound to drive. neurologist trumps GP! I’d already had scans as have them annually. I think NHS care amazing for the most but if you can get seen to get checked faster then I have to confess I would do that now, they would always refer back into NHS/GP if you need more treatment for any reason but sometimes for speed it can make all the difference to peace of mind...as Win would say, we don’t do well on stress. For me the fact I am perimenopausal the neurologist seems to think that in the same way I used to get migraines when I started my periods, now I am coming to the end of them I am getting again but they show up differently in how they present. Good luck and let us know how you go
  3. Louise, surely our founding Shunt club member...you and all the Shunt gals gave me strength to face my fears and worries when I found BTG after having my Shunt placed and feeling just rotten , you have faced many shifting tides but always kept the wind in your sails. Sail on my lovely, Daff x x
  4. Sarah, meant to post about my experience 12 months ago now where I had to go see a neurologist for some checks after shall we say odd symptoms and the conclusion is that I now have a variant of ocular migraines, something I nevertheless had pre SAH I did get migraines, but now I don’t get them like that, his explanation was that it tries to flick the same switch after being triggered and other lights go off !! That made sense to me. I had a change in meds I was already on for BP to one that helps with migraines and to date I can report pretty good. I was 39 when I had mine. Periods went off the wall for a while, got heavier( sorry chaps) , settled a bit and then perimenopausal for the last couple of years. I was 47 this year. Was also told it can early onset the menopause. I get way more forgetful around my period now , increased head pain too but also at this time of year I need way more sleep...who knows what’s going on really. Take care daff
  5. Well done Sarah, it’s an anxious time during that procedure. I recall the flashing lights but agree they didn’t mention driving when I had mine...mind you I couldn’t drive yet then anyway! hope what he suggested stands and nothing further needed. sleep well.
  6. Hi Bev first I am sending a big virtual hug and positive vibes as I think i know some of what you are feeling. So basically your ventricles have some function, but not enough to regulate properly and so then you live in a world of ‘high CSF pressure’. The relief from an LP is short lived ( which is saying something as such horrid procedure] as once the effect kicks in you barrel to ‘low pressure’ and then climb back up again. I had shunt surgery in July 2012 after my SAH in the March before. Initially I spent 5 week after bleed in hospital, had Grade 4 SAH And EVD , sharing to give you context so I was in a pretty bad way. Prior to my second surgey to place VP shunt I spent 10 days whilst they deliberated to place a Shunt or not and I had far too many LP’s during that time to Try And manage pressure And kick start ventricles. It didn’t work . It’s not a time I like to recall if I’m honest. The decision to have the Shunt was a relief, I couldn’t bear much more and wonder if you possibly feel similar. The surgery was hard, I will not deny that , but make sure they get the pain management approach right to deal with the effects of how much CSF gets lost during surgery. We can’t give medical advice but I will say that only subcutaneous slow release of meds was successful to manage pain For me in the days post surgery. I was a guinea pig at time as it’s similar to what they do for cancer patients. I stayed in for another 2 weeks, ( missed the entire London 2012 Olympic s And id had tickets!!) . The scarring was quite significant, big haircut yet again And the surgery site was sore and ached, but here’s the thing, even with all that I felt a bit better. I didn’t have the same pressure level once things settled. It did take me quite a while to get the right setting for me and I shared that story here However everyone’s different and I am VERY sensitive to any pressure change so I’m told... Bev, any surgery is scary I know, we will all send you our best wishes once you get a date. This will be a step back in many ways as you will Be floored again but by getting the pressure balanced your brain can better recover from the Hydrocephalus effects and bleed. Feel free to PM me . daff
  7. Sarah I have just started remembering the occassional dream but nothing more...and same goes for reading novels like Clare, I am 7.5 yrs on from mine Daff
  8. Agree with Louise on the Hydrocephalus,get checked if worried , I think you know if things deteriorate, for me symptoms got increasingly worse, like a dulling of the entire senses and then my balance went, it was very obvious when mine came back and I had been warned it was likely as my ventricles were badly damaged and had to have a EVD for about 5 weeks. . But get checked out if you are worried. A scan can be done which would show any change in ventricle size but I suspect that you are feeling the effect of hitting a fatigue wall and it’s Horrid an day knocks confidence. Take each day. I think telling people is a good thing to be honest, being honest that yes you are looking well and physically you may have regained the weight you have lost but are just at the start of figuring out the changes and what’s different and it’s not easy and you don’t feel great . Tell them you may need to take breaks and it’s not you being rude but building yourself back up with consideration for your hurt brain but to bear with you. You will become an advocate for what you need and don’t worry if you feel a little selfish with that, it’s ok to focus on you right now.
  9. Hi, a hot shower will have an effect to raise your blood pressure, albeit the effect may be marginal but even this slight change can bring a headache or dizziness but I would always recommend talking that through with a neurologist if you can and seek some professional advice. Take a cooler shower and maybe sit for a while after rather than just lying down . There is a need post bleed to ‘regain’ ‘reclaim’ our lives as we knew it and to try and pick up where we got knocked over and for a few that works just fine. For those that don’t have obvious physical deficits that are common it can be harder as they seem’back to normal’ but of course there is healing still happening. Most who come through BTG report however it’s not ever exactly the same, things we did with ease, seemingly with no effort or ill effect now takes its toll on us and then that effect cumulates together and it shows up with ‘brain fog ‘ and other effects. There are things that are just everyday life events ‘triggers’ which for me run my cognitive battery down fast, I’ll give you something examples of things that effect me: strong wind loud repetitive noises people talking over each other hormonal changes sudden drops in barometric pressure bright flashing lights I call these my triggers and the effects will give me ‘warning lights’. if I experience these kind of triggers I know I need to make some adjustment, it may be to wear sunglasses inside, earplugs, a hat, but even then I know if I do something else that is cognitively demanding I’ll have less battery charge left And then I’ll get my warning lights;sudden headache, increased fatigue, balance issues, losing words , and if I don’t change my pace and rest and slow then it will get worse. Im seven years in, but was 39 when I had mine and had two young kids , good job. What I have had to learn is to really let go and focus on what was right for me to get a balance that keeps me steady to enjoy every part of my life. Know where the effort needs to go. Tell her to get BP checked, maybe also her vitamin and minerals (bloods) and then to just take stock and to ask herself is it possible she asking too much too soon. if she had hip or knee surgery she wouldn’t be back running marathons. She needs to ease her brain in gently and be kinder to herself. She’s still healing from a trauma to her brain. Daff
  10. Chris, keep on keeping on fella. Best wishes across the pond to you , Daff x
  11. Hi Terry I expect you will get a few more replies now, the site had a few technical glitches this week so had a little downtime but we are back now to normal service. I recall Veronicas posts and glad to have you join us as well and hopefully you’ll get some help and reassurances too. As clare says in the UK it’s quite different driving wise and after an EVD placement driving is stopped for 6 months automatically. I actually had my Hydrocephalus return after my SAH so ended up having a Shunt placed few months later which meant I couldn’t then drive for well over 15 months from when my bleed happened but tbh knew i didn’t have the stamina and attention for it. The first time i did I did a long journey as a passenger, I was in pieces and it took me days to recover afterwards and then I realised the cognitive efforts we are used to for familiar tasks is actually massive and when our brains are injured it’s going to take time. Night time driving with lights is still a challenge for me and I don’t do long distances as often. im going to use my favourite analogy for you, you need to start working out where your traffic lights are for fatigue triggers and what concentration does to your energy and heed them. If you run a red there will be consequences...buzzing, pain, days in bed, so try to start plotting what is possible and build up slow and steady. If you do too much too fast then note that and try again but this time changing your pace or reduce how long you drive for . Multi tasking is not great for anyone I think but not us especially post bleed and Hydrocephalus effects. When you drive try to limit other stimulation like radio, conversation, introduce this gradually. Rest after every journey, find somewhere completely quiet and Be still. Also don’t underestimate the impact of vibration, movement and sound, it’s also using brain energy , you may want to see if ear plugs and sunglasses help you a little. Its really early days tbh But it slowly gets better, and no I don’t think exploring limits is bad but heed those warning signs and If you can that’s going to help you build a better adjustment to this new operating version of you. Go steady and Hi to V
  12. Basically I got told no skiiing, no bungee, no scuba, no rollercoasterS! Tbh I couldn’t imagine doing any of those now with my Shunt on board anyway so was fine with that. i have found altitude can affect me, high wind, sudden drop in atmospheric pressure but California should Be pretty good weather wise I imagine unless it’s high humidity. You need to go with what’s comfortable for you. I for instance could not bear a theme park of any kind even now and whilst i have managed a couple of concerts since I really struggle with the noise, intensity and sound of that kind of event.....it wipes me...and I loved gigs....but I still go, some bands are worth the toll! you’ll find what works . if you are back at work and feel ok then just probably avoid anything that could cause sudden jerky movements....you’ll know if it’s no good. Give yourself a little more consideration when you travel , drink lots of water and take more rests, but have fun. Daff
  13. Well yes and no. Mainly it’s cos I have a neck on my aneurism and another small one . Oh and then my Shunt has required the occasional check too....I do think this will Be my last year of scheduled scans, 7 yrs on and it’ll be good not to go in the donut machine each year but they definitely helped reassure in early days after care is so hit and miss. For me I had angiogram 6 months post SAH then annual MRI’s and I will go to Shunt clinic for rest of life I think but know each has a very different experience...
  14. Yes I have done and still do get it. Makes you feel really out of yourself whilst it is happening and literally feels like trickling sensations. I then get what i call ‘ hot head’ straight after and like you have to get up and just drink cold water and sit upright for a bit. i have annual scans so know nothing is changing which helped me not worry so much but when it first did yes it was a concern now I actually think when I have a significant feeling like that it seems actually a shift in healing. I often notice after I have it, and it’s rare occurrence now, that in the weeks after maybe my cognitive stamina would improve or I would get something back. maybe see if you notice any improvement afterwards?
  • Create New...