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Everything posted by Daffodil

  1. Roberta I self studied as an aromatherapist just out of personal ambition when I was in my twenties alongside a very different career and I used that from when I discharged after my SAH and Hydrocephalus. I had a grade 4 and also a Shunt placed. I have to be very careful with oils, i know the ones I can use and to avoid. if I have a massage even now after nearly 8 yrs I can’t have a full body without it effecting me greatly, but light touch and arms and feet are a great relaxation I found. I wasnt offered any alternative therapies, I used to use a lot prior but not all sit well with brain injury as over stimulate sometimes..now just meditation, occasional massage and regular use of oils and mindfulness. I think .you will be an insightful practioner I am sure due to your BI so go easy and be kind, it’s hard work studying for everyone. You’ll get there, no prize for rushing it,
  2. Hi Bri, Try and get hold of your neurosurgeons PA and ask if she / he can email a copy of report to you to then send to DVLA. Tbh if they have cleared you neurologically that’s all they are looking for. I had an EVD and then later a Shunt...15 months no drivingafter being revoked !! Some of that down to DVLA and consultant delays but it took a letter from consultants finally get the yes from DVLA. I never had to take an eye test. but more recently had an over eager locum decide that a short bout of blurring which was full investigated by emergency ophthalmic consultant m full eye and vision test and no issues but he decided in his wisdom ( or lack of it) that it meant I couldn’t drive ( basically he was annoyed because I didn't agree with his assessment that I should have an LP, i pointed out Had he ever had one and that I’d had at least 10 so I would have to decline as hospital was happy ) but he informed DVLA anyway! I was floored and very distressed, I actually paid to see a neurologist privately,cost me £100 , he tested me, reviewed my latest notes and sent report to DVLA confirming my fitness to drive and I was immediately told I could continue without it being revoked and they would confirm in writing. Good luck. But yes patience is key, that And dogged pursuit of anyone who can influence !
  3. Hi Jenni Please believe me when I say that your daughter will not care about missing outings to shops and for now you need to give yourself permission to heal, slow everything down and just be here enjoying the now as best you can and to take each day as you can. Explore different ways to share Christmas with your daughter,go on short frosty walks to get the fresh air and winter sunshine when it fleetingly appears, make mince pies together, make old fashioned paper chains, get partner to drive around looking at xmas decorations and counting trees... these are all things that will still take you effort, still use your energy but won’t have the same cognitive overload that Christmas shopping will take from you early in recovery. If you do venture to shops avoid weekends, wear sunglasses and ear plugs and limit your time there and rest after. Everywhere will Be busy and noisy an each is an assault to the brain whilst it heals. Do your shopping online!! Better yet give someone else the list this year! i understand entirely, you feel you should be able to do this after all it’s so easy right? but try please to see that right now everything that used to happen previously without much thought and effort has changed as the brain ability to proceed and filter stimulation is a bit bruised and altered from blood going where it should not have been. Invest your time and energy wisely now and it will pay healing dividends. Post mine, I had to contend with further surgery , couldn’t drive for 16 months,there was no way I could shop unaided for even longer, absent from work for longer still and That was with me Being rushed into hospital within one hour of mine...and surgery within 3 , that said I was working on what was usually a day off. For sure Had I not worked that day I would not be here. Look for the positive if you can, yes you were seen, you were helped and thankfully you are here and home. 2 out of 3 sadly do not make it home. Of the 1in 3 of us that survive a SAH 1/3 of us live with lasting deficits or disability from the bleed and that is going to take adjustment and it won’t happen fast . You can’t change the past, you can only count from now, onwards with curiosity about the possibility of a slightly altered course. Go steady , we are with you.
  4. Jenni, The fact you’re were walking and talking when you went into hospital meant they didn’t recognise the symptoms ,not great I know and others have experienced similar and then sadly they couldn’t get the positive confirmation of a bleed with a LP . As I understand it a CT scan isn’t as clear as a MRI to confirm blood in ventricles and arachnoid space and whilst all bleeds are incredibly serious , depending on the grade of the bleed it may mean less blood is present , as does where the bleed is located, there are so many variables so often the LP becomes the check point if unsure. My daughters were 6 and 9 when I had my SAH and they had to adapt to mummy being very poorly for a long time An day unable to care for them and then not driving for well over a year and generally not able to do everything as I did and everyone here told me not to worry, that they would weather it, just to Be honest with them and kind to myself as I healed . They were right. My girls are 16 and 14 now and they have grown into compassionate and independent young women, and a deal of that is down to their experience of supporting their mum, and that’s ok, and you know what ? They wish it hadn’t happened but they also see the value of having lived through it. Life goes on. We learn, love and go on. You will too. The BTG gang knew when they gave me that advice over 7 yrs ago that the best way to recover and adapt to change is to look after yourself and don’t beat yourself up and about the whys and regret. Your little girl has her mummy, that’s the key thing to celebrate , nothing is going to change the fact that our bleed happened, so slow it all down, don’t worry about what you could have done differently.
  5. 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.
  6. 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
  7. 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
  8. 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
  9. 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.
  10. 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
  11. 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
  12. 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.
  13. 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
  14. Chris, keep on keeping on fella. Best wishes across the pond to you , Daff x
  15. 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
  16. 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
  17. 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...
  18. 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?
  19. Absolutely it’s scary. First what happened is a major life event, no small thing at all so give yourself time to heal. you are here to tell the tale so don’t brush it under the carpet, stare it in the eye and then make some changes to accommodate what has happened. Your memory may be off so carry a pad and write everything down. Leave yourself post it notes, write lists. Yes you may have had a great memory ore bleed but for now it’s a little disrupted.. If you give yourself the kindness and consideration to take more time doing what you did previously and rest as well your body and your brain will thank you for it down the line. You know if someone spills a drink on a laptop or drops a phone down the loo. Yes you can dry it out with rice but often keys don’t work or the screen is a bit different in places...that’s kinda like us! your brain had blood spill over the surface of what is essentially your circuits and that is going to knock a few things out, change around how you navigated thoughts and actions and just generally give you some odd strange effects and probably will continue to do that for some time yet. Some may go in time, some may be with you permanently and so you’ll find ways to adapt and get used to it. Everyones bleed NA or SAH are different in scale , grade, site, and so is unique in its effects as we all are but time and care is really important especially for all those who are ambulatory when they leave hospital and can self care as people just assume you are back to normal and had a lucky escape. For me I physically was unable to do anything so my rest was enforced which in some ways meant I had no choice but to just be slow but just because you are up and about doesn’t mean that your brain is ready to cope with shopping, driving, and everything else. Try to maybe create a visual picture of why you need to slow down for now. If you fell down and bruised your entire side of your leg so it was swollen and discoloured then you wouldn’t just assume you can do what you did before, you’d wait until that had gone down . Now think that your brain has had a similar trauma, it’s had blood Go into a system where it shouldn’t be so allow and adjust for that until it starts to show you with improvement of symptoms that yes things feel more steady .
  20. Hi there. Glad forum is helping bring you some peace of mind. The first weeks and month post a bleed are incredibly difficult and unsettling for both the patient and the partners who have to suffer and witness our discomfort and our lack of escape from the pain. the best way I can remember the early months is that it felt that every rhythm, every circuit seemed broken, sleep was elusive, Pain was constant companion and I felt alien to myself and also very broken. It gets better but in slow incremental steps. first thing if he has a cold make sure he’s having lots of fluids and additionally I found anything that had a medical nasal decongestant was awful for me so just something like vicks menthol rub and natural remedy like lemon and honey worked best with my brain...(that hasn’t changed although now I can tolerate a drop of whisky too!) his brain has been literally whacked and assaulted, first by blood and then next by surgery, his minerals will be out of whack and as the other BTGers share he will still be dispersing the blood from his Cerebral spinal fluid and as that absorbs it aggravates cos its where it shouldn’t be And that hurts like ****. He needs to know that every cognitive effort will drain him and that he needs to be very choosy about what and how much he does, and if he does anything then rest, total rest, no cognitive demand. He need to find things that help him relax and turn off the senses, turn down the high alert state his brain is in, so establish a great going to bed routine. No screens, low lighting, warm bath, hand or foot massage if he can bear it and then not beat himself up if sleep is patchy and all over the place . If he wakes just know the brain is trying to find its way back to new operating rythem, so fine gentle light on , listen to some music and then wait to feel tired again. Think jet lag, your worst ever hangover and post illness fog combined..you just have to go with it and find what makes that bearable in that moment. get your doctor To check minerals in his bloods. As we head to winter vitam d can drop but other important ones like magnesium etc can often be out of whack post brain injury , mine were for a long time, don’t take any supplements though without advice and getting checked. Lastly eat well and more frequently than you think. Snack like it’s going out of fashion but healthy stuff. He is using masses of energy to heal. It’s invisble but exhausting. Go steady both, no sprinting required. BTG folk are here if you have questions as we have walked the path.
  21. Sallios, make sure you keep you water intake up, that will Help a bit and I did find gentle heat, like a hot water bottle, placed in small of back , helped a little with discomfort but it’s a horrid effect. Well done on the walking , that will definately be helping you physically and mentally but equally it has the effect of moving the system which in turn creates the irritation...be worth it in the long run, but take it steady, pace yourself and rest whenever you need.
  22. Sarah, like you I have a ‘neck’ on my annie as they can’t fill entirely with coils as it at the dissecting point of two arteries and another. My annual checks , scans typically say ‘no significant change’ . I suppose that would be my question, has the change been that significant that you now need surgery I And guess the only way to get answer is to get that angiogram over and done with ...(plenty of time to get the bikini area sorted at least 😂) sending you good vibes, I think you’ll know what’s right but you must trust new chap and if you don’t ask then ask for referral to someone else maybe for second opinion.
  23. Hi Charming, oh I recall that snazzy hair cut and look. Thankyou for sharing your story. Well done on how far you have come. I was 39 when I had mine in 2012 , like you had an EVD , lost days, couldn’t walkor read but was determined to ‘carry on’ as I had before doing things ‘my way’ but my brain let me know things had changed significantly and over time I have made plenty of adjustments to life as I previously knew it. Looking back i can see that adrenaline of surviving kicked in and masked how I was really feeling, I pushed way too hard, way too soon but I wanted to claim back all the independence I had taken from me so suddenly and traumatically. Please be considerate of your event, your bleed. It did happen and equally you also had surgery for a drain so there’s will be scarring, damage and effects at the site of the bleed itself. This is not my wishing to scare you but just to say to slow it down and enjoy the moment of now. Place regular breaks after anything that requires cognitive effort, eat well and remember that whilst invisible to you you did break a piece of your brain. Can you run on a recently broken leg? Yes if young and otherwise healthy but you’d be ill advised to do it without care and consideration of that injury. Our brains require the same consideration. It will thank you for it in the long term. Take care, I wish you continued healing.
  24. Support, advocacy , care and love are crucial parts of healing and adjusting post a brain event as significant as a SAH. It sounds like you are surrounded by all this and so continue to embrace this and ask for help when you need it and give yourself the time you need to continue to improve and build stamina. i hope your mum and husband are both doing well .
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