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Everything posted by Daffodil

  1. 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.
  2. 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.
  3. 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.
  4. 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 .
  5. Hi Jo Ann, glad you find Help in the site, there is comfort in knowing you are not alone and also reassuring that some of the odder feelings and effects that a healing brain can give are not cause for alarm. Its good you keep an eye on your headaches, maybe just rate it each day on waking and then try if you can not to place a focus on it during the day. If it’s starts getting worse see that as your amber light warning and slow down what you are doing, reduce cognitive demand and stop for a bit. I carry a ‘head fog’ most days but now with the privilege of time I don’t really notice it and it’s rare now I need to take a paracetamol ( maybe similar strength to Tylenol? ) and it’s usually when the weather changes fast and the head fog really rolls in! Take care, go steady.
  6. Hi I wasn’t clipped, I was coiled but did have surgery for my Shunt and still get sudden pains around scar site still . i am just adding to this thread that I think you should ask to be referred to a neurologist who specialises in headaches...the reason for this advice is that since my SAH 7+ yrs ago I have had a number of instances of very sudden onset symptoms which have included blurred vision on one side, hearing loss on one side, and sudden head pain. Early on this meant often a trip to docs who sent me to A&E and then usual investigations( and yes I do mean LP’s as well] to rule out further bleeds or problem with my Shunt . Each time I knew I wasn’t having a bleed. Roll on to last year and I paid to see a private neurologist for an appointment , it cost me £100 but he was brilliant. He did neurological checks I have never had from my Neurosurgeon and as he explained it that ‘neurosurgeons fix inside the mass whilst his specialism try to figure out the lasting effects and the why for what a brain exhibits’ He diagnosed me as having instances of ocular migraines but that due to how my bleed damage is it now presented differently to a migraine or headache like I would have had prior to SAH. That made sense to me. When I get overloaded or over fatigued the symptoms of that effect can vary and make no sense and I have long come to think it’s just how the brain sends the signal on that day. He said when I get headaches now the messages are a bit jumbled so present in a different pathway, He recommended to my GP that they switch my low dose BP tablets to one that is known to also help with migraines. Win win, Best £100 I have ever spent.
  7. Some great advice already and I hope that one thing you can take to heart is you are not walking alone in this and it is ok to feel as you do as it was more than our brains that haemorrhaged , its effect is across our lives from the moment it happens. When I look back the first 12 months were all about, surviving , dealing with pain, reeling from one step forwards then back. Then the second 12 months were about taking stock of what was lost to me and with that a realisation that life had utterly changed and not just for me. Talking that through is key. I echo Louise that Headway are superb, were for me anyway as assigned me a case worked who helped me regain things I had lost confidence to even try. Go back to GP and demand they help you , advocate for what you need and if you feel you can’t can someone help put that are across. Speak to your treating hospital and ask what help they can give. There is support out but sadly you have to fight for it. Try to break things down smaller and set different standards of goals. You cannot roll back to where you where before your bleed happened but you can move from from now, in this moment and see what is possible for you today and start to celebrate that as much as you can. Write those things you achieve down at the end the end of the day, what has been good but also write down what made you sad, cross, and then let it all go for that day and start each day anew. One thing for sure is that life post SAH is never the same two days in a row. You are still you with a life to be lived I promise, but you are compromised in what your brain will allow you to do right now. If you are low energy then it is a sign your brain is requiring that energy and is healing massively. Respect and nourish that . Eat well, move as you are able and set yourself goals and rest whenever you need to without guilt and see that combination as your path to future continued healing, i wish you well. I am 7.5 yrs out. I know this version of me better now but early on, well let’s just say I did not like the upgrade much and was resentful of what I had lost. Today I celebrate each day, what I am able to do, I have regained much but move at my speed, my pace for this day and always stop to smell the roses. Go steady and be kind to yourself . Daff
  8. Hey Andrea, Hope the flight and the scan went well. I understand the missing mum bit as had my bi annual scan this year and first time for me without mum to check up on me, come along and just, well, just Be mum..but I could feel her strength with me when I was in the scanner if that makes sense, I had felt it before when at my worst and know you can always feel love that strong. Your lovely mum was no doubt watching over you. Four years is a big deal I think. Things shift a little, you have more knowledge of this version and how limits and changes are with you and things slow a little in terms of healing, but equally still lots of possibility and healing there to come. In the words of EC, ‘carry on, carry on’ Daff x
  9. Travel for this years holidays went well and again the lanyard use at Birmingham really helped me, they were so kind and helpful . That said the staff at Menorca and airline we flew with were brilliant so no queueing at all for me this time. Makes a real difference so my energy doesn’t get wasted dealing with that.
  10. Hi Yun, definately Try the salt water , it will Help I think, I did that like Win after my EVD and then later Shunt surgery, helped with the healing which took ages on the scalp. I also used to give myself (and still do) really gentle head massages with oils around the scar site...didn’t want anyone else to touch my head but happy to manage myself. I used an oil I like the smell of, rose oil, but a plain grape seed one will work just as well. You look like something off the muppets after you do it but to be honest I felt like I was like something off the muppets ( that newsreader eagle maybe? ) I was so out of sorts back then. roll on the years to now and I still have really tender points around my surgery scars and get get odd tingling but sensitivity is far less, oil treatment still what I go for if that happens. Daff
  11. Hi vmama, hubbys poor brain is reeling from two assaults, one is the bleed itself spilling blood where it had no place being so that’s aggravated all kinds of things and knocked circuits out and secondly the Hydrocephalus placed pressure on his brain which caused a different vice like effect. At the time he had he had Hydrocephalus his ventricles were blocked or compromised due to the blood from the bleed which meant they couldn’t absorb cerebral spinal fluid as they should, and as the ventricles are responsible for the accurate production, transport and removal of cerebrospinal fluid, which bathes the central nervous system you can see any disruption is then tricky and whilst life threatening in it’s own right also has long term implications. Typically a drain is placed after a bleed when Hydrocephalus also presents to assist the ventricles and remove the pressure build up and this unclogs the ventricles and then it is removed and ventricles recover function but it can take months, maybe longer for the blood to be absorbed. After an EVD the CSF level is really out of whack and also the ventricles are trying to adjust and keep up and maybe they are a bit slower than they used to be and that can give you high pressure feelings which causes headaches when lying flat, moving to fast or changing positions. That said if symptoms get worse you should always get checked out , things of note are if eyesight changes, or he feels suddenly nauseous , has increasing dizziness, these would all be reasons to go and be sure all is ok. Keep going with sleeping upright, tell him also don’t shift position fast from sitting to standing etc. Stop, pause between every movement. Walking is great but pace it, keep food and water levels up and no heavy lifting. It’s no secret on here that I ended up having to have a Shunt placed after my SAH some three months after I discharged. I spent nearly 7 week in hospital initially and had EVD for most of that but after coming home My high pressure symptoms returned and got worse and scans revealed that actually my ventricles has been too damaged and hadn’t recovered as they hoped. they had some function but not not enough. I am not sharing that experience to scare you , my case is pretty unusual but more to let you know to trust your gut as I did. I knew something wasn’t right and Hubby will know . If he feels like things start dulling down and balance starts diminishing then don’t delay, that was my red light, things which weren’t great started actually deteriorating, like my balance, I started falling , so if that happens please get checked over. If the pain is pretty constant and als,that’s predictable and has a routine then sadly that’s just pretty typical post sah effects. sending the good vibes
  12. Hi, I’d ask them to watch this video I shared , wish I’d found it early on . My daughters are bit younger than yours but I do think it’s normal for them to go through adjustment too, you are not the mum they once knew, th8ngs did change, equally you need to be kind to yourself and give yourself space to continue to heal cos have no doubt it goes on and on. Talking is key. Tell them how you feel, talk about what has changed, talk about what you wish could change and maybe plan some things together . They sound concerned for you to be honest so maybe all agree some ‘rules’ for everyone on how you engage. So a listening to each other’s concerns for instance...a big one in my house is not laughing when I make really forgetful errors no matter how funny they may be( well unless I am laughing too that is) , I find it hurtful . It takes time to find your new rhythm, things that make you smile as the old stuff doesn’t hit the spot in quite the same way. Invite them to join you as you explore what makes you laugh and smile. Be curious together.
  13. Yikes that sounds a tricky situation DH. In some situations there is some support available through Access to work scheme http://www.disabilityscot.org.uk/info-guides/access-to-work/a2w-what-help-is-available/ and if your consultant is able to state it will take time for this to work out I’m sure that SAH is a qualifying criteria , maybe look into this to see if they’ll cover transport costs.
  14. This is the lanyard. Just go to the assistance desk and ask them if they offer the scheme.
  15. Louise. Well done for sharing This! I found my experience using sunflower lanyard was amazing ; i and family were pulled out of queues for passport control and security checks so I didn’t have to stand in queues and it just generally helped, I will be wearing it this July when I head off through Birmingham again. Great to see Scheme use spreading , Interestingly I shared with a friend whose brother in Australia had a bleed and they contacted Sydney and think they have also started or triallled doing a similar scheme...would be good to know if similar exists in other countries and if it doesn’t why not get in touch and ask them to do it!!! Let us know here..Help spread our wings a little x
  16. Definitely v pillow and I still sleep upright for the most as I had Hydrocephalus too with bleed and now have Shunt, I found a heated wheat bag really helps with my pain , or hot water bottle as good. I also used to give myself a ‘self massage’ with a base oil and essential oil that I found relaxing an soothing, I used Rose or lavender but hubby might prefer something different. I personally didn’t want anyone to do that for me early on after discharge so did my own shoulders but you could offer to do his hands or shoulders if he is ok with that..very relaxing i was under the care of the Pain management team when I left and they stressed how important it was to ‘smooth ‘ the pain so not allowing it To peak and trough so that meant keep taking my pain relief medication consistently and I only tapered that off after my Shunt was placed which was a good few months after bleed. Eating frequently and well can help with the pain, look at getting plenty of protein and fibre and also anything that helps the vitamins in the body replenish the brain, sunshine and vitamin D was important to me . Sleeping and rest will Help with his pain control. Learning now where his red lights are and stopping before you get there and resting and doing NOTHING. Brain needs that pause space to helpit continue on its mammoth healing journey, all happening unseen. main thing though is if Pain is getting worse then seek help, don’t ignore that. It shouldn’t be escalating and if it is that needs to be looked at. Good luck and welcome to you and hubby.
  17. Jean, I know about that missing ‘Zest’ and I don’t think it’s all that unusual to hit a rut especially when something else drains your energy. Over this last year since my mum passed I feel I’m doing so much to just get through the day and that whilst every day feels fortunate to be here that there is a lot of just getting through it. My pacing is hard to juggle teen kids, working, home and somedays there’s nothing left to be honest and I’ve certainly not felt that joyful whilst learning to adapt to my grief and accommodate the addition and toll of that. My only advice is keep looking and exploring at what brings you some peace, some happiness, some joy. Be curious to new things, It’s there but it may be found in very different places to that where you found it prior to SAH. Exercise and strong core is best found through walking and maybe incorporate stretches for arms etc whilst on shift? I have also found my new found love of gardening also helps my balance, when I started post bleed I would often end up lying in the bed so to speak. Now I rarely fall but I make sure I have plenty of flowers so at least I can stop and smell the roses if I do . X
  18. caw, I would download some of the brain injury fact sheets from the Brain and Spine Foundation and maybe ask people to take a read. Also I did a blog at my work which explained what fatigue was actually like ,I.e. not just being tired or overworked, and that helped me so maybe ask or find a way to enlighten them. Sounds like they are trying to be empathetic but of course the only people who will really know are anyone else who has chronic condition or experienced similar. Forgive them their clumsiness, most people aren’t confident about this kind of hidden disability, but you can help them understand how much their understanding and Help now will pay dividends in future. My best advice, worry less about others peoples thought if you can and put that to one side. I expect most are just hoping you are ok. Concentrate on Working out what is going to be helpful for you right now And don’t overdo it. It’s not a sprint or competition, you need time to regain mental and cognitive stamina and remember you are running with a bruised brain that’s trying to heal at the same time . Eat well, keep hydrated and be kind to you.
  19. Such a courageous woman as Cassandra will leave a big gap in the life of those she loved and who loved her but equally she will have left them with all the memories and time they shared. I hope those memories bring comfort, gentle smiles and the feeling that she walks with you forever. Cassandra shared how she chose to lean in to her pain of being broken and adjust to that and that itself can be similar to the experiences of grief of losing a loved one. Words she said on one of her posts was; Good advice for us at all of life’s challenging times. So Fly free from the pain Cassandra and take heart Neil and family that her love lives on within you all. So sorry for your loss.
  20. Iola, I get you. I’m at 7 years now ,my anniversary just passed in March and like you also feel I’m at a crossroad. Things are more stable, we have had these years of getting used to the new version of ourselves, our new limits, our new capacity and then also testing those and pushing and striving ...and then....you find the energy you have to offer other people is not the same, the BS is not something you want to deal with and people can be so ignorant of what an everyday struggle things are, and somehow what you work towards getting back to doing just rings a little empty. I hope part time helps you find the answers. I’ll post if I find any !! Keep on keeping on, you are doing so well...you’ve got this!! Daff x
  21. Hi Jean, My core and balance post SAH was dreadful, i had lost all muscle tone, massive amount of strength and weight and I used to just topple over and also had lots of unexplained back pain. My answer was two and a half years afterwards I got a puppy...not maybe the best plan I know but I already had a older dog in the house but one which was quite happy if I didn’t walk him, much happier to snuggle up on sofa, whereas puppy meant I had to do daily long walks, if not twice. I ‘engaged’ my core when walking and always took my stick , even then I used to fall, so much that both my dogs know that if 8 drop the lead they have to stand still ... it became a training point but I built my stamina, my core, my distance and it’s been massive therapy. Also it helps to just give me quiet brain time. I cant do hard high energy exercise, swimming is tricky , yoga out now for any inverted moves so walking has been brilliant. So much so that last last year I tried paddle boarding and guess what? I can do it and that’s great for core, and if I get tired I can sit or kneel...so massive progress on that front. Just in the last month i have I have stopped taking my stick on my daily walks unless I feel wobbly and I probably now walk 3 miles each day ...But that’s 7 years since my event...some days I am still off , and can’t go as far but progress is still to be found. Hope you find what works works for you . Be curious and don’t look in the ordinary places for what helps. Walking can lead you to some amazing views. Take care daff x
  22. Just adding link to post which has some links in it to other threads from doctors who have had a SAH or NASAH. Click through to their profile to see some of their stories Search and look at some of @kpaggett historical posts as also worth looking at , she is a neurologist I think so had some pretty good insights to share but no longer comes to site.
  23. Hi Ami clare gives some good advice and any neuropsychologist will tell you that the effect of blood across the surface of the brain has a very different impact on short term memory than say a traditional stroke. You may find that you can’t retain the new memory in the same way to previously and so have to do things differently to be able to retain And keep facts and information but more importantly to retrieve the memory is a little broken/ corrupted. main thing I learnt ( and I had an amazing memory pre SAH) is write it down at the top of a pad if I am meeting someone for the first time ...and that doesn’t mean I don’t still get names wrong and I’m not a doctor but do work in a business where people recognition is important , I have been up front with people about my injury but you may decide that’s not appropriate for you so I would just say, I apologise if I get your name wrong , I tend to find it takes me a few goes for names to stick. Loads of people without brain injuries forget names, we are now just one of them...but seriously, wrote it down,give yourself a break. Also I’m going to say one thing that’s really important . Slow down at the start of the meeting and your consultation. Look a5 the person, pause. Say their name back and consciously write it down. That may help. Ask if they would be happy for you to take a picture and keep in file? You are different so try to adjust to that and well done for being back at work. . We have a few doctors come through and @frmertd is someone at present on site who shares your vocation. I’ve shared their latest post and you may want to look back through some of their posts and replies and who knows they may be along to answer as well. @Catwoman23also a medical professional who has had patients and friends with SAH and probably will be able to share some good advice and I’ll try and post some links from previous docs.
  24. Hi Bev, i do feel for you as I remember only too well the big highs and lows and what felt like lots of step backwards in the first year of healing. It was exhausting to cope and try to come to terms with the impact of my bleed, at the time I found everything terrifying and the worst part was it felt like I would never recognise this new version of me, I felt oh so unfamiliar and broken. Try to keep a diary of what you are doing, are you maybe asking too much of yourself, trying to pick up life exactly as you left it? Maybe dial things down but I do hope they help you source the reason for the pain and help you with that. I had to return to hospital when the symptoms of my Hydrocephalus returned post bleed. The extent of my bleed and volume of blood that passed into the ventricles meant mine never recovered their full function and despite discharging after my initial long stay for the SAH I eventually had to return and have an operation to place a Shunt. I also had to have numerous LPs prior to see if they could kick start the ventricles to work better...they couldn’t in my case. Before having shunt placed I had dreadful balance and increasingly bad sensitivity to noise and light and also neuralgia pain. Post Shunt it made recovery harder as the bleed impact was still early days but I can honestly say that it was a huge turning point for me in recovery. I wish you well and once you have a plan come back and talk it through and we will Help you through it. X
  25. Hi, you are hanging in there there and I think it’s ok to say that. if you are not feeling fine then say you are not feeling fine. If you are feeling tired, say that, I am all for saying what is true and whilst we try to protect people around us it’s also important to be true to the reality as that helps them help us which is a good thing. You don’t have to scare them , phrases like, ‘taking each day as they come’ and ‘ aiming mostly at steady’ are some of my favourites but I would honestly just say to people this if I was back at your early stage. ‘Thanks for asking, it means a lot, actually still feeling pretty rubbish most days as lots of healing going on invisbily which makes me super fatigued as what happened Has really given my brain a knocking but I’ll get there , just got To give it time and care’ I wish you well.’ Take each day as they come ‘ 🙂
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