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  3. Hi everyone, Sorry I’m not much expert in English it’s my second language. I’m Rajdeep Kaur. I’m from India, but moved Australia in 2009. I’m 38 years old mom, have two daughters one 8 years, and younger one 10months old. in January 2020 , I visited to India to meet my parents after 6 years. After 20 days my life changed . I was healthy never had problems like headache. One day I was dressing my younger daughter, suddenly I felt explode in my head. First I wanted to ignored then again unbearable. I cried , my parents rushed me to near hospital ( in India not good systems) , doctor sent us for ct scan then sent for mri , wasted one day then referred to other city. Again new neurosurgeon repeat tests and did angio gram . Finally they SAH premedullary cistern and tense ventricles. My parents have not much knowledge, next day I woke up with VP shunt. Spent 2 weeks in hospital and my husband also came in India from Australia. ATM still we are in India because of COVID. Now headache gone , but still feeling weakness in extremities. Most of time feeling sad and depressed. I asked from neurosurgeon about removal of vp shunt, he said he can remove anytime. None of test repeat again. My husband decided that I should start treatment from Australia. Again apologies for not good in English. Please share your experience.....
  4. Rajdeep

    My story

    Hi everyone, Sorry I’m not much expert in English it’s my second language. I’m Rajdeep Kaur. I’m from India, but moved Australia in 2009. I’m 38 years old mom, have two daughters one 8 years, and younger one 10months old. in January 2020 , I visited to India to meet my parents after 6 years. After 20 days my life changed . I was healthy never had problems like headache. One day I was dressing my younger daughter, suddenly I felt explode in my head. First I wanted to ignored then again unbearable. I cried , my parents rushed me to near hospital ( in India not good systems) , doctor sent us for ct scan then sent for mri , wasted one day then referred to other city. Again new neurosurgeon repeat tests and did angio gram . Finally they SAH premedullary cistern and tense ventricles. My parents have not much knowledge, next day I woke up with VP shunt. Spent 2 weeks in hospital and my husband also came in India from Australia. ATM still we are in India because of COVID. Now headache gone , but still feeling weakness in extremities. Most of time feeling sad and depressed. I asked from neurosurgeon about removal of vp shunt, he said he can remove anytime. None of test repeat again. My husband decided that I should start treatment from Australia. Again apologies for not good in English. Please share your experience.....
  5. I wish we had a better word than fatigue. I think people with no scars in their heads cannot understand what I/we mean when we say fatigue. In my case “shut down” or “reboot” is more descriptive.
  6. Yesterday
  7. Hi Matthew, Fatigue is a common bugbear with most of us. Brain injuries are different from any other conditions because the brain is your body's control box! Nearly four years isn't that long in brain recovery times. Everyone is different and some take longer than others. I' m nearly ten years out and I still suffer with fatigue and i know I always will. The brain seems to take longer to repair than other parts of the body. You may well recover, but it will take a long time. What you need to do is adapt to how you are now. Resting well is as important as working well. You wife probably does not understand because she has never suffered a SAH herself and it is always difficult to explain to someone who isn't 'in the know.' It isn't her fault, it's just the way it is. Perhaps learn to adapt and take the kids from her when you are feeling well and up to it, even if it isn't absolutely necessary at the time. Have fun with them, teach them, go out with them and let your wife have some 'me' time. There is no law that says she has to have the kids all the time because 'she's the woman.' Share the load with her, but do it when you are able and do it because you want to. Being a parent is a two person job, so chip in when you can. Offer to do it rather than be told to do it - they are your kids too, and Mums do a terrific job. Your wife probably had her hands full when she was supporting you when you were really ill. For her, it seems like she feels it is still going on and she needs some relief. And you need to have some sympathy with that view. The biggest thing, though, is to talk to your wife. Show her this site, as others have suggested, so she can get a better insight. I'm just telling it like it is. Some days you can do more than on others. Don't use your condition as an excuse not to do things because you don't feel like it, because people see through that. You don't do it because you really can't on that day. It's difficult, but in taking care of your kids, talk to them too, so that they understand what is wrong with you also. Remember Frank Carson, the comedian - "It's the way you tell -em." You have to be the new you, not the old you. Your old brain is in the photo album with your old photos. Your new brain is in you now, with changes made that make you do things differently now, not better or worse, just differently. Adapt, Matthew, don't let your visions of yesteryear torture your todays. Adapt and get on with life in the best way that you can, in the present. Just do it a little differently than you used to. Changes have happened suddenly so accept that and change the way you approach things before they change you. Approach the battle on the same team, a united front, not fighting from different corners, from where you will end up slugging it out with each other. Look at life's road signs and navigate together. Good luck, Macca
  8. Hi Matthew, A huge warm welcome to BTG Some great advise from others so far. Firstly well done on posting this, it couldn’t have been easy. As others have already said I think it would be a great idea for your wife to look in on this amazing site. It’s almost 10 years since my SAH. And sadly yes, fatigue still gets me bad. I had a career change after my SAH, now only working 21 hours a week. I’ve also tried changing my shifts/work days to see what works best. I now do my hours spread over four days with a rest day on Wednesdays. For the first few years my head pains, temple pressure and fatigue floored me. Then I listened to advise from Super Mario and saw my GP as I felt this just could not all be SAH aftermath, and it wasn’t. I was diagnosed with other health conditions. Tough ones to learn to live with on top of SAH, but the diagnoses gave me understanding. For me it was all about learning to adapt, adjust, pace and planning. I had to stop comparing myself to who I was before my SAH and accept who I was now, to remember how far I’d come since my brain got re-arranged. I was never going to be the same as I was and that’s ok, I’m happy with that. I believe I’m a better person now, I have more patience, understanding and empathy. I don’t worry about the things I can’t change, I don’t waste my ‘spoons’ Yes, I still get fatigue but you do learn to accept that, kind of! My best bit of advise is for you to read ‘A Letter From Your Brain’ and to look up ‘The Spoon Theory’ , it truly is the best way to describe to others what life is like after SAH. I still refer to them now and I still have copies of them on my bedroom wall, they keep me grounded when I’m being too tough on myself. Have patience and understanding with yourself Matthew, you will get there. We are the lucky ones. Take Care, SarahLou.. Xx
  9. Last week
  10. Hi Matthew I am 5 years post bleed and still sometimes hit a wall with the fatigue. It's worse after a busy day at work, not physical work but when I have to use my brain, particularly if a lot of multi-tasking is involved. It would probably help if your wife could read others experiences, so if she could look at the site it may be beneficial. Also do you maybe need to take a look at your working hours - do you need to reduce? If financially possible it may be worth considering, plus it would give you more time with your kids. Maybe worth thinking about, I've gone down from 41 hours per week to 21 - big drop over many years but something I should have done years ago. Take good care Clare xx
  11. Hi Matthew, great replies above. Has the need for the naps been consistent since you SAH or has it diminished then come back with a vengeance? If it has reappeared more than what it had settled to then I suggest you get the need to nap more frequently than you did investigated. It is so easy to blame the SAH for everything that happens later and that is not always the case.
  12. Hi Matthew Completely agree with what Subs has said. It's extremely hard for both parties as they are on opposite sides of the fence. I can understand the fatigue thing too - I'm 14 yrs post SAH this year and I still get fatigued after a full day at work - especially if it's been busy. I work in a primary school office, so I'm not walking 1000s of steps a day either. Your wife should definitely take a look on this forum - she doesn't have to create an account you can let her see through yours. Please keep in touch and let us know how you progress - you'll glean a lot of information and comfort from this site.
  13. Hello Matthew and welcome as a member of BTG. Also glad that you have been finding the site helpful in the years following your SAH. Our members will make every effort to support and encourage both you and your wife. Firstly well done almost four years on. SAH really does have a life changing impact on the whole family. Perhaps you could provide more information about your progress in the early months. We are here to listen and dont worry about how long it takes. For example how was your employment affected? With a very young family, does your wife stay at home or has she employment too? SAH recovery is quite unique and everyone has many issues to contend with. I am sure you will tell us where your challenges have been. From your comments, you highlight the frustrations which both you and your wife are experiencing. Please both understand that this is not uncommon Your wife wants you back to your former self, and so do you... but you know she doesn't understand what SAH has done to you and you are upset because she doesn't seem to understand. It would be very helpful if like you, she could join the site ...we have a Carers Forum and even reading all forums would help her appreciation of how difficult things are for you. It is important that you both try and talk this over in a constructive way. Ask her to share all her concerns about your progress...and then you too tell her how you really are. She needs to understand the reasons behind your fatigue and tiredness. Please keep asking and we will do our best to help you both better understand your recovery issues. Subs
  14. Hi Everyone, I have perused this site ever since my SAH occurred on August 14, 2016, but have never introduced myself or participated in any discussions. My story is I was home by myself as my wife was spending time with her grandmother and I was doing my business on the toilet and then out of nowhere it felt like something popped and like someone had just taken a sledgehammer to the back of my head. As the minutes went on I knew something was wrong. My face and arms were becoming numb and I could barely form words or move. Thankfully I called the cops as I knew something wasn't right and could barely speak but thankfully got my address out. I then passed out and didn't regain consciousness until 10 days later. From what my family told me, the doctors couldn't figure out what was wrong with me and the first week in the ICU I was close to death. I had my last rites read to me although I wasn't conscious. Somehow, someway I finally regained consciousness after 10 days and slowly recovered the next 4 days before finally being released. I want to go into more detail about my recovery, but I don't want to make this a super long post. Being 3 months away from my 4yr anniversary, my biggest question/concern right now is my fatigue. Is this a common residual affect for someone going on 4 years post SAH? I often get tired after work and in the late afternoon and taking a nap helps me get my energy back. The problem though is my wife hates my need to nap. She does not believe that my fatigue/tiredness is from my SAH, she thinks I am just lazy and trying to avoid my family. We have a 3 and 1yr old so it's very tough for both of us, but my wife doesn't think it's fair that I take naps and she gets stuck with the kids. I have tried to talk about it with her, but my naps pretty much enrages her and often leads to us fighting. I am trying to get her to understand that my fatigue could be related to my SAH, but I want to see if others are still experiencing this years post SAH. Just now when I told her I was writing this post she mockingly said "Oh, are you looking for emotional support cause your a big baby?" Please, help me with understanding why I feel this way and how I can talk to my wife about it. Thanks for listening, Matthew
  15. Thanks Daffodil. I will let the consultant know what's going on and suggest it may be wise to get this done sooner rather than later. Even if it is just for my peace of mind. I'll report back after my video appointment. Lynne x
  16. Hi Ggirl, Welcome to BTG as we call it, so sorry to hear that your dad has suffered SAH and is in ICU. I was not sedated after my surgery so sadly I can't comment on that, there some members who I am sure will come along and share their experiences of this with you. You have come to a great place for help, advice and support, although we can't give medical advice, we can share with you our own experiences of SAH although you will find that everyone's SAH and recovery are different, we have all taken the journey that your dad is now on. Any questions you have feel free to ask, we are here to help you to understand what may lie ahead as your dad goes along the recovery road, also to support you as you must have so many questions, it can be a very scary time for the rest of the family when they have a loved one in this position, don't be frightened to ask questions, we are a friendly bunch and where we can help, we will. If you go into the page Introduce Yourself, maybe you could tell us a little more about what happened to your dad, also tell us a little about yourself too, you will get a lot of replies by doing that, only if you want to do it though, you don't have to, it just helps us to understand your situation a little more. I would just like to wish your dad well and please take care of yourself to during this difficult time. Love Michelle xx
  17. Hi Everyone, My dad had a SAH 2 weeks ago, he had emergency surgery and had coiling. Since then he has been sedated and on a ventilator and has regular neurostorming throughout the day. My question is, did any of you experience this whilst recovering? Did any of you experience these storms every time you were weaned off of the sedation? Thank you and I pray the best for everyone recovering and the loved ones supporting in this time.
  18. Lynne , agree I would speak to GP and ask them to refer as well but definitely speak to the consultant in June i think we all are wary to be in hospital inthese times but equally I think if the procedure was deemed to require surgery and now things are not improving but actually new symptoms it’s time to have the conversation. Stent diversion is less invasive people have reported than being clipped, so through the groin as per coiling I think but I’ve not had that experience of a stent. Others may be able to reply on that. Good Luck, keep us posted x
  19. Hi! I also had a SAH 7 years ago, have a 14 year old daughter (and 10 year old son & 2 year old daughter). I have primarily been a lurker on this board, but I wanted to let you know that I relate to so much of what you post! I feel the same on the outside but still struggle with word recollection, my memory isn't as strong as was and I have a constant low grade headache. I strongly believe that stress caused my original SAH, as does a friend of mine who is a nurse. Ultimately my neurologist told me that I will never know the true reason as I didn't have any obvious reason for my first bleed. Sending hugs and wishing you well.
  20. With many thanks to Daffodil for her very kind donation in memory of Win. ❤️x
  21. Karen Thank you for your reply. I wasn't sure if I was just being OTT with it. I'll write down my questions. I hadn't thought of speaking to the GP, she is not that experienced with this sort of thing but will get the migraine side of it I would think. On the whole I'm not too bad on the stress side. I'll stop what I'm doing if I feel a headache getting worse and try to remain calm about most things. There are times though when I remember the time bomb and go a bit wobbly!!! Another cup of tea!! Lynne x
  22. Hi Lynne and welcome... If the op should have taken place in March, then if it were me I would definitely push to get the op re-scheduled. Write down a list of all the questions that you need to ask your surgeon, as it's easy to get distracted and only realise when you've got off the phone that there was something important that you needed to ask. Tell them that you've got a list of questions, as most are pretty good in understanding that our short term memory is a bit shot post SAH. Make the most of the opportunity to speak to him/her and also ask him about question no 2 . No question is ever too silly either. The stress and worry to you won't help the symptoms that you're currently experiencing. It might also be worth contacting your GP to see if there's anything that they could prescribe to temporarily help with the flashing lights/dizziness. I suffer from occular and classic migraine and the aura/flashing lights is normally an indicator that I'm going to probably get the mother of all headaches! I was put on a medication called Propranolol and it's greatly reduced the incidences of them. I wish you luck and try to keep your stress levels down as much as possible. x
  23. Hi all A newbie here. I came across this site by accident and wish I'd known about it before. I had an unruptured right sided ophthalmic aneurysm clipped 2 years ago and was diagnosed with another on the opposite side, same place, last September. They found the second one as I was still having visual problems so they investigated. To be honest I was surprised to hear I had another one but had no obvious symptoms and was told it would be treated. I was seen in December 19 and advised a flow diversion stent will be fitted which was booked for end of March 20 which of course with the current Covid situation was cancelled. I have two questions. 1) 8 months on from diagnosis I now have, and have had for some time. symptoms due to the location of the anni - vision, flashing lights, permanent head pain, dizziness. I've managed to get a video consultation with my surgeon on 3rd June after emailing him directly. I'm concerned about the development of symptoms especially as with the last one they were very keen to fix it quickly. I don't know whether to say I consider this to be urgent now? I've had no real feedback from the hospital and was just told they'd be in touch at some point. I want to make the most of this appointment so I'd like to know what others think. I believe the risks of attending a hospital are much lower now, I have no symptoms of Covid, the hospitals are beginning to see other patients. Would others push this with the surgeon? Or should I be patient and live with the symptoms and the every day fear that the anni is growing and could rupture at any point. 2) I only have experience of being clipped. The recovery was long and hard. What are others experience of the flow diversion? I'm self employed now and would rather not take a long time out. I will of course if I have to but what on average is the recovery time and the level of discomfort afterwards? Thank you in advance. Lynne
  24. Hi there I haven't got a shunt after they took my temporary one out but anyway I have brain zaps lightheadedness and headaches even after 18 years it's worse when I haven't drunk any water so make sure you have plenty of also gets worse when I do to much or am really tired xxx Hope things improve for you soon xxx
  25. Hi Sean and Julie. great reply from SM which I hope will Help you. Hydrocephalus itself is pretty damaging to the brain and like SM I think the impacted balance and dizziness was mostly the lasting effect of that although equally caused by bleed too but 8 yrs on I’m so much better now and can do most things. Sean not sure what Shunt you have placed , I have a Meithke ProGav, but most placed these days have gravitational valves, adjustable external magnetic setting which also can be checked using a special tool which the specialist nurse can look at. (Mine is being monitored because we aren’t sure if my valve is playing up but no Shunt failure symptoms thankfully . To check setting Its very simple , a sit downpainless procedure. ) Pre any MRI they will confirm what Shunt you and as a result there should be no issue to the setting but the scan team should confirm that before you go in. Do speak to the Shunt specialist too if you have concerns To check on actual Shunt function they’ll often do a ‘Shunt series’ which is a X-ray of the tubing in the abdomen and neck to check any blockage etc and then will often elect for a CT scan as they just look at ventricle size changes. When they do a MRI it is going to get that closer look at the blood vessels plus check ventricle size so that’s more about the SAH bleed , how the coiling is holding and other aneurisms, overall brain health. That’s been my experiences and how it was explained to me. With my decisions for changes in setting we based it very much on what I thought would improve my quality of symptoms and frankly my getting worse not better. Also because I had had three months of living without a Shunt I knew exactly what high pressure hydrocephalus felt like for me and equally low pressure symptoms as well as I went on to have many lumber punctures which drained off CSF before Shunt placement but which sent me low pressure. So I could tell that my setting of ‘5’ kept me way to low pressure for me. I would fall over , I felt nauseous all the time, I had pain in my eyes, neck and had fingertip pressure pain all over my head but always felt better lying down. So we gradually increased the setting over a period of months. It wasn’t an easy period , I went back in overnight a few times because they were concerned I could have CSF leak etc but over time we found ‘my’ setting and I had to then adjust to living with a Shunt whilst recovering from bleed. With a Shunt Our brain juice control system is not the smooth automatic system it was anymore but a little clunky and awkward , I hear it whirring n . draining, as it does it’s overflow work but I know when I have had a big valve release and I have an ultra sensitive reaction to barometric pressure , (that’s a symptom and something we all have shared and find we have in common on here.) SAH recovery with hydrocephalus and dealing with effects of a bleed is essentially two conditions , both causing brain injuries colliding and it can be a little bewildering at times but do keep a diary and track how it sits with you. You will know your body and what feels right. i know the MRI scans are tricky but yes agree maybe ask if they can work with you to help you feel more comfortable with the procedure . take care and glad it’s helping to talk.
  26. I was told at my first clinic appointment after my SAH, that if I ever needed a MRI scan I needed to inform them of my shunt. Our local hospital can't reset shunts so for any MRI I have to go to a hospital that has a neuro dept and the facilities to check and reset my type of shunt. Initially, approx. 14 years ago, the procedure was to have a skull xray before the scan and then one afterwards to see if the setting had changed. The radiographer was very good and showed me the before and after films and yes it had moved. I then had to have it reset to the original setting which, at that time, meant getting my notes to check what the setting was initially. At a subsequent MRI there was no xray, just a nurse with a piece of equipment that read my shunt setting prior to the scan. She came back after the scan , checked it with her "toy" and it had moved again so she just reset to the original. Those checks and reset were actually done in the waiting room , so quick it was. Going off the shunt subject, I have permanent dizziness. Rightly or wrongly as I am not medically trained, I believe that my permanent dizziness was caused by the hydrocephalus and not the SAH. I didn't get rehab or I may have managed to conquer it at that time. Apparently physiotherapy can help. I now have coping strategies that I have learnt myself by trial and error that help. If Sean isn't having physio it may be a good idea to request it as the earlier it is put in place the more chance of success.
  27. Hi All - I am Sean's wife Julie (think I spoke to one or two of you on my post re PIP). Firstly I wanted to say thank you - Sean is over the moon to be able to chat with people who have had similar experiences and I have noticed a change in Sean in that he looks forward to coming on here and learning and reading and corresponding. Super Mario - I wanted to ask you a specific question if I may regarding the fact the MRI changed your shunt setting as we have been getting a lot of conflicting information (Sean knows I am writing this as he is watching me 🧐). When the MRI was first mentioned (we knew they wanted to do one 6 months post SAH) they knew Sean was claustrophobic so suggested the upright then dismissed it as shunt was not suitable. Anyway as Sean said 2 attempts on MRI's and now they are saying the upright is suitable. Anyway - apologies I can rumble on - my question is before your first MRI were you told that your shunt could be altered by the magnetic field or was it a complete surprise to you that it happened? Because of Sean's dizziness they need the MRI to check everything before they decide if the shunt setting is correct or whether the dizziness is something that will be there permanently. As well as checking the coils and the 2 untreated aneurysms he has. Again many thanks and will try not to hijack Sean's post again but interested in your reply Super Mario 😊
  28. Sean, I am another member of the shunt club, mine is also altered magnetically. I can't even remember having it fitted so I don't know if I had it reset in the early days. I have had later MRI's which have altered my shunt setting due to the magnetic field. It was just set again to the original setting. That is a very easy procedure which only takes a couple of minutes. As Daffodil says, it can take quite a while to get the correct setting for you, bit like trial and error. Have you ever thought of asking for a sedative prior to a MRI in the hope that it may help you to tolerate one?
  29. Hi Daff and all! I have been for an MRI on several occasions, even the mobile one parked outside the NHNN entrace, each time I panicked and only managed to last about 5 minutes in them, so no clear result. They are organizing an 'upright' scanner for me, but it's a Harley St job and there is a waiting list, but I've been told I'll be a priority, so I'm hopeful. My shunt can be magnetically altered to different settings, mine is on 5 and I have had follow ups with the Hydrocephalus specialist nurse who was great! I still get pain down the back of the shunt side of my neck, also down my ribs to the abdomen, this the drainage tube. I had never even heard of Shunts before my SAH and thought all brain Haemhorrages were fatal, what little do we know! Thanks everyone!
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