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  1. 7 points
    Hello again, and thanks for your support. I hope your daughter feels better, Win! And sorry to hear about your congenital deafness, Missy67. It is reassuring to hear that the tinnitus gets better over time. I am feeling a lot better at the moment, although the ringing is still with me, sometimes louder and sometimes very low. My mind has been elsewhere for the past week as I just came back from a holiday in the Canary Islands (after having read many posts here about flying post SAH I felt a bit better about it and decided to go for it - the trip was booked before my SAH). The stress before this trip was tremendous, but it all went fine, and this week in the sun with my family turned out to be a bit of a break from thinking unhappy thoughts and just listening to the sound in my ear...A bit fatigued now, but I feel that I regained a small piece of my former life by mustering the courage to travel.
  2. 7 points
    November 1 marked the nine year mark for me! I meant to post that day, but between newish responsibilities at work and a newish wild and crazy dog that gets me up way too early for walking, I have a hard time keeping my eyes open at night. I got to celebrate the day with a 4 hour conference call in the morning and a 1.5 hour meeting in the afternoon, which I had to spend an hour driving to and from! So I guess you can see I've recovered fairly well. Even so, I still find great comfort in the posts that remind me my lingering sensations and memory issues aren't just my imagination. While I dont post as often I inwardly celebrate all your victories large and small and sympathize and pray over set- backs and hardships. I am very thankful to have this family to come to. Much love to you all, Colleen
  3. 5 points
    There are so many great posts an explanations here. 10 days out of SAH and I really want to thank all of you for your experiences. I hang on every word.
  4. 5 points
    A few things, chance of rebleed a month out is small (1%) UNLESS your are weightlifting again. You should not be straining to lift weights or anything. Someone clearly said we aren't permitted to give medical advice and so even though i'm a Dr, i will respect those rules. But common sense would dictate telling your GP who can get a CT head to confirm you are not re bleeding. In the US i would advise go to A and E and they will do it in 10 minutes, but I understand in countries with socialized medicine you aren't allowed. You must go to GP first and they decide if they think its warranted or they may refuse. But if you are secretly weightlifting a month later, you are inviting a rebleed. You used a phrase I hear a lot of that is factually incorrect "they found nothing on angiogram" or "they didn't find anything". Bleeds can be 1) arterial or 2) venous. Angiograms only see arteries (one day we will have the Microtechnology to see veins but not yet). so if angiogram negative, that means a VEIN did the bleeding. Dont confuse negative angiogram with "nothing found" because that is certainly not the case. Blood was seen on CT that is very much NOT supposed to be there. So something was found. Good luck. And don't weight lift.
  5. 5 points
    Well, I’m now 5 years since my nasah. I’m doing pretty well. I did spend the day with a miseable headache. Just a friendly reminder I suppose. The headaches and such have become infrequent and I am blessed to be able to function pretty well for an old guy. Still have to be careful not to overdo and stay hydrated. I’m not taking any meds at this point and only see GP for routine check ups. Thank you to all on btg that have helped me through this recovery. I really don’t know what I would have done without you all!
  6. 5 points
    Holy smoke, you need to take a breath. No wonder your anxiety level is so high. I had the same as you and the first year is the worst. I am going on 4.5 yrs and my anxiety is down but I still have headaches and when I get that wierd dizzy off balance light headedness I silently freak out a bit. I work fulltime time too and it's hard. I went back four months after mine and was part time and suffered enormously. My daughter was in second grade and I had to get her on the bus every day and could not walk a straight line if I tried. Still can't. Your employer must be difficult and they no nothing of your injury. Just because the blood is gone does not mean you are fine. No one knows your brain like you do. We all look okay from the outside but it takes a long time to feel good again. It will happen and good days will come. iola
  7. 4 points
    Filfoot. I read with interest you report the 'taste of blood' as I had that many times and of course it sent my newly acquired post SAH anxiety levels soaring. The doctors all reassured me that I wouldn't be able to 'taste' the blood as it reabsorbed but my brain was telling me otherwise. Most odd indeed. Totally unexplained. And I guess that's what I wanted to say, you are going to get a whole host of strange sensations post bleed. When they happen you will connect them to your bleed and there will be worry to boot but my advice is to wait and watch. Get yourself somewhere comfortable, and just notice. IF things start getting worse then you need to get checked out but if they just are there the chances are it will pass and so if you can teach yourself ways to relax that works for you whilst that is going on. I and other members have speculated that sometimes the feelings reveal a phase of healing afterwards but that's just us pondering aloud and hey if that though helps feel free to use it. As others have said go steady as our MD survivor shares above, they may not have found a cause but you have had a blood spillage where it has no business being and that will have effect. You need to slow down and let yourself heal and that may be invisible to you and others but healing is happending and that is exhausting. Be patient, listen to yourself and your body and in time you will see improvements. Take care now and welcome .
  8. 4 points
    Hi FRM, you will know from being a doctor how the impact of having blood in the sub arachnoid space is not a great thing for memory and cognitive function but I also imagine you will have characteristics that will encourage you to push forward and test limits. That's ok but go steady with it. You may may find it worth keeping a diary, ( some good online ones) which let you track how you are feeling and what runs down your batteries fast. Back to to work is very much based on each individual but I think whilst you are finding the effects of the bleed it is best to put plenty of rest banks in the day when you do. That's quiet and no stimulation. We have had doctors herwho have returned to work after a SAH. I will try and find a link for you. My advice is go at your own pace but try to find your warning signals and heed them. I have a friend you is a neurologist and she suggested I think in terms of traffic lights and that has helped me. I try not to run any red lights, if I need to stop I stop. It's important for my well being, emotional , pain wise and physically . I am back at work post my SAH but life is different. So no I don't think your career is over just maybe you have to re- evaluate goals and remember you have had a bleed and be considerate. Take baby steps, build your strength slowly but steady and good luck.
  9. 4 points
    I’m so glad me and hubby found this site as my hubby is 9 weeks post PMSAH which I know is early days but this really is helping us to realise some of his symptoms at present like the fatigue and anxiety and we know it will get better
  10. 4 points
    Hello! I think it is very individual when you go back to work. I have been away from work now for almost 6 months and I feel like I am climbing the walls here at home. I have a the support of a brain rehab team at my hospital, consisting of a doctor, a therapist and an occupational therapist and they seem to think that 6 months is a short amount of time to return to work after an SAH (I'm in Sweden so this may be different from what is recommended somewhere else). They keep telling me that returning to work too early may give you setbacks, which you also mentioned that you have heard. I guess they have treated many patients so they probably have the statistics on this, so I am listening to their advice not to rush back to work. (But it still makes me frustrated and I am hoping to do a few hours a week at work starting December). Anyway, I would say listen to your body and brain, I think only you will know when you are ready to go back to work. Take care!
  11. 4 points
    Having noted changes from a strongwilled type A personality to more tired and mellow I read with great interest this thread. People in family already criticizing me for things, i want to say to them "dont you understand that was a very serious thing that happened to me??? Support is what is needed, not opinions and criticisms of behavior. " I too have come to see that who your "real" friends are can change.
  12. 4 points
    Thank you very much for your assistance. I have read thoroughly the posts here and received some great tips regarding healling, work, and what to expect from this over the next yr. Thanks for your help. Already, early in this, I have noted things predicted here. For instance, the fact that you Look normal makes people think you Are normal. I keep hearing going back to work too early may give you setbacks. The need to "protect yourself" with silence and silent areas. Will continue to follow this.
  13. 4 points
    Well, I am wearing the hearing aids. I have an app on my phone that allows me to adjust the amount of “white noise” I need to help mute the racket that has been driving me batty. It works some. Actually pretty well. I still hear some of the squawking but it’s more tolerable. Downside is they are expensive. I’m not sure, unless the tinnitus is really bad, it’s worth the expense. I have significant hearing loss as well so can justify the expense for that reason.
  14. 4 points
    Hi Luke, sorry to hear about mum but glad in a way they are looking to help her recovery and the shunt operation whilst a really big deal for everyone to consider can also bring some real change too as Win attests to above. I had hydrocephalus with my bleed, had an EVD placed for many weeks and then removed before discharge and then less than three months later I was back in hospital where it showed my hydrocephalus has not resolved as they thought and my ventricles were too damaged to do the job properly. End result, shunt operation after a fair few Lumber punctures didn't kick start anything. When you have hydrocephalus like this it seems that we may have some absorption of the cerebral spinal fluid but the ventricles just can't keep up and after time the build up just shuts everything off. It is like a shutting down of all the senses. I can still remember that feeling, like my lights were being switched off one by one and so when Win talks about lights beings switched on after her shunt operation I always smile as I know exactly what she means and feels like. If you go high ( or low) pressure everything starts feeling wrong, nothing works properly and so then you have the effects of the bleed and have to cope with the pressure effects combined with it so it's like a double whammy of cognitive symptoms So a shunt operation is a scary prospect but but I can honestly tell you that it is also life giving as it gave me back a state of balance and equilibrium my brain desperately needed to be able to get on with recovering from the bleed. Five plus years on and I do still get some challenges with my shunt but for the most I am steady and that's all I aim for. My toilet overflow device, or James as I call it keeps me up and about and for that I am thankful and I hope it can do the same for mum. Mum may feel very poorly post op, it does takes a lot out of you like any big procedure does and then it will take her time to get used to having the shunt as well. She may feel very nauseous and light and sound sensitive at first and so trying to help with that is good and body temperature can rocket up and down at will at least it did for me , so have blankets to hand, bed socks, eye masks. She will need to rest and sleep and sleeping propped up was very helpful especially in the first few months and even now I never get up from sitting or lying fast, that's not a good look! She will also has to have her hair shaved again which is annoying and so maybe try to find her some soft hats that she can wear post op as it heals as it feels quite sensitive. she will also have a incision on her abdomen from where they place the tube. I recommend reading some of the literature on the SHINE charity site and applying for a SHUNT medical card which she can carry, it's quite a good place for information . Good luck whatever your decide. Tell mum we are thinking of her. daffodil
  15. 4 points
    Thank you Win for the response. I have to admit I got a little emotional reading that. Your condition before the shunt sounds a lot like my Mum now. I really hope she has some memory improvement as presently she doesnt remember anything longer than 2 minutes. You are a real trooper & your high spirit is a wonderful thing. x
  16. 4 points
    Yep, suffer from this too - like some one is pushing on you head from inside and outside - excellent description Win x
  17. 4 points
    Hi Peter Welcome to BTG, glad you have found us. As Louise says, must be nice to have the sun most of the time. 4 months is very early days, I was just about returning to work at that stage on a very slow phased return. Still had periods of being absolutely floored and unable to anything but just sit! I too had a non aneursymal bleed and like you often thing 'why and will it happen again?' don't think that feeling will ever go completely. I am 2 and a half years out now and think I have reached the point I am likely to stay at. I've had plenty of ups and downs, career change and plenty more. Try taking some outdoor exercise gentle walks or maybe cycling. I find running therapeutic and a stress buster. I gradually built up my fitness after the bleed and now run 2-3 times a week plus I do classes at the gym. Take it easy, drink plenty and don't expect too much too soon. Keep us posted on your recovery. Clare xx
  18. 4 points
    Hi, You aren't being lazy. It isn't as if you've hurt your finger or an arm or a leg. You have had a brain injury - it's at the core of everything you do and it doesn't heal like other parts of your body do. Brains take a lot longer to heal and unfortunately you can't see the injury, but it's there alright. How serious an injury was it? The answer lies in the statistics, which show that you are a lucky survivor, as we all are. There are many who were not so fortunate as us and lots of survivors are left with permanent injury or disability and it's time those around you realised that, and appreciate how lucky they all are to still have you with us In recovery terms it's still early days for a brain injury and the sooner everyone around you comes to realise that the better. - how will they feel if they make you ill by piling on the pressure to do more? Money has no value, except it's part in making you well again - that's all that's important.
  19. 4 points
    From pj's husband ... I just want to thank everyone in here for being so supportive. I appreciate the mix of gentle love and true understanding of her situation along with tough love and solid ideas for dealing and coping with this! It gets difficult when I'm right there for her and giving her suggestions, support, advice, etc and four months later when a neuropsychologist says almost literally word for word the same thing she hears it, is encouraged by it, and tries to implement it FINALLY while acknowledging to me that if she could let me help her she would do so much better. There ARE S-O-M-E overwhelming things in our home but I've been blessed by God to step up like never before in this situation! It just takes a village to get pj to look at any other perspective and I've lived through that with my own chronic health issues. I'm continuing to look for healthy ways to support her and learn to be what she actually needs and not only what she thinks or says she needs, so again I appreciate you all as an invaluable resource and lifeline!! God bless all of you who battle this struggle in yourselves or with loved ones! Thank you. 🤓❤️😇😇😇
  20. 4 points
    Hey hun There's a saying I liked to use when people assumed this of me: "I look well from afar, but I am far from well" I also had a tee shirt with the words "I can see clearly now the brain has gone" written on the front!! I really feel for you because I know where you're coming from. I had the same problem with my lot - because I was walking and talking and discharged from hospital within a week of my coiling op, they all thought I was fine. They promised they'd help around the house blah blah blah. Did they?? For the first week sure - then assumed I was perfectly OK. It wasn't until about 5 weeks after when I had a complete melt down that they started to listen, especially when I was diagnosed with PTSD and referred for counselling. It lasted another couple of months - though hubby did make sure that I rested and slept properly bless him. The housework etc though - no; well not up to my standards anyway - which stressed me out more than actually doing it myself. I suggest you get your partner and family and friends to have a look at this site. It might help them realise that you are far from being lazy - in fact you are trying to let your brain rest so it can heal. Muscles ache after a work out so we rest them - you can't do that with a brain. I broken limb s in a cast so it can heal - we can't do that to a brain. I know it's hard, but stop worrying about what they think and look after yourself - they have arms and legs don't they?? Then surely they're capable of doing housework too, after all they live there so they can help keep it clean and tidy. Remind them the DOCTOR has told you to rest - its not a lifestyle choice!! Look after you and make sure you're drinking plenty of water too.
  21. 4 points
    Hi my darling I'm sorry you feel this way but getting the help you need is so important. Can you call the neuro nurse specialist at the hospital you were treated at and explain how you feel and ask her for help. You cant keep going on the way you are because as you say you are hitting a brick wall Your employer needs to get more informed. Is there a HR. department who can support you? When you see the psychologist on the 6th explain how you feel and get him/her on side and you also need to get your husband some support from the VA. They, I believe, are very good at helping vets get what they need in the way of support. Because you are part of that system as well and if your employer refuse's to accept the information then they can be forced to comply legally. Also think about telling your brother that the money tree has dried up because you and your family are the most important thing. More so yourself need help to get through the nightmare, you cannot carry people who are not going to support themselves. There is an old saying you made your bed you sleep in it I understand how you feel but I'm a little sad because you didn't come on here earlier sweetheart because you are not alone. There are people who will listen and try to help you, that's what we are here for. Your health and well being is more important, please don't resort to drinking, please drink plenty of water and see if that reduces the headaches because of all the other stuff going on is draining you big time. Get some support and a kind ear to help you through this crisis. Please remember that we are here and we want you to recover as much as you can with support and love from us all You won't be who you were, embrace the new you and accept that things will get better promise and things will hopefully solve themselves but you need to be honest with psychologist and us. Take care and massive hugs and cuddles from this side of the pond xxxx
  22. 3 points
    Welcome to the site. I am also one of the many men who frequent this site. This site is for survivors, care-givers, and other supporters regardless of their sex. It has been of such value and support for me and I hope it provides the same for you and your husband. Best wishes Chris
  23. 3 points
    Yes you may notice that some people will react differently to this current version of you. Some changes for you may be temporary, others more permanent. Post my bleed I almost had a Tourette's level of honesty. I just said everything as I saw it with no filter. I have relearnt and applied a new filter in the years since but I definately can say the people who are important have stayed with me, the others ? Well let's just say I just enjoyed their company at that time, that place. I don't begrudge them that they can't or don't like this version of me. Everyone changes.
  24. 3 points
    FRM, Try not to be in a hurry to go back to work get yourself at least 75% better, it is a long slow process, there'll be days when you can take on the world but then Wham back to bed you go. I can only speak from my experience I had an SAH 4 with Ventriculitis, Sepsis and Hydrocephalus . Just now you are a survivor and keep happy as I found that a smile and singing helps, sounds daft but no stress !! whatsoever plus I've always wanted to tell a Doc what to do ha ha xx Keep well and for the odd pains in head that come and go I take paracetamol. Keep a positive attitude also it is a must !!
  25. 3 points
    Hi Luke, I have a shunt and am only speaking from what I was told happened to me as I remember nothing before my shunt !! When I was in cuckoo land before shunt I remembered absolutely nothing, my family say I spoke to them but remember zilch. Which in a way was good for me as no fear!! My husband and Daughter were worried as I was sleeping a lot etc etc and while in hospital thought I was in a café saying to Daughter "My treat" I came home (So I am told) and remember going to Hospital and said to a nurse put my cross on when I come back. Now whether or not I said this ???? I came around and sang to said nurse. I was in there from Thursday until Saturday when they said I could go home. I remember my Dogs going potty and my Daughter and hubby telling me what had happened in 2009 SAH. A year later I had shunt in and it took me approx. a week or 2 to realise how ill I had been. I have a lump behind my ear and a drain into tummy to drain my head off. (Scuse my words) When I first had it done I was "I don't like this big thing behind my ear" but I was able to tell my family how much I loved them. Not many people get a 2nd chance. So I am glad to be a survivor. Short term memory is awful but ask me what happened years ago and I'll tell you !! Good luck in your decision making, as my hubby was going to cancel mine, he rang male nurse who worked with Neuro Surgeon and said he didn't want me to go through more ops. Take care and have a word with Surgeon tell him your worries. xx Wish your Mum all the best Luke xx
  26. 3 points
    Tina, so pleased you had a holiday and that would have been good to just rest up and slow things down. It will also help with confidence after the bleed. My tinnitus still lets me know if I am doing too much, it is one of my early signs, ( which I ignore too much and too often) that I should stop and rest as it jacks up the intensity and volume. As I have said I just try to sit with it and that works best for me as it makes me pause and that's what I need at that moment. i ignore it at my peril really but I see it as one of my amber lights rather than a hard red stop! Take care, go steady
  27. 3 points
    Hey Peter warm welcome to the site so glad that you found us.... first thing unlike most of us on here you have the sun a lot of the time that has to help I'm way better on bright sunny days... Great news your MRI was all clear, there is a section on the site for Non SAH think though whither or not we've had one we all wonder 'why' and will it happen again. for me as time has passed the 'will it' has lessoned a lot.. Sorry to hear you had PTSD horrible maybe speak with your doc about how you feel, see if they can suggest coping stratigies... why not just go out and walk forget about the treadmill for a bit... There is no 'timeline' as I know off each one of us is different it does take time each day at a time....
  28. 3 points
    Tori, it's wonderful that the rehab is having such an impact. Please tell mum that she is not stupid from all of us here. There have been times I expect most of us have uttered that phrase when something we could do so easily before takes so much effort now or it's hard to figure out why we just can't do it. Frustration is a constant companion at first once pain moves over but it continues to improve especially if you always keep it xploring the possibility of a situation and are prepared to adapt and accept all offers and suggestions of help. I can look back and see so many 'regains' since my SAH and am fortunate that most of my physical ability is similar to before. It's not the same, there is plenty still I can't do that I did before and also that I just don't have the cognitive stamina to attempt but every , day, month year since has shown improvement. Keep looking forward. Take care and thanks for the updates. People will read and take comfort from your sharing ..
  29. 3 points
    Hello Tori - very good to hear about the progress your mum is making! You are doing very well, Well done to you. The memory will slip in an out and there will be lot of relevant & irrelevant things said. - my husband had a dream of being in france and in a very technologically advanced place. LOL It took my husband a good 10 days to be reasonably stabilised with the memory and speak cogently. Re: the eye vision - with the hemorrhage that my husband had, few the blood vessels behind the eye also had burst and had aberration there too. Your mum will hopefully be referred to the in-house eye clinic, if not, please ask them to refer you to the eye hospital where they will check the eyes dye-assisted test(which will not impact kidneys) and let you know if all is well. For my husband (who had glasses already) there was a significant change in eye-power and we got a new set of glasses made. Grumpiness and annoyance is something I have faced a lot from Sandeep, because of the haemorrhage and the ischaemic stroke he had, he was not legally allowed to drive until the eye-check was complete/doctor sign-off AND the DVLA approval came through. I can tell you it was the roughest phases - he was dependant on me physically, physiologically and also in terms of memory! It was not easy. BUT it will definitely get better - listen to lots of positive stories and positive people - dont worry about cutting chords with people that darken your doorstep. You are doing very very very well - it will get better ! Prayers to you and your mum. Best regards Shobana
  30. 3 points
    Hi All i hope that you still maybe interested in my updates so here it goes... Mum is now walking down the corridor with a zimmer in her physio sessions and doing really well with it!! She is also transferring to the loo and bed with a spinner thing so she stands etc...very impressed!! The week before all this , the ward consultant told me that she doubted very much that my Mum would walk again... now she is getting more aware, she is getting very irritated and restless. She says she is stupid and cant understand why she can’t do the things she used to. She gets really upset...I’m presuming that this is a pretty common phase? She is still struggling with orientation...knowing what day/ month/ year it is but she has prompts in her room that she can read. Her reading is getting better but we don’t think she is understanding what she is reading at the minute... 5 months in now and I cannot believe they difference over the last 6 weeks in rehab.
  31. 3 points
    Thank you everyone. It has been such a rough couple of months. I will hang on until my neuropsychologist appointment and I will be brutally honest with him. I sincerely hope he will help me with my employer. It is weird because no one but my immediate family and a very dear friend at work wants to know how I am doing. Or what is realistic for where my recovery is at this far out. Thank the Lord for them! I am going to pursue some of the suggestions offered. I am pretty desperate for help. Thankfully my husband realized on his own about 2-3 weeks ago I have been struggling with bad anxiety. If not for him, I think I would have walked into the ER thinking I was having a heart attack when it was actually anxiety. He he is good about sitting with me, helping be do deep breathing, turning some ocean sounds on the Echo, rubbing my shoulders or feet, and bringing me back down. He does really try to help in any way he can. And he tries to make me slow down, I just don't listen much. I am so,used to being the one that keeps everything running and everything on track. Hard to let someone else step up. My 3 adult children, and one of the sons girlfriend, and my husband are the reason I hang on. That is one good thing that came out of this, we are all so much closer than ever before. We all seem to have more patience and be more understanding with each other now. And we are constantly checking in with each other to make sure things are ok. See, I found a positive!! I do have support but still get so overwhelmed by not being able to do what I used to. I swear I am going through the steps of grieving over losing my old self and my old world. i will admit it helps to talk to people that actually know because they have been through it too! Thank you you so much for the kind words and good advice. I will keep coming back here. It helps a lot. Now it is time for American football, one of,our favorite pastimes as a family. They all still pile into my living room to,watch the games, in spite of the mess and the fact that I go,to bed at halftime now. ❤️
  32. 3 points
    Wow. I feel like a total badass!!! 😂😂😂Thank you so much Chris!! My first thought after reading what you wrote was "damn right"! This site has been a godsend! Thank you everyone!!
  33. 3 points
    One way to look at it that helps me is like this. You had a weakness that you did not even know about. It tried to take you down, but you survived. Now that weakness (no matter what caused it) is gone. Vanquished. You are now stronger than you were before it happened.
  34. 3 points
    Thank you all! I had my ears checked and there was nothing visibly wrong with them, then again I did not expect there to be. Luckily, the noise is not constantly loud, but mostly a background noise, and I am learning not to panic when it does increase in volume. But I am surprised at the wave of emotions that I have felt since my ear started to bother me. I get these memories from being in hospital, waking up from being in an induced coma for a week, seeing my family again and their worried faces. It makes me so sad, that I made them so worried, especially my young daughters. I guess I have to remember these things to move forward in my healing process, but it is exhausting to be sad. I am very much looking forward to seeing the therapist on Friday. Meanwhile, I will try your advice Win, to think happy thoughts and sing .