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Showing content with the highest reputation since 18/06/19 in all areas

  1. 7 points
    Hi I am so proud, some of you may remember my daughter, Rebecca, had a SAH 4 1/2 years ago at the of 17; she has struggled throughout this time but was determined her SAH would not stop her from doing what she wanted. On Friday it was confirmed she has achieved a 1st class honours degree in psychology! I am amazed at her hard work and dedication, she deserves every happiness in this world. Her university days have not been what most would expect, her fatigue has prohibited her from taking part in extra curricular activities, but she has got through. She has studied hard but still had a wonderful experience. She manages her lifestyle to suit her needs and doesn't let it get her down. Yes, she has regular counselling and attends support group every month; but she is a happy and confident young lady. She starts a new job in couple of weeks, at the RVI, the hospital that saved her life - a new chapter in her life and hopefully the start of a fulfilling career doing something she loves. Heather x
  2. 4 points
    Hi there, I am also so glad to have found this forum! I am a 55-year old fit female with no health conditions and great blood pressure, and had a NASAH on 9/26/19. I was driving over the Bay Bridge in San Francisco (literally going through the toll booth) when I had the thunderclap headache and terrible stiffness in my neck and some numbness in my hands. I managed to call emergency services and an ambulance met me on the other side of the bridge and took me to the ER, where they put me on the CT and told me I was bleeding in my brain. As others, my CT scan, MRI and angiogram showed no aneurysm--I was in the hospital for 8 days on the Nimodopine regimen and an angiogram at 8 day mark was clear and I was sent home with 2 weeks off work, which was not enough time (I suspect I would have been put off longer if I lived in the EU). I am a public agency attorney and my work load is quite heavy, so going back into the stress of that environment so quickly with 10 hour days was difficult. In addition, I have a lot of stress at home as I have a son on the autism spectrum with mental health issues, and a daughter with a mood disorder. Since the NASAH, if I try to drink any alcohol socially I feel awful and the headaches intensify. I feel like I need 10 hours of sleep a night to feel good. I feel lucky to be alive and have the same anxiety expressed by others here that I will have a re-bleed, although I was also told that the chance of that is slim to none. Not knowing the source of the bleed or why it happened is difficult for me, as I feel like there must be an answer. I do wonder if inflammation in the body and brain can be a factor in causing vessels to leak. The neurologists at the hospital said stress was not a factor, but the nurses said otherwise--the hospital where I stayed is in Silicon Valley and the nurses said they were seeing an uptick in NASAH in younger people who had large amounts of stress. Anyway, so glad to have found this forum and to be able to connect with others who have had a NASAH.
  3. 4 points
    The phrase about losing your zest for life really encapsulates how I'm feeling right now, but couldn't vocalise, so thank you for giving me the words. I'm still trying to come to terms with no longer having the ability/stamina for taking part in my old hobbies and although walking/nature watching & photography are replacements they are reliant on good weather (and a husband/friend being willing to do the driving). Combined with a new job that I'm struggling with & a pay cut it all feels too overwhelming. I'm hoping that our forthcoming holiday will help kickstart things but as ever coming on here reassures me that I'm not alone in how I'm feeling, while at the same time feeling sad that others are also struggling. good wishes to all
  4. 3 points
    Hi welcome to BTG, glad you have found us and are finding the site helpful. Mine was also a non aneurysmal bleed and I too was fairly fit pre event. I was actually running when mine started and ended up collapsing and being blue lighted to the nearest hospital. It's a long recovery journey but take it slowly and you will get there. I'm back running again and that helps with the stress I suffer from work. Be prepared to adapt your lifestyle to fit in with your capabilities and accept the new normal. Be good to hear more from you. Clare xx
  5. 3 points
    SarahLS a word you should take onboard is acceptance. It's an important word for you. Your old life is now different from the one you now live. Once you accept you are different your mind starts to respond to your new way of life. It took me nearly 8 years to do this.. but boy what a new life I have now.... A new word can be restart. Take a few aspects of how you lived before and try to adjust them to how you are now. I myself was caught in this trap for a very long time. Over the past 18 months my life has blossomed to something that I thought couldn't happen again. Reading some of my posts, I share how I do things each day. I used to drive a lot! 15 times the normal average minimum. (10,000 miles) Swishy you say you struggle with changing in a dressing room! Adapt, how? Why not use a camping chair that folds up into not a lot of space? Cost is nominal too. Easy to carry, you can also ask for one to use, shops are required to provide one! Although not many people know this... Second option is a walking stick chair see here https://www.co-opmobility.co.uk/mobility-aids/walking-sticks/walking-stick-seats/ For you my word is determination. Look and improvise. There are many solutions to the many problems that are sent to test us. Just ask and sometimes someone has solved the problem themselves... just a thought here... Mike
  6. 3 points
    I've found a love for gardening in the last 18 months as I can't exercise like I used to (gives me a massive headache) so gardening is a fairly light exercise but also very therapeutic.
  7. 2 points
    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
  8. 2 points
    Hi Diane, I’m 2.5 years post bleed, and I still deal with the fatigue. You are right, it is difficult, at times, for others to understand that our lives have changed. We need to make accommodations for our new reality. It takes a very long time for our brain to heal, and honestly it heals but in that healing, we change. I was in the hospital for one month ( 29 days). I had a couple small bleeds, but also had vasospasms. I was home for another 4 months before I was able to return to work, and then I was on a reduced schedule. I am an Early Childhood Educator, in the field for 35 years. I now work 14-16 hours a week, and it is perfect. There are some days ( though less now) where I feel like I’ve hit a brick wall and need to nap. That’s OK, I am stronger than I was a year ago, I feel lucky to be here. This is is a wonderful place to ask questions, vent, realize you are not going crazy, that there are other people who feel the same as you do! Keep popping in, and learn from all of us. Take care, and be kind to yourself! Smiles and hugs, Pat
  9. 2 points
    Hi Diane welcome to BTG glad you found us. Out of interest when did you have your bleed? As Jean says we are all survivors and coming to terms with what has happened to us is one of the hardest things to accept. The changes this forces on your life can be difficult to process and adapt to but you will with time. My bleed was 4 years ago and I still daily have to think about the changes it has forced on me. Work has never been the same it’s different now. Not worse but different and not what I ever imagined I would be doing. However many changes I have been through I feel that each one was meant to be and all of them were post the bleed. I too was in a very stressful job and do wonder if that played a part. I know I can’t deal with stress now and avoid it if I can. Take it slowly and don’t rush into working too many long hours. You’ll get there! Clare xx
  10. 2 points
    Hello Heather, also thanks for sharing about your daughter Rebecca 4 1/2 years on. It really is so uplifting to learn how she has adapted and done so well in her studies. Achieving her degree with 1st class honours and then getting that post at the RVI must make both of you so proud of her resolve and determination. We all know how much support she will have needed during the early years …. well done to you and your family . Wishing Rebecca every success as she settles into her working life while also coping with her SAH recovery. Subs
  11. 2 points
    I see last year I stated I would reply to this in case it would help someone after my visit to primary doctor. Please excuse the oversight. He agreed with you guys, regardless of the reason for the BP rise, stress makes it even worse. He told me something that stuck with me: *Your body remembers having a bleed.* He gave me something to calm my nerves, never took, and told me next time to rest, take bp; if still up, take bp pill, rest and take bp; if still up, take one of those pills to calm me, rest take bp,, and if it was still up, call him. .... Over the course of the year, I have had several times when I felt off in that way, took my bp and it was high for me. During those times, I pull out the resting bp meds, rest and ride it out. No idea what causes it to rise...life, age, doing too much... I do know, after a few days, it has always come back down to my normal and for that I am grateful. Blessings, everyone.
  12. 2 points
    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 pleaseget 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
  13. 2 points
    Hi Mandie, I cannot do a lot before I get backache and then I need a sit down...My aim might seem daft but it is to walk around a supermarket and choose the stuff I want!! Fed up with being told "Win we don't need anymore of those" Well shut my mouth lol !! <~~me taking of Stan Laurel. I love to be happy but there are days when I want to just be left alone as they don't listen. I sound like I am moaning but without my Family being in my corner (Boxing talk ha) I would have been put in a home ...I had hydrocephalus and was talking to my Family who passed on. This site is a good place to come on and give vent and others have been through similar. Cheer up and I sang a lot ..poor family and l always think of my Mum as she bought me so much laughter in my life ..see laughing about her already. As you say your aim and your sky..We are Survivors albeit slightly different with our brains and our tears, so think what you want. It helps having this site, hope you find your sky and your aim xxxxx Love Win xxxx
  14. 2 points
    Having a really tough day. I'm over 4 years out from my MAJOR 7cm bleed. Still no job, still lots of mood swings where I feel out of control, my family still complains about how hard this is on them...husband and an 18 and 16 yr olds! what do you do to turn a bad day around? How do we ever explain how very difficult this journey is to family? No one can understand unless they've been thru it, and I don't want my family members to ever go through this! i just need something to make my life seem worthwhile again. I can't work as an EMT anymore, so I'm going to start volunteering at a local hospice. I'm also trying to raise money for a missions trip, but everyone seems to want to tell me what I can and can't do. As far as I'm concerned, I have a second chance and don't want to waste my life living in "what if's?" Thd Sky is the limit as far as I'm concerned...my Sky, my limit! thanks for reading this! Mandie
  15. 2 points
    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.
  16. 2 points
    This is the lanyard. Just go to the assistance desk and ask them if they offer the scheme.
  17. 2 points
    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
  18. 2 points
    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
  19. 2 points
    Daff, after you telling me last year about travelling through airport with a hidden disability I saw this today from Headway... https://www.headway.org.uk/news-and-campaigns/news/2019/sunflower-lanyards-take-off-for-passengers-with-hidden-disabilities/?fbclid=IwAR2oP0xe5NfQHu3qD90mkqiL4n9K0gdPwenDurqCGAEotOFNHQlcfMVxkNA Hope its ok Mods I can share this??
  20. 2 points
    Some great comments posted already, time, support therapy and Physio will all help you in the long run. Just ask away if you have any questions as we are open all hours. Taking your time restarting your life again is a must. Too much too soon and it may slow your recovery a little. Theres a lot of stories here on BTG, some will be of use, some may be funny, most are very informative and you can learn how we recovered and helped ourselves with help from other posters to get as far as we have. I wish you both the best of luck in starting your journey please return and let us help you help us? Regards Michael
  21. 2 points
    2.5 years on . 1. Don’t waste my time with people I don’t like . 2. Grateful for my life 3.I still get scared every time I have a headache or strange sensation. 4.Sometimes I can’t sleep because I think I won’t wake up .
  22. 2 points
    Hi, I just wanted to briefly say where I am 1 1/2 yrs out. What made me think of it is, I spoke with nurses who have known and worked with me forever and this is what THEY see. Firstly, i am happy and doing great. I am working almost full time.But again, it is best to let Others tell you how you are, because like most men, I am in some denial and want to push forward. Here goes: 1)I am more laid back about life. This has been the best gift of this thing. I fly and visit family, play golf, run, and dont work so hard. My ICU doc told me all young people he sees with this are uptight workaholics and that was me. I was kind of a miserable workaholic before and not now. YEAH!!! Thank you!!! 2)I cannot learn some things. I read a lot and am learning spanish. Why???? Bcz i am trying to prove I can do it. But the other night, i went to a salsa class and just could NOT learn it. 4 steps, could not do 4 steps. I can learn on my own (ie:learning spanish) but if someone verbally shows me, i can not learn it. simple things.Frustrating. 3)this is funny, but i put things in particular places and they MUST be there or I get angry. This is all after the bleed. I had a rentacar the other day. And immediately after getting in, I rearrange everything to where it "lives" in my home car. Things must live in their place!!!I have some fear of losing things. My mind cannot remember where i put it. So i always put it one place only. When parking the car I always park in same spot. Each place i go has one spot. Or else i will never find the car. 4)I am more adhd now. So say my coworkers. "we have to keep you on track" they say. 5)my emotions go up and down. This is a tough one, because I do stupid things and people blame me. I think the emotion center of my brain was damaged. This causes me trouble because noone wants a doctor with emotion issues, right?? 6)I meet people, then remeet them. Funny. 7)I repeat myself a lot. This annoys people. They tell me all the time. "you already told me that". I get that a lot. (just reading this post, i noticed i have repeated the "learning spanish" thing 4 x already, jeeeeesh!) 8)My short term memory is TERRIBLE. What were we talking about??? Just kidding. But seriously, if i am in a restaurant and get up to grab a fork, half way there I have no idea what I went there for. So I say to myself "fork,fork , fork, fork" and then the person near me says "what did you say??" And i say "fork". And they say "why are you saying fork?" It is daily comedy in my life. 9)I have eliminated toxic people from my life. Another gift of this experience. I used to be polite to them out of politeness. No longer. They have been deleted. I also remember , very clearly, who came out of the woodwork to help me through this crazy ordeal, and I remember very clearly who abandoned me and pretty much left me to die. My deficits are comical to me. They show something of how the mind works. I can memorize the past preterite tense of spanish of an irregular verb, BUT cannot remember where the car is! I have strengthened my relationship God thru this ordeal and thank Him every day for my recovery and new life!! I am probably more glad that im not paralyzed then dead. I was very lucky to be alive, not paralyzed, back to work. So you will never hear me complain about my deficits. To me, they are comedy. I thank God every day for my new life!
  23. 2 points
    Jean, like you I have problems with various things. Locally we have a group called going steady It's a chair based exercise group, at 57 I'm the youngest. We do these exercises and at first they seem way too easy to look at. Oh how wrong was I. But, given it's only and hour doing this, it really increased my abilities to be stronger in stance and balance. Being able to sit down and exercise was brilliant. We use the exercise bands of differing resistances. I'm now on black. With these bands you can do so much, stretching, pulling and many more of the core exercises to strengthen your tummy, arms and legs. You can also use them in a rolled up tube to help with your gripping too. Although these bands are only 5 feet long they do wonders for your body. Give your local rehab unit a call and ask if there are such groups in your area? Secondly and much more fun is exercise in a swimming pool, it's a lot harder to fall over and cause injuries. Water resistance is surprisingly good at core repairing and strengthening too, combining both may offer a very nice end result. The nice thing about both of these is it appears to be a lazy way to exercise but take my word it's not, but I feel great after 36 weeks! Mike
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