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  1. Well I cannot believe my eldest is 18 and I worried I wouldn't see him grow up and here is the day so to everyone who is afraid of having another stroke or not seeing their children grow up don't worry I never let the fear consume me and I am so glad I didn't as I could've wasted 18 years of my sons life and missed all the important times xxx I had some dark times over the years god its been tough but I never really let the kids see it I used to lie in bed at night and think and cry but that was my worry time xxx I don't worry half as much anymore but I wanted to come here today and let you all know you can live after you can be happy you can get through the fear xxx All the best to everyone at btg keep moving forward never let anything or anyone hold you back xxx Karen and all the moderators thanks for being there over the years when I have needed to vent and through family problems me and my husband splitting up losing my mom earlier this year you will never know how grateful 🙏 I am to you all ♥️ I have put it here rather than green room as I went visitors to the site to also see how you can be happy after hemorrhagic stroke you can have a life so keep on keeping on never give up xxx
    11 points
  2. Hello everyone! It’s been awhile since I posted, but I always love to come back on my anniversaries. Tomorrow will mark 5years post bleed. It just seems like a hallmark anniversary 🤷🏻‍♀️. So much has happened since then, and I truly believe all change, though scary at first, was for the best! My career choice was an early childhood educator and support worker for children with disabilities. I say « was » because as of last week, I have retired from working front line with children, after 37 years. I have moved to a new organization, same field, but now am in the administrative side of things. I am learning a new skill set at 62!!! This change in my career path would not have happened without the initial changes in my work environment that were necessary after my brain bleed. Because of sensory issues and fatigue, I could no longer work in a classroom, so I switched to working one on one with children in their homes as a private Behaviour Interventionist. This led me to the company I currently work for. I recently was promoted to Regional Manager Assistant, which allowed me to retire my support work with children. I presently work approx. 50 hrs a month, and work from home. This allows me flexibility in my work week! What was a very scary time in my life, turned out to be a time of reflection, change and new opportunities. Do I still have fatigue? Sure….Do I still have anxiety when I feel a weird twinge- Yep…..Do I still have problems retrieving words? At times I do, but I blame it on the age 😂😂. This new career opportunity would never have occurred prior to the bleed, because I was fine with the status quo…turns out there was a whole lot waiting for me. I would like to thank all of you for your encouraging words. To the moderators, thank you for creating this safe space to share our experiences, our fears and our triumphs! Wishing everyone a happy recovery. 💜Pat
    6 points
  3. Thanks everyone xxx If my words have helped even one person then I am happy xxx
    4 points
  4. Thanks for sharing Jess and we feel your heartfelt gratitude. Congrats to your eldest son and blessings to both boys. Reading such posts truly does give me strength for the day and bright hope for tomorrow. 💗Kathy (Colorado, USA)
    4 points
  5. Thank you Jess for such a positive post. Happy 18th birthday Gary. You rightly should feel very proud of how you have faced life post SAH and been a good caring mother to Garry and Shayne. You did not let your own personal tough struggles with your health deter you from bringing up your lads to provide them with the best possible chances in life even in the past year when your mum's health was failing too. Well done and as Sami says... 'inspirational' Subs
    4 points
  6. Jess, your journey has been an inspirational one to all who have read your posts and have has the privilege to meet you. In short, you're amazing xx
    4 points
  7. Thank you everyone for your support and well-wishes. It's so good knowing that there are people out there who can relate to what I'm experiencing and who offer reassurance that this time too shall pass. Thank you.
    4 points
  8. Hello Claudette, My heart goes out to you as you navigate this new set of challenges. I had my rupture 13 years ago and aneurysms (2) ultimately were clipped, so they're supposed to be fixed forever and I'm not even monitored any more. Does that mean I never have a moment of worry or anxiety about it? NOPE. So first you know that you are completely normal and entitled to all the feelings you are having now. All at BTG feel that, respect that, and support you, especially in light of all the other occurrences and obstacles you have to face. Honestly, I believe that Kathy has expressed that support so eloquently that I don't know what to add. All I can say is whenever I find myself spiraling downward I think of all the reasons to keep pushing on, especially those who really need me. And I lean on my faith, which really developed well after the SAH. I won't lie, it's a struggle sometimes, but it definitely helps to have a trusted family member or friend to reach out to and to seek professional care if it all becomes too much to do alone. You've already miraculously survived TWO ruptured aneurysms, so you obviously are a strong lady. YOU CAN DO THIS and we will be here to buoy you up! Love, Colleen (Texas, USA)
    4 points
  9. Hi I was out running when I had my bleed and was keen to get back to it afterwards. It took a good couple of months before I was able to start exercising again so to walk a mile after 2 weeks is impressive. I think you need to speak to your neuro doctor about how much exercise and when. Give yourself time, you were fit prior to your PMH so hopefully you will be able to regain that fitness. I now regularly run 4-5 miles three times a week with no issues but working for a full day still floors me - people can suffer from different types of fatigue, mine is brain fatigue. However I do find when my brain is saying 'no', I can go for a run and then feel much better. Take it slow and listen to your doctors advice and hopefully in time you'll be back to where you were. Take care Clare xx
    4 points
  10. Jess, wonderful words of encouragement...Love that you wrote this, I lived with the worry but gratefully was able to get it under control.. "Keep moving forward" love these words ...thank you for sharing and thank you for your inspiration. xx Jean
    3 points
  11. 🎈Happy 18th Birthday🎈
    3 points
  12. Jess i also have had the priviledge to meet you and your lovely boys. Huge respect ❤️ you are a lovely caring thoughful lady and i agree with Sami & Subs you're amazing and inspirational Thank you for sharing xx
    3 points
  13. Dear All It's been a while since I've been on this site, but with my recent news, you were the first people I've turned to. You see, I've just received the results of my angiogram, and it says that they've discovered another aneurysm in my brain, which means I now have 4. I had a subarachnoid haemorrhage in 2015, where two of my three aneurysms ruptured. These were coiled and a decision was made to leave the 1mm unruptured aneurysm alone. In 2019, it was decided to that one of my ruptured aneurysms needed more coils to be added due to the widening of its neck. The angiogram that I was supposed to have 6 months after my operation didn't happen until this year due to covid. And now the results show that I have an additional aneurysm, that is between 0.5mm-1mm in size. This news has knocked me for 6. I just can't believe that I've got another one. I lost my job in July and I'm struggling to find work, but I've been positive and determined to resolve this, and I have been happy, looking forward to the future. But the news of this aneurysm has knocked the wind out of me and I've sunk into depression. I haven't told my children as they've been through so much, what with losing their grandparents, my haemorrhage, and their dad's cancer. But I'm finding it hard to look carefree when my world is falling apart. I'm not looking for advice - I know that I have to wait for my appointment with the consultant to see what suggestions they make. But what I would like to know is how do you all deal with this?
    3 points
  14. Dear Claudette, As Kathleen wrote above...I care...you have been through so much... I understand your worry and I also understand wanting to protect your loved ones. They will be a comfort to you as you navigate all this. Sending hugs and you are in my thoughts and prayers. xx Jean
    3 points
  15. Regarding recovery time, my neurologist said it would be about 8 weeks until I got back to my baseline, but that was really optimistic. That seems to be a pattern. I'm almost 10 months out, and while overall feeling pretty good, I occasionally get one of those unique headaches. But for the most part I'm back doing the things I used to do. As for driving, in the US the doctor just tells you not to, in my case for 6 weeks--our DMV never got involved. In the early days (after the 6 weeks), fast highway driving was really uncomfortable and led to exhaustion and more headache, but driving on the local streets for short jaunts was OK. I can just confirm what everyone here has been saying--be patient, listen to your body, and get rest. It will get better, but it'll probably be a matter of months, not weeks. And I never stopped drinking my usual moderate volume of coffee--in fact they brought it to me while I was in the hospital.
    3 points
  16. Pat, that's wonderful news. Glad that even though you have "retired" you've still find a way to work behind the scenes for the children. That's how I see my job in a school office - I'm not educating the children, bit I'm working behind the scenes to make sure that those who do have everything they need to do so. Congratulations on your anni-versary and your new position xx
    2 points
  17. Hi a very warm welcome to BTG So very sorry to hear about your Mum, a very scary time for you both. So glad you found us. It is very early days for your Mum in her recovery. Every little thing she does will totally exhaust her. She has had a major trauma to her brain. It is working overtime to repair and also work as normal. You mention they did an angiogram but not confirmed if they have gone ahead with her surgery yet. I had to wait for 14 days for the swelling to go down in my brain before they would even attempt my clipping. Coiling was not an option for me. They were watching and waiting for the right time to hopefully operate. I had to lie flat on my back too. Like your Mum, found it very uncomfortable and difficult to sleep. My mouth was also very dry and uncomfortable from nil by mouth. The retraints sound just awful but may be necessary for her safety. The lack of communication must be so very scary and frustrating for you. Firstly I would try and make an appiontment with her Consultant so they can explain to you everything they have done and are doing so you have a better understanding. Especially bring up about how the constraints are irritating her and affecting her sleep. Sleep is so important for mending her brain. They cant always give you a time as everyones recovery is different. Write down all of your concerns and questions so you dont forget anything. As it is early days they are watching and waiting (their words) because the brain has to slowly repair and her body respond to her treatment. Your Mum seems to be doing well which is all very positive, that she can converse with you and move her appendages. From my own experience of recovery in hospital, i was in there for just over a month. My short term memory was dreadful, my husband had to repeat many times. I also dont remember lots that went on. I got confused. Hated any loud noises. Was very light sensitive, my Daughter got me some sunglasses which helped. I slept most of the time. So very reassured that my husband and family were there. I also had double vision and balance problems, which were scary. I would definitely try and sort her some glasses and see how she gets on. She may not want to be bothered about reading but to be able to see better may help. They may refer her to an eye specialist at a later date, they did for me. Your poor Mum bless her, will be trying to process whats happening and it is very normal to become aggitated. This will improve with time. Just be there for your Momma as you have been bless you, not an easy time for you. Remember to look after yourself too. Please keep us updated and let us know how you are both doing when you can, we are here for you, rant any time . Take care Tina
    2 points
  18. Hello @Esedlock, I'm glad you found this forum so quickly. My husband had an NASAH in May 2019. He was still in hospital at 3 weeks, he developed hydrocephalus and was very sick. When he returned home he was extremely frail for months. You are doing amazingly to be so active so soon. It sounds like you're really keen to know 'when' you will be recovered. From my observation and reading, everyone is super unique with that, and no one can actually give you a definitive answer, even Neurologists will give you a vague answer. Some people report ongoing improvements 12 years later. Some people, like my husband, experience relapses. He has been working too much lately and experienced a recurrence of the daily headaches, head pain on bending over, stabbing pain at the site of his SAH, and extreme fatigue. Like others, he exercises, is really fitness focussed, regularly cycles 60km, and runs 5 km, but brain work and concentration (he's a train driver) really wear him out in an entirely different way to being physically activel. I recall the advice to him in the early days was to drink plenty of water, to rest when his body and brain asked him too. However, sometimes when his brain is fatigued, a gentle cycle helps him to feel better. The biggest challenge for him is to not overdo things. like you, he wants to find his limits, and be at his best. Sometimes he overdoes things, and then he knows all about it. Time, patience, gentle perseverance and being willing to manage your expectations seem to be the key. Take care
    2 points
  19. Hi all! I am exactly two weeks from my PMH. I was released from the ICU after 12 days so I am trying to figure out how to recover. Prior to the PMH, I exercised 2+ hours a day (weights and cardio), did not drink/do drugs/smoke, and am a healthy weight. I am so fatigued but want to slowly work up to where I was. I walked a mile this morning and then my head hurt (whomp whomp) but it pretty much hurts every day as the blood is clearing from my brain. I have searched for resources and there are so few. Can I have caffeine? I have not had any but should I be afraid to? Can I get my heart rate up and if so, when? I see a neuro doc this week and he should have ideas. Would love any tips for recovery (multivitamin?) or resources. I am sure this is posted all the time so thank you to all who answer. It means a lot and I feel super isolated because PMHs are so rare.
    2 points
  20. Hi there try not to worry my 3 new ones haven't grown in 10 years they were noticed in 2011 I was told in 2020 they were there how considerate of the hospital for notifying me only took 9 years lol If mine haven't grown in 10 years I try not to think about them as I may get hit by a bus before any thing happens with them I know it's hard and it's not easy to come to terms with but keep trying hope you feel better about it all soon xxx
    2 points
  21. Dear Claudette, I am so sorry for this news. I am sorry it is you who has to bear yet another hardship during this difficult season of loss and family health crises. It is understandable that you are feeling depressed. And, we are always trying to protect our children. You did the right thing reaching out to BTG. It helps to put your thoughts and emotions down into words. We are here. We share your struggle and tears. How do any of us do it? It helps knowing others understand and care. I want you to know I care. Others here also will lift you up in their thoughts and prayers. For me, my faith carries me through times of uncertainty and keeps me from despair. It is an inner strength and resilience that comes just when we need it that keeps us pressing on and looking to the next day in a spirit of hope and determination. Keep the fight in you dear friend. I am hoping you’ll confide in someone there and begin to place yourself in a circle of supportive people that can offer you their presence and hugs. Seek professional counseling if you must ~ no shame in needing help to process all you have gone through these past few years. It is important to get the support you need and establish an environment of calm around you. Your mind and body need healing. Your feelings are normal. You feel sad because this is awful. You feel tired because this is exhausting. It is okay to be angry. Don’t shut down from people who might mean something to you or can actually help you. Today, I pray you are able to discover… to notice… to taste… to smell… the small joys and simple pleasures that make a life worth living. You are a blessing. You will journey through this next medical trial and we will walk it with you. Our suffering is part of our humanity ~ sometimes it just hurts. It is good to sit and walk together. Love, Kathleen (Colorado, USA).
    2 points
  22. Everyone is different.. their SAH or whatever is different - so I think we all just recover as and when, but 3wks is a very short time. As I've said slow and easy keep hydrated and rest lots even if you think you're ok ...'rest' I also think this 3 weeks or 3 months is just a base line they give us really.... take care and stay-safe.
    2 points
  23. I don't know who it was that told you you should be OK after a couple of weeks, but I have maybe heard of one person who had that kind of recovery, and I have read alot over the last few years so please don't feel there is anything unusual about not feeling recovered yet. I found a couple of really useful and reassuring documents on NHS sites but had to trawl through to find them. This one covers alot and gives a good outline. http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=53327&type=full&servicetype=Inline
    2 points
  24. Hi there early days are scarry but slow and easy does it... keep well hydrated and listen to your body.. take care.
    2 points
  25. Hi @Esedlock I haven't been on here in a while but like to check back in as I always remember how incredibly hard those first months were and people on this site gave me help and support when I needed it so would like to do the same for others. I definitely found the new normal extremely difficult to accept. I am someone who has always pushed myself, for me I have never managed to get back to exercising at the gym but I cycle and walk alot and do yoga as they don't trigger headaches. I think it is very important to listen to your body in the early stages. Everyone kept telling me it's early days but until you are through those first 6 months or a year it is hard to see that. Take one day at a time. Anxiety was and to be honest remains a huge part of my life post bleed. I have had therapy that made a big difference. Night times were definitely worse. Post bleed I started listened to apps such as Calm at night that help and also podcasts as a nice distraction. Perhaps they could help you. Anyway I hope you continue to recover and any questions feel free to ask on here or PM me. Take care Charlotte
    2 points
  26. You will see improvements but they may be slow. I think post bleed everyone has to find their new normal and often the hardest part is accepting what that is. For me it’s been a rocky road as I am so used to pushing myself. Realising that that isn’t my best path has been hard to accept and even more difficult to change. Enjoy those walks and let us know how it goes with your neuro doctor. clare xx
    2 points
  27. Clare, Thank you so much for your reply. I feel so alone in this because so few people actually go through it. I am having trouble telling if I am tired or fatigued or overreacting but I am just going to take it slow. The hardest part will be letting go and taking it day by day. I want to set goals, etc. but I have no idea how much time until I see (or even if I will see) improvements. I just want to feel normal but that seems like a ways off. I am going to try to walk every day and then start weights once I get the buy-in from my neuro. I think I might be like you - it’s not the physical but the mental that really exhausts me. e
    2 points
  28. Hi Ericp Reading your post reminded me of numbness and pain in the lower spine l suffered it used to drive me crazy. My son got me a little vibrating cushion that seemed to ease it a bit. I was in hospital for three weeks and it took about three weeks after that to clear up. Take it easy and don’t try to rush things.
    2 points
  29. Hi there Warm welcome glad that you found us. I went deaf in one side when I was sent home, turned out to be the Iodine had hardened in my ear.... and got disslodged by the movement in the car on the way home...
    2 points
  30. Hi and welcome. Sorry to learn about someone so young having post SAH issues. My sah was in late 2018 so now almost three years in, I'm (considerably....)older than you but have similar hearing issues. It's a bit more complicated in my case as I needed a programmable VP shunt implanted in the skull behind my left ear and current UK advise seems to be to avoid anything with even a small magnetic field being in contact. This means that most hearing aids are to be avoided too. I've found that my underwater moments like Jess happen when the air pressure is low. I keep an informal watch on barometric pressure now and have noticed that I struggle more when the air pressure drops so enjoy my music more when it's fine but that's probably more to do with listening to Bob Marley in the sunshine.... Hope it all works out for you.
    2 points
  31. I am about 3 yrs out and really get that "exhaustion" thing too. I really need to nap each day. It is tough to fit in with work, etc. My exwife didn't understand why I was sleeping. My new girlfriend understands fortunately. Your brain gets into a fog. I have started to do the following. First, the brain only uses simple sugars for energy, nothing else. It wont use carbs or fat. So what I do is the following: I never ever drink any soda at all. Then, on a day I am doing a long work thing, I bring a 2 liter of mountain dew. It is loaded with sugar and caffeine. Also, because I never drink it until a work day it has more of an effect. I work around 3 days a week. I had a day a month ago when I was driving a long distance (4 hrs) and I literally stopped and bought a hotel room for a nap. It felt ridiculous paying 60 bucks just for a nap, but I knew if I kept driving , I would wreck. The brain sometimes gets in a fog. Oh well. Thanks for your story and I hope you feel better.
    2 points
  32. Hello Pat and also thank you for looking in to update us, on your 5th anniversary. So glad that everything has worked out well for you on the job front. You are obviously delighted with the outcome. Take care and wishing you good resolve to keep dealing with life post SAH and it's challenges. 😊 Subs
    1 point
  33. Hi Pat, Such a wonderful post you wrote. So happy for your 5th anniversary, I think it is a hallmark one as well Your post speaks to the joy of life I think. Change and opportunities make our lives rich and full...Sending you most sincere Congrats and wishes to continue with a life that is being well lived xx Jean
    1 point
  34. Hello and also a warm welcome to BTG. Also so sorry to hear about your momma. We totally understand the stress and anxieties your are going through, and the feeling of helplessness at the lack of information you are receiving. Tina is right to say it is early days. At this point it can be difficult to accept information is not forthcoming, however she is in the hands of a highly specialised team and even they don't have all the answers at this point. As Tina advises, do ask to see the consultant to ask for help in understanding their assessment of your momma at this point. Try and accept that with brain damage, many answers about short and long term complications may not become apparent for several weeks and months down the line. Their immediate consideration is to stabilise your momma and carry out the coiling or clipping when appropriate. This can take days or maybe weeks but they are there to make the right decisions at the right time. You mention contact lenses😊, I smile because with Mrs Sub's it was her two miniature hearing aids! For these support nurses, finding them and refreshing the batteries were definitely low on their list of priorities as they gave their specialist care to my wife 3 days post bleed and in an induced coma. Your momma has survived so far and that is great news. The survival rates for SAH are not good reading. Not easy for close relatives like yourself to accept when you try hard to come to terms with a haemorrhage diagnosis that you know very little about. Your knowledge will improve very rapidly, and that is where the BTG members become extremely valuable friends. This site contains so many personal accounts of relatives and survivors that have 'been there' in these early days of confusion, and now with years behind them they can help support you and momma in the days ahead. It is so important that you look after yourself too amid this anxious time. Eat and rest well so you can give her your best support. Take care and our thoughts are with you as momma begins her recovery. Subs
    1 point
  35. @Susan c my husband had a NASAH 2.5 years ago. I can relate to some of what you have said, an increase in rigid behaviour or thinking that can drive me a bit bonkers sometimes. Our lives, especially at home, are made up of a myriad of small things, so when something gets on our nerves, it can change how we feel about life at home. And yes, working from home has meant we have seen a lot more of each other. I have also had a sick 15 yo at home for 9 months, and I work from home, so having the house to myself is so super rare. I agree with Tina, you have both been through an immense trauma, and while survival and 'signs of life' as I put it are still amazing, we are human, and imperfect. Sometimes things annoy us, but it doesn't mean we don't love our partner or that we aren't super grateful to still have them here. Here's a few of my observations, partly personal as a partner of a NASAH survivor, partly professional as a person with expertise and experience in supporting people with disability: - survivors of SAH have experienced some damage to their brains. This doesn't mean they have lost intelligence or cognition, but that their cognition may be changed, slowed, sometimes get a bit clogged up, and tasks that they used to do without thought now take active concentration at every step, which is exhausting for them. So some rigidity around routines/not being interrupted during a routine etc, are their way of coping and still being able to be as independent as possible. Adults all need to feel capable and competent, and people with brain injury are often very aware that their brains once worked differently, and there is certainly some self protecting behaviours (pretending or denying there is a change), some anxiety ,and some grief about that. As partners, we also grieve the loss of the capacity that our partner once had. This is normal, it happens a lot, and it is ok to feel these big and conflicting emotions. Being able to name it and talk about it might be helpful, but as you say, it might be better for you to have this conversation with a counsellor. Your husband may or may not have a need to talk about it. My husband and I talk about it quite a lot, especially when it is really getting him down. Being understood, and being reassured that what he is experiencing is a real thing helps him to cope. - The fatigue your husband experiences is huge, it never goes away, and it has a real impact on his lifestyle (and yours). I know that if I want to go somewhere that is noisy, or busy, that my husband probably will not enjoy that at all . He gets overwhelmed and can't cope. It's like torture for him, so I either go alone, or find a friend who enjoys those environments. My husband joined a small cycling group after his SAH as a part of his recovery, and it has always been his 'thing', his social time, his group of friends. I fully support this, because I knew that he had to have some independence from relying on me (and I needed to not be relied on always too). Having said that, I do provide a lot of emotional support and reassurance to my husband - again, the brain injury affects his ability to regulate his emotions, he cries easily, feels things deeply. He is very optimistic and joyful, but also very easily affected if he sees others in distress/hears distressing stories. So he limits his exposure to that content/those stories. His sense of humour, enormous intellect and beautiful character traits are all still the same. Sometimes I find his neurotic behaviours are a bit more concentrated than before the SAH (we all have neurotic behaviours), I try to tell myself it's 'signs of life' at those times if I feel irritated, which was our joke in hospital when he had to deal with yucky body functions - I'll say no more. Your comment that your husband says you are yelling at him really caught my attention, my husband says the same to me when I am not yelling at all. I do have a naturally strong voice, but he tells me I'm yelling or raising my voice when I'm not sometimes. It has puzzled and annoyed me, but your response and Tina's has helped me to understand that better, thank you. Please don't feel bad or guilty at all that you have reached out for support. We all have a different comfort level with being vulnerable, and saying things 'how they are'. But it is really important that we can be real about what life is like for us, it is how we cope and can find a pathway through. I hope you get the support you need for you. No person needs to be an island, or cope in isolation. You are not being disloyal to your husband to seek support to understand his needs and behaviours better so that you can continue to be the amazing support you have been. I hope your holiday is a beautiful time together. V
    1 point
  36. @debbieg you've had such a journey to finally getting some answers. It sounds like you're finally getting the treatment you need. I hope you start to feel an improvement soon. I live with several auto immune conditions, some of which are quite benign, such as vitiligo, but what I've learnt over the years is that being vigilant about keeping a healthy balance in life, getting good quality and regular sleep, regular exercise, and healthy nutrition, plus drinking water, has all helped to keep me on an even keel. You've had so much to deal with, on top of surviving an SAH and a long hospitalisation. I hope life is kinder to you.
    1 point
  37. Dear Claudette, I am so very sorry you are having to go through all this again. Bless your heart, not surprised you are feeling so down, you have been through so much and a huge shock for you. Sending you big hugs xx Hopefully, when you have your appointment with the Consultant and things are clearer for the way forward, you will be able to get your head round what is planned and then can sit down and tell your children. You will need the support from your family and friends and they would want to be there for you. Sending loads of positive thoughts your way. We are always here for you xx Let us know how you are doing. Take care Love Tina xx
    1 point
  38. Hi Esedlock Guidance on the gov.uk site with regard to non-aneurysmal SAH and driving is: ✘- Must not drive and must notify DVLA. Driving may resume on clinical confirmation of recovery and, if no other cause has been identified, documented normal cerebrovascular imaging. As you say you are due a follow up very soon, your consultant should tell you then if you can drive. Once you have clinical confirmation the DVLA should allow you to drive whilst they complete their own formal investigations. Yes it is very common to have a great day and then sleep almost all the next day, especially so early on in recovery. Take care Susie Xx
    1 point
  39. Wasn't told to avoid by my consultant and only avoided it for the first few months after my SAH - I drink about 6 cups of coffee a day and haven't had any adverse reactions. It is supposed to raise blood pressure though, so a good idea to check with your specialist for their opinion. Also, it may cause headaches - try a good quality decaf tea; you can barely tell the difference if you buy Yorkshire Tea (other teas are available )
    1 point
  40. You are really early days, at your stage I was still in hospital- I did have the added complication of Hydrocephalus. We are unable to give medical advice but the symptoms you describe seem similar to most who have had a SAH. I never felt anxious at night particularly though there are others that did. Write all your questions down and make sure you ask them at your Neuro appointment. What you describe appears normal so try not to stress, it will only make things worse. Clare xx
    1 point
  41. Hi Ericp A very warm welcome to BTG I suffered with hearing loss in my right ear. It was like i was underwater like Jess and Digglydog and was very painful and drove me mad. I had my ear checked and because of my craniotomy surgery it was blocked wth gunge from surgery. I had it suctioned out which sorted that. I found afterwards i was very noise sensitive and would suddenly a hear loud noise that would make me jump. It did improve over time. I also had back pain and was told like you it was the blood dissipating down my spinal cord. It did subside eventually. It is very early days for you in your recovery. As Compostc has said be kind to yourself and dont rush things. Wishing you well with your recovery and we look forward to hearing how your are doing. Take care Tina
    1 point
  42. Hi there welcome to btg sorry you need to be here xxx Hearing loss I have had problems with my ears since the sah in 2002 I describe it as its as if I have suddenly gone under water that's what it sounds like I get tinnitus daily to some degree drs were telling me my ears were fine but after a swab it turned out I actually had an infection (for 18 months everyday I was taking antibiotics with a couple of days break between courses and with regular swabs just wouldn't go) xxx Pain in base of spine I still get that but that is due to osteoarthritis and fibromyalgia which I have been diagnosed with both yours is probably from the blood as it takes a while to absorb hopefully it will go soon xxx
    1 point
  43. I just wanted to post this and share with the forum. I am 9 years on from my SAH with no evidence except from lumbar puncture. Did the 28 days hospital and released to absolutely nothing and have struggled ever since. Many odd symptoms but this constant exhaustion was seems to be a thread running through many SAH survivors. I still have to rest for several hours a day and nap for an hour. My lunch break is about two to three hours. Then by 7pm I've had it again. I can't even go out for the day as I get tired after a few hours and if I don't sleep I get dizzy and faint. Anyway for years I felt my body was fighting something rather than just getting over SAH being the whole explanation. It's taken years, tests by different specialists all coming up negative and I'd just about given up hope and just accepting my situation of what feels like an 80 year old or more. I'm now 51 and managed to find the right route to go down and have just been diagnosed with Lupus and Sjogrens Syndrome autoimmune conditions (scared and relieved about it). It was sudden very dry constantly runny eyes that got me down the right path. I'd had a very dry mouth since the SAH and an unquenchable thirst most of the time, sensitivity to light and rash when I go in the sun but no one picked those symptoms up. I don't know if the SAH sparked everything off and the menopause has exacerbated things but I wanted to put it out there that the exhaustion some may feel may point to another underlying condition which the after effects of SAH has hidden. I have medication which will helpfully ease the tiredness and a bag of other meds now to take! But I am extremely pleased that I didn't give up when GPs have written me off as a hypochondriac or just put everything down to SAH. It is becoming more known that body trauma can kick start autoimmune conditions and if you feel something isn't right don't give up. Hopefully any others who feel like me won't have to search for years to get answers. Just because you have had one rare condition doesn't mean you can't have another.
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  44. I hope all is going well with you. Sounds like you had a large one and a rough ride.
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  45. Brenda, I am so sorry that your husband has had another stroke and you are both apart at this time. I imagine seeing him was a relief in one way but hard as well with the enforced restrictions making visiting difficulty but yes I hope he will Be able to come closer to you and home and get some rehab help. i hope he is receiving good care and was able to talk to you but one day at a time is probably very sensible. be kind to yourself and do ask family or friends for help or just to talk if you need support. That’s ok. And if you are worried or just want to vent feel free to come here. Someone will listen. Take care, go gently. ANd look after yourself, eat well and rest too. That’s important so you have strength in all this.
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  46. Hello Brenda Welcome to BTG, I'm also very glad you found the forum. This forum has been a haven of compassion and understanding for me, and eventually my husband. My husband had a non aneurysm SAH in May 2019, and then developed hydrocephalus and required a brain drain as we called it. He spent 3 weeks in neuro ICU before going onto the ward for a few days and then being flown back to our small country town. He didn't require rehab, but endured ongoing and debilitating headaches for a very long time and fatigued very quickly. He feels things emotionally much more, or is less patient at times than he used to be. I have noticed his short term memory has improved over time. Injury to the brain takes an incredibly long time to repair. Our brains are 'plastic' and have the ability to continue to heal, or to find new ways of connecting, throughout our lives. Sometimes, the thing that unlocks our recovery can be very curious. For example, I worked with a man who had a brain injury, I met him many years after he had left hospital and completed rehabilitation. His mother told me that when he had completed rehab, he still had limited speech, and often would get frustrated at not being able to find the word he wanted to express himself. He started seeing an occupational therapist, who realised that during rehab he had learnt to walk again, but had not learnt to crawl. So she taught him to crawl, like a baby. He couldn't do it, but when he did finally learn, his language, speech and words began to return. When I met him many years later, his speech and language had completely returned. Having worked with people with a disability, including brain injury, for over 20 years, I had some expertise to help me to understand my husband's very slow recovery. It was a fine balance of doing for him what he needed me to do, while also setting up situations in which I would leave him to do for himself, to build his confidence. It has taken enormous patience from both of us. We have been extremely fortunate to have a good quality handful of friends and family who supported us emotionally and practically. Many people gave a hand, dropped off meals, helped care for our teenage boys, chopped firewood, helped in small and meaningful ways, or just listened and came for a cup of tea. But their lives continued on and sometimes they stopped coming or checking in, because my husband's progress was very slow. I did notice that many friends or colleagues stayed away, fearful that the person they had known would be unrecognisable to them, that they would feel embarrassed by his condition. This is human nature, people fear what they cannot understand. There were months where I felt incredibly alone and lonely. But this forum helped me through, I hope it helps you too. People can not 'see' the impact of a brain injury, it is an invisible disability. Therefore, it is often misunderstood. I know that my love, care and constant reassurance and belief in my husband has helped his healing journey. I remain so incredibly grateful to have him here. I faced the very real possibility of saying goodbye forever, and there were days when my wish for him to live seemed cruel to him. I'm not sure there's a 'right' way to go about things. We do the best we can, with what we have. Thinking of you and I hope your husband is making progress. Veronica
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  47. Hi Brenda, So happy you found this site...I know when I found it for the first time I felt like I had found my people, people who understood my journey. Brenda, my husband and I have talked at length about what happened to me, nearly 3 years ago, and also what happened to him. I am sure he would agree he felt like the ground was moving....I didn't realize how it was impacting him until I had improved a bit myself. Having an injury to your brain is not like any illness I have ever experienced. It felt like it interrupted all my efforts to resume my old life. I couldn't figure out how to use my cell phone, couldn't remember if I had talked to someone that day or two days ago...everything felt a bit like a scrambled egg... And there stood my husband, love of my life, trying to understand it all, visiting me everyday and when I came home trying to get me to all appointments and make sure I didn't fall or forget my pills...I am sad to say it took me a while to feel his pain going through this... It is a slow process, the brain healing, and as said above something that is not measured in days or even weeks...more something that you look back on and think..oh yes he/she has gotten better since then...our brains are amazing though and will work hard to heal... I wish you both well , you are lucky to have each other... Jean
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