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V.Mama

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  1. Hello My husband had his SAH is May 2019. Like you, this site has been my lifeline to support and information. As you have probably found, when neurosurgeons declare your loved one 'fine' it does not mean everything is good. In my view, it just means that he/she survived the bleed and is walking and talking, so their job is done. My husband still has a headache, he describes it as being 'in the background' and sometimes his head feels woolly as he calls it. He can't bend down , sneeze or squat without his headache worsening. He takes panadol and rests if the pain gets too much. If he has a particularly busy or active day he suffers the next day, and feels like his head is spinning, his headaches are worse, and he is fatigued. Regarding the sudden headache in a hot shower, my husband has not reported a problem like this. As others mentioned, there is merit in asking your wife's neurologist for an opinion, given it was a change in symptoms at 7 months. We have watched our loved ones endure the most horrendous pain and suffering, and survive, it does shake us up when our loved one experiences a worsening of symptoms, especially when it mimics the initial onset of the SAH. I hope you and your wife get some answers to ease your minds. Veronica
  2. Hello Bev75 I have been reading through this thread. You have been through such an incredibly difficult time. I really feel for you. You've been dealing with different complications and setbacks. It's understandable that trying to return to work under the circumstances has been such a challenge for you. My husband had NASAH in May 2019. He's making a good recovery, but of course like everyone he still struggles with different side effects, and it gets him down. He doesn't know what his new 'normal' is yet. Chronic pain is very draining physically, psychologically and emotionally. I hope you are able to take very gentle care of yourself as you work through your diagnosis journey? And I hope you have people around you who you can talk to and who understand that while you survived the SAH and meningitis, the struggle continues. You mentioned your cat, Mac? I hope Mac continues to be a comfort to you. I am a cat lover too and find their company very easy and reassuring (most of the time, I have a 9 month old kitten rescue who is very big and wrestles with my older and much smaller rescue cat, he drives us a bit nuts when he's not being super cute and cuddly). It sounds like you are doing what you need to as you work through the diagnosis journey? Prioritising what you think is most pressing. My Aunty had fibromyalgia for many years, it is a very painful and often misunderstood condition. I work with people who experience sensory overload, and yes a weighted blanket may bring you comfort and help to settle you to sleep better. Let us know if it makes a difference for you. Thinking of you and keep talking to us on BTG. Veronica
  3. Hello Von I hope you find comfort and support on this site. My husband had a non aneurysm sub arachnoid haemorrhage in May 2019. People also say to him 'you look great, you look like you'. Which is a bit of a weird thing to say, they obviously expected to be able to see that his brain is injured, but of course brain injury is a hidden condition. He still has a large dent in the front of his head where he had a drain inserted for 2 weeks after he got hydrocephalus. I joke that he should get a tattoo of my thumb print on it. Everyone's situation is different, different countries have different supports available and I'm not sure how you can navigate the supports in your local area, but maybe some members on BTG will be able to guide you? I'm in Australia, if that is helpful. I wonder if there are any other supports available that might help you to regain your confidence in navigating around your neighbourhood and on public transport? My mother in law had a stroke that resulted in the loss of the left side of her vision, and she was eligible for specialist support and resources from Vision Australia. Support included relearning to navigate and feel confident outdoors and in her home, so I wonder if something like that might be available to you? I'm hoping you can receive some support to regain that which you have lost. It is a slow journey, be gentle with yourself and your expectations. All good things for you Veronica
  4. Hello Sallios My husband had a NASAH in May 2019. It took both of us a long time to feel confident to be apart, I barely left his side the first 20 days after his bleed, and I didn't return to work for 2 days a week until 2 months after his bleed. Recovering from a brain injury is incredibly slow, others can't see what is happening inside your head. So take it very easy, stay in contact with these amazing and wonderful people on BTG who helped us through. You are making great progress, but please also allow yourself to not always go ahead, some days might be a step back, and sometimes it might feel like you're not making gains. But you are still here and writing to us so you are doing amazingly!!! All the best Veronica
  5. Wow, that's amazing Ami!! I wouldn't consider running a marathon and I haven't had a NASAH! I'm very impressed and so pleased for you at this achievement. There's nothing quite like proving others wrong, is there? Veronica
  6. My husband, like you Ben, was a healthy person when he had his NASAH in May (non smoker, walks and cycles, very healthy diet). He doesn't have any deficits, and has been told he will make a 'full recovery'. He has been impatient to get back to his walking and cycling, but his body has told him when he's reached his limit. He has been on 20 km road rides and did a 15km bush walk two weeks ago, but that's over 3 months after his bleed. If he overdoes things, he tends to feel it in the days following (increased headaches, fatigue, his head feels woolly and thick), not on the day, so building up slowly and listening to your body and brain in the days after will help you find your limit. Like everyone says, stay hydrated. Our boys enjoy mountain bike riding, I used to but I'm not as brave as I once was. We returned from a mountain bike holiday in Derby, Tasmania, just before my husband's NASAH. Where are you headed on your long awaited trip? All the best with your recovery, it really is a long road, and our bodies and brains are amazing in their ability to keep on healing. Veronica
  7. Hello Ruth B My husband had a non aneurysm sub arachnoid haemorrhage on 20th May 2019. He got hydrocephalus on day 3, had a drain put in day 3 until day 16, then a couple of days on the ward, transferred to our local hospital, then home 19 days after NASAH. It seems so simple to write now, but it was living hell at the time for him. I felt like I literally held his hand and kept him from floating away all those weeks, his grip on life was so tenuous. He is making a very good recovery, he has been told he will make a 'full recovery'. He is returning to Sydney to see his neurologist and have a MRI next week, for his first check up since he came home. Hopefully he will be permitted to drive again as his neurologist told him he couldn't until reviewed. He was told when he left hospital that he has no deficits, however I notice little differences, but nothing major. Like you, they are hard for me to put my finger on. Probably a little bit more forgetful, but it doesn't impact negatively on his functioning. He has some down days, which is to be expected given what he has survived. He get fatigued the next day if he pushes too hard, does too much, thinks too much, or socialises a lot. His headaches are a lot better, but I notice again if he overdoes things he gets more headaches. We are incredibly grateful to be together, and each day is a blessing and a gift for us. We realise that time is so precious. I'm glad you've found this forum, it's been a huge help to us and I'm sure it will be for you too. All good things for you Veronica
  8. Hello William It sounds like you are having a very rough time. I hope you find the right specialist to give you some answers, and yes, like Macca says, it needs to be someone with specialist Neurology training. Keep going until you get what you need. May I ask, what country are you in? Veronica
  9. I feel for you Greasly 23 My husband survived an SAH in May 2019, and although his recovery has been amazing, I know that he has to work hard each day to be here and to get used to his new self. All I can say is that Skippy and Macca and all of the other amazing and loving people on Behind The Gray have helped us both through, and continue to help us through. My husband and I are both just so incredibly grateful to have more time together, each day we celebrate being here together. But life gets in the way sometimes, meals need cooking, dishes need doing, there's mundane ordinary stuff. And it can get on top of us, and feel like a burden. I guess one of the ways I look at it is, "what can I control? What do I have a choice in?" Because you don't have a choice about recovering from a SAH, and how slow the brain is to heal and rewire itself, and the other side effects from pain and medication. But there may be things that you can control, that will help you to feel a bit better? I'm really pleased you can reach out for help and support on here, and please understand that even though you may not feel like you're very good company at the moment, your family and friends will still want to be with you. I'm sure they're incredibly grateful to still have you with them. xx Veronica
  10. Hello Katow My husband has NASAH on 20th May this year, he's a healthy, fit 57yo. I did a lot of research, and read medical journal articles in the weeks after his haemorrhage. It is confounding that something so life threatening can occur to a health focussed and fit person. The truth is, it can happen to anyone, of any age, and for reasons that cannot be explained (I witnessed people of all ages in the Neurology ICU with my husband, he was too sick to observe what happened for those people, I watched as people fought for their lives, and others lost their lives, all happening around him). Having something so life threatening occur is in itself enough to trigger anxiety and panic disorder in the best of us, if you had any pre-existing anxiety, it's not surprising that you could now find yourself struggling, especially so soon after the SAH. What I found is that the medical help kept my husband alive and aided his recovery, but once the medical crisis had passed their job was done, and no further support was forthcoming. I agree with others that counselling and mental health support are also a big part of the recovery. We know that life has changed, we are incredibly glad to have my husband still with us and because he was so healthy when the NASAH happened, his prognosis for a 'full recovery' is very good. We don't know if he will return to his job as a locomotive driver, but we know there are more important things in life. As I said to him, we can't go back , we can only go forward. Having a health crisis like NASAH is confusing and very distressing, but it clarifies what is important in life, and what the priorities are. I wish you all the best for your recovery. The stories and support I have received on this site has been incredible and a huge part of me coping and helping my husband cope. I hope you will continue to find comfort and support here, you are among friends and fellow survivors. Veronica
  11. I thought I'd give you all an update on my hubby. Reading back through this conversation thread has shown me just how far he has come. I cannot thank you all enough for sharing your knowledge and stories. I felt so alone when we left hospital, I wasn't alone socially, but I was alone in terms of people who had experienced SAH and what it was like to witness it as a partner. You have also helped my husband and given him hope. At first he couldn't cope with hearing other people's stories, then he started asking me 'do other people get this sensation, is it normal'? so I would tell him what others on Behind the Gray have written about their journey. Hubby's head pain has reduced a lot, he still has almost constant pain, but it is manageable, and not so debilitating. He still can't bend over or move suddenly, but he knows that now. He says his brain feels woolly, he finds it very difficult to describe the sensation. He fatigues if he does too much, but it is the following day when his body really gives him the message. So he is learning from that and trying to figure out his own limits. I am back at work 2 days per week, so the first few days of work was a real test to see if he would behave himself. Of course he overdid things and was exhausted - but he is the one who suffers for it not me. We go for walks most days, it's good for both of us. His strength has improved enormously, he's doing so much better. He hopes to get his licence back in 6 weeks after he goes back to his Neurologist for a review, then he hopes to start thinking about working a few hours a week. He can't return to his usual job as a locomotive driver for at least 12 months, but at this stage, he's not sure if he will want to. There is time to figure these things out. kind regards Veronica - V.Mama
  12. Thank you everyone for your helpful suggestions. We tried elevating hubby on pillows, in different ways, he did find it helped. The headaches are easing a bit, they always start during the night and worsen by morning, then usually start to ease by 11 am once he has been upright and walking around (the Dr suggested it could be due to changes in intracranial pressure while he's lying down?). The other morning hubby gave himself a whopper of a headache when he bent over to pick something up. I don't think he'll be doing that in a hurry again. We have managed to start going on longer walks, he still feels weak from losing muscle strength while lying in his hospital bed for 16 days, but that can only improve with more walking. The hospital physiotherapist didn't prescribe any follow up treatment, he just told hubby to keep up the walking. Is this usual after a SAH? Mike157 he is starting to log his daily routines/activities to try to find any causal pattern of head pain, thanks for the suggestion. Fortunately our home and lifestyle is relatively low stress (aside from the NASAH of course, and raising two teenaged boys!!) and we practice mindfulness, so hubby doesn't feel that stress is a causal factor as such. We're also both very fortunate to have outstanding employers who have bent over backwards to be supportive, plus the support and love of a close and strong community. Two doctors have told him that 'anxiety' is causing his headaches, which neither of us feels is a fair assessment. Yes, nearly dying is anxiety provoking, but surely having one's brain squished by hydrocephalus after a brain bleed is sufficient to cause ongoing headaches? Am I wrong on that one?
  13. Thank you. It's such a rollercoaster, the aftermath of SAH. My husband has had a few good days, relatively low pain. But nights are dreadful for him. He gets restless legs, and head pain seems to start around 2-3 am every morning. Yesterday was really bad, the worst he's had since he left hospital. It shakes both of us up when it's that bad. Paracetamol does nothing to reduce the pain. Can any of you comment on whether you found anything that worked to reduce the pain? There doesn't seem to be any predicting it. He drinks lots of water, he always has, and even more so now. He probably drinks around 1.5-2 litres overnight. He has also found that when the pain gets bad at night he has to get up and walk around, as being upright seems to reduce the pain. From reading the forum posts it seems that ongoing head pain is a big feature of recovering from SAH, and as many write, everyone is different on how long it persists and how bad it continues to be. Thank you for your replies. It is so good to talk with others who understand the journey. x V
  14. Thank you all for your kind words of encouragement. I don't think I know how I feel yet. It's been 4 weeks tonight since our lives were turned upside down. Coming back to our home town has been a relief and very hard all at the same time. When we were in Neuro ICU, everyone there understood exactly what was happening. I didn't have to explain myself, and there was constant support. Now, I'm back to going to the shops, where everyone is going about their business, and I feel like an alien. If people ask me how I am I don't know how to answer, so I just say 'I'm ok thanks'. Our friends and family, and my husband's colleagues have continued to check in, to ask how we are. My husband is improving each day, but I know he will have good and bad days, and eventually people may stop checking in with us, get sick of the same answer. The crisis has passed, now it's back to 'normal', only there is no normal, everything has changed, and we can only go forward not back. I have worked for years supporting carers of children and adults with a disability, I've always thought I was compassionate and had insight to their experience, I realise now that one can't have true insight until one has lived that experience. Anyway, thank you so much for listening, and for caring. Your stories of your own experiences really have helped so very much, I'm sure you understand what it is like to converse with others who understand. V
  15. I am very grateful to have found this forum. The stories that so many survivors and carers have shared has educated me so much. I have worked with people with disability for 25 years, I had never heard of a sub arachnoid hemorrhage. My husband had a non aneurism sub arachnoid bleed on 20th May 2019. He knew immediately he needed emergency medical help. We live in western New South Wales, Australia, in a small country town. So many stars aligned that night: the one local ambulance was available and came immediately; the local GP at the hospital suspected the diagnosis quickly and hubby was transferred by ambulance to a bigger regional hospital 90 minutes away for a CT scan (no CT available locally after hours); the bleed was located on the CT and the diagnosis given but there was no MRI machine or specialist neurology care so plans were made to transfer him by the Royal Flying Doctors service to the Neurology ICU at Royal Prince Alfred Hospital in Sydney (600km away); I flew ahead to meet him there only to arrive in Sydney and receive a message from my husband that the doctor on day shift had cancelled the transfer and didn't see why my husband should require specialist Neurology ICU!!! The doctor didn't bother to call me himself. There ensued a very frantic (and tearful) 4 hours of phone calls to advocate to overturn the doctor's decision. I won, and my husband arrived within hours. He spent 16 days in Neurology ICU. Words cannot do justice to the surgeons and nurses who cared for him. Hubby had angiogram with CT twice (he reports the second was excruciatingly painful and traumatic), developed hydrocephalus day 3 and had MRI and emergency surgery to drain fluid (no permanent shunt though). He had Nomidipene for 23 days, Endone and paracetamol for pain, sodium, magnesium and potassium intravenous fluids, had a catheter for 24 days ..,... I can't remember everything now. Poor darling developed major complications with enlarged prostate and endured 2 attempts to remove and reinsert catheter (not related to NASAH, but poor timing!!). He spent 3 days on the ward and was flown back to our local hospital before coming home, then being readmitted because of fever and infection so had IV antibiotics. He's been home 5 days now. I know it is very early days for him, for us. So far he has retained full strength, speech, cognition and memory ( other than when hydrocephalus set in). He has good days that are relatively low pain, and days of high pain where he cant move or function. I am amazed and astonished at his strength, patience, and non complaining acceptance. We are a very close and loving couple, we will tackle what comes together. But oh my god, the suffering and cruelty of SAH is something unbelievable. Thanks for reading.
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