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V.Mama

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About V.Mama

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  1. 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
  2. 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
  3. 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?
  4. 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
  5. 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
  6. 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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