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Showing content with the highest reputation on 13/07/20 in all areas

  1. 2 points
    Hi All, I just found BTG. What a great chat room! Thank you everyone for sharing your experiences! I had my SAH on April 21, 2020 (4 days before my 42nd birthday). I am experiencing many of the same symptoms that are discussed here. Headaches, neck pain (occasionally), cloudy short-term memory, dizziness & head pain when bending over. I do notice great benefit from staying hydrated and taking frequent walks. My head definitely tells me when I have over done it! Ah, stress definitively revs up the headaches. I am really trying to focus on managing stress! I still have very intense headaches several times a week, nausea, and of course anxiousness that I could be having another SAH every time I have a head pain. Very glad to have found BTG, and the opportunity to talk with people that actually understand the SAH recovery challenges. All my best to each of you! Kyle
  2. 2 points
    Hello Dramblys Like you, I haven't been on BTG for a long time, and also saw Sarah's post about Win's passing. I am so very sad for her, and her family. Win was such a beacon of hope to so many, with her funny, gracious posts and her generous heart. She was one of the first to respond to my first post, and I will always be grateful to have known her through BTG. My husband had a non aneurysm SAH just over 12 months ago. Like your wife, he has made an amazing recovery. However, he has also endured the typical chronic headaches, and even though they have improved, they are ever present and get him down at times. He now runs over 15km a week, and cycles over 100km a week. Exercise has given him meaning and direction each day. We still don't know if he will be able to handle the demands of returning to his job as a coal train driver, we will find out soon. I have gone from working 2 days a week to now working full time to alleviate any pressure on him to feel he has to work. He now focuses on providing more support to our two teenaged sons so I can work. Brain injury is an invisible disability. Our loved ones endure a silent and hidden experience, and the changes to their brain function and behaviour can be finely calibrated, hard to detect in a shorter social conversation, but more obvious over a longer period of time, such as living together. As partners, we do tend to be the people that continue to understand the experience of the survivor, as other people move on and forget. It's great that you're seeking support on BTG with people who understand what you and your wife are experiencing. I'm not sure what to say that will be helpful to you. I am in agreement with your wife though, I really don't like to have difficult conversations after dinner, as they also tend to unravel me, impact my sleep, and carry over to the next day if we can't resolve them. Us ladies can be a bit complex!! And yes, what you thought was a simple conversation can be more complicated than you expected, I agree. I wonder if writing down a summary of the conversation you want to have, and leaving it in an in-house 'mail box' that she can check when she feels ready to cope with the content would be helpful? That way, she can control when she wants to deal with it, and choose a time she feels able to follow through the process. Of course, any in-house mail would have to be balanced with love notes or other positive stories, such as memories of pleasant experiences you have had together, holidays you went on etc. Otherwise, it would just become 'difficult' mail and she won't want to read it, who would?. It's just an idea, see what you think. I do wonder if giving her control about when to have discussions will reduce a 'reactive' response and give her time to prepare? I agree with the advice Win gave you previously, our loved ones who have survived SAH feel things so deeply; they have met death and survived, life is so fragile, and they know their own impermanence. In that regard, my husband gave up caring about or responding to things that previously would have bothered or irritated him. He just became very zen, and wanted to focus on being in the moment, and letting go of judgement, grudges, differences of opinion. He doesn't tolerate people who are self involved and neurotic at all, he never really did, but now he just doesn't want to have anything to do with them. He's quite blunt about it, I understand as it is self protective. I guess in regards to Win's advice, finding friends or family, or a paid professional, who can provide some of the listening and emotional support you are seeking is really helpful. It is natural, normal, and necessary for us to need to be able to express our own pain or doubt, or to be really heard by others. Our loved ones who have survived SAH just can't handle things the way they used to. There will be times, like you have noticed, that their perceptiveness and insight will touch you. But I think they have more to deal with than us, they are living inside their bodies with their brain injury that still lingers and reminds them daily of nearly dying. So we need to alleviate them of some of our expectations and needs. Unfortunately, it does change the relationship dynamic, but no one is unchanged after what they and we have been through. Change is inevitable. There is grief, sadness, sorrow in what has been lost for both of us, and life goes on. Finding ways we can connect, that bring joy, tenderness, and celebration of being alive together, is maybe what we should focus on? And deciding to change our expectations of the relationship, being kind to ourself, and kind to our partner? What do you think? Veronica
  3. 1 point
    Hi Kyle, welcome to BTG and thanks for recounting your story. I too had an NASAH with hydrocephalus as an added complication. Made it out of hospital after just over 2 weeks but I was lucky that it was not during Covid and my family were able to visit the whole time. However my friends husband had what sounds like a very similar experience to you and he spent 3 weeks with no visitors. He appears to be making a great recovery. Must have been very worrying for your family and lonely for you. Mind you if you were anything like me you probably didn't notice much of what was going on - I was asleep most of the time! Glad to hear you are making a good recovery with just a few blips. This is to be expected and will be made worse if you do too much. I think the problem is that as you feel better you do more which can then lead to being exhausted. Best advice I can give you is take everything slowly and leave plenty of time for rest periods. My bleed was over 5 years ago and even now if I push too hard I know about it. Take it easy, be kind to yourself, hope your recovery continues well. Clare xx
  4. 1 point
    Hi Kyle, Welcome to BTG...so happpy you found this site...I felt so thankful to find them after my own SAH and vasospasm...You sound like you are making good progress, you are still in the early days of recovery...I know this is unlike any other illness I have had, thinking that when you have some good days you are getting past it...I have found it to be slow...steady, but slow... Sometimes I see the best progress when I look back...I too had a small SAH and a severe vasospasm. The vasospasm was the worst of my event, sending me back to the hospital, intensive care and rehab....for weeks I thought I had another SAH...everything took time to sort out for me...I am 3 years 2 months post and much better, improvement each year and I am a good deal older than you, 64 when I had mine... Kyle, your story struck me with your feeling isolated when you had your event...so very frightening, so happy your family was there when you got to the top of the stairs... The Covid situation is making it all so much harder for everyone entering the hospital. I work at a hospital, retiring soon, and it makes us so sad our patients can't have their loved ones with them.. We have loosed it a bit but it is still no where near what it was as we welcomed family members... My thoughts and prayers to you and yours as you continue ... xx Jean
  5. 1 point
    Thanks for the responses and the support. To give more context about my particular SAH here are the finer details: As a result of COVID-19, I found myself working from home while my two school aged sons were at home trying to home school (7 year old and 10 year old). I was wrapping up a teleconference for work, when suddenly my neck became very stiff and it felt like I got hit in the back of the head with a hammer. I lost my hearing momentarily. I made it about 4 steps and fell to my knee. I then realized I was in serious trouble. As a result of l being on a teleconference, I had locked the door that led to my basement where I was, in an effort to keep me sons from disturbing my call. I realized no one was going to know what was going on, and I needed help. I made it to the flight of stairs and crawled up 15 stairs and unlocked the door, and saw my wife and two sons standing there. I never once thought about calling for help on my telephone from downstairs. When I saw my sons faces, I knew I couldn’t let them see me like this, so I told my wife to call the ambulance and I crawled up another flight of steps to my bedroom. By this time, I was soaked in sweat and and in a ton of pain. The paramedics arrived and quickly took me to the hospital, despite all my vitals being relatively normal. Once I was in the Emergency Room they quickly did a CT scan and saw the blood on my brain. Because of the immense pain, they gave me morphine through an IV, but it did not offer any relief. The decision was made to transfer me to another hospital that specializes in brain trauma/strokes. Once I arrived at the new hospital, I was placed in Intensive Care for the next 9 days. As a side note, that I later found out, I was the only non-COVID-19 patient on that entire floor and in ICU. However, I was blessed to make it out of my 9 day stay without getting COVID. The neurosurgeon advised me that I would normally stay in the hospital a bit longer, but he wanted me to go home before I caught COVID. My pain had to be controlled with Fentanyl while in the hospital, since the morphine did nothing for the pain. After 5 days, I was able to control pain through non-IV meds (no more Fentanyl). I did experience mild vasospasims on days 5 through 8, but again they were controlled through medication. After, all the testing, my final diagnosis was a NASAH. I am very fortunate on all accounts! From being able to get help, to not getting COVID, to having a NASAH that didn’t require coiling or a clip. I would say that the most frustrating aspect on my road to recovery is that once I have a few good days and think I am all better, I have a really rough day (bad headaches). It looks like from other’s experience, this is a fairly common struggle. I will also add, that in these very unusual and challenging times. COVID has definitely thrown a curveball to anyone that has recently gone through any type of SAH. From no family being able to visit in the hospital, to virtual doctor appointments and everything in between. I am just very blessed to have found this site and hopefully my experiences can provide some reassurance to someone that may have just experienced a SAH during these unique times. I am blessed in so many ways and do have a whole new appreciate for life! Tomorrow is definitely not promised, so make the most of today! Thanks for all your support! Kyle
  6. 1 point
    Hi Kyle Welcome to BTG - yes, everything you describe is very common after SAH and, for some, does get better with time. Let us know more about yourself and the circumstances of your SAH - it's not just that we're nosy it helps us get an overall picture of you and your recovery - and helps newbies when they join to relate their circumstances and recovery.
  7. 1 point
    Thank you for this info, Jess. Since you've been dealing with it for 18 years, that helps relieve some of my anxiety. Thanks to your advice and that of another poster, I'm going to step up water drinking, rest more, and focus on blessings! Thanks for sharing your thoughts and the family photo - VERY encouraging. Best of luck to you all!
  8. 1 point
    I still get a feeling in my head like it's full a balloon or something being blown up 18 years later but check with your dr dont worry and drink plenty of water and rest xxx
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