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About Dramblys

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    Chicago, US

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  1. Thank you Veronica and Macca. I like Veronica's idea of writing. In fact, before I was working from home due to COVID-19, we both did this a lot. I wake up much earlier than my wife, and would often leave notes for her to read after I was at work. Sometimes she'd write to me after I was in bed. And yes, a balance of love notes and serious communication is important.
  2. It's been about two years since I've been on the forum here., and 2-1/2 years since my wife had her SAH. If you read my previous posts, you'll see that she was generally very fortunate for her outcome. The visual disturbances I mentioned before are largely gone. The chronic headaches are still there but not as bad and being managed with medication. The doctors say she's essentially "healed". She's hardly missed a beat with her work as a songwriter and musician and gets into her home studio most days. But, she says she still feels changed. Yesterday, she said she was glad I understood this when others don't (most see her as "back to herself"). I wish I could always be sufficiently present and thoughtful, though. Lately I've been dealing with my own physical, mental, and emotional health concerns, and I've found that my expressions of my own pain, frustration, sadness, anxiety, etc. affect her more deeply than ever. On some occasions, when I brought up a concern late in the day, what might previously have been a brief conversation (hopefully ending in validation) has exploded into an argument and ruined her evening, her sleep, and her mood the next day, sometimes even causing her physical pain or memory lapses. I have been seeing a clinical psychologist for several months now for my own issues, and a lot of that work has been to become more open and effective in expression of my own "things", but it's hard to put that into practice when my wife (of 22 years) can't handle those expressions as well as she used to. To be fair though, she often pleasantly surprises me with her perception, compassion, and care at times when I'm feeling sure she's deeply disappointed in me and our relationship. Today, she asked me again to avoid any serious discussions at dinnertime or later. She's asked before, and I would love to honor this request, but I don't always know what will seem serious to her and what will not. Fortunately (or not), due to the coronavirus pandemic, I'm working from home and if I'm careful, I can try to get these things out of the way earlier than when I had to wait until after my commute home, when there was only a short window before dinner. Since it's been a while since my last visit, the first thing I saw when I arrived was the thread about Win's passing. I was glad to revisit Win's first advice to me, and I really need to take it to heart: "Do not let wife hear sad stories of doom and gloom. I cannot take sadness anymore !!"
  3. Sarah, I am so sorry for your loss. It's been about 2 years since I visited the forum, and then only for a short time in the early days of my wife's SAH recovery, but I immediately remembered your mother as soon as I read your message. She was among the first to reply to my posts each time, with compassion and humor. Just now, I looked back at her first reply to me and I saw a bit of advice I realize should have been more careful to follow all along: "Do not let wife hear sad stories of doom and gloom. I cannot take sadness anymore !!" Thank you Win.
  4. It is now nearly 7 months since my wife's aneurysmal SAH. For the history, please see my introductory post: She is still dealing with some headaches, difficulty sleeping, anxiety, memory difficulty, etc. but is generally improving gradually. The double vision (from cranial nerve VI palsy) has resolved. However, in the past month or so, there is a new issue that is affecting, among other things, her ability to read. Certain visual patterns are making her feel disturbed or fearful. Hopefully I'm explaining well enough in these examples: Seeing text at a small size (as in a newspaper) is repellent to her, reminding her of insects. (She is able to read on her Kindle with larger size text). She recently purchased some new mascara, and was repulsed by the appearance of the brush applicator (it reminded her of a centipede). While working in the garden, She saw the rows of spores on the underside of a fern leaf, and was so bothered by the appearance, she asked me to prune off all the fronds that had visible spores. Afterward, she is still disturbed by the appearance of the ferns in general, but is aware that it doesn't make sense. (If you have never seen fern spores, they looked something like this: https://commons.wikimedia.org/wiki/File:Fern_with_spores.JPG ) On the worst days, she says everything just "looks ugly" to her. The issue reading printed text has been especially difficult as my mother-in-law passed away in late March, and my wife is executor of the estate. This would be a difficult task for anyone, so of course it's more difficult for someone recovering from a SAH. It also involves a good deal of reading of legal and financial paperwork. I have done what I can to serve as her secretary. She has visited her regular ophthalmologist, and has a second visit to a neuro-ophthalmologist in a few days. (The prior visit was before this issue started.) I'm just wondering if anyone else here has encountered anything like this, and if so which medical specialty was able to help? To me it almost seems like PTSD, and not necessarily related to the vision system. All my online search results relate to very different types of visual issues. Thanks.
  5. Interesting. I'll see what I can find from a US retailer. It's hard to tell from the photo how that would elevate the head more than a regular pillow.
  6. Thank you all! Super Mario: Yes, she does take naps during the day when she feels fatigued. That was an early lesson learned when she first came home and she was overdoing it. Skippy: I will get her a wedge pillow and give that a try. paul99: Yes, we were told by one of the doctors that the pain was caused by the blood being washed out by cerebrospinal fluid. Glad to see that this process should not go on much longer.
  7. It's now 6 weeks since my wife's SAH. In general her recovery is going well, especially when we see how much worse it could be. She is still suffering from frequent headaches, which seem to get worse overnight (which of course makes it hard to sleep). She seems to get some relief if she gets out of bed and just sits up in a chair in the dark for a while, but she really doesn't start feeling better until morning and some physical activity. Is it common for the pain to be worse overnight? Any idea why this is happening? Other than hydration (which does help somewhat), are there any other "lifestyle" changes that might help? I know medical advice is not allowed here, but for reference she is taking acetaminophen (paracetamol) for the headaches, and sometimes Fioricet. (She used to take fioricet for migraine, and knows to limit the amount she takes to well below the allowable dose in order to avoid rebound headache).
  8. Thank you all! The biggest problem really has been the headaches, which have been difficult to treat since my wife is allergic to codeine and related drugs. Some particularly painful moments made us worry that she might be bleeding again. Since my original post, I did end up making a call to the stroke clinic at the hospital and got some more clarity on when the pain warrants a call or visit to the clinic, and when to call an ambulance. We have also followed up with our primary care doctor (who's taken care of us for more than 20 years) which was also helpful to calm anxieties and help with pain management. Her only medical issue prior to the SAH was migraine, and she curiously has not had one since the SAH! Neither of the two pain medicines she previously used for migraine are allowed now.
  9. On New Years Eve (just over 3 weeks ago) my wife suffered a SAH from a very small ruptured aneurysm. She spent 15 days hospitalized (including 13 in NICU) and has now been home for 10 days. So far, we have been very fortunate: It occurred when I was home and could get medical attention quickly; the neurosurgeon came in to perform a coiling surgery in the wee hours of the morning on a holiday; there was no vasospasm. The only complication was cerebral salt wasting syndrome. She is having constant headaches, but has no impairments other than the common ones we're told are temporary: double vision, short-term memory and attention difficulty, fatigue, sleep disturbance, and intense emotional reactions. We have no close family in the immediate area except my elderly mother-in-law who needs care herself, but fortunately my employer has been very understanding so far of my absences, etc. Today is my third day working full-time since the SAH. My wife is a self-employed musician and we can manage fine financially without that income. (Of course emotionally, she needs to return to that activity.) The hospital that treated her is one of the best in the US, but once she was discharged it was a bit like being dropped off a cliff: All the intense attention ceased and it's not even clear who we should contact with questions. The discharge paperwork was unclear and in some cases contradictory. Mostly, I'm here looking for insight into how to stay a positive influence on her healing process, how to help calm her anxieties and not exacerbate them.
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