Jay Posted October 2 Share Posted October 2 Hi, all.... I'm Jay, located in the US. I am so grateful for the information and stories shared on this forum. I wanted to add my story for additional information for others. I'm 63, very active and healthy. I had a good bout of bronchitis 3 1/2 months ago, and had a severe cough fit one night. I felt a mild pain in the back of my head, followed by an electrical shock behind my eyes and a feeling of doom. I slept fitfully with a bad headache and very stiff neck and mild nausea. This persisted the next morning; I thought it was just a bad migraine. I presented to the local ED, where a CT Angiogram confirmed a SAH. I was transferred to another facility with a neuro ICU, and had an angio the next morning confirming a perimesencephalic NASAH. I was watched for a week and had a second angio confirming the results of the first. Having no symptoms aside from fatigue/sleepiness, I was sent home and told "I would get better", but no other firm instructions. I experienced severe lower back, buttock and quadricep pains for about a week when moving about. My headaches, which were constant, became less frequent to where eventually I did not require medication. Fortunately, one of the clinical nurses mentioned this website. It has been a wealth of help in filling in knowledge gaps and letting me know my experiences are expected and normal. Over the last 3 months, I have been napping when needed, hydrating, slowly increasing my activities as my body/mind allows, and try to practice patience and kindness. I am fortunate to have a long standing relationship with a therapist, who has been invaluable in navigating the panic, concerns, and uncertainties that continue to come up. I can't stress how valuable it is to address the mental health aspect of going thru this event and recover. It is as, if not more, important as the physical recovery. Like many of you, I continue to have symptoms, but they are constantly evolving and changing. I don't know what my final "recovery" may be at this time. My fatigue, which used to necessitate 4-5 naps a day, is now down to a nap when I need it, and usually once a week. I'm back to regaining my fitness, able to work out for 45 minutes, take care of yard work/house tasks, and run up to 3 miles. I started back to work 3 weeks ago, initially about 25% a week, and presently at 60% and gaining mental stamina sloooooowly. I no longer have photophobia unless around strong fluorescent lights for an extended time, but this is improving. Sound sensitivity is still a major issue; I have to wear ear plugs to most events (symphony, athletic events). I am still bothered by a sensation of fullness/pressure in my midface (nose, hard palate) and head when I am overstimulated mentally, stressed too much or too physically active. It seems to reset itself with a good nights sleep. Like many of you, I have started to learn my "warning" signs that my brain is bothered, and I can chose to nap, not stimulate my brain, or push forward depending on my want. I am in the process of trying to write a helpful guide of what to expect that my neurosurgeon can give to others who join this rare club. It won't serve as medical advice, just what you can expect and to reassure the person as they go thru a long recovery. We can all agree that a key for recovery is having great support. Hopefully my guide would help those who dont have enough support or a provider who is lacking in providing the support. Thank you for all of you sharing your stories and suggestions. I am grateful, and very very thankful my situation, although not ideal, was not worse. 3 Quote Link to comment Share on other sites More sharing options...
Kathy Posted October 3 Share Posted October 3 Hello Jay, I am so glad you found BTG posts helpful. It is a scary event for many of us and I too was lucky to gain insight and encouragement from reading the experiences of others in this group. Thank you for adding your story to this forum. I am sorry you had to go through this but encouraged that you are recovering slowly and steadily and figuring out how to listen to your body and make adjustments and adaptations within your environment. It is wonderful that you are thinking of writing a simple guide to make available to future patients in recovery. My SAH was in 2018 and I am still learning more about my own recovery journey. I recently came across an article that was helpful. It is kind of technical. I wish I had more ongoing therapy after my 6 week hospital stay. Maybe this article will help inform rehabilitation strategies for yourself and others. Neurocognitive Sequelae and Rehabilitation after Subarachnoid Hemorrhage: Optimizing Outcomes. Journal of Vascular Diseases 2023 vol.2 issue 2 https://doi.org/10.3390/jvd2020014 I agree wholeheartedly with your comment about the importance to address the mental health aspect of going through the event and recovery. I think this was especially true for me as I was not able to return to my teaching job. I was often told how great I looked (having no recognizable impairments) without any understanding or empathy for my cognitive loss and ongoing memory challenges and anxiety. Thank you again for taking the time to share your story. Best regards, Kathy (Colorado, USA) 3 1 Quote Link to comment Share on other sites More sharing options...
Louise Posted October 4 Share Posted October 4 Hi there Welcome to the site and so glad that you found us.. it is very much a revolving door but it does get better... On the advice thing thats great because when it happens its a scarry place to find yourself in and if you know others have been there - well it helps A LOT. When this happened to me there was 'nothing' Internet was in the very early days... take care, slow and easy... 1 Quote Link to comment Share on other sites More sharing options...
Patc Posted October 4 Share Posted October 4 Hello Jay and Kathy! I wholeheartedly agree with you regarding the whole mental health challenges we face after such a traumatic health crisis. I’m coming up 8 years ( Oct 26) and I still find myself anxious at times. I, too was a teacher, an early childhood educator. I returned to work gradually after 6 mos recovery at home ( after being in the hospital 1 mo). My bleed wasn’t caused by an aneurism ( not sure why it happened). I don’t dwell on it anymore, but the anxiety rears its ugly head around this time. One thing I always believed is that this event should have mental health follow up. I was lucky, I came out of it pretty much unscathed, but I do find myself “searching” for words - especially when I’m tired. I also tire more easily and get more easily overwhelmed with crowds and loud noises. This site and its members was a life saver in my early days of recovery. I don’t visit as often, but I always seem to return on or near my anniversary date. Thank you for this “safe” place. Communicating with people who have experienced what we have, is such a gift. We understand each other, we get it. Wishing you all a successful recovery- all at your own pace. Warmly, Pat 2 1 Quote Link to comment Share on other sites More sharing options...
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