I'm not trying to do that "diagnose you over the Internet" thing, but did any of your doctors ever mention or look into autonomic nervous system issues? Reason I ask is that what you describe is somewhat similar to the kind of cognitive impairment ("brain fog") and fatigue I experience with dysautonomia. Although it sounds like your symptoms are much more extreme, they're not inconsistent with what I've seen other patients experience.
For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.
Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.
In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.
Good luck, and good for you in still fighting to be a positive force in the world and for your family.
This is incredibly frightening, as I had mono when I was 26, and have never felt as "sharp" afterwards...just been telling myself all in my head, or a part of getting older
For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.
Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.
In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.
Good luck, and good for you in still fighting to be a positive force in the world and for your family.