Mar 182013

I heard on The Current on CBC Radio 1 today that it’s the ten-year anniversary of the SARS epidemic that hit Toronto in 2003. I remember it well, not because I was hit with SARS, but because like many who were sick and injured at the time, using the health care system became difficult. For me, in two ways, not including the fear of catching SARS, which diminished over time as I got used to the changes and because I just had too many other health-related problems to deal with to stuff one more worry into my head.

First way: I had had a Holter monitor done at St. Michael’s Hospital just before the epidemic shut down hospitals in 2003. I was able to return the monitor but was barred from seeing the doctor in the hospital. He called me. At that point, I had been living with a brain injury for just over three years, and to say my communication skills — my ability to listen, process, and respond in real time over the phone, never mind face-to-face — was poor was an understatement. Nothing changed in the care of my heart as a result. My GP remained frustrated, and I just tried to get through each day with huge chest pain (plus lots of other problems). Would it have made a difference if I’d been able to see the doctor? Only in my ability to understand him, I think. I’ve had more Holters done, seen the same doctor again, seen other cardiologists, and nothing has changed.

Until maybe recently.

I began brain biofeedback again and part of it included working on my heart rate variability (HRV). I don’t think deep breathing for five or ten minutes as I do during biofeedback or did a few years ago with a behavioural cardiologist makes any permanent difference, but it seems like gamma training has begun to improve things — very, very slowly. Clearly, my heart problem starts in my brain.

I had a new assessment done recently of both brain and heart. This is the first one that states the obvious: I’m at risk of myocardial infarction. Heart attack. Oh goodie. My neurodoc stated that awhile ago; the people at the ADD Centre show concern but don’t baldly come out and say it, being kind; but cardiologists have not once said that to my face or indicated in any way, shape, or form that things are not good. But then none did an HRV assessment of the Holter studies either.

Second way: I was seeing the psychiatrist who diagnosed my brain injury (closed head injury) weekly at Baycrest Hospital in 2003. I was allowed in for that, but only through one entrance. And each and every time, my temperature was taken. A couple of times it seemed like they hesitated over my temp but let me in anyway. It was below fever level but above normal. That was the first time I recognized through what-felt-like-cotton-batting-surrounding-my-cognitive-processing that I really was hot. It wasn’t just “in my head.” Except it was and is. My brain injury has raised my temperature and/or raised the perception of my temperature, but the only health care workers who noticed were the people screening everyone who entered Baycrest. (It also made me, someone in her 30s, feel that much more awful going into a hospital for the very old.)

No doctor would help me lower it or my water retention. I was finally driven to figure out how to reduce it on my own. But it’s still a problem. Reacquainting myself with how the brain controls thermoregulation of the body is on my ToDo list. Clearly I can’t expect endocrinologists, psychiatrists, or neurologists to recognize the problem or, if recognize it, to do SFA about it. So it’s up to me. Gah! Good thing I studied neurophysiology in the dark ages and my memory continues to improve enough to maybe help myself.