One of the most difficult things about suffering from many years with undiagnosed and untreated sleep apnea (SA) is the serious co-morbidities that came with it. People with long-term undiagnosed sleep apnea can suffer from several related diseases: cardiovascular disease or even congestive heart failure, type 2 diabetes, strokes, other sleep disturbances, and many other problems including cognitive and memory impairments. Cognitive deficits can cost undiagnosed patients their careers, financial stability, mental health or sense of well-being, and their marriages.
I was misdiagnosed for almost thirty years after I started seeking medical help. I probably suffered from some degree of SA all my life and, looking back, I think many of my family members did to. But this blog post isn’t about my long difficult journey to self-diagnosis and treatment. Rather, I want to talk about the next step in my journey: How I Got My Brain Back.
Several months into successful PAP treatment, I was suffering “blackouts”, or unaccounted periods of time (and I don’t drink). These were particularly concerning because I was living alone and traveling alone for work. There were NO warning signs and I only recognized blackouts after the fact. I underwent several days of neurological and neuro-psychological testing, but I was misdiagnosed, which actually did some harm.
I concluded I would have to help myself. I ordered literally dozens of books on SA, neurology and related issues. It was difficult to read, given my severely impaired brain, but I was desperate and determined. I learned about neuroplasticity and neurogenesis and how I could rebuild my brain. I learned that there were Parkinson patients who had kept the ravages of Parkinson’s at bay through their own efforts to foster neurogenesis.
I followed up with the Parkinson’s formula. I did exercise that moves the body through space. I also took efforts to learn new things and stimulate my brain. For two years, here’s what I did, step by step.
1: Exercise In my reading, I found that the only thing that everyone agreed would foster neurogenesis was exercise, particularly exercise that involved moving your body through space. Ballroom dancing is a great one, but there are many others. I went to the gym every day for six months straight. EVERY SINGLE DAY. And I am as FAR from a gym rat as a person can get. This was an act of sheer will. I went from water aerobics to the track, to spinning, etc. After six months of that I saw my PCP and she said, “WHAT happened to you?” Meaning: you look like a different person.
2: Learn Something NEW Two great options here are to learn a new language or new instrument. The emphasis is the novelty. A language or instrument that you are already familiar with won’t do. I took up Italian and the acoustic guitar!
3: Do Puzzles There are all kinds of fun puzzles out there to pick from to keep the brain stimulated: logic and math puzzles, sudoku, crosswords, cryptograms, and so on. I renewed my interest in doing puzzles, which had lagged when my SA was undiagnosed.
4: Use Your Treatment (relentlessly!) My first rule was to never, EVER sleep without PAP. It wouldn’t do much good to be developing new neurons if I was simultaneously losing neurons to hypoxia (lack of oxygen). Accordingly, I arranged for battery backups for my machine during power outages. I took it with me when I traveled. I never napped without it. My partner had orders to never let me fall asleep in front of the TV or otherwise without the PAP mask on my face and the machine turned on. And I did the same for him. I was fanatic about this. I also refused to take a sleep study without PAP. Since I obstruct about 83 times an hour during REM, and I desaturate to 60 or below routinely, I felt it was life threatening for me.
After about 2 years, I put myself to a test. By way of background, I believe that SA caused me to lose my homing pigeon worthy sense of direction. I had always known exactly where I was spatially and now I didn’t. I really missed that capability. So, after two years of hard work, I did a test to see if my lost sense of direction had improved: I drove up the coast of Connecticut to a string of small coastal towns right off I-95. One after another, I drove out to the beach in each town and, without using a GPS or map, retraced my steps back to I-95, and went on to the next coastal town. When I had successfully done that with about 7 towns, I concluded that to a certain degree, I had succeeded in rebuilding my brain.
There is no doubt that many other motivated patients have done things to get back their mental or physical abilities back after treatment for SA. This is my story, but I want to hear more about what has worked for others. If we could share these techniques, we could help patient still struggling with the same issues. This is particularly important because the medical establishment has yet to address this important part of SA treatment and recovery.
Please share your approach to ‘Getting Your Brain Back’ in the comments section below. Then, as a group, we can learn what works and help each other get moving forward!
This article was written by Sarah Gorman, a current member of the MyApnea Multi-Stakeholder Engagement Panel.