We have probably all heard the adage, “Necessity is the Mother of Invention.” Like so many of the things your parents taught you, this one is in fact true. When whatever is available to solve a problem is inadequate, people will search for new solutions. Current research strongly supports the notion that people will seek to meet their unmet needs through experimentation and innovation. It is also true that the greater the need, the more likely it is that people will use trial and error to find a better solution. Research conducted in many areas of life, including health, has consistently demonstrated these findings.
Many people with chronic illnesses, have day-to-day challenges that may or may not have well defined solutions. While the usual approaches to living with a chronic disease may well work for most people, many will face issues that do not yet have tried and true solutions. This often drives people to come up with new solutions for themselves that are not obvious to either other patients or to healthcare providers. Unfortunately, most people do not tell others about the solutions they find. As a result, many new ways of dealing with a chronic disease that could be really helpful to the larger community do not reach them.
On occasion however, these new approaches do make it to the attention of the medical community and to the community of people with the disorder. The use of trampolines as a “medical treatment” for children with cystic fibrosis is one such example. Cystic fibrosis (CF) is a genetic disease that results in very thick mucus secretions in the lungs that make it hard to breathe normally. Parents of children with CF are taught how to clap or vibrate the child’s chest wall to loosen secretions that can then be coughed out. You can imagine how difficult it is to wrangle active children and have them sit still long enough for you to do this chest physiotherapy. Parents were in need of a way to loosen secretions that their children would actually have fun doing. The first report in the medical literature about the use of trampolines to do this was published in the late 1980’s by a Norwegian pediatrician. If you have children, you know that most pediatricians and in fact the American Academy of Pediatrics itself, would argue against the use of a trampoline due to the risk of injury. But it was not the pediatrician’s idea. It came from the mother of a young child with CF who noticed that her daughter not only loved to bounce on the trampoline she had just been given but also that daily use resulted in loosening of secretions. Her clever observation led to a small clinical trial with such positive results that the use of the trampoline by children with CF has now become commonplace.
Based on this and many other studies, we know that across health conditions people who do not see an adequate improvement of their quality of life with standard care are likely to seek solutions outside the norm. While many people with sleep apnea see an improvement in important outcomes like sleep quality and duration, daytime drowsiness, etc. with the use of CPAP and other standard treatments, many do not. You yourself may have already experimented with changing your treatment or behavior to improve your quality of life with sleep apnea. When people experiment on their own to see if their new solution can improve their own wellbeing, they do so with a sample or “N” of 1. They usually do not invite others to join them. But if the results of many individuals’ experiments could be combined, patients, doctors, and clinical researchers alike could learn whether this new solution could benefit the whole community.
The MyApnea.org community provides the perfect forum for sharing and testing new solutions to the challenges of living well with sleep apnea. Together we can turn anecdote into data and find out what really makes a difference to how well we feel. We can use this data to do more of what works and less of what is not turning out to be so helpful for patients like us. The clinical research community can take a look at the data too and see both our stories about the solutions we have developed and the hard numbers from our experiments. We are proposing to get a system for sharing your “N of 1” experiments up and running on MyApnea.org. Please comment on this post if you are interested in the possibility of doing self-run experiments. We want to hear everyone’s thoughts.
Our next post will share an experiment people with sleep apnea did to see if playing the didgeridoo helped their breathing. We will tell you more about how to put an N of 1 experiment together, too. So be sure to check back soon! [Update: see our second post here]
My hack is to listen to all of my physicians and then do the collection of their suggestions - which seems to work well: Dentist - custom mouth appliance to stop clenching Neurologist - cervical collar to address pinches nerve in neck Sleep Doctor - small pillow (synthetic buckwheat hulls) to better fit and better align airway - CPAP uses when I nap -- really improves my alertness after the nap When I reviewed this success with them individually each said they had not realized that the benefits would be cumulative! Perhaps the first part was to brief them all on what the others had figured out about my sleep situation. They all said that they never collaborate. So I guess the hack is to act as my own facilitator among my medical support folks.
I found that the single most important factor in feeling better was to eliminate apneas as much as possible. That was critical. That meant that I used PAP all night, every night. I did whatever was necessary to minimize leaks and optimize treatment. I don’t leave home without my machine. I don’t nap, even on planes, without using the machine. I have backup power in my home and places I visit frequently, in case of a power outage.
For me, since I desaturated badly ( less than 60 percent, regularly, without treatment) it is not a question of getting adequate restful, restorative sleep. It is, first and foremost, about eliminating apneas and the associated hypoxia damage to the maximum degree possible.
Only when you stop the ongoing hypoxia damage, can you and your brain begin to recover......