To get the temperature of the shower right we use the “data” from our built in temperature sensors to adjust the hot and cold water for a good temperature. No data we freeze or are scalded!

But in sleep medicine there seems to be a tendency to disregard the changes which occur over time. They let the patient “fly blind” into the crisis that will most likely be caused by slowly changing increasingly more ineffective Continuous Positive Airway Pressure (CPAP) therapy.

Last night was my 22,198th night outside the womb so I have had nearly that many of nights of sleep. Perhaps at the 10,000th night I started to have sleep apnea events. Some 8000 nights later I was looking at a report from a polysomnogram which told me that they found severe sleep apnea with extreme hypoxia. And so I began to understand why I was reading that report at a shelter where I was staying. Undetected sleep apnea had robbed me of my basic abilities to get things done and had thus fostered a severe crisis in my life!!!

For about the last 1,500 nights several times a week I have looked at my CPAP flow data to see how things are going with my therapy. Every night was different. I have noticed some trends. I know that my need for pressure will become less as summer approaches. I know that a hot spell will likely change how my therapy works. I know that too little or too much exercise can cause problems. I know that starting perhaps mid October to March I will need to use EERS[1] to blunt ventilatory instability resulting from post traumatic stress being added to the ventilatory gain induced by CPAP pressure during that season which is near the anniversary of a traumatic event.

Perhaps it is simply the fact that few if any doctors have had such intimate experience with a CPAP sleeper and so they assume that we sleep the same every night? As I have looked at my own data regularly for the last several years I can see how the events shown relate to how I feel and perform on the days proceeding. I have learned what obstructive events look like. I have also learned what to look for as indications of ventilatory gain issues.

And I have learned that I need to check my data!!

But the “normal” way to deal with CPAP in the clinical sense is to look at the CPAP flow data for a minute or two perhaps two times in the months following the arrival of the machine and then assume that “all is well” unless they see the person again regarding some health problem that they have.

But if CPAP therapy goes bad it tends to leave the person with a very fuzzy mind. Thus compromised they will be largely unable to do good self monitoring and even less able to respond well to a problem if they have one.

I suppose the answer to this is to obtain and use the data more. I know from seeing my own data how essential it is.

So what I wish they would do is to construct is a system where the nightly CPAP data flows to a central place, is analyzed, and then made available to both doctor and patient through a web interface with e-mail notifications. So the patient can supply that daily feedback and both can see problems that exist and are causing problems. So the problems do not get to grow into crisis. So the therapy can be enabled to work well. So that the person can heal.

[1] Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

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