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I recently read an article that was both enlightening as well as concerning and I wanted to talk about it here on my blog. It was surrounding an Australian hacker, who has taught people how to change their own CPAP pressure as they see fit. I want to start this by saying that after I read this article, I wrote to the Editor-in-Chief of Motherboard.com. He answered me almost immediately and was very responsive. We ended up having an interesting discussion and I wanted to share it with all of you.
The article “Why Sleep Apnea Patients Rely on a CPAP Machine Hacker” basically summarizes the work of an Australian Hacker (Mark Watkins, whose program is called Sleepyhead) which has been showcased on a forum called CPAPtalk.com. He has created an open-sourced NOT FDA approved software which allows a person to gain all of their CPAP information. In addition, this information can then be used to have people self-adjust the settings on their CPAP.
The article highlights the idea that most people cannot seem to get their doctors to listen to them and continue with follow up for the use of CPAP and the appropriate treatment of Apnea. Thus, people are now DIYing (do-it-yourselfing) their own treatment. They use this program to see if their treatment is effective, and if not they raise or lower the pressure on their own.
I completely understand why a person might do this, it seems simple. If they happen to go into their prescribing doctor (the doctor who prescribed their CPAP), and explain their symptoms, most docs will just randomly turn the CPAP pressure up, by 1-2 cm, and “Hope for the best”. When in fact they need to send the patient back into have a sleep study to re-evaluate the progression of their disease and see if they are even on the correct treatment. Or at the very least have the patient complete a re-titration of CPAP to maintain pressure accuracy, and of course re-calibrate the machine.
When a patient sees this behavior from their doctor (where they are simply increasing the pressure), they may say to themselves, “Well, I can certainly do that myself, and I don’t need to waste my time, money or energy coming all the way to see my doctor, much less going back in and having another sleep study which is both uncomfortable and costly.”
Here is the actual serious medical problem with doing something like this:
Do-it-Yourself treatment can make apnea worse.
By allowing a patient to manage their own pressure they could in fact cause MORE apnea? When a PAP device (CPAP, or BIPAP) is set too high (which is what patients tend to want to do-increase pressure when symptoms arise), it can over-inflate the lung and cause the brain to emit a CENTRAL Apnea, which is where the brain tells the lung to stop breathing!
This is MUCH more serious and difficult to treat.
This is the same reason why we do not ask patients to pick their own medication dosage, with no knowledge base of how this can help or hurt their situation.
By causing central apneas this can make the normal PAP treatment ineffective, and now you have two problems—obstructive apnea and central apnea.
The real issue here is that many doctors are not paying attention to their patient’s needs, which I agree can be frustrating but giving patients the “keys to the pharmacy” is not the answer.
Concurrent medical conditions make self-titration dangerous.
The article appears to be assuming that these patients are not medically complicated, and very straightforward, this is simply not often the case. A majority of the patients who have apnea are overweight or obese, diabetic, and have hypertension, for starters (these cases can get incredibly complicated for people with COPD, lung disorders, neurologic disorders etc.).
By allowing a person who is medically complicated, to control their pressure, they will affect their other medical issues, sleep apnea cannot be treated in a vacuum but must be treated with the view of the entire patient. Just look at heart-rate. Too high of a CPAP pressure will cause an increase in heart rate, for many patients this could lead to heart attack, stroke or death.
So what is the solution?
- The entire problem can be solved by using an auto-titrating PAP machine, which most companies now have available which has years and millions of dollars of research to create an effective variable treatment protocol (a pressure that goes up and down as you need it). Basically, UPGRADE YOUR TECH, and the issue no longer exists.
- Go ahead and get the data, and then SHOW IT TO YOUR DOCTOR, this might save you the step of needing another sleep study, and get your pressure changed appropriately.
- Consider an oral appliance. These are created by a dentist with specialized training in Dental Sleep Medicine, and in many cases can be extremely effective, and easy to titrate.
- It might not be the treatment but rather your sleep habits or even some mild insomnia, consider my sleep course or my new supplement Aktive Sleep Booster with CBD.
It was a great article since it caused a reaction, which is what great journalism often does. I applaud the writer for shining a spotlight on the topic, and I am happy to add some education to the conversation.
Wishing you sweet dreams,
Dr. Michael Breus