rpad wrote:I purchased my CPAP machine from a provider over the internet. With the machine came two instruction booklets, one for the user (me) and the other for the durable medical equipment provider. The second one includes instructions for changing settings.
I have found it very helpful to know how to lower and raise the pressure. I have been using CPAP for 15 months and have adjusted the settings twice on my own to great benefit. I raised the setting from 8 to 10 after I had gained 10 pounds and the change made the therapy more effective. I dropped it down to 9 after I lost a few pounds and was suffering a bit from mouth dryness. It is working just fine now.
During my annual visit to my sleep doctor last week I told him what I had done and he said that he had no problem with my making the adjustments on my own and that I only really needed to contact him when major changes occur. He said it has been his experience that the more patients know the more likely they are to stick with it.
It sure works that way for me. It seems that much of the therapy is personal. Why else would there be so many mask options. I fiddle with mask fittings constantly and alternate between two different masks (full face and nasal pillow) to get optimum results and minimize face marks. I think my face must be "non-standard."
So, learn all you can about your equipment and do what you need to do to make it work for you.
I have found it very helpful to know how to lower and raise the pressure.
rpad wrote:Daniel wrote
"My questions to you based on what you have said above are How do you know it works for you? Changing settings by 1 or 2 cms might not cause great problems, but where do you draw the line? Why did you bother with a sleep doctor at all? Are you aware of the possible damage being done to major organs ? "
Thanks for your comments.
Answers: 1) I sleep fully and wake up refreshed. 2) My doctor draws the line, not me. I change settings within guidelines. 3) I see a sleep doctor to get a diagnosis and treatment plan. 4) Please refer me and other posters to the medical references that say slight changes to pressure settings on CPAP machines cause organ damage or central sleep apnea. I hope you are mistaken about this. The potential for law suits is enormous and could mean the end of CPAP treatments, at least here in the U.S. Thanks in advance for your thoughtful reply.
rpad wrote:Daniel wrote
"These statements are poles apart. In the first instance you advocate strongly to do whatever is necessary, without referral, to make cpap work including the adjustment of pressure up or down, which I believe to be totally irresponsible, while in your second posting you advocate working within medically approved guidelines. What exactly is your stance in this regard ?"
Thanks for your careful reading of my comments. I also appreciate the medical references you provided. I did a literature survey of the National Institutes of Health Medical Library and confirmed your point about the possible connection between excessive pressure and incidences of central sleep apnea. However, I did not find any studies that showed a relationship between excessive pressure settings and cardio problems, blood pressure, or organ failure. I'd be very interested in any leads you have into this.
Interestingly, I did find a study that showed a high rate of efficacy for patients who self-titrated their own CPAP machines, based on qualitative feedback, such as snoring. This was done under supervision with instructions over the phone to save money on doctors' visits. The patients who followed this protocol seemed to adjust better to the treatment. Sounds like a promising approach to me.
My "stance" on all of this is the following: Take control of your own treatment, understand how your equipment works, and be prepared to tweak masks and machines, in order to have the best possible experience and results. All of this should be done within guidelines established by your doctor. This is the procedure I followed as my post said, although perhaps not clearly enough.
You see, the literature review confirmed my view that too many sufferers are unable to stick with treatment because of the cost, complexity, and comfort issues with masks and machines. Your "stance" that patients should take the prescribed treatment and do no tweaking without consulting the doctor or having additional sleep studies is impratical and expensive. I submit it is somewhat unethical since your approach would prevent too many many sufferers from getting treatment and relief. Perhaps you have easier access or can more easily afford visits to the doctor or sleep studies than most of the sufferers I know or have read about.
rested gal wrote:Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?
Thanks to "mikesus" for finding and posting on cpaptalk.com the above link to a study comparing treatment results from sleep clinic titrations vs titrations done by patients making their own pressure adjustments while using CPAP.
This was a study in which patients were educated in how/why to change their treatment pressures themselves. They were given the "keys" to how to change pressure and allowed to "drive" their own machines.
Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?
Michael F. Fitzpatrick, Christi E. D. Alloway, Tracy M. Wakeford, Alistair W. MacLean, Peter W. Munt, and Andrew G. Day
Departments of Medicine and Psychology, Queenâ€™s University, Kingston, Ontario, Canada
"An educational model in which the patient is empowered with the understanding and ability to make decisions regarding treatment has been demonstrated to be successful in other medical conditions (16). We reasoned that a similar educational approach might be successful in patients with OSA who require CPAP treatment." (My note: think of the way diabetics are educated and allowed to self-administer insulin.)
"A strategy that empowers the patient with OSA with the freedom to alter CPAP appropriately in response to altered upper airway physiology is inexpensive and may prove advantageous in the latter situation and in the long-term management of the patient."
"The study protocol empowered each patient with the knowledge and capability of directing his or her own CPAP treatment during the self-adjusted CPAP treatment limb. This strategy has not previously been employed in CPAP treatment of OSA, but systematic evaluations of similar management approaches for other medical disorders have generated very positive findings and have been demonstrated to facilitate cost-effective treatment of those conditions (16, 51â€“53)."
"In summary, this study demonstrates that self-titration of CPAP in patients with OSA is as efficacious as manual titration in a sleep laboratory, with similar subjective and objective outcomes, and CPAP compliance. Clearly, for this strategy to be successful, the patient must understand when and how to change the CPAP. Although the patient population studied did include a wide age range, this strategy would not be feasible for intellectually disadvantaged patients and those with physical handicaps that would severely limit vision and/or manual dexterity. Nonetheless, the findings from this study imply that routine overnight polysomnography is unnecessary for the purpose of CPAP titration in many patients with OSA, provided that the patient is given some basic education and support."
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