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Biguglygremlin

Biguglygremlin
Joined Nov 2018
Bio

Male aged 60+

Overweight

Very Severe Apnea

CPAP user since June 2014

Airsense 10

Pressure <12>

Nasal Pillow

Airfit P30

RLS PLMD PTSD CFS RBD

Australia

Biguglygremlin
Joined Nov 2018
Bio

Male aged 60+

Overweight

Very Severe Apnea

CPAP user since June 2014

Airsense 10

Pressure <12>

Nasal Pillow

Airfit P30

RLS PLMD PTSD CFS RBD

Australia

I'm sorry cpapuserbuttired, I raised the subject of placebo knowing it was not relevant to your query beyond it's absence but wishing that it was better understood and more attainable.

I have no knowledge of Placebo even though I am quite interested in it, in part because it's such a vague thing and hard to get a handle on.

I think if placebo was capable of operating beyond the short term it would have a different name, perhaps optimism or faith.

We all hear stories or testimonials of amazing benefits from initial treatments including CPAP and IMO there has usually been a real benefit but often what I would label placebo cuts in and boosts the benefit beyond sustainable levels. Later, as the enthusiasm ebbs or the placebo runs out, there is an inverse reaction, complete with what seems like withdrawal and a longing to get back to that place.

I suspect that this process happens to most of us much of the time in subtle ways, like a mild form of bi-polar, it is part of how we experience life, but I've begun to suspect that it can be way more powerful than that because a few years ago I discovered that my testosterone levels had dropped to 2 (a healthy young male is closer to 30) so I began replacement therapy. For brief few days, it rocked my world and I spent months trying to understand why it stopped and hoping to recapture that state and eventually concluded that it must have been a powerful placebo effect and I never was able to invoke it again.

Despite my style of writing (or lack thereof), I do not have a wild imagination or flights of fancy yet I still long for that place. Hence my continuing curiosity regarding placebo.

The functionality and safety of CPAP machines and equipment is the paramount concern of this forum and any input should be welcome even if it only helps us to better understand the risks and benefits as well as the concerns of other forum members.

It seems to me that the machine can never be truly safe in every circumstance, even for a competent user with a partner, let alone when dealing with patients who have the potential for such a diverse range of extenuating circumstances.

CPAPs, as portrayed in this forum, seem to exist in a twilight zone on the outer edges of independent, fit, and well, yet many CPAPs are still being used beyond that zone with patients who are seriously indisposed, or dysfunctional, or incompetent, hopefully with some oversight, perhaps maintained by occasional or part-time carers.

In the furthest zones patients are in institutions or hospitals, under full-time professional care, often with other devices monitoring their vital statistics.

It's unlikely that the CPAP can be totally safe and functional through all those zones and especially not in the transitional stages.

I wonder if the real solution might be to learn from health professionals and search for, or wait for, better personal monitoring systems and warning devices that are independent of the CPAP unit and its power supply.

Personal Health Monitoring

Maybe one day, in a far-off galaxy, CPAPs will come fully equipped with biosensors, alarms, control of all household appliances, and of course, the latest weather report.

The user manual for that CPAP will keep Sierra busy for quite a while. :)