Biguglygremlin

Thank you PutSleepApneatoBed

I agree that REM and dreams are a significant part of the problem and hence the solution when it comes to many sleep disorders but there seems to be little focus or real science in that direction.

Personally I rarely have any trouble getting to sleep but because of RBD REM is the stuff of nighmares for me.

I have tried Melatonin on a number of occasions and consistently found that for me it increases REM frequency and duration which is exactly what I cannot afford.

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.

Hi PutSleepApneatoBed,

Do you have some suggestions or theories to do with dreaming?

I have a rather ragged relationship with dreams myself so that is another subject that grabs my attention yet it is not a subject that is frequently raised. (See above links)

Hi cpapuserbuttired,

I'm not sure why I'm responding to this thread or what I can say that might be useful.

Unfortunately, many people exist in the place you have discovered and there may be a thousand causes or none at all.

Some of the more obvious culprits include stress, depression, viruses, low testosterone, high iron (hemochromatosis), etc.

What caught my attention was your underlying logic and your expressions because, over a shorter duration, they could also apply to a form of placebo.

It seems to me that one of the most powerful tools we have to manage our lives and deal with indisposition and illness is placebo, yet we have almost no way to grasp it or use it in any dependable or sustainable way.

I doubt that this has been very helpful, sorry, but it does get away from charts and such.

Melatonin

RBD

I think I noted some mention of using them on children so they can't be too mean but it might be uncomfortable to wear one all night every night.

I should just get one and give it a try once they are in stock again but it would probably live in peril as my CPAP does on account of the RBD

It might be safer if I stuck it on a toe. :)

At least one of the devices in your above link has an alarm. Deluxe Unit

Maybe somebody out there has tried one.

There are lots of devices available including a bunch of wrist devices, but not all of them are dependable as yet, and they don't all have alarms, or if so they are not necessarily set off by dropping oxygen.

I seem to recall a forum member mumbling about getting a sore finger.

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. :)

A pyramid!

That's what this is all about?

I've been hauling rocks, like forever, with no clue as to what we were building.

No wonder it's taking so long to get to the point!

An abandoned, half-finished pyramid would be such a sad thing.

Seems like we need more minions.

You have an incredible history with this forum SusanR, right from its very inception.

You invested many hours of attention and effort and initiative.

I am just a passing rabble-rouser.

This thread, which probably should have been deleted, was certainly not directed at you.

It was intended to rally support, acknowledgment, and a few basic tools, for Sierra.

I get the impression that a number of forum members would support your efforts to revitalize and enliven the forum but it won't be sustainable without changes in the functionality and even then it would probably need some inspiration and initiatives similar to what you applied in the early years of the forum.

If you can make things happen behind the scenes to create a more sustainable environment I'm sure there are forum members who are willing and able to initiate and support more lively, constructive, discussions.

There have been a number of discussions, both here and behind the scenes, culminating in some members of the board approaching those who are managing this forum.

I get the impression that the response that those board members received was essentially:

Who do you think you are? It's none of your business! We are the experts. We are in control. We will decide what needs doing. Go away and leave us alone!

Those might be the standard responses to preserve power and control and, despite lacking initiative and tact, it might have been understandable if there was some evidence, thereafter, of purpose and progress but it's hard to see any significant or meaningful changes in the intervening months despite the favourable circumstances and increased needs and benefits created by this pandemic.

The continuing decline of this forum is not a surprise nor an accident, it is the inevitable result of decisions being made or deferred by the present MyApnea forum management team.