Biguglygremlin

Hello again SusanR,

I presume the AHRQ refers to your thread regarding the U.S. Preventive Services Task Force. I doubt that they would be interested in a response from the other side of the planet and certainly not my views on expanding the scope of entrapment that screening adults without symptoms is likely to become.

I trust that you will forgive my scepticism and lack of tact but it always amuses me that researchers make such profound discoveries, proving that those with the worst symptoms have the worst outcomes. Who would have guessed it? (I do, however, love the implications regarding AHI readings)

If I set aside my wayward thoughts I am still left wondering where this study was conducted and on what demographics because the study would have been invalid if they had all been concerned enough about their health to take preventative measures, and had the means to seek medical support and finance appropriate steps to limit not just the risk presented by desaturation but also the many other lifestyle and medical factors that contribute to early death from cardiac events.

I know that it is incredibly presumptuous for me, a total ignoramus to question the significance of such scientific research.

Most likely, when the morning light drives back the darkness, I will repent and apologise for my foolish indiscretions.

I fail to see why a sleep study would be required to confirm RBD if the patient has launched themselves out of bed a few times and their partners testimony confirms a history of nocturnal actions. Even allowing for additional confirmation or some measure of severity a sleep study would be a waste of time without video footage which I assume they do not employ.

There are probably many reasons why CPAP might reduce the number or severity of RBD events. CPAP can potentially reduce stress, it can eliminate the jerky gasping responses to Apnea. CPAP could facilitate reaching and remaining longer at certain sleep levels, it can also provide an awareness when moving around that enables a person to override or suppress the urge to move. Last but not least the CPAP gear can actually restrain movements. Collar and Chain

Most of those factors are overlapping and interconnected.

As to waiting times I received a call last week to enquire if I still wanted an urgent consultation with a sleep specialist that was requested 4 or 5 years ago. I was not offered an appointment, just confirmation that I would remain on the list.

I'm thinking it might be a day or two yet.

Hi GaryW

I understand where you are at with the frustration and anger but I don't understand the compulsion.

If you survived without it until recently can't you survive without it for another night or two until you are able to go and get help?

Whoever supplied the equipment has some obligation to make sure it is working for you.

As to the actual cause I am not familiar with full face masks but if I want to check that my machine is working I activate a mechanism, like a valve of some kind, in the back of my mouth that allows the air pressure in the throat to flow back through the mouth and puff out the cheeks. Otherwise that valve is always held shut by the pressure of air coming through the nostrils. Not a good explanation sorry but something to think about perhaps?

I've always been wary of sleepiness assessments because they are largely subjective and can be very dependent on outlook and activity levels and incentives etc. Not to say that the sleepiness in not real and doesn't need a solution but perhaps what was happening during those several days without the CPAP was enough to change the 'norm' for a short while.

I presume you have been using something like this Adapter but at the machine end of the primary hose? Was there ever a device that also enabled the climate control? I'd be tempted to leave the fittings in the box and just insert the O2 tube directly into the hose down near the machine, being careful to avoid the wires. Seems like another 'don't try this at home' moment.

You've been a big help RayRBD in more ways than you know and it is appreciated.

It seems to me that what you bring to a discussion, that has the most profound benefit, is a sensible attitude and awareness of the larger picture.

Go spend time with the grandchildren. Young people are the most powerful therapy available. They are the reason for my continuing existence and the source of my sanity.

As to your admonition above, I came here to ask questions, not to impose my distorted reality on others, but maybe I will venture into that domain one day just for fun. :)

It is a worthwhile path to choose RayRBD and one that should provide a sense of purpose as well as some insights. Do they do much beyond gather data? Are they pursuing any good prospects yet? Have they been able to demonstrate any improvements? What therapies seem to have the most potential? Are there new links that we have not heard about? Are there better methods of diagnosis? There are too many questions. Where are the answers?

You are probably right Sierra but I threw in the word counterintuitive because it sounds good and I'm pretty sure that whatever I do is not likely to make sense so it has to fit somewhere.

I like hearing other peoples experiences and I like telling stories. They bring the semblance of reality to a world of illusion but, for me, they are all just aspects of chaos, an attempt to create order where there is none.

It's a dangerous way to see the world and perhaps a degenerative process in itself but I love obscure concepts and I like conundrums. I guess that's why I choose to see life this way and why I find it so fascinating. I'm aware that many of my views dance on the edge of depression but dancing on the edge is what I do in every direction. It's how I chart my universe.

Back to more mundane things, it seems that a significant contributor to many sleep disorders is stress and perhaps that is especially true of RBD. It amuses me that all these things cycle around, cause an effect ..... affect a cause, stress impairs sleep ..... impaired sleep fuels stress. One thing triggers the next and they spiral out of control. By the time we are fully committed to 'fix' something we are in the middle of a cyclone trying to stop a single sheet of iron driven by a spectrum of associated forces.

What I could use is more cheats. More ways to calm the storm, more ways to create order amongst chaos, more ways to strengthen the remaining structures. Medication is helpful for a while and I will try Clonazepam one day, but perhaps meditation or relaxation techniques could have a more enduring impact, or are there more specific specialties or therapies for dreams?

Now I feel like that damaged robot from Short Circuit. "More input!"

Yes! We should take more steps to save the plastic trees!

Personally I think water is dangerous stuff to drink anyway!

Especially that stuff they bottle on the island of Fiji. They deprive the locals of a safe water source, use twice as many plastic trees as other bottles and spend a long time in transit on tropical waters which leeches all kinds of nasty things into the water.

But I didn't visit this thread to discuss my drinking problems.

I thought I would do a spot of stirring and Ozone is as good a subject as any, in fact it works better if you stir it!

1) We like to fear and vilify what we can't see or understand.

2) Researchers use many strategies to generate funding and recognition.

That should effectively clear the decks of unfounded prejudices and self proclaimed experts!

Now where were we? Oh I remember now.

1) In the world according to BUG ozone is on a par with bleach and less harmful than many cleaners, especially oven cleaners and mould killers.

2) In BUG's universe there are a million other things more dangerous in the air than ozone, including plastic tree emissions, real tree toxins, mould spores, plague, lead fumes, asbestos dust, covid, wood dust, plant pollens, smoke, etc. I can even get a buzz sniffing my hand sanitizer. Ironically ozone would destroy most of those contaminants and leave the air clean and safe.

Back to the usual disclaimer:

I don't use CPAP cleaners, although I do own a number of Ozone Generators, and I don't recommend that anyone should use CPAP cleaners. (Ozone might cause issues with technology) Neither do I recommend that anyone buy or use any of the aforementioned products.

Now where's that cave I plan on retreating to?