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I took a quick look at the website for the conference (thanks for the links) and it is billed for physicians and other sleep professionals. I saw nothing oriented toward patients.

What did catch my eye was the call for proposals -- among the different presentation formats was Discussion Groups:



I hope some day a sleep doctor or medical researcher attending one of these conferences would propose a discussion group on the topic we're discussing here.

Perhaps I am living in fantasy land but I would like to see the patient advocacy efforts include studies on why so many people struggle with pap therapy in spite of trying everything they can think of to make it work. Sadly, most doctors want to blame this on insomnia when I think the answer is alot more complex.

The only doctor who came close to taking a shot at this has been Dr. Park, who has theorized that people with UARS have systems that are so sensitive that wearing the mask causes more arousals vs. preventing them. As one who has greatly struggled with pap therapy for 20 months, I wonder if I have UARS in addition to apnea which my 2nd sleep doctor didn't blow off. Could that be the situation with other folks in similar situations?

49er

49er wrote:Perhaps I am living in fantasy land but I would like to see the patient advocacy efforts include studies on why so many people struggle with pap therapy in spite of trying everything they can think of to make it work. Sadly, most doctors want to blame this on insomnia when I think the answer is alot more complex.

Yes!!! 49er, thanks for saying this. I too think the issue is much more complex. And I also think the docs tend to think of the insomnia as the cause of the difficult adjustment. Whereas I tend to think that for a large subset of us with extremely difficult adjustments to CPAP, the insomnia is caused by the difficult adjustment---including an increase in "spontaneous arousals".

The only doctor who came close to taking a shot at this has been Dr. Park, who has theorized that people with UARS have systems that are so sensitive that wearing the mask causes more arousals vs. preventing them. As one who has greatly struggled with pap therapy for 20 months, I wonder if I have UARS in addition to apnea which my 2nd sleep doctor didn't blow off. Could that be the situation with other folks in similar situations?

I too have often wondered if my main problem is UARS. None of my six sleep studies made an attempt to measure RERAs that don't meet either accepted criteria for hypopneas. But on all six of my sleep studies, the hypopneas have all be alternative standard hypopneas with an arousal rather than an associated O2 desat of 3% or more.

When scientists have a meeting, they do not invite the lab rats.
We are subjects, as opposed to sentient beings with valuable insight and opinions.
The rat that bites gets tossed in the dumpster; if said rat speaks, it is dissected.

And I also think the docs tend to think of the insomnia as the cause of the difficult adjustment. Whereas I tend to think that for a large subset of us with extremely difficult adjustments to CPAP, the insomnia is caused by the difficult adjustment---including an increase in "spontaneous arousals".

And thank you for saying this RobySue as you are right on target in my opinion. The question is how to stop those increase in spontaneous arousals. Meds and OTC supplements haven't worked for me to date and you seem to be having the same problems.

49er

chunkyfrog wrote:When scientists have a meeting, they do not invite the lab rats.
We are subjects, as opposed to sentient beings with valuable insight and opinions.
The rat that bites gets tossed in the dumpster; if said rat speaks, it is dissected.

Chunky,

You have a wonderful unique way of making your point. You are right on target with this.

49er

The relationship between insomnia and CPAP adjustment is no down complex and bidirectional. Without a doubt, for people like me, CPAP disrupts sleep. On the other hand, when it's not disrupting my sleep, it appears to help it. And that's not even taking account the aerophagia, which at last use, was occurring at even 7cm of pressure. Then what we do about the poor sleep (e.g., stimulants, naps) undoubtedly affects the next night, etc. And that's without considering any other cause of poor sleep, such as PLMS/RLS and other issues.

About Dr. Park's hypothesis that people with UARS have more hypersensitive systems and tolerate CPAP less well, and although he says that Dr. Guilleminault told him so... I can find no evidence that this has been studied by anyone and proven so. In fact, Dr. Guilleminault does not appear to me to believe UARS and OSA are diagnosed together (i.e., if you have OSA, you are more severe than UARS). Personally I do not make much of this categorical system and I wouldn't waste time wondering if you have UARS if you have been diagnosed with OSA (one lab's OSA is another labs UARS...) and, as far as I have read, it makes no difference for treatment.

I have worked in labs in a University setting. I must say that I agree with the comments my post generated. It is indeed sad that so many of the illuminati are so self absorbed that they do not take the time to learn from us.

SleepingUgly wrote:The relationship between insomnia and CPAP adjustment is no down complex and bidirectional. Without a doubt, for people like me, CPAP disrupts sleep. On the other hand, when it's not disrupting my sleep, it appears to help it. And that's not even taking account the aerophagia, which at last use, was occurring at even 7cm of pressure. Then what we do about the poor sleep (e.g., stimulants, naps) undoubtedly affects the next night, etc. And that's without considering any other cause of poor sleep, such as PLMS/RLS and other issues.

About Dr. Park's hypothesis that people with UARS have more hypersensitive systems and tolerate CPAP less well, and although he says that Dr. Guilleminault told him so... I can find no evidence that this has been studied by anyone and proven so. In fact, Dr. Guilleminault does not appear to me to believe UARS and OSA are diagnosed together (i.e., if you have OSA, you are more severe than UARS). Personally I do not make much of this categorical system and I wouldn't waste time wondering if you have UARS if you have been diagnosed with OSA (one lab's OSA is another labs UARS...) and, as far as I have read, it makes no difference for treatment.

Hi SU,

Sorry I wasn't clear but I realize that Dr. Park's hypothesis has not been provable. But sadly, many times in medicine, there is a group of people who don't fit the conventional norm and suffer greatly because physicians have no advice to offer them based on the lack of provable theories. At least, he made an attempt to throw out a theory that doesn't come across as blaming the patient.

I also realize the treatment for UARS is the same as for pap therapy. But again, if that means having it is due to having a very hypersensitive system, I think it is important for people to know that so they don't go blaming themselves for pap therapy failures and perhaps may decided to move more quickly to see if a dental device would work.

49er

Like diabetes, controlling apnea depends at least as much on the patient as on the physician and suppliers.
It is a pity the current treatment paradigm does not seem to acknowledge this.
In diabetes, the consumables (test strips) require only a few seconds of effort, producing an endless cash flow. (when used)
Pillows and cushions can provide a similar cash flow for providers, but more effort is required of the patient;
and more effort is required of the provider as well.
The mask must FIT, the flow generator must provide positive feedback, ideally: comfort, and refreshing sleep.
In the absence of immediate and overt benefits, the patient needs at least SOME feedback;
--like numbers, or charts showing benefits otherwise difficult to perceive viscerally.
For example, insomnia and aerophagia remain a problem, and yet many here continue treatment,
based on more subtle indicators that it is either a good idea to continue, or a worse idea to quit.
It is unfair to expect the raw determination and the faith that keeps a few going; many do not have that in them,
especially after years of little or poor sleep. There needs to be additional support for ALL apnea sufferers.