Dr. Krakow's book

Exactly the point we have been making to industry experts for almost 5 years now, but we remain disappointed in the algorithms that have been devised to this point in time.

When more precise algorithms can acquire "all" the data necessary to truly see the "area under the curve," that is, every nanosecond of breathing, and then have it respond to continuously normalize both the inspiratory and expiratory flow curves, our capacity to help patients, and the capacity for patients to help themselves, will dramatically improve.

When I said simple, I meant the ideas of not looking at the clock, being done with your day, etc.

BarryKrakowMD wrote:Exactly the point we have been making to industry experts for almost 5 years now, but we remain disappointed in the algorithms that have been devised to this point in time.

When more precise algorithms can acquire "all" the data necessary to truly see the "area under the curve," that is, every nanosecond of breathing, and then have it respond to continuously normalize both the inspiratory and expiratory flow curves, our capacity to help patients, and the capacity for patients to help themselves, will dramatically improve.

Well, that MAY be true, but.....

BarryKrakowMD wrote:2. Interpretation of Findings.There's no way for any of us to know what a data download really means, and there is no way for us to know whether an original titration was reliable or not. To reiterate, the algorithms dealing with flow limitation (UARS) on these machines have not reached the state of "rocket science." They may point us in useful directions, but there is no way to look at them and declare, "your data looks good, so you don't need another titration." And, if we don't know the type of lab where the original titration was conducted, the titration style of the sleep tech and supervising physician, the scoring technique of the lab, the aggressiveness in titrating out flow limitation, the amount of consolidated REM generated, and the stability of the oxygen baseline (irrespective of desaturations), then we cannot formulate any specific theories on the accuracy of the first titration.

If it's possible that BOTH systems (sleep labs and machine algorithms) have flaws, I'd be inclined to go by my machine statistics over a period of time, rather than a one-night sleep lab experience. Sleep lab titrations are expensive.....machines are not (relatively speaking).

I would THINK that the manufacturers of these machines spent a great deal of time testing their algorithms against actual sleep-lab data before selling them to the public and (theoretically) promoting their capabilities to some of the doctors that do believe in them.

My experience was that I was grossly mis-titrated in my sleep study. I'm sure that based on that night, my relationship with my pulmonologist and the horror stories I've read on the forums over the last three years has affected my views concerning this field of medicine and the reliability of sleep labs and "sleep doctors".

It seems to me that more training and education needs to be done with regard to the medical professionals who should in turn educate the patients to be able to manage their own therapy. It's done with diabetics all the time. By the way, I'm a type 2 diabetic and trying to control my glucose levels without medication is MUCH harder than CPAP therapy.


Den

Wulfman wrote: If it's possible that BOTH systems (sleep labs and machine algorithms) have flaws, I'd be inclined to go by my machine statistics over a period of time, rather than a one-night sleep lab experience. Sleep lab titrations are expensive.....machines are not (relatively speaking).
...
My experience was that I was grossly mis-titrated in my sleep study.

Me too. I slept fitfully, had no REM sleep at all till just before 6am whereupon the tec immediately woke me up *because* I had gone into REM. Not sure what the rationale of that was, she said it would be a more pleasant awakening for me, but it deprived us of valuable REM OSA data.

Di

You make excellent points, and I cannot argue one bit about the perspective you were logically inclined to embrace given the poor experiences you suffered through at what may have been a poorly run lab or perhaps from an inexperienced sleep tech.

So, I appreciate the theoretical nature of my point of view, given not only your complaints about sleep labs and sleep techs, but also given that I and many other members of the American Academy of Sleep Medicine are quite distressed by the lack of high standards observed in many clinical sleep facilities.

All things being equal, most SDB patients will gain considerably more information when undergoing a great titration conducted by a great sleep tech. And, I think it's important to recognize this potential as the "gold standard" even if regrettably it is not immediately available.

Pragmatically, I full appreciate the dilemma a sleep patient may be stuck with, and therefore it makes perfect sense to me that one would turn to the "data download" path for help. I accept that and applaud the initiative. I just would like to persuade more people to access the data as a useful asset, but not to confuse it with gold standard information.

In closing, I cannot begin to describe my frustration about the lack of access to great sleep techs and sleep labs. These feelings were a considerable part of the fuel that motivated me to write my book. But, I candidly admit that a book is neither a titration nor a data download.

Rest Wishes!

Thanks to this forum and its members (especially Dr. Krakow), I feel educated, armed, and empowered to request another titration sleep study. It’s been nearly a year since my initial titration; and since then, I have a new insurance provider and my pressure setting has been changed three times with no significant impact. I still wake up countless times each night, have occasional nocturia and aerophagia, and never feel rested in the morning. My numbers look good, but they are meaningless if I am awake half the night and feel as I do. (Mind you, I’m not against data analysis as I have a background in statistical process control and data-driven change management, but I have come to place a greater value on the qualitative aspect of my therapy.)

Because I was ignored and misdiagnosed by my primary doctor for so many years, and suffered a great deal as a result, he has become more responsive to my needs since my SDB diagnosis. Although many have advised me to lose this doctor, I think the timing is right to ask him for a referral to one of the half-dozen members of the American Academy of Sleep Medicine in my area who accept my insurance coverage. Even if it takes months to get an appointment, I believe it will be worthwhile. From there, I will ask for another titration study at a qualified sleep lab with a qualified sleep tech. And hopefully, I’ll be off and running with the right machine at the right setting.

Again, thanks to all who contribute their time and knowledge to this forum. Your collective experience is vast and tremendously helpful to me, albeit a big investment of my time.

Finally, many here have expressed the need for more and better training in the sleep medicine field. I couldn’t agree more. As an instructional designer, I work with subject-matter experts to build technical training for adults. I’ve had a long career in high technology, business consulting, academia, and medical technology. I used to work on the forefront of change, in a proactive way, but now the impetus behind training seems reactive and remedial. Over the years, I’ve seen training departments disappear, budgets diverted to executive compensation, and workers who need retraining and retooling laid off and jobs outsourced. It’s obvious to me that these measures are not cost-effective as more and more failures in our society are rooted in ignorance and lack of training.

One of the most critical areas of training regards sleep technologists who perform the sleep studies. I believe a very important development is emerging in our field involving licensure for sleep techs.

In most states, sleep techs have no licensure, and they are supervised solely by respiratory therapy boards or other state agencies. This year finds a number of states attempting to offer legislative bills to create a licensure for sleep techs. When the techs have a license, it will create many additional opportunities for them in terms of their education and maintenance of skills, and along with it, greater responsibilities. I think licensure could have marked impact in upgrading the technologists' expertise in conducting titrations.

If you live in a state that is looking at this issue, you can be very supportive by writing letters to state legislators in favor of sleep tech licensure bills.

When I wrote my book, I was greatly influenced by my interactions with sleep technologists, particularly Dominic Melendrez at http://www.qualitysleepsolutions.com, and I sincerely believe that sleep techs would benefit a great deal from the tools provided in the book to enhance their capacity to perform better titrations and to facilitate a more comfortable and valuable experience for the patient. We developed several of these tools with the assistance of our sleep techs in our sleep lab, so we know that techs can apply them to improve the lab experience.

I'm midway through this book, and so far only have one minor question that has been starting to bug me. There are repeated references to the fact that most people with disturbed sleep tend to be of "above average" intelligence. Where does that come from? Have any studies been done, or surveys taken?

As flattering as it is to think that my sleep problems identify me as a smart woman, I am curious as to what the conclusion was based on.

Thanks,
Susan

Perchancetodream wrote:...... There are repeated references to the fact that most people with disturbed sleep tend to be of "above average" intelligence. .....

Well I used to test in the very high range on IQ tests, SAT, GRE and GMAT.

If I took one of these tests after all these years of untreated sleep apnea, the score now would probably frighten me.

Rooster, wanting to improve IQ to 80.

I just got the book today, and have started to read it. Very enjoyable so far.

Perchancetodream wrote:I'm midway through this book, and so far only have one minor question that has been starting to bug me. There are repeated references to the fact that most people with disturbed sleep tend to be of "above average" intelligence. Where does that come from? Have any studies been done, or surveys taken?

Good question.

If that's so, I'd wonder if it's simply a reflection of the better educated possibly having better paying jobs -- having insurance, or being well off enough financially to go to doctors to be checked for anything at all. Or perhaps being more inclined to take an active interest in their own health, including getting checked out for sleep problems.

Perchancetodream wrote:
I'm midway through this book, and so far only have one minor question that has been starting to bug me. There are repeated references to the fact that most people with disturbed sleep tend to be of "above average" intelligence. Where does that come from? Have any studies been done, or surveys taken?

Awww. Come on guys, we don't need surveys to confirm our above average intelligence do we? After all, it seems that folk with almost no technical nouse can tell us we're sick, and should pay them massive sums for machines that will make us feel better. The fact that we pay up, and only complain to one another instead of getting out there and making a huge fuss to effect real reform of what should be a service, but which has become an industry confirms our intelligence levels, surely. Sadly, I'm not sure which direction the confirmation takes us!!!!

Whoops, I've probably just peeved a whole bunch of lovely, genuinely caring people - so perhaps I'd better add in a few smileys

Sorry if I've hurt any feelings, but to describe myself as urinated off would be a significant under statement.

Regards,

Grumpy, grouchy, depressed old GrizzlyBear

There was an interesting discussion about sleep and career success on NPR this morning ... not sure if career success is correlated to intelligence though?

http://www.npr.org/templates/story/stor ... d=18155047

Hiya,

There was an interesting discussion about sleep and career success on NPR this morning ... not sure if career success is correlated to intelligence though?

http://www.npr.org/templates/story/stor ... d=18155047

There's a very lengthy article discussed on another thread which posits a slightly different line to this NPR article - that we do not necessarily all need to sleep for a full night, and at least some of us may only need short sleep and daytime naps. In other words, the idea of needing sleep may be a matter of social conditioning. Further, the point seems to be made that the 'sleep industry' has an interest in promoting the idea that we SHOULD be sleeping X hours per night, and that we need their products to do so.

NOT, mind you, that I am suggesting that we do not suffer an illness - just that the point is interesting.

The whole thing is VERY confusing, and VERY annoying. The issue, it seems to me, is that there is insufficient adequate and reliable and independent research being carried out. While sleep is becoming an 'industry', rather than a service, those with the cash to fund research are the very companies with a specific interest in directing the research towards specific ends.

The thread discussing this is as follows:

viewtopic/t27638/New-York-Times-article.html

Regards,

GrizzlyBear

DreamStalker wrote:... not sure if career success is correlated to intelligence though?

http://www.npr.org/templates/story/stor ... d=18155047

It is a different type of intelligence that makes for most career success. Maybe the concept of Emotional I.Q. has it covered. You have to have a reasonable I.Q. but beyond that you really need to have determination, be persistent, be intuitive, etc.

I thing Rested Gal makes a good point. Also, lower intelligence people probably don't go to the trouble to get a diagnosis and stick with the treatment. I have talked to some in passing and am sure that most of them ignore my advice to get diagnosed.