Are there competent sleep doctors?

[Bearly Functional]

I discovered this web site today, and am sorry I didn't know about it five years ago. I am amazed at how knowledgeable many of the posters are, and how much more they seem to know than the supposed experts.

I've had sleep apnea for at least six years, maybe more than ten. I was having atrial fibrillation episodes and my cardiologist suspected it. I don't remember whether it was my cardiologist or my primary care doc who referred me to the first sleep clinic, which was run by a "sleep specialist doctor."

The first sleep study indicated severe sleep apnea, which I am sure is true. The first mask setup that was tried involved a hard plastic junction for the straps, which hurt so much that I couldn't sleep. The technician offered me nasal pillows, which had all fabric headgear. I was able to sleep some. In the study document the technician made the comment "patient likes nasal pillows." In fact I didn't like them; they were simply not painful enough to keep me awake.

After the study I was prescribed CPAP at 16cm pressure. With a 45 min. ramp up time from 4cm I was able to get to sleep, but I would usually wake up bloated after 4 or 5 hours and shut the machine off. Once I was so bloated with air that I was incapacitated for half a day. I complained to the doctor about the pressure and told him it was intolerable. Instead of offering to explore adjustments to the therapy he told me of a patient whose wife reported that he was much more alert and focused after his first night on CPAP, but died of a stroke the following night when he didn't use the CPAP. There was no mention of any risk factors for stroke that I might have in common with the deceased patient. I told a friend who is a respiratory therapist with twenty plus years experience about all of this and he said that the doctor seemed to be a quack.

A few months later I was referred to an ENT specialist for a second opinion on my SA. I told him of the intolerable 16cm pressure, and he said that the sleep lab that did my study was known for getting poor information about sleep position. Another study at a different lab was done, and the doctor prescribed CPAP at 16cm pressure!! I complained to the doctor, asking why he prescribed 16cm. He said that it was what the lab recommended, and maybe they were trying for perfection (no apneas and no hypopneas?). I asked what was the point, since he already knew that 16cm was intolerable to me. He sighed and admitted that the medical profession was still in the dark ages in learning how to manage SA.

At some point I was prescribed a nasal mask, because my nostrils were raw from the nasal pillows. When I tried the new mask I complained to the technician that it was too small, and was told that it was a standard size large. I didn't think to point out that I apparently don't have a standard face.

That second study was done just over five years ago. Last week I had yet a third study at yet a different sleep lab. When I was making the appointment I mentioned that it was my third try at getting help, and my contact assured me that the therapist who would do the study has more than thirty years experience in the occupation. I took my mask and machine to the lab with me and showed them to the RT, who appeared to be in his late fifties. He placed the mask over my nose and immediately remarked that it was too small. He tried three different masks on me and said that the largest might not be big enough, but that maybe it would be adequate. I will say that it was the least uncomfortable of all that I've tried.

I have the results of this latest study now, and am relieved to see that the primary recommendation is for a "trial of Auto-CPAP set at 5 to 14 cm H2O with heated humidification and a large Activa mask." I will be contacting the doctor for a consultation and a prescription. I think that the RT probably knows more about what I need than the doctor does. I have already learned that the recommended gear are available on the web for less than $700, assuming that my current machine with Cflex must be replaced.

What I've learned from my experience is that the respiratory therapist is crucially important. My latest one has been committed to the vocation for thirty or more years, and told me that he is constantly updating his knowledge. What I've learned from reading on this forum is that I needn't buy anything from the lab that did the study, or any DME supplier that the lab steers me too. I may need to be persistent to the point of being aggressive in order to get the care that I need, at something approaching a reasonable price. Thanks to all who have posted on this forum for educating me, and demonstrating that people who share their experiences and knowledge can make a positive difference.

I apologized for being so long winded. The frustration has been building up in my mind for five years.

[jweeks]

I have the results of this latest study now, and am relieved to see that the primary recommendation is for a "trial of Auto-CPAP set at 5 to 14 cm H2O with heated humidification and a large Activa mask." I will be contacting the doctor for a consultation and a prescription. I think that the RT probably knows more about what I need than the doctor does. I have already learned that the recommended gear are available on the web for less than $700, assuming that my current machine with Cflex must be replaced.

Hi,

The APAP machine set at 5 to 14 is to try to figure out what your real world pressure levels are. Unless you need a very wide range of pressures, you can probably go back to your CPAP machine once you know what that pressure level is. That leaves you two options:

1) Rent or borrow an APAP for the test, then set your CPAP to that pressure level for long term use.
2) Buy an APAP, then keep your CPAP as a backup and travel machine.

If you end up on an APAP, you don't want to run long term at 5 to 14. The reason is that the auto machine takes a while to ramp up, and if it has to climb too far too fast, it will not be able to stomp on your events. Rather, you want to keep the pressure set in a very tight range, such as no wider than 5 cm. You probably do want the 5 to 14 range just for the test. In fact, if you were on 16 before, you might want to set it at 5 to 20, or maybe even a little higher on the bottom number, 10 to 20. Once you know the final numbers, you then tighten up the range for long term usage.

-john-

[Bearly Functional]

I have the results of this latest study now, and am relieved to see that the primary recommendation is for a "trial of Auto-CPAP set at 5 to 14 cm H2O with heated humidification and a large Activa mask." I will be contacting the doctor for a consultation and a prescription. I think that the RT probably knows more about what I need than the doctor does. I have already learned that the recommended gear are available on the web for less than $700, assuming that my current machine with Cflex must be replaced.

Hi,

The APAP machine set at 5 to 14 is to try to figure out what your real world pressure levels are. Unless you need a very wide range of pressures, you can probably go back to your CPAP machine once you know what that pressure level is. That leaves you two options:

1) Rent or borrow an APAP for the test, then set your CPAP to that pressure level for long term use.
2) Buy an APAP, then keep your CPAP as a backup and travel machine.

If you end up on an APAP, you don't want to run long term at 5 to 14. The reason is that the auto machine takes a while to ramp up, and if it has to climb too far too fast, it will not be able to stomp on your events. Rather, you want to keep the pressure set in a very tight range, such as no wider than 5 cm. You probably do want the 5 to 14 range just for the test. In fact, if you were on 16 before, you might want to set it at 5 to 20, or maybe even a little higher on the bottom number, 10 to 20. Once you know the final numbers, you then tighten up the range for long term usage.

-john-

John,

Thanks for your suggestions. It will help me to be forearmed with this knowledge when I go for my consultation.

Paul

[Julie]

Hi - I would say the bottom # (5) will be impossible to breathe at, and would certainly move that to at least 7 (the majority of us seem to come out at around 10, with a spread of 8 to 12), which I doubt very much will be a problem at all.

[Rogue Uvula]

You probably do want the 5 to 14 range just for the test. In fact, if you were on 16 before, you might want to set it at 5 to 20, or maybe even a little higher on the bottom number, 10 to 20. Once you know the final numbers, you then tighten up the range for long term usage.

-john-

To concur with John, I had my first appointment with a sleep doctor today and she suggested that while we are trying to figure things out, I should change my APAP from 7-10.4 to 7-20. The machine won't go to 20 unless it needs to, so there is no harm in setting it that high.

To answer your original question. I live close enough to Atlanta to have a tremendous pool of doctors. I have learned to trust my instincts and move on as soon as I feel a doctor is
1) Not especially competent in the field I need help with or
2) the doctor does not retain "object permanence" - IOW, I don't exists except for the duration of the 15 minute appointment and the next time I see the doc, they have no memory of me. I really don't expect them to remember all of their patients, but I do expect them to at least scan their own files on me before they come into the exam room!

Probably the most amazing example of this is with my wife. She had (and seems to have beaten!) cancer. It is extremely rare - in her eye (where the rods and cones are), but called a melanoma. She went to her GP and when she told him, he exclaimed how he'd never heard of that! Six months later, he asked her about any illnesses or problems and she told him again - he exclaimed how he'd never heard of that! Fast forward another 6 months and ... you guessed it!

[cobra4x4]

The machine won't go to 20 unless it needs to, so there is no harm in setting it that high.

Wrong if your mask is leaking then you could have big problems, The preferred range is usually 2cm below and no more than 3cm above your titrated pressure.

[SleepingUgly]

Was your apnea much worse in REM than NREM? Worse on your back than not on your back? If so, an APAP may be quite good for you long-term because it may reduce your aerophagia (the bloating) by only having you at a higher pressure when you need it and otherwise allowing you to spend the night at lower pressures.

[Rogue Uvula]

The machine won't go to 20 unless it needs to, so there is no harm in setting it that high.

Wrong if your mask is leaking then you could have big problems, The preferred range is usually 2cm below and no more than 3cm above your titrated pressure.

Thanks for that! My new doc just lost a few points!
Part of my problem is I don't have an accurate titration pressure, but looking at the data, It doesn't look like my machine is bumping up against the 10.4 limit I set. I'll switch it to 11 and keep an eye out to make sure I never hit 10.4 (10 is about as high as I've seen).

[snoringstop]

Thanks for the suggestion.My new doctor have better in every point of view.He has not missing any tips.I think it's true that if you have suffering the linkage of mask,then it might be a great problem in later,rather that machine runs quite good and effective.

[Billy6]

No, they just work their butts off in high school, college and medical scool, and run up $100,000+ in student debt, just to be morons, don tey?

[nanwilson]

Morning
I totally trust my sleep doc...he's actually a neurologist but he has sleep apnea too When he was diagnosed with sleep apnea he discovered there was little or no help in our area, so he opened his own clinic. Now he keeps up to date on all the info as he is not only helping himself but is helping his patients even more. The clinician also has osa
Cheers
Nan

[JohnBFisher]

I won't go into specifics of your machine and mask. I see that others are doing a very good job.

However, I do want to address your first basic question: Are there competent sleep doctors?

Though I am more than happy to say the answer is a resounding "Yes!", I offer it with the caveat that not all doctors know more than the basics.

First, not all doctors who treat patients with sleep problems have specialized in sleep medicine. This is a fairly new field of study.

Some of the sleep doctors come from pulmonary science. They tend (due to their specialization) know about neurological issues and their impact on sleep. These doctors thus tend to discount folks who struggle with central sleep apnea. And if they are less than adequate they will not fully understand the impact of the cardiac system on sleep (though a good pulmonologist should understand it).

Some sleep doctors come neurological science. Those doctors tend not to fully appreciate the impact of cardiac system on sleep. And they may not fully understand issues that someone with COPD faces.

Good doctors, who reach the edge of their knowledge, will refer you to a specialist, rather than keeping you as a patient. Unfortunately, if the doctor does not truly understand the "edge of their knowledge", they will not understand when it is time to refer you to a specialist.

Second, this is not an unusual situation to doctors and/or sleep medicine. Does your auto mechanic know how to work on a hybrid vehicle? How about an all electric vehicle? Does your mechanic really KNOW how to repair a transmission? Most don't. A few VERY good mechanics can do it all. Most mechanics we deal with tend to be generalists, who know when to "farm out" the specialization work.

Third, you really want to look for a doctor who has specialized in sleep medicine. They don't have to go through a program known as "sleep medicine studies". But they need to know enough to pass the tests for the American Board of Sleep Medicine (at http://www.absm.org/). Think of this as the certification that your mechanic takes. Someone who is "board certified" studied enough to pass the board exam and SHOULD know enough to handle most issues. They will more than likely also know enough to know when they need to refer you to a specialist.

Also, though a sleep doctor may know the basic theory behind using a mask, if they have not fought with one, they may not understand issues that can surface. This is where a good sleep doctor would refer you to your Respiratory Therapist, who should have the stronger practical knowledge. Again, it requires the willingness to acknowledge limitations. This is a problem for many of us - not just doctors.

My sleep doctor is board certified. He's a neurologist who specialized (through study and practice) in sleep medicine. He's the first sleep specialist I've had, who knew how to check for problems with central sleep apnea. He understood enough about various systems to rule out heart issues. He also helped me address those problems. I am more than happy to recommend him.

Most of the other sleep doctors I've had do a fine job with the "standard" cases of obstructive sleep apnea. But most of them simply did not know how to deal with the neurological issues that I face. So, in my case, a board certified sleep specialist was key to attaining effective therapy.