Sometimes It Takes a Doctor

[Grego]

Hello,
I am not a doctor; I don't even play one on TV. I have sleep apnea like all of you, and mine is coupled with an inability to get the sleep I need each night. This causes me to do something while driving that is somewhere between falling asleep and passing out. This usually happens when I am driving on I-95 at rush hour and has resulted in several near collisions.

This is not a "Woe is me" message. This is a hopeful message to all of you who have similar, and worse, challenges to PLEASE see a qualified medical professional and not rely on submitting periodic graphs or episodic symptoms to this site for evaluation.

There are many well meaning folks on this site, and a lot of their information regarding equipment and experience with it is very valuable. However, I really cringe when I see the apnea and CPAP machine setting advice that they offer on the scant information that is provided.

After several false/nerve racking starts with an incompetent sleep center and lackadaisical doctors, I finally located an outstanding sleep center and extremely knowledgeable sleep specialist. While I closely monitor my stats on a daily basis (Respironics Encore Viewer 2), I have learned from my doctor and his team that the charts and graphs represent only a small segment of my diagnosis.

Other factors affecting our sleep quality, or lack thereof, include, but are not limited to:stress, diet, weight, age, what and when we ate before going to bed, the amount of sun we get each day, other medications we take, even the diameter of our windpipe. My doctor has reviewed two identical charts from different days and has arrived at two different conclusions based on other mitigating factors. It truly has been an education for me, and I have learned to lower my AHI index to around 3.1 by paying attention to all the peripheral influences to which I had paid so little attention in the past.

My sleep program presently includes melatonin, provigil (a story in itself) specific sleep and wake times, required exposure to sunlight each day and stress reduction techniques. Other steps are on the way.

So in my own verbose manner I wanted to get across my belief that to really control apnea and get our lives back, we need a comprehensive program and a sympathetic and committed sleep center team. I apologize if I came across as preachy or a know-it-all; I am neither.

If you are in the Philadelphia area and would like the names of the doctors and sleep centers I have experienced (both excellent and horrible), please send a PM and I'll get back to you at my earliest convenience. I am in no way connected to any medical group or hospital.

This is all I have to say. It is not my intention to start a flame war or or cause any other friction, which is why I omitted names.

Thanks all.

[patrick_a]

Great post.

Thank you.

[kteague]

Finding a sleep center/doctor that you can have confidence in is a fantastic thing. I eventually did, but only AFTER most of what I needed to know I'd already learned here. My prior doctors were of no help. Not everyone has the means to doctor shop, whether that's due to location, insurance restrictions, or whatever. If my last doctor had been my first doctor I might have never felt a need to go searching online for answers. For those whose options are limited, the help here can be literally lifesaving. I do understand your concerns, for there are always going to be those outside the garden variety OSA or with co-morbidities either undiagnosed or unstated. And we've seen a few who obviously have no business making any treatment related decisions on their own.

Congrats on finding a doctor you trust. Was wondering if the centrals in your reports were resolved.

[djhall]

Grego,

I certainly appreciate you sharing your perspective and experience with the group. Certainly there is a risk involved in self-treatment without the knowledge and resources of a competent medical staff to work with.

However, I still think it is fantastic that people share their knowledge and experience with people who are self-treating because there is another side to this story. For a great many people the alternative to self-treatment is not a doctor's treatment. For us, the only alternative to self-treatment is no treatment at all. Just because people may not have access to the medical system shouldn't mean they are also denied access to available treatments they could otherwise manage to obtain.

[Black Shampoo]

I think it really is a balancing act. Sleep Apnea is much closer to something like diabetes when it comes to management; there are just too many variables at play, and the goal post for therapy is always moving in response to what the body is doing. The current approach of "one sleep study every few years, resulting in one pressure, now go away and don't bother the doctor" is simply no longer acceptable. Patients have to be active in their self-monitoring, just like diabetics have to check their own blood sugar and modify their behavior, dosages, etc. in response. At the same time, there's no support infrastructure in place to properly enable and educate patients about this stuff, and I've seen a lot of...hmm...interesting approaches by people on these forums that border on magical thinking and paranoia.

I personally had a real ass-clown of a sleep doctor who stuck me with a brick machine, threw up his hands and shrugged his shoulders when I suggested that it didn't seem to be working for me after months, and just said "well, it should be. Deal with it." And that's with the best health insurance that you can get in this country. Now I'm unemployed and have no health insurance, but I'm feeling better than ever before because I bought my own APAP, am monitoring my data, and making all sorts of tweaks in response to it that are resulting in better treatment.

[DreamDiver]

Grego, I wish we could all get the same excellent care you have received. Unfortunately, sleep centers are all a little different. It does seem to come down to finding a doctor that has less interest in patient volume and more interest in patient therapy. Some doctors are Michelangelos. Others are Andy Warhols. Some aren't even good Andy Warhols. Here's to finding the right doctor.

[Stormynights]

There are also some that don't even have a doctor at all.

[ChicagoGranny]

You insist we see a sleep doctor and then you say, "sometimes",

Sometimes It Takes a Doctor

You insist we see a sleep doctor and then you tell us how bad of an experience we may have,

After several false/nerve racking starts with an incompetent sleep center and lackadaisical doctors

You have negative things to say about the forum and you add,

Other factors affecting our sleep quality, or lack thereof, include, but are not limited to:stress, diet, weight, age, what and when we ate before going to bed, the amount of sun we get each day, other medications we take, even the diameter of our windpipe.

which shows you don't read the forum or you overlook the many detailed discussions in the forum on these subjects. And what is this "even the diameter of our windpipe"? That is no "even", it is a primary cause (Although spoken by you in the vernacular not using medical terminology.).

Now you don't want us to use "periodic graphs" but you openly state it is important to your own therapy,

I have learned to lower my AHI index to around 3.1

I am skeptical about what your doctor has done to give you a good therapy if you still need "turn on/turn off" substances:

My sleep program presently includes melatonin, provigil

Well no, I am more than skeptical. The need to ingest these two substances is clear evidence that your sleep hygiene and CPAP therapy has not been optimized by your medical professionals.

So in my own verbose manner I wanted to get across my belief that to really control apnea and get our lives back, we need a comprehensive program and a sympathetic and committed sleep center team.

Well my husband has about 15 years experience and I have 8 years experience with sleep doctors/sleep centers (all AASM accredited) and we never got from them anywhere near a comprehensive, sympathetic and committed treatment like we found for free at cpaptalk dot com. BTW, one of the sleep centers encouraged my husband's use of cpaptalk dot com as part of his treatment team.

When your treatment reaches a level of effectiveness where you no longer deem it necessary to ingest melatonin and Provigil, then why not come back and give us some advice?

[BlackSpinner]

Only if you can find a doctor that actually knows what you are talking about.
Many people never actually get to see the sleep doctor and if they did the doctor is only interested in the AHI - if that is good then you are cured. Many don't even know or care what machine or mask you use and many are very interested in making money off your therapy to the point of denying the patient the right to look at their own data.

Sometimes it takes a forum instead, many times it takes a forum instead.

[DeadlySleep]

Has your "outstanding sleep center and extremely knowledgeable sleep specialist" told you that this

inability to get the sleep I need each night.

can easily be caused by this

provigil (sp)

?

[Wulfman...]

Sometimes it takes a doctor.......and sometimes (more often) it only takes some "common sense" or words of advice and experience or suggestions......for new users to get their therapy under control.

On a fairly recent trip to my (family) doctor's office, the nurse (?) who was filling out the routine questionnaire mentioned that she was also a CPAP user. So, I attempted to question her about the equipment she was using.......and she was totally clueless.......she relies on her DME for supplies and had no idea about what she was using.

"Preachy"? Actually, the words "arrogant" and "condescending" came to my mind.

The vast majority of folks can't afford to "doctor shop" and in the category of "sleep doctors" often have a very, very small selection to choose from. And, then, it's like anything else.......you don't know what you've got until you have something to compare it to. Doctor shopping in this medical category is a very expensive way to find one.

Eight years ago, I only had ONE sleep doctor and sleep lab within one hundred-plus miles to choose from. And, even at that, the sleep lab data was shipped to another facility over 100 miles away to be analyzed. Basically, all the local pulmonologist (masquerading as a sleep doctor) did was to write out a prescription......which was also FUBARed, but was enough to get my equipment from CPAP(dot)COM.

There have been many, many times when we've suggested to the users that they NEED to consult with their doctors on some of the more complex issues. But, lots of this therapy is not "rocket science".......it's just air.......fine-tuning the amount of incoming and eliminating excess leakage. Advising a person in tweaking their pressure a centimeter or two is no worse than a doctor prescribing an APAP/Auto in a full range of pressures. THAT is borderline "malpractice" in my opinion.

There have also been numerous postings on the forum where some of the DMEs had incorrectly set up the equipment for the users.

There are many similarities between this therapy and what people with Diabetes have to deal with. However, the "patient education" between both therapies is a world of difference apart. It always amazes me that this therapy has such a low success rate and the manufacturers, doctors and DMEs try to treat the XPAP users as too dumb to understand it. But, yet the patients with Diabetes are expected to be able to understand and adjust the medications they inject (or take orally) into their bodies.


Den

.

[zoocrewphoto]

Some of the most useful advice I have gotten cannot come from a doctor or DME unless they have used cpap themselves.

For example, how to get my mask adjusted correctly. When a mask is leaking, you can post here and tell what the mask is doing, where it leaks, and people will have advice on how to adjust it to make it fit better. Most DMEs say to tighten it which is the absolute wrong thing to do.

Ramp. Most people seem to struggle with a pressure of 4 or 5, yet a lot of DMEs send us home with our brand new machine starting out at 4 or 5 as either ramp or the range for auto. This is one thing that can really keep people from succeeding, yet they don't seem to even know about it.

Comfort issues can stop a lot of people from using their cpap, but how many doctors and DMEs know how to help with this details?

We need doctors to diagnose us, rule out other issues (or treat us for them too), prescribe the machine, etc. And help us when we don't improve. But we need people who have been there, done that, to help us with all the little details that could kill our usage if they don't get solved.

[caffeinatedcfo]

My sleep doctor has had nothing to do with my CPAP success other than issuing the script for an APAP machine. THIS FORUM helped me achieve optimal treatment and I am feeling great, not almost causing accidents, not needing naps, and consistently seeing my AHI < 1. I practice good sleep hygiene techniques which I learned from the Mayo clinic's website for FREE. I take absolutely no pills to help me sleep.

I agree that some complex cases do require medical professional consultation, but there are a great many of us that found optimal CPAP treatment with nothing more than a desire for a better life and some friendly, compassionate advice from very experienced users on this forum.

[Space Oddity]

This is all I have to say. It is not my intention to start a flame war or or cause any other friction

The infamous "hit and run" approach. State an opinion highly critical of the forum and demand no counterarguments.

Glad to see this approach is not accepted in the fine forum.

[archangle]

Yes, a good doctor is great. Unfortunately, they're very hard to find.

Some really bad doctors have great bedside manners and are really good at convincing their patients that they know what they're doing.

You have to be a real CPAP expert and do a lot of research yourself before you can figure out if your doctor is competent or not. Without such research, how would you know:

1) Your doctor should insist on a data capable machine. Most do not.
2) Your doctor should review the data your machine collects every night, not just look at one night's PSG results. Most do not.
3) Your doctor should look at the AHI and other data, Most of the ones who look at the data don't look in detail.
4) Your doctor should know techniques to make CPAP easier and more efficient. Most don't bother.
5) Your doctor should understand how to solve CPAP and apnea problems. Most are simply appliance salesmen who leave all the details to the DME.

You also need to know what you have to put up with and when you need to insist that the doctor help you fix. Most doctors aren't very good at this, and downplay the problems their CPAP patients have and tell them to tough it out.