Sometimes It Takes a Doctor

[Space Oddity]

"on the road in a state that "is somewhere
between falling asleep and passing out."

Many of us know what severe sleep deprivation is like. Someone in this condition who is taking melatonin in an attempt to put himself to sleep and Provigil in an attempt to make himself awake would qualify for mentally ill designation.

Grego's professional medical sleep team is not getting good results. Don't allow him to influence newbies in the forum.

[Pugsy]

You know guys if OP had just complained about dial a wingin....I really wouldn't have much of a problem with that because I can understand that some people just aren't comfortable with it. They want to think that their docs walk on water and their DMEs right along beside the doc. That's fine if someone wants to feel that way. Not my place to tell them otherwise even if I feel otherwise.

For some reason OP feels that the explanations I offer are a problem and that just totally blows my mind. I say nothing that can't be found else where or figured out with a lot of reading and thought and common sense. I took the time to do the work and research it....most people don't want to take the time and that's fine. They want to fix their problem and want someone else to tell them how to fix it. I don't like to tell someone how to fix something without also offering some education in the process. That's how come my responses are often a bit lengthy. I would much rather that people understand their own stuff and be comfortable with the understanding and make their own decisions on what to do or not do. I can't always be here to spoon feed fixes and I don't like to do that anyway.

This recent thread of Grego's came about because I made some comments in a thread recently where someone did change his pressure but that change was made long before I even saw the first few posts because I have been away for a while having fun with my grandson and his mom.
viewtopic.php?f=1&t=90602&st=0&sk=t&sd=a
and my comments are last in the line....long after the person made changes in his settings.
All I did was explain how and why a little. Just a bit of education and it is the education part of what I do that Grego has a problem with.
Apparently he feels that only medical professionals are "qualified" to analyze these reports and explain things.
And "qualified" is per his own standards. Gotta have those fancy letters after a person's name to be "qualified".
I just didn't think it was any of his business what letters I have after my name and I still don't. They don't mean a darn thing.
Reminds me of the old question....do you know what they call the doctor that graduated last in his class?....doctor.

[DreamDiver]

How many people diagnosed with sleep apnea drop out of treatment because they don't understand and can't get help?
How many people diagnosed and on a forum drop out of treatment?
How much better is treatment when educated people take their treatment in hand?

I'd like to think my odds are better having educated myself and sticking with it than being one of those who listens only to the doctor and walks in lockstep behind the DME or drops out.

Incidentally, if anyone knows actual statistics of this from sleep labs and/or insurance and/or a peer-reviewed study, I would be grateful for a link to that.

[Madalot]

I was going to stay out of this thread, but I want to make a point....

If I hadn't come to this forum, I'm not sure where I would be, but I can promise it wouldn't be good.

When I first got the Trilogy, my doctor & RT (doctor was pretty good, but RT was an idiot) decided to set it up with a target Tidal Volume of 600 and the allowed maxium IPAP at 30. It took me ONE night to realize NO EFFING WAY when I woke up with that thing trying to kill me at an IPAP of 27 or 28.

A call to my RT indicated she would ASK if we could lower my Tidal Volume to 575 and the maximum IPAP to 28. Yeah, we get this done but even those settings are horrible. So, we do this again a couple more times, but we're not getting me anywhere other than thinking this Trilogy is going to kill me. Last time RT doesn't respond to me until almost 5pm on a Friday. Let's see - 5pm on a Friday where she needs to CALL my doctor and *IF* my doctor says okay, get a written prescription to change it, then come to my house and actually change it? No way this gets done before Monday, if I'm lucky AND I'm told to use the machine at the HIGH settings until then?

Give me a break.

I got a hold of my doctor on Sunday and she and I agreed to lower the settings A LOT and I told her I knew how to do it myself so we didn't need to wait for the RT. She's thrilled to have a patient that has a little bit of knowledge and understanding of what the hell we're doing here.

My target Tidal Volume NOW is 400 and my maximum IPAP is 23. But the machine almost never gets above 20 anymore. If this is all I can handle, can you imagine trying to cope with 600, 575, 550 etc? And pressures pushing 30?

If not for this forum and the people here sharing their knowledge and experience, I probably wouldn't have continued the damn thing and stopped all treatment completely. The fact that I'm doing okay is credited to this forum, not my medical team.

[caffeinatedcfo]

Anytime someone posts with strong opinions and doesn't bother to offer follow-up intelligent[\i] discussion I write them off. I found this forum seeking support and knowledge and received both in spades. I haven't heard from my doctor since early March when he wrote me a script and (good advice) talked me out of surgery. He seems knowledgeable, has good manners, and gave good advice up front, but he doesn't get involved much after the prescription is dealt.

[Dan6]

Never met a sleep Dr. after I had 2 sleep studies, noticed that there was a different Dr.on the 2 studies. PCP prescribed a brick and after 3 bad months and a successful test on an APAP he wrote a new prescription for an APAP.

I started reading this forum and learned how to understand the data and to change my pressure the right way, in small steps after adjusting to each change. Started at 4-20 and now I am @ 11-14. I explained this to my PCP and how I thought it was easier and safer than controlling diabetes, he agreed and asked why I made changes to both the high and low pressures. He liked my reasoning and asked me to keep my follow up appointments and ask for help if I had any issues.

Three months later at a follow up appointment he apologized for me having to go to the trouble of a trip to the DME for the report that I gave him. I smiled, said I created it at home and he said he had a few patients that he wished that he could send my way to help with CPAP.

Yes sometimes it does takes a Dr. but it always takes personal responsibility and action! Way too many people forget that.

Last night was my first 0.0 AHI, even with a few leaks.....

[DreamDiver]

Last night was my first 0.0 AHI, even with a few leaks.....

Congrats.

[Dan6]

Last night was my first 0.0 AHI, even with a few leaks.....

Congrats.

Wish I knew what caused the 0.0, the only thing that was different is that my wife made a chocolate cake from scratch.

Try getting a Dr. to prescribe that.

[Grego]

OK folks. I assume at this point everyone has thrown all their rocks. I thought I could offer something helpful. Sounds like not. Fair enough - I tried.

The title "Sometimes it Takes a Doctor" refers to my thought that "sometimes" the advice of fellow patients, however sound and helpful, may not be enough.

Finally, to those who wrote their impression that I am negative on this site: in my post I stated that
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.

I still stand by this. It was never my intention to come across as badly as some of you perceived. Sorry I gave that impression.

I won't respond to all the hits. You all have your opinions, and that's quite OK with me. But, in fairness, I restate a few points:
- I still have sleep apnea and also have trouble sleeping. I am in no way holding myself up as some sort of example of what to do and how to go about it.
- I had a very bad experience with the first sleep center and doctor team I used. So I completely understand everyone's comments that good/caring doctors are hard to find. It is why I offered to provide input to anyone in the Philadelphia area who might be interested. I was honestly surprised by how much difficulty many of you have had finding doctors in whom you believe. As a Medicare recipient, I figured I was at the low end of the affordability scale, but I had no idea good docs and sleep centers were that hard to find. My fault on that one.
- I have learned that diagnosing specific sleep apnea problems requires more than simply looking at charts - as several of you have pointed out.
- I fully appreciate that the final proof is a lowered AHI index. How you/we get there fades into second place.

[djhall]

OK folks. I assume at this point everyone has thrown all their rocks. I thought I could offer something helpful. ... The title "Sometimes it Takes a Doctor" refers to my thought that "sometimes" the advice of fellow patients, however sound and helpful, may not be enough.

I think you do have valid point, and one that is worth mentioning and reminding people of. Sometimes more is going on than can easily be managed by people self-teaching and getting advice from a message board. Absolutely.

in my post I stated that
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.

I still stand by this. It was never my intention to come across as badly as some of you perceived. Sorry I gave that impression.

The inference I took from those statements, along with the title "sometimes it takes a doctor," is that you believe we shouldn't be sharing advice here at all or making any adjustments to our own treatment without the specific approval of a doctor. While the title was, "sometimes it takes a doctor," I know I reacted to the position, "It always takes a doctor" or at least "it usually takes a doctor." Hence the outpouring of people sticking up for the positive experiences they have had without it taking a doctor and the value of having this kind of information and advice publicly available.

Sometimes it indeed does take a doctor. I don't know enough to know if yours is one of those cases or not, but since it is your health, your body, and your life, I will always vehemently defend your right to make that decision either way, as only you will have to live with the results. I wish you the best and hope you obtain the best possible results.

[Grego]

Thank you DJ, and the same good luck and success to you.

[DoriC]

I always see comments from the "pros" that certain situations require a medical consult and they won't give advice that's out of their comfort zone or beyond their expertise. Most suggestions are based on valid experience and good common sense. Unless a Dr uses cpap himself he can't really know what patients in the trenches have taught themselves night after night. I'm sure my dear husband is still here because of this forum. I'm also convinced that too many Drs who advertise themselves as "sleep specialists" don't really have a clue.

[SleepingUgly]

A doctor who has specialized knowledge, skill, experience, education, and training in sleep medicine and is conscientious, thorough, dedicated, and has lots of time to devote to helping his patients would be at least as good as the best we've got to offer on this forum. Unfortunately, just the "time to devote" part of the former sentence would knock out of the running every doctor I know. But in theory, a doctor could know everything people here know, and would have the medical expertise to understand it at a level (including its interaction with other illnesses) that none of us non-medical practitioners can. I definitely listen to what competent doctors have to say. Because I know a little bit about this field, I am in a better position than I once was to assess whether a doctor seems to be competent or not. But I don't believe in knowing nothing myself and leaving my fate solely in their hands.

[BlackSpinner]

I always see comments from the "pros" that certain situations require a medical consult and they won't give advice that's out of their comfort zone or beyond their expertise.

Yes. Every time someone comes here complaining of chest pains every one says "Go to ER!!!!! NOW!!!" Eventually some one says "and if they say everything i ok it might be chest muscles complaining, BUT you won't know until after you go to ER!!!!!"

[Sheriff Buford]

When I read a thread here that "rubs me wrong"... such as this one... I always wait a day to respond and most of the time I won't... especially if it is an OT thread. So I'll way in. I agree with Madalot and DoriC. I have a doctor that doesn't have a clue. It works for me because due to this site, I can tell him what I want and I get it. Some folks have other medical conditions that cpap therapy either aggravates the condition or causes a new medical issue. Most of the time, folks here are smart enough to advise them to see a doctor about the medical issue.

That being said... Grego, you have a total of 32 posts! What do you want? Are you not getting any at home? What's the point? People come here for advise on getting the most out of cpap therapy, ask questions, satisfy their curiosity and try and maximise their treatment for the best outcome. Guess what? It has worked. Long before you got here.

People come and go here. There are all types of people on this forum. Most people come here get what want and leave. Very few come her, get want they want and stick around to help others. My pet peeve is newbies that become an "expert" in a very short period of time, and leave misleading advise. Now I'm starting to complain .

Grego: people here need help to get maximum therapy and conquer this disease. There are those here trying to help them do this. Join us or get the heck out of the way...

Sorry if I was abrupt. In my business you have to crack a few heads to get someone's attention.

Sheriff