Sleep Doc #3 - Epic Fail

I saw my third sleep doc this Friday, the thirteenth. Maybe that should have been a warning sign. I didn't think anything could be worse than sleep doc #2, who was somewhat hostile and completely disinterested. This latest doc wasn't disinterested, but he was, well I don't know what he was to tell the truth. Confusing, certainly.

I was told I probably had sleep apnea one year ago, and my weight then was 350 lbs. I've lost 80+ pounds in the last year. I have high blood pressure and severe sleep apnea (88 interruptions per hour). This new doc told me he was going to give me a pill, and that I had to buy it directly from him. It turned out to be amphetemines. This seems like a really bad idea to me. According to what I've read, this is for people who have failed completely on their diets, and is not recommended for people like me with high blood pressure and insomnia. He also told me to drop my PCP and see only him. He would cure everything which ails me with his "super diet". I don't intend to go back to him. Unfortunately this may have been my last chance to get rid of the Resmed Escape "brick" I was given by sleep doc #1. This latest doc indicated he prescribes only autoset for his patients, but wasn't willing to give me a script. I guess he wanted to make sure I would be a "loyal customer" before giving me what I came to him for in the first place.

So now I'm completely confused and frustrated. I've followed every bit of advice I've gotten here and had no luck. I contacted every DME in my insurance company's directory, hoping they could give me the name of a sleep doc who prescribes data-capable machines. There were 32 companies and I called them all. Not one of them would tell me anything. I contacted Resmed, who I figured would be the only party interested in people getting the more expensive Elite model. This was their reply

You might see your physican and request he/she script for the Elite. Data management in the very near future is going to be a requirement for most insurance comapnies. The fact that you are having a difficult time trying to adjust and be compliant is hard to triage without all the data. Your physican is the one who can script and make that happen.

I have an appointment with my PCP in a week's time and will talk to him about this situation, but I've been in contact with a rep from my insurance company who says a script from my PCP would be unlikely to be approved. Sleep doc #2, who was so hostile and uncooperative, was recommended by my PCP, so I am very dubious that he will be of much help.

Meanwhile, things are getting worse. I slept 2 hours last night, woke up, slept badly for another hour or so, then gave up. Five weeks ago I started having incidences of aerophagia which is definitely contributing to my worsening sleep. My only hope seems to be to continue to lose weight (without pep pills) and hope that restores my ability to sleep normally, because my hope of finding a sleep doc who isn't worthless is fading fast.

So, are there any other strategies for me to try? I think a data-capable autoset machine could be the ticket for me, but how do I get one?

craigslist? secondwindcpap.com?

Where are you finding all these bad doctors? Angie's List for Crappy Docs? Sorry, had to say it - hope you find the right one soon. Auto machines show up here quite often, always under $500, often much cheaper. Insist on PayPal if it's a guest or a member with almost no track record. Craigslist can be tricky, so I'd stick to one's own area and go in person to check out the machine.

Sir NoddinOff wrote: Craigslist can be tricky, so I'd stick to one's own area and go in person to check out the machine.

I prefer starbucks for my 'drug deals' , plenty of people around so you're less likely to be robbed (it happens), normally a power outlet that you can use to plug the machine in and check the hours, give it a good sniff to see if it's been bathed in cigarette smoke, etc.

You don't say where you live, but every state has at least one large multi-disciplinary medical facility or a teaching hospital, which after your experience sounds like the best option for you if you want a script. Would your PCP refer you to one of those if your insurance permits it?

Until you can get an autoset, you can use your Escape auto, just set it between x and y, to be determined by trial and error, then the next morning see what it went up to, and move it closer together if you are getting into the proper range. Too much pressure will give you the aerophagia, but so will not enough exhale relief. Boost your epr up to 3 and see if that helps. The Phillips respironics autos will work too, just get the right model, not familiar with what that is.

library lady wrote:You don't say where you live, but every state has at least one large multi-disciplinary medical facility or a teaching hospital, which after your experience sounds like the best option for you if you want a script. Would your PCP refer you to one of those if your insurance permits it?

That's an interesting suggestion, thanks. I live in Brooklyn, NY, and I I've only seen my PCP twice, so I don't know him that well. He seems like a really nice guy, but economics seems to inform a lot of decision making. When he made the appointment for me with sleep doc #2, I hadn't asked him to do so, but he clearly wanted me to only see doctors in his network. I have no idea why she was so unhelpful. I thought she would welcome a new patient, but she didn't. "You already have a doctor", she said to me, "you should address your questions to him." Why would I got to see her if I wanted to address my questions to him? If I'm seeing her, clearly I'm not completely happy with my current doc. My best guess is that because I asked her about a data-capable machine she thought I would be a difficult patient.

When I did address my question to sleep doc #1, his answer was equally confusing to me. "If you had a data capable machine," he asked, "what good would the data do? If the machine told you that you had leaks, what would you do with that information?" I told him I'd make whatever adjustments were needed. He just shrugged it off.

As to where I'm getting these doctors, I'm getting them from the directory of doctors from my insurance company's website. The pill pushing doc #3 was not my first choice for doc #3. I called one doctor and got nothing but an answering machine. I left a message, but they never called me back. I left a second message, still no reply. I then tried the next name on the list and got yet another answering machine. "This voice mailbox is full" it said. I tried again the next day and got a person. Hallelujah! Does Dr. so-and-so work there? I asked. No, I'm told. Oh, he's listed in the directory I said. I'm then told he does work there, but only on Mondays. Whaaat? OK, I said, can I make an appointment? No, I'm told. We don't know if he's coming in. Call back Friday. Instead I called the next doctor on the list and got Dr. Feelgood. The amphetamine guy.

Unfortunately I must work within the confines of my insurance. I don't feel qualified to make such a purchase. Cpap, apap, bi-pap? I can't afford to buy a machine unless I know it will work for me. in eight months I can get to my target weight, and hopefully after that my apnea will be gone

herefishy wrote:Until you can get an autoset, you can use your Escape auto, just set it between x and y, to be determined by trial and error, then the next morning see what it went up to, and move it closer together if you are getting into the proper range. Too much pressure will give you the aerophagia, but so will not enough exhale relief. Boost your epr up to 3 and see if that helps. The Phillips respironics autos will work too, just get the right model, not familiar with what that is.

It's clear there's so much I don't know. Frankly I didn't understand what you suggested. You say "the next morning see what it went up to"? What does "it" refer to? "EPR"? I see no setting for that on my machine. Apparently not all models allow the patient access to that setting? How do I know if mine does? The only settings I see are humidity and ramp.

watch this video and see if it helps you for setting your machine. http://www.cpaplibrary.com/machines.html

herefishy wrote:Until you can get an autoset, you can use your Escape auto, just set it between x and y, .

according to the OP's equipment list, they have an escape, not an escape auto.

JQLewis wrote:
Unfortunately I must work within the confines of my insurance. I don't feel qualified to make such a purchase. Cpap, apap, bi-pap? I can't afford to buy a machine unless I know it will work for me. in eight months I can get to my target weight, and hopefully after that my apnea will be gone

Get a second hand autoset (apap). They are often advertised on the site. There isn't a lot to know about these machines and once you have data you are good to go and figure out what is what with help on this site. There is a 50/50 chance your apnea will not be gone. Often the weight is there BECAUSE of the apnea.

Check out Craig's list in your local area for a S9 AutoSet.

I'm sure that what Dr. #3 suggested is illegal. It would be worth reporting him to the state medical board.

Janknitz wrote:I'm sure that what Dr. #3 suggested is illegal. It would be worth reporting him to the state medical board.

well, unethical at least.

This was their (ResMed's) reply

The fact that you are having a difficult time trying to adjust and be compliant is hard to triage without all the data. Your physican is the one who can script and make that happen.

Why don't you show that to your stupid doctor? The manufacturer is recommending a better machine.

I would go for the S9 AutoSet instead of the Elite.

ChicagoGramps