What does the sleep doc do long-term?

JeffV · Post by **JeffV** » Sun May 10, 2015 2:41 pm

As I've posted on here before, I've pretty well come to the conclusion that my sleep doctor and his staff are idiots, and I would like to not deal with them anymore. I'm scheduled for a second sleep study for titration later this month, with a followup for the results sometime next month. Once I get past that appointment, what do I really have to go back to him for? I guess what I'm getting at is if I don't need to go back to him on a regular basis, then there's really not much point in finding and establishing new-patient-ness with a new doc. I've got well-established compliance at this point, and the only reporting he gets from the machine would be info either from me (using Sleepyhead) or from the DME (pulling bare-bones data from the card) since he can't get the data from the card himself. I feel like I'd be just as well off to monitor my own AHI and graphs and call him if I have issues. My prescription is good for life, I have a good APAP machine and a mask that works for me... thoughts?

Julie · Post by **Julie** » Sun May 10, 2015 3:31 pm

Hi, if your insce does not demand you see the doctor annually (or otherwise), and you follow your sleep with software, and understand what it all means, and occasionally tweak things if necessary, I can't imagine why you'd need a doctor unless something went definitely wrong that you couldn't make sense of. Some of us haven't seen a sleep doctor since we started out (see how long I've been doing this) and don't miss them in the slightest.

postitnote · Post by **postitnote** » Sun May 10, 2015 3:35 pm

My thoughts are that mine sits at his desk dictating orders. Honestly, I don't know what his name was, where his office was, phone number, etc. The same guy at the sleep cliic did all but one of my tests over the years. I had his number and was told I could call anytime I needed him. My internist gave my the prescription for the DME's over the years. If I needed a new mask (back when my insurance would actually cover stuff), he wrote that too. I was told I could stand to have another study to see what's changed over the years. As much fun as that would be I don't see a reason to.

So to sum up, I have never had any interaction with the sleep doctor at all.

Krelvin · Post by **Krelvin** » Sun May 10, 2015 3:48 pm

First 9 years, never talked with a sleep dr. Recently, I did to get a new machine, Insurance wanted a new sleep study, he reviewed it, sent the info to the DME, I picked it up, and saw it once for a recap. He didn't care for anything other than compliance info, so I see no point in seeing him again.

Have a good PCP who and will write an RX if necessary, but the ones I have are good for a long while and I have a good study now.

LSAT · Post by **LSAT** » Sun May 10, 2015 4:09 pm

JeffV wrote:As I've posted on here before, I've pretty well come to the conclusion that my sleep doctor and his staff are idiots, and I would like to not deal with them anymore. I'm scheduled for a second sleep study for titration later this month, with a followup for the results sometime next month. Once I get past that appointment, what do I really have to go back to him for? I guess what I'm getting at is if I don't need to go back to him on a regular basis, then there's really not much point in finding and establishing new-patient-ness with a new doc. I've got well-established compliance at this point, and the only reporting he gets from the machine would be info either from me (using Sleepyhead) or from the DME (pulling bare-bones data from the card) since he can't get the data from the card himself. I feel like I'd be just as well off to monitor my own AHI and graphs and call him if I have issues. My prescription is good for life, I have a good APAP machine and a mask that works for me... thoughts?

If you have passed compliance, why the new sleep study?

BlackSpinner · Post by **BlackSpinner** » Sun May 10, 2015 4:10 pm

Mine told me he didn't want to see me as long as I kept my AHI near 1 since I knew how to read my data and adjust my machine. That was 6 years ago.

bwexler · Post by **bwexler** » Sun May 10, 2015 4:49 pm

I think you are being very short sighted and selfish. Sleep doctors have car payments and house payments and overhead. How do you expect him to survive if people like you don't visit regularly.

I am also wondering why you need a titration study if you have an auto PAP.

palerider · Post by **palerider** » Sun May 10, 2015 5:01 pm

bwexler wrote:I think you are being very short sighted and selfish. Sleep doctors have car payments and house payments and overhead. How do you expect him to survive if people like you don't visit regularly.

now, to be fair, there are plenty more suckers, er, I mean, fish in the... er, I mean sheep out there that need to have their wallets lightened.

RogerSC · Post by **RogerSC** » Sun May 10, 2015 5:05 pm

If you're on Medicare, and want them to continue to pay for your cpap supplies, then I believe that Medicare needs to hear from your sleep doctor once a year to verify your compliance. Other than that, if things seem to be going well, why bother?

Bill44133 · Post by **Bill44133** » Sun May 10, 2015 7:30 pm

If your therapy is working for you, and you feel good and have no further issues then NO point in ringing the cash register for the doctor,

JeffV · Post by **JeffV** » Sun May 10, 2015 8:13 pm

LSAT wrote:If you have passed compliance, why the new sleep study?

I've never been titrated, we've just been basically guessing at pressure this whole time. I slept horrendously at my initial study and got definitely diagnosed, but nothing past that. We've definitely hit on a good spot (AHI consistent around 1, no big problems but a bit more snore than I'd like). I wasn't planning to do it at all - in fact, I'd already argued the doc down from it late last year since I had AHI in the 1-2 range the whole time and didn't want to pay for another study. But thanks to some emergency surgery in January I've already hit my out-of-pocket max for the year on my insurance. I probably could do just as well winging some dials with you folks (and probably will regardless), but since I have the opportunity to do it now and I'm really really hoping to not be in this situation again for a good long time, I figured I'd take advantage of getting the full test with EEG and everything at no cost to me.

For those mentioning Medicare - Nope, too young. My insurance is through work. I'll check with them at some point to see what they actually require.

robysue · Post by **robysue** » Mon May 11, 2015 12:37 am

I've had good, bad and indifferent sleep docs.

Sleep doc #1: Couldn't stand the doc. I only had one actual meeting with him and he oversimplified things to the point of being misleading. And told me that I didn't need a full efficacy data machine because I'd feel better after two weeks of PAPing. Yeah right. However he did have a PA who was very good at helping me fight the First War on CPAP-Induced Insomnia. Until I was fired as a patient for not getting better soon enough. If it hadn't been for that PA, I'm not sure I'd still be compliant.

Sleep doc #2: Told me my on-going problems with not sleeping very soundly and with continuing to feel worse rather than better on CPAP were caused by leaks and that I should use a chin strap. Yeah, right: She never looked at the leak data even though I brought Encore reports with me that clearly showed my nightly total leaks were right at (or below) the expected leak rate for my mask at my pressure. And told me to quit looking at the data. I got very upset at our second meeting and yelled at her for not listening to me and stormed out of the office. Hubby tried to patch things up after I left, but couldn't and informed me that she'd fired me as a patient, although I'd already decided to fire her as my sleep doc.

Sleep doc #3 was also headache doc #1. He's a neurologist with training in both headache management and sleep medicine. I wound up being referred to him for chronic migraines by the ENT who ruled out all the usual suspects in the very bad vertigo that developed about 3-6 months or so before I was diagnosed with OSA. Hubby suggested that I just use him for the sleep doc of record. But this doc had decided that all my problems were really based in an undiagnosed mood disorder that he strongly hinted was bipolar disorder. He sent to a psychiatrist before becoming Sleep Doc #3 and that was the best thing this doc ever did for me. When this doc told me to my face that I did not have OSA even though he was staring at the original diagnostic sleep study with an AHI = 23.something or other and I was actually there to talk about the fact that the insomnia was once again growing out of control, I got mad, and at that point he again told me that I would never get better until and unless I started taking lamictal (again)---which was listed on my medical record as "can't take because of severe adverse reactions"---as in suicidal thoughts and other severe adverse mood changes. Hubby took things into his own hands this time and called the shrink and got me a semi-emergency appointment to see the shrink. The psychiatrist sees me and his advice: Fire sleep doc #3 and headache doc #1. And he expedites me getting to see headache doc #2 and sleep doc #4, both of whom usually have several month long waits for new patients.

Sleep doc #4: He's been a real keeper. He's treated me like an intelligent and knowledgeable patient. He knows I can change my own pressures and has told me that, yes, I can experiment with the settings, but that he doubts I'll find anything better than the narrow auto range I currently use. (And he's been right about that.) He's shared a fair amount of information about double blind studies and what they do and do not indicate about CPAP's affects on people with moderate OSA. And because the insomnia was acting up, he was honest with me that at that point he had no better suggestions than tightening up on the sleep hygiene stuff that I'd learned in the First War on Insomnia and/or taking sleeping pills on a regular basis. Two summers ago, he suggested another round of sleep tests since I was once again having real problems with aerophagia (the gift that keeps on giving) and the insomnia was getting worse yet again. I had the sleep tests, but they didn't turn up anything identifiable---except that the insomnia problem was worse than I described it as being----I'm the weirdo insomniac who overestimates how much I sleep and underestimates how much I'm awake during the night. An at that point he took the time to explain why he wanted me taking Ambien every night for two or three months (to stabilize my bedtime) and how to figure out ways to work with my body's circadian rhythm rather than just fight it. I still see this doc about every six months to track the progress I'm making on managing the the insomnia/delayed sleep phase issues problems.

The upshot of all this: I think I do still need to be seeing a sleep doc. The CPAP-induced insomnia that started in October 2010 has never been fully beaten, but I've managed to control it (at times). My sleep is still too fragile and I spend too much effort in trying to insure I get a decent night's sleep. And Sleep doc #4 is a valuable resource for me in this battle.

Hubby, on the other hand, had his sleep test done, the results (mild OSA) were forwarded to his PCP and after hemming and hawing for 8 months after his sleep tests were done, hubby finally got tired enough of falling asleep on the couch every night and started CPAP. He's never seen a sleep doc, but then again, he responded by starting to feel less sleepy in the evenings within the first week of PAPing. His leaks are under control, and his AHI is always between 0.0 and 1.5. And he has no insomnia and no aerophagia issues to deal with. So Hubby doesn't really need a sleep doc.

LSAT · Post by **LSAT** » Mon May 11, 2015 7:56 am

RogerSC wrote:If you're on Medicare, and want them to continue to pay for your cpap supplies, then I believe that Medicare needs to hear from your sleep doctor once a year to verify your compliance. Other than that, if things seem to be going well, why bother?

I have a Medicare Advantage plan and I haven't had a sleep doctor since I was diagnosed 6 years ago. I get all my supplies without and questions asked.
When I wanted a new machine, my PC doctor wrote the prescription.

poppi2 · Post by **poppi2** » Mon May 11, 2015 8:31 am

I have regular Medicare, plus a supplemental plan, and like RogerSC, I have to have a face-to-face with my sleep doc annually.

StephenR · Post by **StephenR** » Mon May 11, 2015 10:02 am

I am in BC, Canada. This province does not cover CPAP supplies, but will pay for sleep docs, DME techs and sleep studies if you can get them...

I am on sleep doc #2....neither of these guys will look at data from machines, and are quite dismissive of any symptoms of insomnia caused by the machines.
I was told to take Zopiclone if I can't sleep. I am not taking anything.

Neither of these docs are keepers, the only reason #2 is still around is that he finally agreed that titration would be good, after I have spent 4-5 months
of CPAP induced agony, I am just entering month 2. So I am keeping #2 in the loop for now.

I have an ASV machine coming this week, and am looking forward to seeing if it helps.

I know some people find help with docs, or techs in DME situations, it just has been my situation that I have CA's bought on by CPAP, and it has been
a struggle to get a titration study in a lab, so that we can see what these CA's actually are: SWJ or ???

My insomnia is under control, even nightmares are now survivable; ie I can go back to sleep after them.
I found Barry Krakow's book, Sound Mind, Sound Sleep the best method for me to deal with insomnia.

Stephen

What does the sleep doc do long-term?

What does the sleep doc do long-term?

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