What do you talk about with your sleep Dr?

My appointments usually last 1 minute or so. I give him my SD card, he looks at it for a little while. He's never shown the results to me. He asks me how it's going. I usually say not very well, and list all of the things that keep me up. He either says to keep at it, or he suggests another sleep study. That's about it. Everyone says he is a really good Dr., but I find this site to be a millions times more helpful than anything he's ever told me. Is this normal or should I find another Doc?

Now that I have Sleepyhead I have a lot more questions. I never knew what to ask him, other than: what can I do to sleep better? He never had much to tell me.

My sleep doctor, who is a pulmunologist, seemed to have a set spiel and I listened and I said yes, I would use the CPAP treatment and he had trouble believing I said I was fine with the treatment so he did his spiel again and I said yes again. I think he did his canned spiel about three times and that was it. The next visit was pretty much the same. Then the RT who reads my card came in and said I was compliant and that was about it. The next visit the RT said I just needed to schedule with him and not see the doc since I'm not seeing him for anything other than SA. I think that outside of his canned spiel, my doc probably has no answers either. I did tell him the Quatro full face mask was leaving a mark on my nose and he said he thought it was my glasses. I told him I had the glasses for a while with no marks and only since I got the Quatro do I have a mark. He just shrugged. Hard to talk to someone who is not very helpful. The RT is very helpful though. Do you have one?

My sleep doctor is a neurologist - I've seen her twice, the last time six months after starting CPAP. She looked through ALL the print-outs I gave her from the data I'd downloaded, asked me if she could keep the monthly ones for my file. Asked me if I understood what the data was telling me (she asked a few quiz-type questions), saw my AHI was well below 5.0 at below 1.0, said I didn't need to go back to her unless my therapy success changed, or I had questions to ask her. The only thing she advised me to do was watch my leaks and try to keep them at a minimum. She already knew I used the machine every night, all night.

I have a great DME who ONLY deals with XPAP, so if I have questions about my machine or equipment I ask them - my neurologist knows about sleep disorders, not about the machines that give the therapy. Although she does know what the data means. The staff at my DME all know about the equipment.

Cheers,
xena

What's an RT?

Respiratory Therapist.

I do not have an RT, and I don't know how to get one.

Mine is a neurologist who specalizes in sleep disorders. We go over everything on the report; whats working and what I can improve on. She takes the time needed to answer all my questions and i just generally a nice lady and very intelligent. I think my first follow up visit lasted about 40 minutes. On my way out last time she said she wants to see me lose more weight. I thought that was great.

I'm on Sleep Doc #3, who just happens to also be my neurologist for my chronic migraines.

Conversations with Sleep Doc #1 (or rather Sleep Doc #1's PA) were long (too long from Sleep Doc #1's point of view) and initially focused on my long written lists of the ways in which my difficult adjustment to CPAP/APAP/BiPAP therapy were making me feel much much worse than I had before I started CPAP. Then, when I was finally willing to admit that I was not going to conquer my CPAP-induced insomnia on my own, the very talented PA started working with me big time on a CBT approach to dealing with the insomnia. Unfortunately, the migraine meds (prescribed by the neurologist/sleep-doc-to-be) were causing some substantial side effects and among those side effects were some that caused some real set backs in my War on Insomnia. I suspect that Sleep Doc #1 eventually told the PA to fire me since at my last scheduled visit with her, she insisted that I meet with a different PA, who then fired me a patient of the practice. (You can read the sorrid story here if you are so inclined.

Conversations with Sleep Doc #2 quickly became confrontational since she did not seem overly interested in helping me battle the insomnia and who wanted to blame my ongoing battle with chapped lips on mouth leaks without even looking at my leak data. I have to admit, though, she did make a pair of sort of useful suggestions, but both suggestions had some unforeseen and unexpected consequences that were not totally positive as far as the War on Insomnia was concerned. Things took a decided turn for the worst at my October 2011 follow up when I asked her to look at some funky data where my machine apparently lost track of my breathing for some unknown reason and her answer was I'd obviously taken my mask off in my sleep. We wound up mutually firing each other. You can read about that sorry story here.

I've only had two or three "official" conversations with Sleep Doc #3 about my sleep. They were weird to say the least. But at least he's aware of the interaction between the migraines, the insomnia, the OSA, the BiPAP and my reaction to it, and how I feel during the day and has been willing to talk about the complex web of issues I have been dealing with for the last two years. And that makes up for a lot of the other weirdness. For example, Sleep Doc #3 is not convinced that I actually have OSA, but he also will not go over the sleep test done under the care of Sleep Doc #1 or order a new diagnostic sleep study. He also is not sure that i don't have UARS or some sleep disordered breathing either, and he basically has left it up to me to make the decision of whether to continue with PAP therapy and for how long. He'd be fine with me abandoning therapy to find out what happens. But he's also willing to briefly look at my machine's data and admit that it looks good in terms of both leaks and AHI even though I still am not feeling as good as I'd like to feel. He was also pretty decent at talking with me at length about the insomnia issues along with the migraines even before I became a sleep patient of his. And he has a very talented nurse practitioner who worked extensively with me on figuring out why I was having so many side effects with the migraine meds. With her help, the daily migraines are under control with the use of a vitamin regimen that does not seem to aggravate the insomnia. Alas, however, my next follow-up (later this summer) will be a consolidated sleep/migraine appointment with yet a different nurse in the practice. And I really hate being passed off from one person to another just as I'm beginning to feel like I have a working relationship with a doc or PA or nurse practitioner.

Thx robysue,

I just read your blog on CPAP induced insomnia, I'm pretty convinced I had it. I say had, because I stopped using it and have been trying an oral appliance instead. The appliance seemed to be working for a few weeks, but now not so much, so I'm trying CPAP again. And a combination of appliance and CPAP.

One thing I don't understand about your insomnia advice. Basically you say just keep trying it, keep working at it, solve issues as you go. My problem is I get to the point where I've had a few bad nights, and I'm so worthless that I can't do my job. So I stop using it so I can just get some sleep. Yes it's apnea filled sleep, but it's better than the sleep I get with the CPAP keeping me up all night. How can I work through the CPAP issues without making myself so sleep deprived that I can't do my job? I had this conversation with my sleep doc, that's when he suggested the appliance.

I'm atypical, because my one consultation with my sleep doctor was for a specific purpose, deciding whether Provent would be an appropriate alternative to APAP, for me, when traveling. Most of the talk was about that issue. He did look at my throat, and listen to my breathing through each nostril while I held a finger against the other side of my nose. He asked me a couple of questions about my medical history, which he had obviously been reviewing immediately before the consultation. He also had the sleep study and titration reports out.

I had been on APAP for a couple of weeks, and took my data card with me. He had someone extract the data and he reviewed the reports. He said just what SleepyHead was already telling me, that my apnea was well controlled by the APAP.

I am from Canada and my sleep clinic doctor has answered very few of my many questions. I was rushed out the door the 3 different times I saw him. Most of my questions were either answered here in this forum or by my CPAP machine provider.

I've had several sleep doctors over the years.

My first was a pulmonologist. But he admitted he did not understand central apneas and recommended I talk with a neurologist. I had another, who was in the practice of my neurologist. He decided that central sleep apnea is very rare, so I could not have it. No matter that the sleep studies showed it was a real issue. My third is my current. Though it took a while for us to "synch up", we now have effective communications.

During my previous visit (six months ago), he asked if my increased weight had increased my AHI value. I said it had not, but I would check. So, prior to my next visit with him, I tried to figure out the ideal settings for my ASV unit. I dropped my AHI below 5.0 on almost all nights. During my visit, I reviewed the information I had gathered, the steps I had taken, and why I felt the current setting was ideal. He agreed and we proceeded on with other items.

He knows I can and do make changes. But I had promised that I would methodically review my settings and how I got there. He's happy with how I handle my therapy. He knows that I am serious that I will involve and review him in the process.

But I feel he's a bit off the norm, because he is more than willing to work with a patient to allow them to manage their therapy. As he put it, he wishes more of his patients was as involved with their therapy.

Pink Floyd seems appropriate.

We don't need no consultation.
We don't need no leak control.
No consultation with the patient.
Pappers leave those knobs alone.
Hey! pappers, leave those knobs alone.
All in all, you're just another brick out the door.

https://www.youtube.com/watch?v=YR5ApYxkU-U

Make the office visit, get rid of the patient, ring the register. NEXT!!!

For me, the sleep doc is the guy who oversees the lab and writes the Rx in a way that makes sure I get what I need from the DME and that everything is handled in a way that it will be paid for. What he does may be interesting in some respects, but the details of what he does would not be of much practical use to my therapy approach, I don't think. Sleep docs diagnose and prescribe. That's about it. The useful information about therapy details is likely to come from elsewhere, unless you just happen to have an exceptionally informed and involved sleep doc.

I have no complaints about my sleep doc, even though I was only face to face with him once that I remember--the initial visit. Later, when a DME was talking trash to me, I called the sleep doc and he returned my call within minutes. When I explained the trouble I was having with the DME, he said something like, "Look, Jeff, you tell me what I need to write on the Rx pad for you to get what you need and I'll have it faxed to that DME by the end of the day."

What more can one ask for from a sleep doc? He's golden!

I've never had reason to speak to him after that. My primary doc is the guy I look to for day-to-day help with my health, not the sleep doc. At one point, my primary doc did talk about sending me to the sleep doc as a courtesy to the sleep doc, but once my primary doc saw my ResScan printouts, he made copies of those and sent them to the sleep doc. Then my primary doc said to me later that there was no reason to arrange an office visit with the sleep doc unless I just wanted to talk to the sleep doc for some reason. I said I was good, no thanks. End of conversation.

I manage my own therapy. Since it happens at home, I think that really we ALL manage our own therapy. We only need to talk to a doc when we need the help with something we can't handle on our own.

But hey, that's just me.

Simbot wrote: One thing I don't understand about your insomnia advice. Basically you say just keep trying it, keep working at it, solve issues as you go. My problem is I get to the point where I've had a few bad nights, and I'm so worthless that I can't do my job. So I stop using it so I can just get some sleep. Yes it's apnea filled sleep, but it's better than the sleep I get with the CPAP keeping me up all night. How can I work through the CPAP issues without making myself so sleep deprived that I can't do my job? I had this conversation with my sleep doc, that's when he suggested the appliance. (emphasis added)

The critical idea is that you have to NOT allow the CPAP keep you up all night when you are wearing it.

Sounds simple, doesn't it? But we both know that when you're in your own bedroom having difficulties in the middle of the night sleeping with the dang machine, it's anything but simple. And allowing the CPAP to keep you up all night just encourages the CPAP-induced insomnia to grow worse. (And the fact that you can get some halfway decent, but apnea filled sleep on the nights or parts of nights when you sleep without the mask adds to the problem.)

And that's why my main piece of advice to those who find they just cannot seem to sleep with the machine is to insist that their sleep doctor start treating their insomnia as well as the OSA.

Too many sleep docs and patients seem to think that nothing can or needs to be done about CPAP-induced insomnia---they expect or hope that it will resolve by itself once the patient has found a comfortable mask; fixed any leak problems; figured out how to deal with mouth breathing; and figured out a way to deal with or prevent aerophagia among other things. But if the problem seems to be the CPAP itself messing up with your sleep cycles and fragmenting your sleep, then it's time to start treating the insomnia. Because if it's gone on for a month or more and there are no clear CPAP problems to tackle, the CPAP-insomnia has likely morphed into just plain old chronic insomnia in someone who just happens to need the machine to keep their airway open at night.

So what kinds of things can help you get over the insomnia so that you can sleep with the mask night after night? Well try this mind experiment for a minute: Suppose that you were unlucky enough to have the same degree of insomnia without the OSA and CPAP thrown into the mix. Imagine for a minute that you were someone who was unlucky enough to develop serious plain old chronic insomnia after some sort of very stressful event in your life. And it's now been say one or two months or more since you felt like you got a halfway decent night's sleep and you feel like a basket case in the daytime because of the insomnia. And you've begun to worry about whether you're going to lose your job, which causes the insomnia to grow even worse. You'd go to the doc and complain about the insomnia. And (as long as there were no indications that OSA might be your problem), what would the doc do? Most likely the doc would offer you one of three approaches to dealing with the insomnia:

1. A primarily drug based approach---i.e. offer you a prescription for Ambien or some other sleeping pill.
2. A primarily CBT based approach---i.e. start with good sleep hygiene and a sleep log. If the problem persists, then perhaps moving on towards a sleep restricted schedule for a while.
3. A mixed approach---i.e. giving you a sleeping pill prescription while stressing the need to pay close attention to your sleep hygiene.l

So try approaching your current CPAP-induced insomnia in the same fashion: If you had only the insomnia, but the insomnia was interfering with your life as much as you currently believe sleeping with the CPAP is, which of these approaches would be most acceptable to you?

Once you figure out how you'd fight a very protracted months long case of plain old chronic insomnia, you'll know what your next step is: Ask your sleep doc for a prescription sleeping pill or for some CBT for Insomnia or a mixed approach to dealing with your insomnia.

And I want to point out one thing about the role of prescription sleeping pills in CBT. One thing that was suggested to me numerous times both by folks here and by the PA who was treating me at the time was the judicious use of a sleeping aid in fighting the insomnia. At the start of my War on Insomnia, my PA insisted on giving me a prescription for Ambien as a "backup" to prevent me from becoming too sleep deprived in the early weeks of the CBT therapy. Because of my deep preference to not take sleeping pills at all, the PA told me:

• "Take a sleeping pill at the start of the night following a disastrous night. In other words, if you are up all night Tuesday night (and the wee hours of Wednesday morning), take a sleeping pill at your regularly scheduled bedtime on Wednesday night."

I will admit that I didn't follow this advice very often because I really dislike taking sleeping pills. And usually when I was ready to do this rule, it was after two or three really bad nights in a row. But this advice is solid advice and it works for many people. The idea is that this will prevent you from having two really bad nights in a row, but still allow you to not take sleeping pills every single night. Hence it minimizes both the risk of becoming severely sleep deprived due to several bad nights in a row while minimizing the risk of becoming dependent on the pills. And credit where credit is due: This strategy had been suggested to me by multiple forum members before the PA insisted on giving me the Ambien with this suggestion on how to use it.

After about a month with having to make a decision about taking Ambien at 1:30AM (my designated bedtime), I asked the PA if there was something else that I could use as a "backup" plan that could be taken closer to my wake up time of 7:30 so that I could try to get to sleep on my own or that I could take if I initially was able to get to sleep but woke up in pain and angry and unable to get back to sleep in a timely fashion. She switched me to Sonata with these instructions:

• "Sonata has a relatively short "half-life" and can be taken even if there are only about four hours of time for sleep remaining before your wake up time. With Sonata, you can try to get to sleep on your own at the beginning of the night, but if you're still having serious problems an hour or two after you first go to bed, you can still take the Sonata and try to salvage the rest of the night.

In my case, my "scheduled" bedtime is 1:30 AM. With the Sonata, I am able to make a decision about taking a sleeping pill as late as 3:00AM if I've been trying unsuccessfully to get to sleep from 1:30AM . This is particularly comforting and useful on the very rare nights when I get angry and upset right at bedtime and simply cannot get to sleep. The idea is that a Sonata taken at 3:00AM should largely be out of my system by my standard wake up time of 7:30-8:30 AM. I've done this with a bit more frequency than rule number 1 because it makes a bit more sense to my own internal psyche. But I still have not needed to resort to it very often: In the fifteen months I've had the Sonata prescription, I've taken ino more than 10-15 of the pills. Unfortunately the Sonata is not as effective at getting me to sleep as the Ambien.