Questions to ask doctor???

I am meeting with my pulmonologist on Monday morning for my one year review and want to go into the appointment armed with knowledge and intelligent questions. I also plan to take my laptop with all of my SH data and ask him the most basic question of all--Is my therapy working as it should; and if so, why am I still tired?
While therapy has helped, it is far from the dramatic jump in the less fatigue more energy category that I had hoped for. Most mornings I’m still tired but have come around some lately (more on that in another post). I am continuing to examine all other routes--cardiologist, endocrinologist, thyroid, adrenal tumors, blood tests, etc.
Based on last night's data from SH, what observations would you make of the information?
What questions would you ask on Monday? For instance, my machine is not an APAP, and should I request a change?
I thank all of you in advance; I have learned so much here.

Always Tired
Perhaps there is a Frog or Pugsy in the house tonight?

Hi, the one thing I can say for sure is that I'd definitely want to at least try an Apap, because it can always be run as a straight Cpap in any case, but the reverse won't work (no Apap option with Cpap machines). And have you tried a full face mask, or at least taping and/or a chinstrap in case you're mouth breathing - even the slightest opening can have an effect - and don't realize it (you wouldn't of course if you're asleep).

Julie wrote:Hi, the one thing I can say for sure is that I'd definitely want to at least try an Apap, because it can always be run as a straight Cpap in any case, but the reverse won't work (no Apap option with Cpap machines). And have you tried a full face mask, or at least taping and/or a chinstrap in case you're mouth breathing - even the slightest opening can have an effect - and don't realize it (you wouldn't of course if you're asleep).

Thanks for responding,
I received some parts for my FF mask yesterday and will try it out right after my meeting with the doctor. I do use a chin strap, but it only stays in place for part of the night.
A T

Bump

2 B Sleeping Soundly wrote: Bump

I wouldn't bother with my laptop with my sleep doc - he doesn't seem interested because my AHI average is well below 5, as is yours. I would pick the worst 2 nights I can find, and print out those reports to give to him/her. That did impress my doc, that I was able to do that. In terms of why you still feel tired, I would want to know how many hours you sleep each night? Do you go to bed at the same time each night, including at weekends? When are you going to know the results of the other tests that you have had? What causes you to wake up and remove the mask? Do you feel like you are suffocating, and therefore need to remove the mask?

In looking at most of the questions I realize that most of them are directed at you. However, they may give you some ideas on questions you should be asking ....

SleepyToo2 wrote:

2 B Sleeping Soundly wrote: Bump

I wouldn't bother with my laptop with my sleep doc - he doesn't seem interested because my AHI average is well below 5, as is yours. I would pick the worst 2 nights I can find, and print out those reports to give to him/her. That did impress my doc, that I was able to do that. In terms of why you still feel tired, I would want to know how many hours you sleep each night? Do you go to bed at the same time each night, including at weekends? When are you going to know the results of the other tests that you have had? What causes you to wake up and remove the mask? Do you feel like you are suffocating, and therefore need to remove the mask?

In looking at most of the questions I realize that most of them are directed at you. However, they may give you some ideas on questions you should be asking ....

Good post SleepyToo2, but I am not the OP 'Always tired' who had the questions. I was just bumping the post back to the top to help get more eyes on it like a poster (Kaiasgram I think) in another thread by 'Always tired' suggested. Sorry for the confusion

John

AlwaysTired, it's hard to come up with a question other than the one you already have, which is most important -- Why am I still tired? I think it may not be easy to get your sleep doc interested in pursuing this with you because of your low AHI. That's been my experience so far.

Well I am also going to see a sleep doc on Monday morning! My situation is similar to yours as far as great AHI but still very tired. So I'm going to do what another poster suggested and print out some zoom-in graphs. Since this particular doc is a pulmonologist I'll ask him to look at my respiration graph and tell me if flow limitations look significant enough to be problematic for my sleep. I did not have a complete sleep study or titration study so I want to see where there's room for fine-tuning my settings.

Good luck to both of us.

I don't know if this is helpful but I use an oxygen concentrator and that makes a big difference. Originally I was put just on oxygen - imagine the surprise when that didn't work!! However, in the comparison of nights with and without the oxygen on my CPAP, my OS level is much lower and my interruptions are more frequent without it. Maybe you could ask to do an oximeter test? Given that you are going to see a pulmonologist, it would stand to reason that he might be more willing to consider oxygen.

The other thing I am noticing is my sensitivity to a whole bunch of things that I became "immune" to when I wasn't sleeping - caffeine, sugar, eating bad foods (starcy - high in carbs). All of these things have begun to creep back in and I'm finding that as I begin to sleep better, I am becoming much more sensitive again. It's been quite a while so I had forgotten but I'm slowly learning by trial and error what I need to adjust and/or cut out. Not necessarily a question for your doctor but maybe something for you to consider.

Finally, someone else asked the question but I would echo it...do you have a good nighttime routine (no TV in your room, taking some time to relax and "prepare" for sleep - in whatever way works for you) and do you try to go to bed and get up at the same times? With our new puppy, my schedule has become MUCH more regulated and it turns out that has helped a great deal as well.

It is amazing that we spend approximately 1/3 of our lives asleep and it can be SO problematic to do something our bodies are automatically supposed to do!!!! I miss the days when I woke up feeling refreshed every day.

Best of luck to you!

Your SH report looks great except for the breaks in therapy. I don't remember if this is a common occurrence for you but if it is then if it was me I would be trying to figure out how I could eliminate the cause of the breaks in therapy.
Your report shows that your OSA is well treated. Leaks are well managed. AHI is nice and low. So on paper in regards to the actual OSA treatment things look great. Looking great doesn't always equal feeling the good numbers though.
Been down that road myself. The machine is designed to fix sleep apnea issues and it does a great job. You say you have noticed some improvement but still feel like something is lacking.
I don't know how much of an impact the fragmented sleep (those breaks in therapy line which tells me you are waking up for some reason) is making in how you feel in general but it sure isn't helping things.
If someone has bad sleep from something unrelated to sleep apnea then the machine doesn't do such a great job fixing the bad sleep.

Would an APAP machine help? I don't know. It might and it might not. This is one of those situations where it would be nice if you had it available to try because something is causing the fragmented sleep and you don't feel your good numbers. Your pressure needs appear to be quite low. Are you having any issues with the therapy itself? Mask discomfort? Aerophagia? Anything that might affect your overall sleeping comfort that is related to the mask or machine?

Your doctor most likely will not put your reports under the microscope like we do. They look for general usage and maybe overall AHI averages. Most of the time they will go by how you feel and if you don't feel so great they tend to go with the "give it time" thing. To be honest there is some truth to the "give it time" thing but I feel that while we are giving it time, since we have to use the machine anyway, why not spend that time making sure that something else isn't a mitigating factor in how we feel overall.

When I went for my 3 months follow up with my doctor I had great numbers but I was still sleeping poorly. Lots of awakenings due to pain with movement in bed. My energy level was improved compared to pre cpap but still far from what I had hoped for. I did notice pretty much immediate cessation of the nocturia and the morning killer headaches from low oxygen were gone. I spent my time with the doctor discussing what I could do to eliminate or reduce the awakenings because I knew that 20 to 30 awakenings (even if I didn't get up out of bed) was destroying the quality of my sleep. Once we managed to reduce those frequent awakenings with various things (meds, new bed, etc) I saw a little more energy but still not what I hoped for. Certainly not what I read about here when people wake up and feel like they could run a marathon. I figured that "this is as good as I am going to get" and pretty much accepted it. I knew the therapy was working like it was supposed to but I didn't have the "miracle".
Eventually I stumbled onto something that made a pretty big difference in how I felt and let me actually sleep probably about an hour longer and in general I feel hugely better. It actually was a different machine and I have no explanation as to why a different machine would help. On paper it shouldn't...but on paper doesn't always equal what happens in real life.

So I would suggest that you try to ask questions to try to figure out why you are still more tired than you wish to be.
Or if you are still having extreme daytime drowsiness...talk about it.
There is a difference between fatigue and drowsiness.

I don't see anything that screams out "fix me" on your report except the breaks in therapy line. That would be the first thing on my list I would try to figure out what was going on and try to fix if it were me.

When people tell me they don't feel the good numbers then we look at other possible culprits and start sorting through them. The list is long and there's often a lot of detective work involved.

One other question my doc asked me - how is your wife feeling about your therapy? My answer was that she loves it and she has not complained about the noise/my snoring/waking up in the middle of the night ... He said that was always a good guide!

Comments,

1) I don't see anything out of the ordinary in the above SH graphs. But you should have posted the SH Statistics multi nights table also.

2) Unless I prearrange to spend more time with my Sleep MD, it's mostly lasting less than 10 min, i.e. by the time I say Hi the session is over.

3) My Sleep MD would never look at my data from my home machine saying that only clinical sleep studies data count.

4) Reliable Sleep Docs refuse to prescribe APAPs b/c these machines are not covered under the AASM guidelines for titrations (as of 2008).
Sleep Clinics don't check titrations on APAPs.

5) APAPS are contraindicated for persons who suffer from certain medical conditions such as COPD, Central Sleep Apnea Syndrome, Heart problems, etc.

6) Given the above, why should any physician take the risk and responsibility to prescribe APAPs without thorough and expensive diagnosis?

7) Almost 20% of XPAP users, after one year, suffered from Residual Excessive Sleepiness during the daytime, in spite of "optimal" treatment. By excluding depression and restless legs, the prevalence number dropped by half.

Pugsy wrote:I don't see anything that screams out "fix me" on your report except the breaks in therapy line. That would be the first thing on my list

Pugsy and everyone else that commented,
This looks like a great place to start. I'm seeing three doctors on Monday and a blood test later in the week, so I should have a lot of info.
A T

Just throwing this out there just in case... Even when no limb movements are reported during a sleep study, some with Periodic Limb Movement Disorder find that their limb movements were masked by the OSA and once the CPAP resolves the OSA, the movements then have the opportunity to manifest. (This can also happen the other way around, where a person is diagnosed with limb movements but the OSA is missed, then once the legs are calmed, the OSA shows up.)Wakings MANY times a night would make me suspicious. For a long time I was waking every few minutes most of the night, even though my CPAP treatment was just fine. If sleep feels shallow, fractured, and very restless, it might be worth pursuing.

kteague wrote:Wakings MANY times a night would make me suspicious.

I watched your video this morning and was amazed that you could have even slept at all with the PLMD. I doubt if I have it as I think my wife would have noticed, but will ask the doctor. Is PLMD always so extreme with the legs?
I did some good things last night and tried to be very observant of everything from about 6:00 P.M. onward. On the good side we ate early and I restricted fluids after 7:00 P.M. I also kept the bedroom much cooler last night and it helped a lot. I also got out yesterday for a long walk and thought about attacking this problem from all angles--not just doctors.

On the dumb side: Hose on at 10:30 and up to pee and take meds at 1:00 (fell right back to sleep). Then back to bed until 5:15,up to pee, back to bed and just laid there until 5:45 when I took the mask off intending to get up in a few minutes and fell back to sleep. Woke up at 7:00 with a splitting headache. Totally my fault--I suppose I should have been happy with 6.5 hours of sleep and just got up.

On the observation side: Both shoulders are always uncomfortable, probably arthritis and the side effects of shoulder surgery at the VA years ago. However; last night both shoulders were really bad and I did a lot of turning from side to side and then eventually ending up on my back--then the lower lumbar starts to hurt.

On my to do list: Going to take a break from morning coffee and go with tea for awhile. Go to the chiropractor and get an adjustment and get a deep tissue massage especially on my shoulders.
Actually today is a good day and I'm going out for a walk soon. Having a plan makes a difference.
Thank you for sharing your thoughts.