A little venting and some questions about breathing patterns

First the venting.

I wasn't happy with my doctor. I got a vibe from the first visit. But the second visit with my diagnosis was pretty useless. Very little was discussed about my diagnosis and no mention of any alternatives to CPAP. I already knew much of that, but I'd still expect the doctor to go through it. Even though surgery to actually fix sleep apnea isn't often successful, I should have gotten at least cursory a mention about it. The follow up to the titration was no different. It was here's your pressure, here's you prescription for the CPAP machine, see ya later.

I literally didn't gain anything from my doctor's visits that I couldn't have gotten over the phone from the sleep lab.

I could have prodded him with questions and I did to a degree, however I got the body language I was wearing out my welcome. Also about 2-3 weeks before my Apnea had turned really severe. I was pretty much dysfunctional and forgot several questions I meant to ask. By this time, I had felt my doctor was lacking, but I didn't want to start over. I needed treatment ASAP. I figured I switch over to another doctor at about the 6 month mark after treatment had been going for a while.

Anyway, coming up on a 2 month visit, I was better but I didn't feel I was where I should be. I am still tired at times. I told the doctor as much and his response to refer back to the titration to say the pressure is correct and he'd see me again in 6 months. I meant to ask for a Data capable machine at this visit. But I was so taken aback at hid response to my status, I sort of stunned. I didn't end up even asking for the machine.

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Now the questions about breathing patterns.

I've not been doing as good as I should with my therapy. Probably about 2/3 of the time I still have symptoms (although less) and about 1/3 of the time I feel like I'm getting back to normal. This is episodic. The week before last was good, but this past week was horrible. I suspected mask leakage because some of these episodes seem to come and go when I tried a new mask. I've tried 4. I wasn't sure. I thought perhaps my machine was off, so the DME checked it and it was at the prescribed pressure.

Just out of paranoia about my machine not behaving properly with my mask, I shelled out for one of those Pressure gages. My machine seems to be able to maintain pressure. However, I noticed I could see my breathing reflected in the needle as a pressure drop.

I video'd the dial a few nights ago while I was sleeping. I was actually suspecting that my episodic success in my treatment was related to mask leakage. I was expecting to see a prolong pressure drop now and then representing a leak.

Watching through it, I didn't see any signs of the machine losing pressure for a prolonged period. But I did noticed a few things about my breathing.

This first one might just be a curiosity, but I thought I'd ask. On fast forward, I noticed at times I have a pattern where my breathing depth seems grow and shrink. Basically my breathing will deepen and shallow over the course of a few dozen breaths. Its not to a gasping levels or that of stopping breathing, but I found it odd. This alternating between deeper and shallower breathing seemed quite regular which was the strange part. Is such a breathing pattern meaningful in any way?

Then I caught what is likely my problem. At one point at about few hours or so into sleeping, I saw the needle stop moving. Following that, the needed drops from 11 psi to almost about 2 psi. From looking at the need when I'm awake, it would take a deep gasp to accomplish such a drop. I seemed to gasp about 3 times after the breathing stopped. To me it was a clear apnea event.

Here's the part I have a question about. The apnea event was immediately followed by about 3-4 more. It was an almost a back to back cluster with a handful of normal breaths between the stopping breathing and the gasping. Sometimes there were as little at one normal breath between them. I had a second cluster not long after. I haven't seen the rest of the video yet. Is tight clustering of apnea events typical?

It sounds like you aren't going to be happy until you get data.

You need to get a copy of your script (your PCP can write one) and order a data capable cpap online. such as from cpap.com. You will need the software too.

If you have a copy of your CPAP prescription, you can order a autopap with it, then if your pressure isn't
right it will adjust for it.

Get one with reporting software then you can see how you are doing and you don't have to deal with doctors with poor communication skills.

you will feel better and save a lot a money in the long run.

My experience of the sleep lab MD was nearly identical to yours...had to look to see whether your 1st paragraph was actually written by me! Abysmal! The difference was that after the first lame appt (same as yours--no discussion of anything by the MD)--I took a list of questions to the next appt, and got mostly grunts for responses, if any. No question that he had no clue how to read my data. At that appt, I just told him that I wanted an RX for an apap because at that time I was using a DME and they would not change out my cpap without that Rx. I then walked out with the Rx, returned the cpap, ditched the DME, ditched the MD, bought my machine and stuff online, and am so glad I did!

I too have had a change in my breather pattern but I suppose that is really what this is all about right? Being able to get enough air without having to breath deep continually to get enough thus gasping. I have just started with my machine, I have the Cflex that allows for the machine to actually recognize when I am exhaling and thus allow for the exhale to occur. I had another machine before this that did not have this feature and I felt as though I was being "forced" to breath against a normal pattern as it was difficult to exhale.

Anyways, I noticed today after what I would call a healthy night of actual sleep that my breathing is shorter and shallower. At first, I had to lay down thinking I was hyperventilating only really to learn that this actually normal breathing!!! Boy my sinuses must really be bad! I also noticed that because I had problems the past 2 -3 weeks, although I slept well, I almost felt like I had a hang over of some sort... Just not enough energy and still tired.

I heard that it actually takes a while to get somewhat adjusted. Let us know if you get a new CPAP/BiPAP and a new Dr.

Cheers