Misdiagnosis (hell on earth)

[Ruffinit]

For those of you that have seen my rantings over the past 4 months you already know that I have had a very difficult time with the "treatment". Before I was shall I say "coerced" into a sleep study by my wife I lead a very active life style and did not have any of the symptoms of apnea EXCEPT for the fact that I did stop breathing during the night Which simply equates to a lower than ideal oxygen content in the blood.
Because of a high CSA rate, they set me up on a VPAP Adapt SV at a rate of 18-25. Because of this pressure numerous problems arise such as aerophagia, mask leakage, teeth sensitivity, watering eyes and blurry vision. This all results in poor sleep from the bloating and pain (stomach and back) from the aerophagia and the fragmented sleep from mask leakage noise as much as anything else and having to torque down the mask on your face. I couldn't concentrate, think or focus. (I'm in IT) I was making stupid decisions and was irritated to the point of picking fights with anyone who didn't walk away.

I have been religiously charting my detailed data and sending the reports to both my doc and the DME. The DME was concerned because the charts showed that the treatment was "textbook" in that the machine was doing what it was supposed to be with resultant AHIs normally below 1.0 and many nights with 0.0. I've never felt worse in any time period in my life. She suggested and pretty much pushed me into getting a second opinion. (The doc was just sure that it was all because I rejected the diagnosis). Thankfully she knew that one of the pioneer pulmonary experts that helped to engineer the first CPAP units in the very early 80's was in the Quad-Cities which is close to where I live. I called them up and had an appointment to see him within a week.

The doc looked at my charts for the past 4 months, looked at my sleep and titration study and then we had a chat. It seems that when someone functions in the manner that I was (very active) for so many years with obvious sleep apnea which allowed me to stop breathing during the night (my wife first noticed it after we were married 30 years ago) that the brain stays active throughout the night so that it can kick start the body when needed. During the titration, the brain figures out that the machine will do it and so shuts down which causes CSA. The more CSAs that appear the higher the pressure required to overcome them and by the time you're done, you're on a high pressure VPAP treatment. He says sometimes after starting treatment it will take a few days for the brain to learn that it's still needed and stops throwing CSAs.

So... He immediately had the VPAP switched to CPAP mode at 6! I checked the chart the next morning and saw that I was at an AHI of 6.9, so I bumped up the pressure to 7 resulting in an AHI of 2.6. The third night I had it at 8 which didn't gain me anything in AHI, but my respiratory rate increased substantially. They had ordered me up a new CPAP machine which I picked up yesterday which I requested and received a S9 AutoSet with a heated and non-heated hose, cable adaptor and humidifier.

I set it up at Auto for 6 to 10 an when I got up this morning I had an AHI of 1.0. The past 4 nights have been very good with last night being the best. I felt like getting up to start the day and feel like living again. I just downloaded the ResScan 3.10 and will install tonight.

Thanks all of you who have put up with my rantings. It was a misdiagnosis and because of the forum at least I have a pretty good understanding of the machines, settings and expectations. Going to 7 from 18-25 is like having nothing on at all. My wife commented on the silence of the S9 this morning even though the VPAP was very quiet. My DME is happy and I was able to provide her with the Clinician's Manual for the S9 which she did not have along with the data cable which she needed. Thanks again.

[Julie]

Very scary! You are lucky you didn't end up with central apnea (or even mixed) having used it so long that way!

[Ruffinit]

Almost forgot; I have a new titration this friday night under the new sleep doc.

[KatieW]

That is an incredible story. You were right to follow your instincts, and get a 2nd opinion.

[Muse-Inc]

CONGRATS!!!!

Thanks for sharing, I'll keep that in mind when I read someone else with similar issues.

[Ruffinit]

Thought I'd follow up with the results after this almost last post.

This is my first anniversary of being on the "treatment". Since the switch to the different unit and dropping to 6-12 auto, I normally will average around .7 AHI. The machine is running in the 95th percentile at high 11s. I sleep as well now as I did before going on the treatment. I'm cautiously optimistic that the joint pain that I've had for years has subsided for the most part as well as the occasional low grade morning headaches.

I'm still running the same mask as always and would like to say that the new model of the mask shipping from the manufacturer (DRIVE) has a new headgear as of late October. No longer does it have the poor attachments. It is now similar to the Mirage headgear I was using and therefore am using it out of the box. Huge improvement.

I'm going to see the doctor (Mahadevia) that made all this change possible for another visit in a few weeks. He's one of the pioneers in the field. Extremely helpful with all this.

One last item. Make sure that you keep your records from your machine. Get the software and get familiar with it. It will make all the difference in the world.

[Muse-Inc]

Thanks for the update...great to see your 'new' therapy is working so well for you!

[Marvinvwinkle]

Good for you. I know how it feels to have a bad diagnosis and have dr insist that they know best. I hope you continue to do better and hope all your ills disappear.

[sleepycarol]

Glad things are working out for you and you are on the right road now. It isn't any fun when you know how you feel -- yet are kind of pooh-poohed by the medical profession.

[Janknitz]

I sure hope your new doctor sent a report to the old doctor who might learn something from all this!

And kudos to your DME for urging you to get a 2nd opinion!

[máirtín]

I am happy for you but one thing I don't understand is

Because of a high CSA rate

where was the misdiagnosis?

[Perrybucsdad]

I always though a central apnea (CSA... correct??) required a lower pressure? AT least that is what I have read on the ResMed sites. I also notice that when I have a CSA my machine will drop the pressure.

Anyhow, glad you finally have it figured out.

[JohnBFisher]

... I always though a central apnea (CSA... correct??) required a lower pressure? AT least that is what I have read on the ResMed sites. I also notice that when I have a CSA my machine will drop the pressure. ...

Unlike the normal CPAP or BiPAP machine, an ASV machine notices the apnea and switches to ventilator mode. That is, it supports breathing until the end of the apnea. This helps break a cycle of undershoot (too much CO2), overshoot (blow of too much CO2) that leads to constant central apneas.

Most CPAP and BiPAP units assume (correctly) the increased pressure will make matters worse. But then,they don't try to sustain breathing during the central apnea. That requires MUCH higher pressures.

... Anyhow, glad you finally have it figured out. ...

Agreed. It's a great example of how carefully following the progress of the therapy can be an important step.

[Slinky]

Congratulations!!! I have said for years NO ONE knows your body better than you do!!! Trust your instincts.

This is the first I've heard of the DRIVE FF mask.