Advice re: changing CPAP settings

[Sleeprider]

You need to request a complete copy of any sleep studies you have completed, recommendations and prescriptions. These are YOUR records under the federal law HIPAA. Having those studies can help you avoid future costs and can be the basis of a second opinion, not to mention, I'd be glad to interpret the results if you care to post them. It's really easy to request a copy. Be sure to read section 3 of your rights under HIPAA. https://www.privacyrights.org/consumer-g...nts-rights

These are important records for your personal files. Please don't let this go, get the records. Imagine having these in hand and making an appointment with another doctor, rather than starting from scratch.

[fyrfyter43]

I have contacted the doctor's office and requested a copy of the sleep study reports and prescriptions. They have me a bit of a hassle, but are supposed to be mailing them to me. 

In the meantime, after a couple of really lousy nights, I switched my min and max pressures back to 6 and 13 last night. I also took 2 Benadryl before bed because now that I'm back to work I realized that part of my problem may be that I've been home for more than 2 months with the cat, and I do have a mild allergy to cats. Once I started back to work I noticed that the congestion I've been experiencing seems to subside during the day, and starts coming back after I get home. I had a pretty good night last night. Obviously the Benadryl helped me sleep, but my AHI was also significantly lower than it has been.

[Sleeprider]

Do you feel like your flow restriction begins in the nose and sinuses, causing you to breath shallower than normal at times. You have clusters of hypopnea, and perhaps the air is just not penetrating the congestion...just looking for your impressions.

[fyrfyter43]

Do you feel like  your flow restriction begins in the nose and sinuses, causing you to breath shallower than normal at times.  You have clusters of hypopnea, and perhaps the air is just not penetrating the congestion...just looking for your impressions.

There are times when I feel like that is the problem. But on the other hand, I have tried using a decongestant nasal spray such as Afrin a few times, and it didn't help. 

My gut is telling me to try a couple more nights with everything the same as last night, that is, using APAP with min 6, max 13, and taking 2 Benadryl before bed.

[fyrfyter43]

My gut is telling me to try a couple more nights with everything the same as last night, that is, using APAP with min 6, max 13, and taking 2 Benadryl before bed.

Well, that didn't help either. I tried it for about a week. AHI was anywhere from 2.6 to 11.3. I had quite a few CAs, but the majority were still hypopneas. 

I am still looking for a new doctor. I think I found somebody, but I don't want to make an appointment until I have my studies in hand. The other doctor is playing games, but I was told yesterday that they were being mailed that afternoon. I'll believe it when they show up. 

Since I'm looking for a new doctor, I went back to my prescribed pressure for a few nights. The first night wasn't too bad, with AHI of 4.6. The next night was much worse at 22.3, and last night was terrible at 46.9. The number of CAs is a bit better, and hypopneas are the vast majority of events. I've been feeling progressively worse with each day, and this morning I feel almost as bad as I did before starting with CPAP. Although, even with CPAP I never felt as rested as I should. 

I haven't been able to get on the computer lately (my wife is a bookkeeper, so she's been working non-stop the past few weeks). Hopefully some time this weekend I can get a few screenshots and add them here.

[Sleeprider]

I have a feeling your sleep study is going to show some central apnea in the mix. Hard to believe a doctor is reluctant to provide legally required copies of a sleep study. What's up with that?

[fyrfyter43]

I was told that he had to approve it before the records were mailed, and that he was out of the office for the past week. 

I do notice throughout the day that I subconsciously stop breathing momentarily. It typically happens when I'm concentrating on something or doing physical labor. I also have noticed that I'm often short of breath.  Not sure if it's related, but I thought I should mention it. 

The doctor that I am considering switching to is the medical director of the St. Luke's Sleep Center in Allentown, PA. At least according to Google, he is highly recommended and respected. It seems he also has a background in neurology, so if there is some central apnea involved, he would be better able to help me.

[fyrfyter43]

So here I am more than a year after this problem began, and I think I have finally found the issue. 

I’m now under the care of a different, very competent doctor. However, he was just as puzzled as I was by the problems I was having. 

One night about 2 weeks ago I woke up struggling to breathe. As I’ve thought all along it seemed that while the pressure was ok, the flow was insufficient. My DME checked the machine out a few months ago and said everything was fine. 

That night when I woke up struggling to breathe, it dawned on me that I had replaced the ultrafine filter the day before. I removed the ultrafine filter and the difference in airflow was unbelievable. Since then I’ve been using the machine without that filter and I’ve been sleeping better than I have in the past year. AHI has averaged right around 1, with my worst night at 2.6. Before that 2.6 would have been a great night. 

Thinking back, my problems first started a day or 2 after I would have changed the ultrafine filter. And it was around that time that my DME started sending me aftermarket filters instead of OEM filters from Phillips.  Coincidence? I don’t think so.

[MyronH]

That is interesting about the non-OEM filter. My DME gave me non-OEM filters too, and I wonder now if I am not getting the same flow rate. Because during my last sleep study the other night, they used a respironics machine, and I noticed the airflow was more then what I get at home. I even told them I prefered the Respironics to the ResMed, but the tech said both machines at same pressures should be the same.

I definitely dont want to use the machine without a filter. But wonder if i should try and buy OEM filters now.

[fyrfyter43]

My DreamStation uses 2 filters. One is a wash-able particulate filter, which I am still using. The other is a disposable, ultrafine filter, which is optional. That is the one I have had trouble with and have stopped using. I did not have this trouble with the OEM filters.

It’s likely that they do not use both filters for a sleep study.