Seeking advice and professional treatment in DC/Maryland area

[thomaspmccabe]

Thanks in advance for any help you might offer. 

I was diagnosed with severe sleep apnea (obstructive and central) 2 years ago. I've been through a CPAP then BiPAP machine, and finally was able to get my insurance to cover an ASV unit a few months ago.  

According to the sleep doctor I have been seeing, this ASV has been successful at treating the central events. But the original pressures were too low to correct the obstructive apnea. So he raised my pressure settings. Now they are so high that the force of the pressure wakes me up continuously. When I reported this to the doctor, he insisted that the settings need to be this high to correct for the obstructive apnea. But the high pressure also makes it very difficult to keep the mask fitted correctly, so I'm getting a lot of leakage. I've been back and forth with this doctor, and he has been unable to provide any additional help. 

Could someone please recommend a sleep doctor/specialist/neurologist in the Washington, D.C. or suburbs of Maryland and Virginia who might help me? Or perhaps a respiratory therapist at a medical equipment supplier? 


I am just beginning to seek help from others, and this forum is my starting point. From what I gathered already from others' posts, it's clear that getting PAP treatment right can entail a lot of trial and error, and requires diligence. So thank you to everyone who has shared your experiences and advice. 

Software--So far the Philips Dream Mapper phone app hasn't been displaying any data, even after signing in and registering my device. So that is one of the topics I'm researching now on this forum and I'll be looking at using OSCAR. 

Mask--I've been through 4 different masks, and the one I have now (Philips Amara View full face that fits under the nose) seemed to work well at lower pressure settings, but not the new higher pressures.


- Thomas

[Sleeprider]

Your machine is compatible with OSCAR software, which is a free shareware served on this forum. It can give you far more details on your therapy, including being able to analyze graphs of your respiratory flow and machine/mask pressure on a breath by breath basis. We can help you learn how to analyze your therapy.

Get the software, but I can tell you right now, you will do better with a Resmed Aircurve 10 ASV rather than the Philips Dreamstation BiPAP AutoSV. The difference in response is incredible, and once you have OSCAR you will see it in a way that is very easy to understand. Ask your doctor or supplier if you can exchange the machine for the Resmed ASV. You won't regret it.

[SarcasticDave94]

ResMed ASV is definitely better. If you need full face masks, take a look at Fisher & Paykel Vitera. It handled my ASV pressure set, both older high pressures and the newer lower set. Like all masks it needs adjusted properly or leaks are guaranteed. I liked the Respironics Amara View until I tried something else.

[thomaspmccabe]

Thanks for your thoughtful reply, Sleeprider. I downloaded the OSCAR software this afternoon and brought in data via the SD card. I'll read up on this forum about using OSCAR.

I will look into exchanging the Philips for the ResMed. Just read some other reviews comparing the two, and yeah, the ResMed is the clear favorite.

---

Thanks for the additional recommendations SarcasticDave94.

[SarcasticDave94]

You're welcome. FWIW think of some tangible reasons that you don't like the Respironics. Maybe it's treatment based, comfort, symptoms not being addressed, etc.

[thomaspmccabe]

You're welcome. FWIW think of some tangible reasons that you don't like the Respironics. Maybe it's treatment based, comfort, symptoms not being addressed, etc.

Sarcastic Dave, 
Thanks very much for this advice. I was finally able to get the ResMed Aircurve10 ASV machine, and my sleep doctor has set the pressures. 

I'm facing one initial hurdle, though, before I can proceed to using OSCAR and getting the most from my new ASV. I have a long beard and can't get a good mask seal yet. I'll post a more complete question/request as a new topic re: beards and mask seal so that everyone else who is in a similar situation can find the advice. Thanks again, the ResMed machine, as you described, is much better and more comfortable than the Phillips. 
Thomas

[Sleeprider]

Looking forward to seeing your results (and settings) with the Resmed Aircurve 10 ASV. It is a very intuitive machine that gives much better results for most people. I'll ask Gideon to take a look here, as he has dealt with the challenge of a large beard and high pressure therapy. As I said in my PM, if there is anyway you can use nasal therapy, the Resmed Airfit P10 is a great solutions that won't leak, once you train yourself not to let air into your mouth.

[Gideon]

I have a very full beard, similar to that jolly old elf that visits every Christmas. Amara View was my backup mask until I didn't need one. The Amara fits in the crease of my chin and just outside of my stash. That happens to be where my beard is thinist.

Always start by hand fitting the mask, no straps. Eventually lying down in a sleeping position. You don't want to press hard into your face, the lightest touch that seals is what you are looking for. If the mask doesn't work when you hand hold it it will never work with straps.

Now attach the straps to get the same feel you had with your hand holding.

It is likely you will have some small seepage leaks but don't worry about it.

Keep in mind that it is the CPAP pressure that seals the mask, not the straps. Too tight means not the mask for you.