Turkey Calls: 4.5 months and back to dragging @$$

[Roman Hokie]

Good morning. Just perusing the site. I go back for my titration study tonight, so I guess that's a good sign. My wife called the sleep doc's office yesterday and set it up. She asked the woman answering the phone if these things really make a difference. The woman told her something to the effect of, "You're going to have a new husband. He'll just LOOK the same."

So, I'm stoked. And overwhelmed at all this. Some information about me. I've had a beard (or at least a van dyke) for about 3 years. My neck, being 20" in diameter, likes hiding behind it. My turbinates are enlarged and the ENT wants to do surgery. I've heard too many horror stories on that, so count me out.

With the facial hair (which is a challenge for the paste/gel application at the sleep disorders center), do I need to know anything in particular?

Thoughts on humidifiers and battery packs? Are these generally covered by insurance as well? (I know that all insurances are different). Is there any advantage or disadvantage to purchasing at CPAP.com vs. my local DME dealer?

I'm also currently a mouth-breather a lot of the time. I use Nasonex and Zyrtec for allergies but sometime need the extra boost of Afrin with camphor to clear the sinuses.

I guess the full mask concerns me with regard to getting a good seal and the nasal pillows with regard to mouth-breathing...

Looking for some experienced counsel on this.

Thanks!

[eric_burcham]

Hodwy! I just got my machine four days ago, but I have an extremely similar situation to yours, so I thought I would chime in.

I have a beard/goatee and have since I was old enough to start growing one. My hair started falling out at 15 (thanks genetics) and so I had to go with the bald with a goatee look to avoid the combover. I also have SEVERE allergies. 15 years of allergy shots, nasal sprays, hypoallergeneic everything in the house, and nothing helps much. I'm still a mouth breather.

How good your seal is will depend a lot on how thick your beard is. I have significant hair around my upper lip, down the sides of my mouth, and off the bottom of my chin. I had to clear our the space between my bottom lip and chin a little bit.

It is roughly this pattern... a lot longer on the bottom, but you can get the idea of where my skin is covered:
http://www.proudlyserving.com/images/face-goatee.jpg

My pressure is relatively high at 16/12 cm H2O. When the machine ramps up, I get small leaks. However, the machine is able to keep up and my Apnea event numbers are WAY down after just four days of adjustment, so it is definately a good sign. You have to have SOME leaks anywhay (the masks all have some built-in) so that you are not re-breathing your used carbon dioxide air all night, so don't get the idea that any little leak is a bad thing. What you have to watch out for is discomfort (wind in the eyes, for example) or annoying whistle sounds that will wake you or your bed-mates up.

I use a ResMed Mirage Quattro mask, which is pretty big. I goeas to the top of the bridge of my nose, and pretty wide around the mouth. I'm able to get a good enough seal with it for treatment to be effective without making the mask unwearably tight. Bottom line, it will take you a few nights to get it adjusted properly (don't rush this... make SMALL adjustments if you have a leak... 1/2 mm tighter on the strap at a time) but the end results should be that the tightness of the mask does not hurt your face, and you are getting the airway pressure you need.

I'll tell you this... four days and I'm hooked. Nights 1-3 were hell... tossing and turning, no sleep, lots of leaks, lots of TROUBLE to get even remotely comfortable. But once I got it to work for me..., well I won't say I feel great, but I didn't feel like I was trying to come out of a coma this morning for the first time in 15 years.

[Roman Hokie]

Thanks for the reply. Yeah, your photo represents my exisiting facial hair situation without the stubble I have from deciding I wanted to get back to full beard.

I'm not worried about a few rotten nights. According to Doc's estimate, I'm already in the SEVERE realm of AHIs anyway. I bet I can count 8-12 times of waking up within my 7.5 to 8 hours of sleep, not to mention the apnea events.

I'm looking at the ResMed S9 with the H5i (with optional chamber and climateline hose). Looks like disposable filters are actually cheaper and probably cleaner than the "permanent" ones.

My insurance company tells me that they'll cover 90/10 on the DME. So, I wonder what's considered "not-covered" by them on this little project.

You mention the mask. What other equipment are you running?

[Roman Hokie]

Okay, so I did some checking. One vendor says that his contract with my insurance provider only allows him to rent me the Intellipap Auto.

Another local provider is going to get back to me - the resp. therapist is with another patient at the moment and the receptionist didn't know that answer. She was surprised I didn't have more of a choice.

Oh, and cpap.com is considered out of network...

[AndrewB]

Also - consider nasal pillows as a mask option - I use the Resmet Swift FX.

When I grow my winter-beard in a few months I don't anticipage much trouble since the "mask" seats on the nostrils, not on your face.

[PetrusKy]

Is there any advantage or disadvantage to purchasing at CPAP.com vs. my local DME dealer?

Hi Roman, I asked that very same question in this thread:

viewtopic.php?t=51560

[sleepmba]

Roman Hokie,
I touch on your mouth breathing question in my blog listed below. Once you check that out, the next line may make more sense.

I am a sleep tech and do titrations. For gent's with beards and mustaches, I generally go with nasal masks and pillow type masks. I'm able to get a good seal and get an accurate titration.

Good Luck with your titration.

[Roman Hokie]

PetrusKy, I'm more than a bit overwhelmed at the size and volume of posts here, so I appreciate the pointer/link to your own education. Finding it very beneficial. Thank you.

sleepmba, thank you for the link to your blog. Great article on mouth-breathing. Last night, I used my Afrin (and am immediately going back to Simply Saline for regular moisturizing and irrigation) and had fantastic sleep with 12cm on a Respironics machine and a ResMed Activa Medium mask. To the point where I'd actually purchase it. I slept on my back from about 10:15 till 6am when I rolled over. Sleep center rules are that the patient is not to be woken from stable deep sleep, so I got an extra 30 minutes! The tech told me I took to the mask like a fish takes to water.

Interestingly enough, one vendor is only allowed to distribute the Intellipap. The other (through my insurance provider's website) only sells ResMed... So I believe I may assume those are covered, according to the phone call to the DME provider who said (without violating HIPAA) that she had a unit rented yesterday under the same insurance provider.

I have no copay, only 90/10 in network once my deductible is met.

Yeah, I'm really ready for this. Once the tech put me up to 12cm, I had no AHI events the rest of the night. Still a bit of soft snoring, but nothing to shake a stick at.

As I told my kids, that was an expensive night at the Hotel Sleep Center. But worth it.

[Roman Hokie]

A big thanks to the folks who've posted in this thread and those whose threads are open to read by all. I had a pretty educational day here and on the phone with DME providers.

I learned that, though I may be a congested mouth-breather, I was not one last night during titration and may not be one while on CPAP. I also learned that my pulmonologist writes scripts specifically for the ResMed S9, the "Cadillac" of CPAP, according to some here on the forum. I further learned that one of the local DME providers has a friend who is the nurse of the pulmonologist, so she's going to see if she can gently "light a fire" to get things going, particularly with regard to me being at the end of my plan year and looking at a $2500 deductible effective on 7/1.

Someone said that it does take a team (or a village) and I'm thankful for you all demonstrating that and helping me to take charge of my own CPAP education and decision-making. Otherwise, I'd probably end up with equipment that I don't want that didn't work.

Someone else made the comment about being open-minded about the big tube stuck to my face. Yes, I fell asleep in 6 minutes flat and slept for 7 hours and 45 minutes without waking/alert once. Open-minded works.

Any suggestions on whether to try to get the ResScan 3.10 software? I don't see it on CPAP.com but according to ResMed, it's for Sleep Professionals only. How much is it and how can I get it? Or am I really not supposed to?

So, I believe I'll be getting the S9 with the H5i and the ResMed Mirage Activa Nasal Mask. With the help of insurance.

[Nord]

You are doing very well...

Most people would crawl over broken glass to get the sleep you got...

PM sent.

Nord

[Roman Hokie]

Thanks, Nord. I hope to have my titration study evaluated and an earlier appointment scheduled by the end of next week... The RT wasn't sure she'd get to call me back today, but she did. I don't know if she's on commission, but she'll get my business for the S9 as that's the one that seems to be preferred.

[Roman Hokie]

Side effect noticed. 1st non-CPAP morning after my titration study. 3 whiteheads/zits underneath my nose - above my moustache.

Any ideas on the cause? Should I consider the same mask (had a great seal) that I had for titration, or a different one, like nasal pillows?

Thank you very much in advance.

[Nord]

If you are getting a great seal with moustache and all... I would not discard it right away.

The zits and sores can be a normal occurrence for people with sensitivities. Sweat... whatever.
There are pads that fit between the mask and skin and alleviate all kinds of maladies.
Look on CPAP.com for accessories...
Other members will chime in to advise what they use and they're success.
I'm afraid I don't use them.

Finding the right mask can be very difficult so when you find one that works... don't give up too soon.

Nord

[Roman Hokie]

thanks, Nord. Yeah, I'm not tossing it in yet. In a bit of pain now over it. I had too good a seal to look for plan "B".

Will check out the accessories.

[brazospearl]

You might want to try soaking all the parts that touch your face for about 20 minutes in really warm water with just a drop of mild soap in it. This has helped a lot of us with skin sensitivities. Congratulations on getting off to such a great start!