Expert Interview: Dr. Avram Gold

Most of the year I breathe exclusively through my nose while using my Hybrid FFM. But then there are times when congestion causes me to breathe through my mouth (and nose).

Pollen season is now upon us and our cars are yellow-green. I spent yesterday afternoon outside in a light wind and had considerable congestion upon going to bed. Consequently, I had long periods of mouthbreathing last night and awoke once with a dry mouth and upon arising it was still dry.

Thinking about the comments that FFMs will not treat sleep apnea I decided to check my data for last night.

I was not surprised to see this:



That is a nearly perfect score.

My belief is that FFMs are treating my sleep apnea very effectively and do the same for many other people.

Tonight I will do a couple of neti pot rinses to try to eliminate mouthbreathing.

(For reference my sleep lab AHI was 57 with long apneas and desats in the 70s).

Rooster,

Still sleeping on your side to be able to use the lower pressures? I always do so much better on my side, but can only sleep on my left because I swallow air on the right side. Sleep is so frustrating for me!

Jen

socknitster wrote:Rooster,

Still sleeping on your side to be able to use the lower pressures? I always do so much better on my side, but can only sleep on my left because I swallow air on the right side. Sleep is so frustrating for me!

Jen

Jen, I start out each night sleeping on my tummy (Falcon position) because there is no aerophagia in this position. Very often, around 4:00 a.m., the body has a powerful urge to get into another position and I will roll onto either side and finish out the night. The aerophagia is very often at a moderate level during this time but bearable.

I am getting very good results at 8.5 cm pressure as long as I stay on my sides or tummy. In the sleep lab they titrated me at 19 cm on my back and from my experience at home that is close to the correct pressure. But the aerophagia is horrible at that pressure so I avoid backsleeping by wearing a small backpack.

The Daily Details report in the post just above was of a typical night when I avoided backsleeping.

Posted below is a night where I awoke just after the five hour mark, removed the backpack, and lay on my back. Intentions were to roll onto my side before falling asleep. But I did fall to sleep on my back and the apneas started. You can see the machine responds by gradually raising the pressure but is unable to control the apneas. When the machine got to 15 cm I was awakened and rolled onto my side.



I take pride in having more "adventuresome" nights than my friends, even the young single ones.

Best of luck to you in moving the teeth around and generating additional bone in the jaw and hard palate.

Thanks for the illustrations. Good for newbies to know how important sleep position can be to their therapy. I think that for most of us, it's critical that we avoids sleeping on our backs.

Jen

Very interesting Rooster's graphs. I thought my apnea was positional but I see now what is a real one.

After listening to Dr. Gold MP3 I decided to increase a bit my lower pressure, from 8 to 8.5 to see what happened because even with a low daily AHI I am very often still tired.

The result for the first night was a graph with only 4 obstructives in 8 hours of sleep, nothing else. I had never seen a so clean graph since the beginning of my treatment. I'm wondering if me to I have UARS instead of OSA .

Another thing I noticed is if I eat something else than a very easy to digest food (a cup of milk or a small fruit) before going to bed, I will have a big AHI and a high 90 % pressure with aerophagia. Supper need to be not greasy of hard to digest and at least 3 hour prior to sleep.

In conclusion, I don't know what is the matter with me what I know for now is what I need to do to have the best chance of a good night of sleep.

Thank you guys for all the information you give to us.

Last week I went to an appointment with my 4th sleep doctor. Yes, 4th. (1st was an ENT, second was Neuro, and third and fourth are pulm.)

I talked with him at length about UARS. I was misled by the sleep lab that they test for UARS with a nasal/oral transducer. He told me that no one will test for UARS except in a research setting. I have no idea if this is true or not. He reiterated what I had been told before that insurance will not cover a diagnosis of UARS so it is not a diagnosis you want to get (his words.) He said they use new extra-sensitive belts to detect it.

He never said it wasn't a real problem.

Also, he told me that my Spontaneous Arousal Index of about 9 was actually below normal (15-20 is normal for my age group according to him--he even pulled up a scientific study onscreen to show me) and that I have great sleep on cpap and should just let it be and continue where I am.

Now, I'm just as frustrated as ever because I am back to square one. But maybe I don't really have this problem. I don't know where to go to find out. I'm tempted to have a study to see if I even still have sleep apnea, but don't think I want to waste my money unless I know they are also testing for UARS. I wish someone would put together a list of places that test for this.

Jen

socknitster wrote:
Also, he told me that my Spontaneous Arousal Index of about 9 was actually below normal (15-20 is normal for my age group according to him--he even pulled up a scientific study onscreen to show me) and that I have great sleep on cpap and should just let it be and continue where I am.

My doc always says if I don't feel "great" then it is still a problem, instead of just looking at the numbers.

Did you note the name of that study? I would like to read it.

Now, I'm just as frustrated as ever because I am back to square one. But maybe I don't really have this problem. I don't know where to go to find out. I'm tempted to have a study to see if I even still have sleep apnea, but don't think I want to waste my money unless I know they are also testing for UARS. I wish someone would put together a list of places that test for this.

I would be frustrated too!

@sleepingugly and @roster:

My concern is that I have air leaks out of my mouth when I'm unconscious. Any other time I can and do breathe just find via my nose, including as I am falling asleep and waking up. But while in deep sleep, my jaw falls open and there goes the air. With a strap, my jaw stays put, but I end up motorboating with my lips. Either way, the air is leaking and my AHI is up.

I know that you two don't have all the answers, and I understand that it's this doc's opinion that if you can clear the nasal cavities to enable better breathing through the nose then this is a better method than a FFM. But, what about those like me who have nothing wrong with their nasal passageways, and some accident of physiology causes air to leak out of my mouth? What can we do besides using the FFM? I really am open to suggestions here, as I have no other issues using the nasal mask except the air leaks from the mouth.

Taping is out of the question for me. I apologize in advance for that, but I refuse to risk sucking CO2 for hours on end if the power goes out. I know many folks here have had a lot of success with it - and more power to them - but I have yet to meet one medical professional (including the ones I trust a lot) who would recommend it.

My doc always says if I don't feel "great" then it is still a problem, instead of just looking at the numbers.

Did you note the name of that study? I would like to read it

Rebecca,

All he did was go to pubmed and type in "normal arousal" or "normal arousal index" and up came a study showing normal indices for different age groups. He says there have been several studies about this.

I agree. I still don't feel great. I'm just going to have to do more research. Again. The problem is, I call the labs and they tell me they do it. I don't think that the lab techs know what the &%#$@& (bleep) I'm talking about. It is really annoying to call and think you have verified this critical piece of info only to have that trampled in the dust when you go see the doc.

This doc is clearly intelligent though. He noted that I said that I've made significant gains in my recovery when recently switched (after long-time resistance) to an SSRI--he reminded me that severe depression can mimic chronic fatigue syndrome. I never thought I was depressed--I still had interest in things and wanted to do them, just not having the energy to do all I want to. And being very irritable. Who knows. With these strange, amorphous syndromes. Maybe one day they will find that some of us lack a critical enzyme that makes serotonin and that is what causes all this for a subset of the population. There has to be more than one cause.

Nevertheless, I'm going to keep looking for answers. I just hope I haven't done the braces in vain.

Jen

I'm on phone, so brief...it is not true that uars is only tested in research setting (though universities may it may not tend to go more of it). Dr.gold is obviously doing it and stanford wont miss an sdb diagnosis if one exists.

socknitster wrote:
Jen

I don't have any answers for you and can only suggest reading (or rereading) Dr. Park's articles and blogs http://doctorstevenpark.com/ .

I would like to know why you object to a FFM. At the very least it is much better than using a nasal interface and mouthleaking much of the night. At the best a FFM provides excellent therapy.

TalonNYC wrote: Taping is out of the question for me. I apologize in advance for that, but I refuse to risk sucking CO2 for hours on end if the power goes out.

My great preference is a FFM over taping but here are two comments to your taping objections.

First, if the power goes out you are unlikely to breathe CO2 for hours. Because when the power goes out your machine stops working and you start having apneas which will likely wake you up. The same would happen if your mouth were not taped.

Second, if you are worried about continuing to sleep while the power is out and your machine is not working, buy an inexpensive power-off alarm. I use this one http://www.amazon.com/Reliance-Controls ... 106&sr=8-1

roster wrote:I would like to know why you object to a FFM. At the very least it is much better than using a nasal interface and mouthleaking much of the night. At the best a FFM provides excellent therapy.

I *don't* object to the FFM (or the Hybrid for that matter). I use an FFM so I don't have to tape. Once I've been getting good therapy for a few months, I'll lab rat the Hybrid and give that one another go. Also own a power alarm, the comment about sucking CO2 for "hours" was hyperbole.

I was expressing shock that an expert in the field would disregard several classes of interface out of hand like that. I tried the nasal mask, and if my only choices are to circumvent a carefully created safety structure (allowing for mouth breathing if the machine stops supplying air to the nasal interface) or get less effective therapy, I'm taking the safer option. Power alarm or not, there is a reason that every full face mask (and the Oracle as well) have anti-asphyxiation valves on them.

I was more agreeing with you on this one, Rooster.

TalonNYC wrote:I was expressing shock that an expert in the field would disregard several classes of interface out of hand like that.

Did you listen to the interview?

Nope, not yet. I was basing my opinions off the quotes posted here. I do intend to listen to it when time permits, however. If I'm in error, I will post that as well.