Expert Interview: Dr. Avram Gold

[rosacer]

@ Socknitster

Helo

I'm completely mixed up. Could you please tell me in few words the difference between UARS and OSA?

Speaking about the size of the inside of the mouth, my Dr who is a really good pulmonologist asked me to open the mouth and then he said 'you have the mouth of an OSA patient'. Soo...

@ SleepingUgly

I find very logic the explanation about why a FFM wouldn't be as efficient as the other mask for OSA treatment from a point of view of the mechanical thing, I can't say it's good for nothing in every case but I have my doubts about it's efficiency. But that's only my opinion.

I was trying to find a FFM because I'm having teeth pain lately which I think could be related with mouth breathing but after this information I will do my best to find another solution first. It's not that you SleepingUgly scared me, it's only as I told I find very logic the explanation of Dr. Gold. I haven't had time to listen to the MP3 but I will do it too.

@ KatieW

Thanks very much Katie for the MP3, it's always very kind from you to think at us and to give us the good informations you find, BIG THANKS...

[socknitster]

Rosacer,

OSA: airway completely collapses

Hypopnea: airway collapses to about 50% of "waking" airflow.

UARS: a flow limitation or snore (silent or audible) that allows less than optimal or "waking" airflow. It does not typically cause blood oxygen desaturations. The problems of UARS do not stem from so hypoxia, like the problems of OSA do, but rather from the activation and hypersensitivity of the hypothalamus/pituitary/adrenal axis and the limbic system. It is this activation that results in poor quality sleep, mood and pain issues.

The symptoms are not caused by the decreased airflow directly, but indirectly by the brain/central nervous system perceiving the decreased airflow as a threat and putting the body "on alert" as if a predator were present and we are in direct danger of being devoured. The threat is translated into stress hormones flooding the body. Increased blood pressure, light sleep (remember, we are expecting to be devoured at any moment), anxiety. Then these symptoms cause even more symptoms--the light, unrefreshing sleep causes pain, mood problems and many other things which vary depending on which somatic syndrome you are discussing.

This kind of activation of the HPA axis and limbic system was never meant to be more than temporary to get a person (or animal) through a stressful moment alive. It is not meant to be a permanent state of being. When it becomes chronic and never resolves that is a real issue.

Many people have these flow limitations and do not ever experience these symptoms. It is usually triggered by a "big stress" ie: surgery, car accident, death in the family, even a virus. I've had many of these symptoms in a very minor way for most of my life but it was when I got H1N1 in fall off 2010 that it became a crisis and I've never been the same since. My diagnosis is chronic fatigue syndrome.

This is all simply my understanding of what this is all about. I hope this helps others to understand. Listen to the mp3. It is worth your time no matter what your diagnosis is. We all know people who suffer from somatic illness and who desperately need help. We owe it to them to make this sleep disorder better understood.

Jen

[rosacer]

Thanks very much Jen, now I understand.

Yes I know somebody who is always tired, for sure there is more than one cause to this but it's good to know about UARS. I have too, a friend who has fibromialgia; I read the information Katie posted about UARS, fibromialgia, OSAS. I hope Drs. will find a permanent and efficient solution to UARS and fibromialgia; on top of being able to make a good diagnostic of this 3 syndromes.

Rosie

[mars]

I can certainly stand to move my chi around more. I took an intense chi gong class last fall. It was so intricate I couldn't remember any of the moves to practice at home. I need to go back and do more because in the short term it was very helpful for me. But I need to find one that I can practice every day at home. Maybe a video.

Jen

Hi

Here is a good link that I have used -

http://www.beauty626.com/

although not as many Chi Kung DVD's as there used to be.

Suggest you stay away from Terence Dunn (Zen Bear), he is unreliable and ripped me off.

You can PM me if you have difficulty.

cheers

Mars

[BethK]

Roster, I just started using CPAP in January, and have read your posting from Friday, March 25......I am one of those newbies who is reading all these posts and am scared to death of this whole (new) diagnosis. I am over 55 and have never had medical issues....until this.........so the fear is sometimes overwhelming. I am unable to use a nasal device because once the pressure builds up I open my mouth (and am not considered a mouth breather normally) I am on my third mask, and also am changing physicians due to an inability to connect with him, his office staff, and the medical supply group. I have to say, this has been one miserable experience.

[Bright Choice]

I've been following the conversation regarding Dr. Gold's comments regarding avoiding ffm's. It makes sense to me and I am going to try to replace my Quattro FX ffm with a nasal mask or pillow. One question: If using a FFM compromises therapy, would that mean that if your titration was done with a ffm that the titration would have been compromised as well?

[SleepingUgly]

One question: If using a FFM compromises therapy, would that mean that if your titration was done with a ffm that the titration would have been compromised as well?

I don't know...this is the first time I've heard a professional say that about FFMs. You could email him and ask him!

[Jersey Girl]

Dear Friends,

I also listened to the interview with Dr. Gold. My husband uses a Mirage Quatro Full Face Mask. (We tried the FX, but just couldn't get the leaks by the eyes to resolve, so back to the good old standard.) My husband was diagnosed with UARS - and crescendo snoring, also had some leg movements. A cpap pressure of 9 and a new s9 made all the difference for both of us! No more snoring for him and peacful quiet for me. His legs are no longer moving all over the place either. He tried a papcap, chin strap, everything, but still his mouth dropped open in deep sleep and so the FFM was and is his best solution. The results have been remarkable for us.

Regards to all,

Jersey Girl

[SleepingUgly]

Check out this website for an explanation consistent with Dr. Gold's about why FFMs are not effective (HIS words, not mine! Don't kill the messenger!). But this site explains it in a lot more detail:

http://www.acurest.com.au/truefit-custo ... face-mask/

[Bright Choice]

Check out this website for an explanation consistent with Dr. Gold's about why FFMs are not effective (HIS words, not mine! Don't kill the messenger!). But this site explains it in a lot more detail:

http://www.acurest.com.au/truefit-custo ... face-mask/

Great info, sleeping ugly. Thanks.

[DreamDiver]

Check out this website for an explanation consistent with Dr. Gold's about why FFMs are not effective (HIS words, not mine! Don't kill the messenger!). But this site explains it in a lot more detail:

http://www.acurest.com.au/truefit-custo ... face-mask/

Meh... They're selling something. Regardless., you just have to use what works for you, eh?

[ozij]

From the above site - with no reference to studies proving the statement:

"•Anatomically, only 5-10% of CPAP users need a full-face mask."

"Note: We need to be careful here about being absolute when making statements about the airway. There are obviously differences in the structure of airways between individual patients and no two are exactly the same. Some people have shorter soft palates and there are many factors contributing to the degree of relaxation which occurs in combinations of the 26 or so muscles which make up the upper airway. Some people have also had surgery which alters the shape of the airway.

That said, Professor Rapoport contends that about 90% of the population he sees can be treated with nasal CPAP alone."

Real Mouth Leak
One problem which does sometimes arise with nasal masks is mouth leak. This is where pressurised air from a nasal CPAP mask gets past the junction of the soft-palate and the tongue and into the mouth, where it pushes open the lips and creates a leak.

Remember that CPAP works by holding pressurised air in the airway, so a leak ultimately compromises therapy. Now, there are three basic solutions to this issue: a chin-strap (worn over the head and under the chin to support the jaw and the lips during sleep, helping to keep the mouth closed); a small piece of tape (vertically across the centre of the lips to provide them with support, NOT EVER laterally across the whole mouth – this can be quite dangerous); or a full-face mask.

Again, the normal treatment pathway is to try a chin strap first, then tape, then possibly both a chin strap and tape at the same time. If this doesn’t work, then we have a CPAP patient who is genuinely a mouth breather, who cannot resolve their mouth leak using other methods. They are the 5-10% of the population who really do need a full-face mask.

You can ignore the comment about vertical tape -- here's a peer reviewed study in which the inventors of ResMed's autoset checked the effect of taping:
http://www.ersj.org.uk/content/14/6/1251.full.pdf+html

By all means, do your best not to use a full face mask -- but remember you may belong to the 5% to 10% (based on what?) who may need to revert to it. I taped for close to 5 years -- but no longer can.

[CuriousNewbie]

That interview was great. Thanks so much for posting about it!

I'm left wondering if I need to make any revisions to my treatment. A not so brief background:

I started waking multiple times a night when I was 16 years old. I would wake up not exactly hungry, but anxious and I would have an extreme urge to eat a sugary or high carb snack. I'm now 43 and have been waking up multiple times a night with these feelings/urges ever sense. I was thin at age 16 but have put on weight over the years....all the night eating hasn't helped. I had sleep studies in my 20s and 30s that came back normal.....no sleep apnea, normal sleep patterns, but with multiple spontaneous arousals. My sleep study last fall finally came back with an apnea diagnosis and I have been on CPAP since November. At first CPAP was great, I was only waking up once a night and without that old urge to eat. I quickly lost 10 pounds. Then I started waking more frequently, but still much less than I used to. Before CPAP I used to wake up every 30-60 minutes from 10pm until around 2am, and then sleep from then until the alarm clock went off. The first 2 months of CPAP I slept through the night a few times and woke up once most of the other nights. Now I wake up 3 times most nights.

After hearing the interview and doing a little research I think my problems were definitely UARS. For one thing I have always suffered with very cold hands and feet. My blood pressure is borderline low and I often get dizzy upon standing up too quickly. I'm never at danger of falling asleep during the day doing regular things (like driving or watching TV), but I used to be fatigued a lot.

I'm wondering if my pressures need to be tweaked or something. I'm on a constant setting of 12. My titration study seemed to indicate that I was roughly as well served by a pressure of 10, 11, or 12 (I have a copy and have reviewed the graphs). I don't recall if my doctor said why she thought 12 would be better than 10 or 11. I have used a nasal mask at first, then tried Swift FX nasal pillows for a few months, back to the nasal mask the last month because the nasal pillows were bothering me. I wake up with a dry mouth many mornings, but not all.

10 pounds of weight loss isn't much, but it dropped me from 205 to 195 and my wife and I have always noticed that as soon as my weight gets above 200 my snoring gets much worse. So maybe even 10 pounds could have caused a difference in what pressure I need?

[M.D.Hosehead]

Glad you spotted that, SU. And thanks for the link ozij.

At the least, it is a more thorough and coherent account of the theory many sleep professionals, including those at Accurest, hold.

If I say theory doesn't seem to be true in my case, they can always claim I wasn't titrated correctly. That too-easy response doesn't explain the experiences of many members of this board, who have tried different nasal masks, with various pressure settings, carefully observed the result, and still have mouth leaks. (RG still uses tape.)

(I know the theoretical mechanism doesn't apply in my case, because of the UPPP I had——one of my worse decisions.)

I suspect there's sample bias in the theory that pressure applied to the nose seals off oral cavity. In other words, sleep professionals don't see a representative sample. People who switch to FFM and do fine thereafter, or nasal mask users who succeed by using tape don't go back to the lab.

I'm curious what our pros think.

[SleepingUgly]

If I say theory doesn't seem to be true in my case, they can always claim I wasn't titrated correctly. That too-easy response doesn't explain the experiences of many members of this board, who have tried different nasal masks, with various pressure settings, carefully observed the result, and still have mouth leaks. (RG still uses tape.)

Unless I read the site wrong, I don't think they were saying that you wouldn't have mouth leaks, but that FFMs are not the best way to deal with mouth leaks. They suggest chin straps and tape first.

I suspect there's sample bias in the theory that pressure applied to the nose seals off oral cavity. In other words, sleep professionals don't see a representative sample. People who switch to FFM and do fine thereafter, or nasal mask users who succeed by using tape don't go back to the lab.

Also, keep in mind that those that come to this website are also not likely a representative sample, as the people who experience less difficulties or have more support to resolve their difficulties may not arrive here.

I always wondered why my AHI is higher and my pressure needs seem higher with a FFM mask. I wonder if this is a possible explanation--that it may take higher pressure to keep my airway open if the pressure is coming through both orifices!

I'm curious what our pros think.

Me too. This is definitely not a universal belief among sleep professionals, as I had one sleep doc who themselves used a FFM.

Muffy, what do you think of all this? Do you titrate people on FFMs? Do you see any pressure need differences between nasal vs. FFMs?