Dr. says I'm not tolerating CPAP

[bobbi4272]

This is a follow-up of my experience with APAP and heated tubing. I was loaned a PR System One APAP for the last 3 weeks to see if it made a difference. I am happy to say that I feel like a new person! The congestion, sneezing and getting sick has all but disappeared. Because I am hypersensitive to the air pressure, the APAP seems to be helping with that issue. The heated tubing has also helped tremendously. I have had a couple of nights with rainout but have the settings worked out pretty well now.

I am still searching for the right mask to use. I've been using the Wisp nasal mask most of the time. The last few nights I've had more mouth leaks. Have tried the total face mask and gave up on it. It was fine if I slept on my side, but awful with leaks when I was on my back. I gave up on the nasal pillows because of the noise and the feeling of more pressure. My nose doesn't like that much concentration of air.

I have been using fleece between my face and the headgear. I love not having creases in my face all day! Once I settle on a better mask then I will check out Pad-a-Cheek to see what I can use.

My doctor was very happy with how I'm feeling. After my last appt. on the 19th, she wrote the prescription for the APAP with pressure set between 8cm and 14cm. The DME sat on it and didn't submit it again because it was already denied once. After making them review it AGAIN. they sent it in and it was approved! I pick up my machine and a new mask tomorrow. I'll be getting the ResMed S9 AutoSet. Still trying to figure out which mask to try. I've tried the Quattro FX, Quattro Air for her, Liberty, Mirage. I'm sure there have been others but can't think of them. I do best with a full face mask but have huge issues with the leaks into my eyes. I wake up in the morning feeling like someone scraped their fingernail across my eyeball. I think the fleece will help with the marks, so I'm not concerned about that. I know I'll probably have questions and an adjustment period to go through again, but I know I'll manage with help from everyone here.

After struggling with CPAP for 3 years (December 28, 2010) I am finally feeling like a human being again. I had forgotten what it felt like to wake up and be energetic. Thank you to everyone on this forum. Everyone's comments and suggestions have helped more than you know. The most important thing I've gained is enough knowledge to be dangerous (to the DME and my doctor). Being able to use the Sleepyhead software has really helped nail down where the problems are. I will continue to work on better sleep hygiene. I hated going to sleep before. I used to average 5-6 hours a night and wouldn't go to bed until I was exhausted. I've been setting an alarm for myself. Now I'm averaging 8+ hours a night and I'm going to bed at a reasonable time. I actually want to go to bed now. For me, that is a miracle!

Happy Thanksgiving!

[islandboy5150]

I found my nasal block wasn't a typical sinus allergy, but they were swelling shut for no apparent reason. I started taking Advil congestion relief about an hour before bedtime and my nasal passages and sinuses opened up wide and dry, with no side effects. Maybe worth a try?

[RogerSC]

Good for you, sounds like you're well on the way to an answer that will make your life much more enjoyable. That's where we all want to be headed *smile*.

So glad to hear it, enjoy your new life!

[Foggy1]

Glad you are finding some relief!

I was never able to get a good fit with a Quattro either. Like you, I'd get that air right in my eyes. Plus, it always gave me a huge sore on the bridge of my nose. So now when I use a FF mask, I use the Fisher & Paykel FlexiFit 431. No leak problems at all. No sores. I know that fit varies for each individual, but if you try another FF, you might try this one out to see if it works for you.

[Janknitz]

Congratulations! I'm particularly impressed you did not give up when your doctor did. I hope he will learn from your experience.

[Todzo]

I've posted before regarding the problems I've been experiencing - congestion, sneezing, getting sick. My doctor finally decided I'm not tolerating CPAP. She recommended an oral appliance but at my last visit had said that was a last resort. She said something was better than nothing. I know my insurance won't cover an oral appliance and it would probably cost more than an APAP machine.

I told her I wanted to try APAP with heated tubing and she initially told me no. She said it would cause central apneas.

Good news Bobbi4272, your doctor understands some of the basic dynamics of high respiratory control system gain and how the machines play with that!!

At first she wanted to put me on the AutoIQ (?) for 30 days and then set me back up with CPAP. WHAT????

I would guess she is thinking of doing a sort of in home titration. I will make some comments and suggestions regarding what might be a better choices in your case later in this post.

...

She also gave me the Zzoma positional pillow to try. Until I get a new machine, I'm not going to use my CPAP machine. I've been using the pillow since Friday. My husband says he's only heard me snoring very quietly a couple of times. During my titration night, my AHI was only 3.3 on my side. The pillow is a little weird, but not uncomfortable. I have fibromyalgia and sleeping in one position seems to make it worse but I'm going to keep at it and see what happens. The congestion and sneezing are gone, so I'm happy about that.

I'll keep trying to figure this out. I would have quit if I hadn't stumbled onto this forum. Thanks. And thanks for listening!

There are three nonanatomic characteristics which are causes of OSA. Minimal genioglossus (tongue) muscle responsiveness during sleep, low arousal threshold, and high respiratory (breathing) control loop gain[1]. I think that the fact that your symptoms relate so strongly to your position may indicate that you deal with minimal genioglossus (tongue) muscle responsiveness during sleep. However the symptoms you mention the most are familiar to me as being strongly related to high respiratory (breathing) control loop gain.

Several years ago I know they were experimenting with hypoglossal nerve stimulation (HGNS) actually using probes to electrically stimulate the muscles in the tongue. So first suggestion, talk with your doctor regarding HGNS or possibly using a tongue retaining device.

Several report much help by using tongue muscle exercises. Perhaps you would indeed be one who could be helped by these.

In reading some of the medical literature about the respiratory control system gain and what to do when the gain becomes too high I ran across EERS[2]. The doctor I was working with at the time had no problem with me trying it (I was and am using a conservative amount) and it did make the nights go very much better. It works by keeping one from blowing off too much carbon dioxide and so changing the blood chemistry to severely reduce circulation and cell metabolism. It facilitates better carbon dioxide maintenance and likely better breathing control through the increased circulation and metabolism.

So second suggestion, talk with your doctor (the one who appears to understand respiratory control system gain) about possibly using EERS.

Third suggestion, have your vitamin D levels checked. Dr. Stasha Gominak describes in her YouTubes how many of the areas of the brain which control breathing are very sensitive to D3 levels. Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

Fourth suggestion, rig to use CPAP data and do so. For lifestyle management. But in your case also as a much better way to titrate your therapy. If you have data you can make a very small change in pressure and look at several days of data to determine if a positive result occurred. Doing this I moved my own pressure from 15 cm/H2O to 8 cm/H2O over a period of some sixty days. I believe my therapy is much closer to the actual lowest pressure required to prevent obstruction which is the goal. Talk with your doctor about how this could work. There are machines which use the cell system to make data available to your doctor and your doctor can make changes remotely as well.

Fifth suggestion, learn how to eat well and move well. Start a long term relationship with a dietitian. Learn how to care for your microbiome, limit added sugar to 100g/d, no GMOs or growth hormones. Start a long term relationship with a personal trainer and pursue an active lifestyle. I am coming to believe that as we move toward true metabolic health problems with OSA reduce. Perhaps therein is a cure.

[1] http://www.atsjournals.org/doi/abs/10.1 ... o8DjEPfu8Y

[2]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[Blaifarm]

I've posted before regarding the problems I've been experiencing - congestion, sneezing, getting sick. My doctor finally decided I'm not tolerating CPAP. She recommended an oral appliance but at my last visit had said that was a last resort. She said something was better than nothing. I know my insurance won't cover an oral appliance and it would probably cost more than an APAP machine.

I told her I wanted to try APAP with heated tubing and she initially told me no. She said it would cause central apneas.

Good news Bobbi4272, your doctor understands some of the basic dynamics of high respiratory control system gain and how the machines play with that!!

At first she wanted to put me on the AutoIQ (?) for 30 days and then set me back up with CPAP. WHAT????

I would guess she is thinking of doing a sort of in home titration. I will make some comments and suggestions regarding what might be a better choices in your case later in this post.

...

She also gave me the Zzoma positional pillow to try. Until I get a new machine, I'm not going to use my CPAP machine. I've been using the pillow since Friday. My husband says he's only heard me snoring very quietly a couple of times. During my titration night, my AHI was only 3.3 on my side. The pillow is a little weird, but not uncomfortable. I have fibromyalgia and sleeping in one position seems to make it worse but I'm going to keep at it and see what happens. The congestion and sneezing are gone, so I'm happy about that.

I'll keep trying to figure this out. I would have quit if I hadn't stumbled onto this forum. Thanks. And thanks for listening!

There are three nonanatomic characteristics which are causes of OSA. Minimal genioglossus (tongue) muscle responsiveness during sleep, low arousal threshold, and high respiratory (breathing) control loop gain[1]. I think that the fact that your symptoms relate so strongly to your position may indicate that you deal with minimal genioglossus (tongue) muscle responsiveness during sleep. However the symptoms you mention the most are familiar to me as being strongly related to high respiratory (breathing) control loop gain.

Several years ago I know they were experimenting with hypoglossal nerve stimulation (HGNS) actually using probes to electrically stimulate the muscles in the tongue. So first suggestion, talk with your doctor regarding HGNS or possibly using a tongue retaining device.

Several report much help by using tongue muscle exercises. Perhaps you would indeed be one who could be helped by these.

In reading some of the medical literature about the respiratory control system gain and what to do when the gain becomes too high I ran across EERS[2]. The doctor I was working with at the time had no problem with me trying it (I was and am using a conservative amount) and it did make the nights go very much better. It works by keeping one from blowing off too much carbon dioxide and so changing the blood chemistry to severely reduce circulation and cell metabolism. It facilitates better carbon dioxide maintenance and likely better breathing control through the increased circulation and metabolism.

So second suggestion, talk with your doctor (the one who appears to understand respiratory control system gain) about possibly using EERS.

Third suggestion, have your vitamin D levels checked. Dr. Stasha Gominak describes in her YouTubes how many of the areas of the brain which control breathing are very sensitive to D3 levels. Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

Fourth suggestion, rig to use CPAP data and do so. For lifestyle management. But in your case also as a much better way to titrate your therapy. If you have data you can make a very small change in pressure and look at several days of data to determine if a positive result occurred. Doing this I moved my own pressure from 15 cm/H2O to 8 cm/H2O over a period of some sixty days. I believe my therapy is much closer to the actual lowest pressure required to prevent obstruction which is the goal. Talk with your doctor about how this could work. There are machines which use the cell system to make data available to your doctor and your doctor can make changes remotely as well.

Fifth suggestion, learn how to eat well and move well. Start a long term relationship with a dietitian. Learn how to care for your microbiome, limit added sugar to 100g/d, no GMOs or growth hormones. Start a long term relationship with a personal trainer and pursue an active lifestyle. I am coming to believe that as we move toward true metabolic health problems with OSA reduce. Perhaps therein is a cure.

[1] http://www.atsjournals.org/doi/abs/10.1 ... o8DjEPfu8Y

[2]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

Very good post, Todzo. Very good suggestions, especially the vit d part and of course, and the eating and being more active.