A Sleep Apnea Doctors Know Nothing About (Or Can't Treat)

[DyingEveryday]

Sleep Apnea survivor here. Pressure is 14, CPAP mode (Not BiPAP), sleep supine.

If you care or have time, here's my whole situation:

I’m currently a 40 year old male and was diagnosed to have mild sleep apnea, according to my last 3-4 sleep studies. However, there is major concern that my diaphragm is severely weak and damaged in some way; Let me elaborate:

First off, I was prescribed clonazepam to ease anxiety and panic attacks around 2001 (.5 mg, twice daily) and had been taking them till about 2005. Fortunately, it had no effect on my sleep whatsoever – in fact, I was able to sleep much better. Withdrawal symptoms prevailed soon thereafter, but only for 6 months and returned back to normal.

Then around the fall of 2008, I began to feel somewhat fatigued and tired throughout the day. I had first attributed this to working many hours as an software engineer at USAA. And after sometime had passed, I was beginning to wake up in the middle of the night rapid heart rates, panic attacks, and sweating. I would have immediately said to myself I was having another anxiety attack, but this time I felt like I was literally chocking to death. I was feeling dizzy and confused and very nauseated. My arms and back were aching and tired. This surely was not just some panic attack.

So after talking to my primary care doctor, he suggested a sleep study. After the study, it was found I had mild to moderate sleep apnea with a needed pressure of 8.0. I was back to normal and getting the sleep I needed. But then my condition worsened. Just after 4 months, my pressure needed adjustment again. This time it jumped to 10.0. Another 6 months went by, and I now needed 12.0. These changes were all done under a year. I simply did not understand. But the doctors stated that I needed to continuously participate in sleep studies (1000 dollars each time) to get a better grasp of what has happening. But there were problems that followed soon after.
The condition began affecting my daily work routines and my family time. With no way of knowing what my correct pressure was, the CPAP was not doing its job. After 2 years at a pressure of 14 – I was not able to function normally anymore as I could no longer afford to pay. I looked tired every day and simply did not have the energy to carry on my daily routine. Co-workers thought I was under the influence of drugs and alcohol due to my eyes looking so tired and my body looking fatigued. It just wasn’t fair. And even worse, I had to go back on Clonazepam to ease the stress hormones caused by sleep deprivation.

I began to take matter into my own hands and research. I first thought that perhaps my tongue or other mouth/throat tissue was the cause. Some stated my soft palette was too long. Some doctors stated my tongue was too big. But they simply could not guarantee that was the cause. So the first procedure was done on my nose and had my deviated septum corrected. Amazingly, it did clear the issue for a bit, but soon thereafter, the problem came back. I remember before I had the surgery, there was a biopsy done on my stomach to determine of I had ulcers. (There is a point to this and an ending soon enough). I was so frustrated that I learned of the clinical settings ‘hack’ on my machine and started to experiment with them myself. What I discovered that even though the pressure increased, it would only put a temporary bandage for a while. And when I tried to set it to 18.0, I may have reached the tipping point where I could not breath (I may have left the so-called ‘sweet’ spot and worsened my AHI). So I returned it back to 14 to avoid any further complications. I realize this was completely wrong, but I was frustrated. Ultimately, I found that raising my pressure did NOT fix my problem.

I went into depression. My family was beginning to become affected as well (I have 2 kids, 12 year old daughter and 9 year old son). I hit rock bottom and could not understand if this was my time. With no way of being able to fix this condition, I was about to hit overdose. Well, here is where I go back to thinking why my diaphragm is affected.

My friend invited me to sing at a contest (X-factor show, Simon Cowell - yes, I know, that was pretty dumb of me to even try lol) back in 2011. I happen to be a singer, and my friend thought it was be good to get my spirits back up and hit Dallas, TX with my wife to audition. I said, fine, I need to practice again and so I did.

At first, I was already feeling SO MUCH PAIN in my stomach. I could not understand why. My stomach muscles felt so fatigued and overwhelmed that I was already out of breath on the first song. I had a rapid heart rate and began to feel dizzy. So I stopped and waited the next time. Tried again, and this time I was able to sing 2 songs. The next day, I was progressing to singing more songs. All the while, (as you are probably asking yourself), my sleeping with the same pressure of 14.0 began to get better. I was in total awe. It didn’t start hitting me that I was beginning to get quality sleep after a few days. Why was this happening? I knew my diaphragm was my ‘power tool’ to sing, but I didn’t know it had anything to do with improving my sleep...or did it?

So after the audition (failed!), I kept it up. I started to feel alive again; I cried after figuring out that I finally treated my issue. But wait….

I still needed my machine, so let me explain that a bit: Normally, my AHI was around 8-10 with an AI of 3 without the mask. With the CPAP, the AHI would average between 3.0 to 5.0 and an AI of .8 to 1. Most RT’s would think this is perfectly fine, but I would STILL feel very fatigued and tired. So when I sang, my AHI dropped to 1.0 – 2.0 with zero AI. Sometimes there was zero AHI. And I felt great. However, this came with a caveat.

If I stopped singing for a good 3 days, the condition gradually came back. Why? What was this suggesting? I’m not an obese person; maybe my BMI is a bit over, but not terribly over. But why wasn’t my diaphragm getting better? Why did I need to keep singing? This is where I am left with.


So I usually have daily results from my CPAP as such (Ranges):
AHI: 3.0 - 4.0
AI: 0.2 - 0.7

***About two days ago of this writing, I woke up feeling a bit more tired and exhausted than usual. I glanced at my CPAP results display and saw something scary:
AHI: 20.8
AI: 5.7

What just happened....This is the first time I've seen this***

Anyway, What do you guys think?

[Stormynights]

I am probably the dumbest one here but I have noticed that when my minute vent is higher, I feel better. I think I am normally a shallow breather. Maybe singing opens up your lungs where you are breathing deeper.

[SleepyToo2]

Fascinating story, and thanks for sharing. There are many factors that are involved in sleep apnea, and like many medical conditions it is hard to know in an individual case what is causing the problem. Documenting the symptoms and possible resolutions for your docs may help. A couple of observations, however.

Firstly, we know that the diaphragm is intimately involved in the breathing process. Whether this changes at night, I don't know. Some people have suggested that humming, or singing, or playing the didgeridoo may help, but the data from clinical trials are limited/non-existent. On the other hand, if it works for you, do it. It does make sense because you are exercising the parts involved in breathing. Just doing any exercise may help improve blood flow, and get your breathing rate up, so it may help ease some of the apnea problems for some patients. Exercise is good for you anyway.

The occurrence of stomach juice reflux will also affect our breathing. This is not necessarily acid, so I recommend research on foods that may be associated with reflux, and remove them from your diet. Does that make a difference? The only way you will know is to keep a diary of _everything_ that you eat, and how you sleep/feel after eating.

Next, allergies have a big role in my apnea, so depending on where you live, that is something to consider. Take an antihistamine and see if that makes any difference.

Your changing pressure needs sound like an auto machine may be better for you - have none of your docs suggested that? If cost is an issue, check out some gently used options.

Has your weight been constant through all your trials with CPAP? Weight change has an inconsistent effect on AHI, but it may be worth considering. You say you are overweight but not obese? I fit into that category, although I am a few years older than you. There is insufficient evidence to guarantee that weight loss alone will "cure" apnea, but a change in diet and exercise programs may help. Eliminating wheat and, I believe, dairy, may help.

It sounds like you need to do more experimenting, so good luck, and keep us informed of your progress.

[2 B Sleeping Soundly]

I am probably the dumbest one here...

Sorry Stormy but I would have to disagree with this statement .

...but I have noticed that when my minute vent is higher, I feel better. I think I am normally a shallow breather. Maybe singing opens up your lungs where you are breathing deeper.

I was thinking the same thing and have found that when I get more aerobic type activities that open up the lungs to more deeper breathing that it really beneficial to my overall health, improves my PAP therapy, and helps my breathing and the quality of my voice while singing, weather in the shower or at church... must be something to it

[BlackSpinner]

Breathing exercises have been shown to help with certain types of apnea.

Fill in your profile with the kind of machine you have and people will help you get software and interpret the graphs- assuming you have a decent machine.

[chunkyfrog]

Google Susan Powter. Her weight loss/self improvement book stressed the importance of breathing in improving your health.

[NateS]

Dying,

There is likely a relationship between your experience with singing and the use of the didgeridoo in treating sleep apnea.

Google: didgeridoo apnea

See, for example:

http://sleepapneadidgeridoo.com

https://www.youtube.com/watch?v=qxDYY3xWnIg

http://www.sleepapnea.org/diagnosis-and ... ridoo.html

http://www.laoutback.com/Didgeridoo_and ... a_s/42.htm

Regards, Nate

[DyingEveryday]

So dam sorry for the late reply guys..and thanks for all your kind responses.

So first off, I have a Resmed VPAP Auto 25. And since they had me on VAuto, the settings are now at EPAP min 11, IPAP 15, Ti MAX 4s Ti Min .5s.

I haven't been religiously singing as I should..but I just started back up, due to an injury I got from falling..ok now.

I'm set to have a sleep study once more coming in Sept. I'm really curious as to what they will find. Once they have those readings, I will have those out...

Just wanted to give you guys an update...thanks!

[DyingEveryday]

I just realized something (maybe it was an accidental change). Just last night, I was making adjustments and notice this morning (after a somewhat good night's rest) that it was set to Spontaneous Mode.

I believe I set this on accident yesterday (from VPAP auto). Numbers were a lot lower too. Can someone explain what Spontaneous does?

[Papit]

You nailed it! Keep on singing, Everyday.

[Todzo]

Sleep Apnea survivor here. Pressure is 14, CPAP mode (Not BiPAP), sleep supine.

Then around the fall of 2008, I began to feel somewhat fatigued and tired throughout the day. I had first attributed this to working many hours as an software engineer at USAA. And after sometime had passed, I was beginning to wake up in the middle of the night rapid heart rates, panic attacks, and sweating. I would have immediately said to myself I was having another anxiety attack, but this time I felt like I was literally chocking to death. I was feeling dizzy and confused and very nauseated. My arms and back were aching and tired. This surely was not just some panic attack.

I had very similar symptoms as I approached the anniversary of an assault and robbery upon myself which included severe trauma. The rapid heart rates and all would literally keep me up for days.

To the ER at the one and two year anniversary points.

Then I learned to breath eucapnically (pulse oximeter guided). I found that if you control the breathing aspect the heart rates will become much more reasonable – and – you will not deprive your brain of oxygen – which hyperventilation definitely does – which is why you feel dizzy, confused, and since your gut is often called the enteric brain perhaps the source of nausia.

Basically if you breath better (in this case much less) your brain has circulation and what it needs to work and so you can work it out better.

So after talking to my primary care doctor, he suggested a sleep study. After the study, it was found I had mild to moderate sleep apnea with a needed pressure of 8.0. I was back to normal and getting the sleep I needed. But then my condition worsened. Just after 4 months, my pressure needed adjustment again. This time it jumped to 10.0. Another 6 months went by, and I now needed 12.0. These changes were all done under a year. I simply did not understand. But the doctors stated that I needed to continuously participate in sleep studies (1000 dollars each time) to get a better grasp of what has happening. But there were problems that followed soon after.
The condition began affecting my daily work routines and my family time. With no way of knowing what my correct pressure was, the CPAP was not doing its job. After 2 years at a pressure of 14 – I was not able to function normally anymore as I could no longer afford to pay. I looked tired every day and simply did not have the energy to carry on my daily routine. Co-workers thought I was under the influence of drugs and alcohol due to my eyes looking so tired and my body looking fatigued. It just wasn’t fair. And even worse, I had to go back on Clonazepam to ease the stress hormones caused by sleep deprivation.

I think there are two thresholds when treating Obstructive Sleep Apnea (OSA) with xPAP. The pressure which will keep obstruction at bay. The pressure at which ventilatory instability will start to occur. Obstuction is held at bay by “at least” a certain amount of pressure. Ventilatory instability will become more likely as the pressure is made greater.

Since I have known ventilatory instability at room pressure during my panic attacks I certainly believe it is possible if not common that the two thresholds cross in which case no xPAP pressure will work.

I began to take matter into my own hands and research. I first thought that perhaps my tongue or other mouth/throat tissue was the cause. Some stated my soft palette was too long. Some doctors stated my tongue was too big. But they simply could not guarantee that was the cause. So the first procedure was done on my nose and had my deviated septum corrected. Amazingly, it did clear the issue for a bit, but soon thereafter, the problem came back.

I think we tend to “react” to nasal obstruction or other things which make for excessive effort to exhale. Getting rid of that problem probably did help. But over all central nervous system activation is a response of our body to our over all life – which has a tendency to throw things at us we never would have expected but must still deal with. So while one thing reduced the central nervous system activation (finally I can breath easier!) the rest of life probably did not.

I remember before I had the surgery, there was a biopsy done on my stomach to determine of I had ulcers. (There is a point to this and an ending soon enough). I was so frustrated that I learned of the clinical settings ‘hack’ on my machine and started to experiment with them myself. What I discovered that even though the pressure increased, it would only put a temporary bandage for a while. And when I tried to set it to 18.0, I may have reached the tipping point where I could not breath (I may have left the so-called ‘sweet’ spot and worsened my AHI). So I returned it back to 14 to avoid any further complications. I realize this was completely wrong, but I was frustrated. Ultimately, I found that raising my pressure did NOT fix my problem.

Perhaps repeated hypocapnia has a negative effect on the stomach?

Again, central nervous system activation changes with the day.

I went into depression. My family was beginning to become affected as well (I have 2 kids, 12 year old daughter and 9 year old son). I hit rock bottom and could not understand if this was my time. With no way of being able to fix this condition, I was about to hit overdose. Well, here is where I go back to thinking why my diaphragm is affected.

My friend invited me to sing at a contest (X-factor show, Simon Cowell - yes, I know, that was pretty dumb of me to even try lol) back in 2011. I happen to be a singer, and my friend thought it was be good to get my spirits back up and hit Dallas, TX with my wife to audition. I said, fine, I need to practice again and so I did.

At first, I was already feeling SO MUCH PAIN in my stomach. I could not understand why. My stomach muscles felt so fatigued and overwhelmed that I was already out of breath on the first song. I had a rapid heart rate and began to feel dizzy. So I stopped and waited the next time. Tried again, and this time I was able to sing 2 songs. The next day, I was progressing to singing more songs. All the while, (as you are probably asking yourself), my sleeping with the same pressure of 14.0 began to get better. I was in total awe. It didn’t start hitting me that I was beginning to get quality sleep after a few days. Why was this happening? I knew my diaphragm was my ‘power tool’ to sing, but I didn’t know it had anything to do with improving my sleep...or did it?

So after the audition (failed!), I kept it up. I started to feel alive again; I cried after figuring out that I finally treated my issue. But wait….

I think you discovered a good way to give your chemoreflexes a good workout. I do eucapnic breathing and aerobic exercise with some time doing 85% of maximum heart rate interval training. I am glad you shared this. One more thing to add to things that I do to get better. Thanks!

I still needed my machine, so let me explain that a bit: Normally, my AHI was around 8-10 with an AI of 3 without the mask. With the CPAP, the AHI would average between 3.0 to 5.0 and an AI of .8 to 1. Most RT’s would think this is perfectly fine, but I would STILL feel very fatigued and tired. So when I sang, my AHI dropped to 1.0 – 2.0 with zero AI. Sometimes there was zero AHI. And I felt great. However, this came with a caveat.

If I stopped singing for a good 3 days, the condition gradually came back. Why? What was this suggesting? I’m not an obese person; maybe my BMI is a bit over, but not terribly over. But why wasn’t my diaphragm getting better? Why did I need to keep singing?

If you have a time when your system is eucapnic everything works better. However, the tendency to over breath (which is a reactive thing – you probably do not over breath constantly rather some thing will come along and you will have a session of over breathing as a reaction to that thing) will depend upon how life comes at us. The effects on your body will remain for a time. The tendency to have the over breathing reactions to life will be a bit less for a time but stress can tear this apart in little time depending on how much you have to deal with and how much strength you have at the given time.

I think it is kind of like my knees. They were starting to develop some arthritis. The recommended “cure” is lots of low stress movement. So I am now very close to keeping up with my 10,000 steps a day. The movement apparently keeps the build up of junk in the knees away. If I do the steps I keep my knees. If I do not do my steps...

When you do the singing you take your chemoreflexes through a much wider range than they would see otherwise. I suppose you might say it allows them to re-calibrate. If you have not done this for several days I think they simply loose their calibration and so keep your blood gas levels at rates a bit too close to the edge. A bit of nerves and they are over the edge.

This is where I am left with.


So I usually have daily results from my CPAP as such (Ranges):
AHI: 3.0 - 4.0
AI: 0.2 - 0.7

***About two days ago of this writing, I woke up feeling a bit more tired and exhausted than usual. I glanced at my CPAP results display and saw something scary:
AHI: 20.8
AI: 5.7

What just happened....This is the first time I've seen this***

Anyway, What do you guys think?

I think that xPAP is only one thing that you can do to get better. If you really look into xPAP usability for many it is not a usable answer.

In your case I think you are finding ways to make it usable. By all means do that.

At the same time pursue basic health with passion.
Take care,

Todzo

Give your doctors the old [1,2]

[1]: 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

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

[DyingEveryday]

Great info, appreciate it.

BTW, I'm wondering if my VPAP Auto 25 is acting up. Just recently, my respiratory rate has gone from an average of 13-18 to 14-30. .

Is this any cause for alarm? I guess I feel the same...or maybe this is something I should take seriously. My machine's settings have not changed.

Thoughts are welcome. Thanks!

[sleep4me]

Great info, appreciate it.

BTW, I'm wondering if my VPAP Auto 25 is acting up. Just recently, my respiratory rate has gone from an average of 13-18 to 14-30. .

Is this any cause for alarm? I guess I feel the same...or maybe this is something I should take seriously. My machine's settings have not changed.

Thoughts are welcome. Thanks!

Great info, appreciate it.


Some thoughts from Florida, USA..
Do you have any underlying lung conditions? Are you a shallow breather? A bit out of shape? Many of us in out daily stressfull lives shallow breath and adjust to that lifestyle. When you sing you "work out" the diaphragm and other abdominal wall muscles. In my office I started using a pulmonary function test for Asthma for my pediatric patients. During training on the new computer test, where we exhale forcefully into a cylinder and they measure capacity, the trainer asked me how long I have had asthma. I don't have asthma. I am a bit out of shape. I'm 5'8" and 145 so I'm not overweight, but I am out of shape. I started using an incentive Spirometer which you get after surgery to exercise my lungs. I think this is what the singing did for you. When I am super busy at work and don't "exercise" my lungs I can tell after a week as my mornings are not good. I don't know my C-Pap settings or how I'm doing via AHI.
I am assuming Spontaneous may be the machine waits for you to take a breath and the delivers a set pressure. Or it may be an auto start type setting. If you are experiencing Apnea and the machine is waiting for you to initiate a breath that can't be good. Hope my assumptions are wrong.
On another note, our family practice physician was managing my husbands C-Pap. They would send off the little card and return it and tell us everything was OK. As I would listen to my husband have Apneas with the machine on I was not convinced. Long Story Short, I found a Sleep Medicine Physician who evaluated my husband. My husband had many surgeries for his sleep apnea. After 5 years we were always back to square one. This Sleep Medicine Physician informed us that my husband needed a stat sleep study as his C-Pap was set at 6 with a ramp! Air pressure is 5. After the sleep study the new setting was 14. The primary care dr just sent the memory card to the cpap company. They had no idea how to titrate his settings. The company verified compliance. That's all. I hope you have a physician that is knowledgeable about CPAP. I think singing or breathing excercises will help with lung elasticity. Also maybe look into a measuring device like a peak flow meter to see if you can evaluate your respiratory function on a daily bases and also see if you can get an auto set cpap.
Just some thoughts.

[alp]

Also wondering if you should see a pulmonologist?

[Paralel]

Any history of thoracic or abdominal trauma? There are a couple of unusual diaphragmatic conditions that can be triggered by trauma to the abdomen or thorax which are very hard to pick up without some very unusual diagnostic testing.