Apnea worse with CPAP

[saltyk9]

I have posted on other threads about how I wanted to try out CPAP to see if it would help my sleeping problems.
My girlfriend has been telling me for quite a while that sometimes I stop breathing while asleep or my breathing becomes EXTREMELY shallow.

I have grinded my teeth for about 15 years (I'm 25 now) and this has caused me severe TMJ problems. I have been under neuromuscular dental treatment for my TMJ which requires wearing a 24/7 orthotic on my lower teeth to reposition my jaw further down and forward (helps open up the airway and decompress the joint). It has taken away almost all of my pain but I still have issues with sleeping.
I no longer grind my teeth but I still clench very much. It is said that clenching your teeth while sleeping can be an involuntary mechanism in order to help maintain an open airway.

Because of this intense teeth clenching, my girlfriend telling me about the struggles I have while sleeping (I fall asleep no problem and sleep through the night, as far as I know) and feeling VERY unrefreshed with 0 energy throughout the day, I got a sleep study done. I went into this sleep study thinking I (and maybe do) have UARS. I am 5'8 130lbs. and not your typical candidate for OSA.

My sleep study showed a spontaneous arousal index of about 13. I had over 200 periodic limb movements. I had about 60 other limb movements. I had severe bruxism recorded throughout the test. There was mild snoring noted. I ended up with an AHI of 2.1, while most of that was from hypopneas.

The sleep doctor said "you have periodic limb movement disorder, I am giving you requip for that". I asked, "well if I don't have sleep apnea, then why am I so tired during the day, waking up with super bloodshot eyes?" He said, "that's from the teeth grinding, just get a night guard". I had told him, multiple times now, that I have an orthotic I wear 24 hours a day, and it doesn't PREVENT grinding.
I did not take the requip and instead I bought a CPAP from the black market.

You can see the system that I have in my signature. I am using it as an auto with a pressure range from 4 to 20 and in Bi-Pap mode. I have taken to the CPAP very well. The first night was somewhat of a struggle getting used to sleeping with something on your face, but it felt great to be able to breathe nice and deep like I haven't experienced in a while. The second night of CPAP, I slept like a baby. I have not noticed any difference from using it other than my jaws don't feel sore like they usually do which leads me to believe I am not clenching as much, if any.

However, I was finally able to look at my data using sleepyhead. My average AHI after using it for one week is ~4.5. This is about twice as much as in my sleep study, WITHOUT CPAP. According to the data, I have very little obstructive events, but almost all Centrals or Hypopneas. I have made sure that these events were not happening while awake or falling asleep, but certainly while having been asleep based on the time of occurrence.

Any idea on why the treatment for sleep apnea would cause my sleep apnea to get WORSE?

[saltyk9]

Is there any type of consensus that CPAP is better for CA than Bi-PAP or vice versa?

[robysue]

My sleep study showed a spontaneous arousal index of about 13. I had over 200 periodic limb movements. I had about 60 other limb movements. I had severe bruxism recorded throughout the test. There was mild snoring noted. I ended up with an AHI of 2.1, while most of that was from hypopneas.

The sleep doctor said "you have periodic limb movement disorder, I am giving you requip for that". I asked, "well if I don't have sleep apnea, then why am I so tired during the day, waking up with super bloodshot eyes?"

200 PLMs in how much time asleep? Sounds like the doc's diagnosis of PLM is likely correct. And the thing is: PLM can disrupt your sleep and sleep cycles just as much as UARS or OSA does. But it's NOT typically caused by your upper airway collapsing.

My read---as a mere patient---on your situation: You are waking up tired and exhausted because your limbs are moving around way too much at night and they are likely causing some arousals themselves. Were there any numbers on your sleep report that were labeled something like PLM Arousals and PLM Arousal Index? If so, how high were those numbers?

I have grinded my teeth for about 15 years (I'm 25 now) and this has caused me severe TMJ problems. I have been under neuromuscular dental treatment for my TMJ which requires wearing a 24/7 orthotic on my lower teeth to reposition my jaw further down and forward (helps open up the airway and decompress the joint). It has taken away almost all of my pain but I still have issues with sleeping.
I no longer grind my teeth but I still clench very much. It is said that clenching your teeth while sleeping can be an involuntary mechanism in order to help maintain an open airway.

As to the bruxism issue: The 24/7 orthotic you wear on your lower teeth has dealt with the pain issue, but it has not prevented you from having severe nocturnal bruxism---as demonstrated by the data from the sleep study. And night time bruxism can lead to sleep problems, fatigue, and headaches all by itself.

If I were you, I'd ask the sleep doctor to forward the results of your sleep study---including the full data that shows night time bruxism is still a severe problem---to specialist treating your TMJ. Because it sounds like fixing the nocturnal bruxism problem is going to be his/her bailiwick and not the sleep doc's. It could be that you need to have a different orthotic made to wear at night that does help with the nocturnal clenching/grinding. Or it could be that you need a different orthotic altogether.

And note that bruxism includes both grinding and clenching. So you may also need some clarification from the sleep doctor about whether you were grinding your teeth or clenching your teeth or both during the sleep study.

I have posted on other threads about how I wanted to try out CPAP to see if it would help my sleeping problems.
My girlfriend has been telling me for quite a while that sometimes I stop breathing while asleep or my breathing becomes EXTREMELY shallow.

...

Because of this intense teeth clenching, my girlfriend telling me about the struggles I have while sleeping ......

It's worth asking: Does your girlfriend every tell you about how much you are physically thrashing around in the bed at night? Does she notice the PLMs? With 200 of them on your NPSG, it seems like she might have added something about that in her description of your nighttime struggles.

I did not take the requip and instead I bought a CPAP from the black market.

Huh? Your NPSG shows 200 PLM and, with an AHI = 2.1, I'm guessing somewhere between 8 and 14 apneas and hypopneas for the full night (based on a guess that you actually slept somewhere between 4 and 7 hours during the PSG).

Seems to me you're trying to treat a nonexistent problem with the CPAP while refusing to treat the documented problem of PLMD. Any particular reason you are so hesitant to do a trial run on requip? You might just do ok on it and you might start sleeping better while on it.

I have taken to the CPAP very well. The first night was somewhat of a struggle getting used to sleeping with something on your face, but it felt great to be able to breathe nice and deep like I haven't experienced in a while.

Do you have problems breathing during the daytime? In other words, your problem may not be sleep disordered breathing, but disordered breathing from some other cause. Any history of asthma in the family? Severe daytime congestion making it hard to breathe all the time?

The second night of CPAP, I slept like a baby. I have not noticed any difference from using it other than my jaws don't feel sore like they usually do which leads me to believe I am not clenching as much, if any.

More evidence perhaps that IF the bruxism itself were better under control from using a more appropriate night time orthotic, that your sleep might improve. So---we come back to the issue of making sure that the person treating the TMJ knows what the sleep study showed and has a chance to review at least the full summary data him/herself.

However, I was finally able to look at my data using sleepyhead. My average AHI after using it for one week is ~4.5. This is about twice as much as in my sleep study, WITHOUT CPAP. According to the data, I have very little obstructive events, but almost all Centrals or Hypopneas. I have made sure that these events were not happening while awake or falling asleep, but certainly while having been asleep based on the time of occurrence.

and

Any idea on why the treatment for sleep apnea would cause my sleep apnea to get WORSE?

Not sure what you mean by you've "made sure that these events were not happening while awake or falling asleep." I assume you mean you've discounted any events that occurred at times you think you were awake or you think you were still falling asleep. But---awakenings that are as short as 10--30 seconds can occur during the night without our remembering them. Somewhere in Sound Sleep, Sound Mind Dr. Krakow makes the statement that we only remember waking up at night if the wake is long enough---as in at least about 5 minutes long.

You aren't likely to remember the kinds of arousals and awakenings that happen with PLM because they are so short. So it's possible for some of the events you think "count" because you think you were asleep occurred during brief awakenings caused by the PLM, and hence might not have been counted on an NPSG.

Likewise it's not uncommon for us to arouse pretty substantially (as in all the way to wake) when we're turning over in bed and we don't remember it at all. And many of us also hold our breath (while awake) when we're turning over in bed. And these events would be discounted on an NPSG.

The important point here is this: In NPSG data, the human scoring the events looks at ALL the data and says: "That piece of not breathing for 10 seconds happened when the patient was in a brief 30-second epoch scored as WAKE in the EEG, so it's not an obstructive or central sleep apnea." And given that you an average of 13 spontaneous arousals per hour, it's reasonable to assume that some of these arousals were all the way to WAKE (very, very briefly) and after the arousal there were some missed breaths that were not scored as SDB because you weren't alseep according to the EEG.

But your PR System One BiPAP Auto doesn't have the EEG evidence and it has no brain. It does have some very sophisticated algorithms for detecting events. But it cannot tell when you are alseep and when you are awake. So whenever you have an awakening and take some big breaths (to get to WAKE), there's a tendency to breath shallow (or even hold the breath) after those initial big breaths---sometimes for as long as 10--15 seconds. And since the machine can't tell you're awake, it scores an apnea or a hypopnea. And since you can't remember every single awakening when they may be as short as 10--30 seconds, you can't easily eliminate those "extra" events in your data either.

And my guess is that about half the events you are talking about in SleepyHead may indeed be "false" events that occurred when you were AWAKE for a very brief amount of time.

But it's also worth revisiting this statement:

I have very little obstructive events, but almost all Centrals or Hypopneas.

You said you are running in Auto 4--20. Since I have the same machine, I'm pretty sure that it does not have a pure APAP mode. So that auto range most likely means that MIN EPAP = 4, MAX IPAP = 20. What's your PS setting at? And what are your 95% pressure levels?

Because there's a very remote chance that if you are using some significant pressure, then the pressure could indeed be inducing additional Central events that were not there to begin with. For folks who are diagnosed with OSA and who undergo a formal titration study---the emergence of large numbers of Central apneas---occurring when the person is ASLEEP as documented by the EEG evidence---can be clinically significant. When enough central apneas "emerge" with the addition of CPAP pressure, the diagnosis goes from OSA to Complex Sleep Apnea (CompSA). And CompSA can be very difficult to treat. There are a number of posters here who have struggled with CompSA.

[robysue]

Is there any type of consensus that CPAP is better for CA than Bi-PAP or vice versa?

For folks with significant central sleep apnea---as in a CAI > 5 on a nocturnal PSG, there's some evidence that neither a CPAP nor a BiPAP really addresses the issue. There are a number of posters here with CSA or CompSA who use AVS machines. These machines are very expensive and have certain ventilator-like capabilities such as being able to "trigger" a patient to breathe if the number of breaths per minute drops too low.

But your PSG looks like it clearly ruled out Central Sleep Apnea. And CSA is not that common---certainly it is much more rare than both OSA (also ruled out by your sleep test) and PLMD (which your sleep test indicated you likely have).

Is it possible that you have UARS? Of course. Most sleep labs don't try to detect the respiratory effort related arousals (RERAs) that characterize UARS because the equipment to properly detect RERAs is even more invasive feeling than all the normal wires: They need a sensor to detect the pressure in your throat to detect RERAs if I recall correctly.

A thought occurs: Do you know which standard your sleep lab used to determine the hypopneas? There are two common standards:

• AASM Recommended Standard: A hypopnea requires at least a 30% reduction in airflow for at least 10 seconds AND a corresponding O2 desaturation of at least 4%. Such a hypopnea does NOT require an EEG arousal
• AASM Alternative Standard: A hypopnea requires at least a 50% reduction in airflow for at least 10 seconds AND one or both of the following conditions: A EEG arousal OR a corresponding O2 desaturation of at least 3%.

It is possible for the definition chosen for scoring hypopneas to make a difference in diagnosis. If my sleep lab had not used the AASM Alernative Standard, I would not have been diagnosed with OSA since my AHI under the AASM Recommended Standard was only 3.5. But with the hypopneas scored under the AASM Alternative Standard, my AHI jumped to 23.1.

So it's well worth asking which definition was used to score the hypopneas in your PSG.

[kteague]

Your post covers a lot of territory, and much of it has been responded to. I mainly want to address the limb movements. If your limb movements are causing significant arousals, you will need to address them. I understand your reluctance to go on meds, but messed up sleep is probably more hazardous to your health and well being than the meds. That said, there are a few things you can do to try to help yourself first. The first is have iron studies done to include a ferritin level. Seems to be a common thread of lower ferritin levels in people with some limb movement issues. Articles I've read recently lean towards people with low ferritin having more problems with the meds, like having augmentation, so maybe addressing that first is best for you. Also, you could bolster your nutrition to give your body its best advantage. I take a calcium-magnesium-zinc supplement, a multi-vitamin, and vitamin D. Don't know if it helps, but can't hurt. My RLS is much better than it used to be, but the PLMD still disturbs my sleep. I've used several meds over the years, but I'm currently using a TENS Unit on my lower back before bedtime and it helps as much as the meds did most of the time. I would suggest that once your limb movements are effectively addressed that you get re-evaluated regarding your sleep apnea. It's not unusual for that scenario to change (for the worse) once the legs are quiet. I'll leave all the apnea discussion to the others.

[saltyk9]

Thank you for the extremely thorough explanation of everything-- very, very insightful.

PLM Arousals - 10. 1.9 Index
LM Arousals - 22. 4.3 Index.

My girlfriend never mentioned the PLMs until I asked her about it from the study. She says I indeed do 'twitch' a lot.

I feel like I don't breathe as well as I should during the daytime. Even during the day my breathing is very shallow. I often notice that my abdomen is semi-flexed...and it isn't until I consciously think about it that I am able to relax it and breathe deeper...not sure why this is. I used to have asthma when I was very young but I grew out of it. I also broke my nose when I was 12 and had to have surgery to reset it. Not sure if my nasal breathing is impaired at all from that, since it's the only thing I know and am used to.

I do not recall what the PS setting was set at...most likely it is probably as low as it would let me set it. The 95% pressure average I believe is about an 8.5-9 the last time that I checked.

The standard used to determine my hypopneas was "AASM/Medicare" as well as "AASM Alternative" so I guess they use both?

Good thoughts about iron and ferritin levels. Many of the people I know who have TMJ issues like me have iron deficiencies and/or are anemic. I will look into that.

Thank you guys for your great input.

[BlackSpinner]

I feel like I don't breathe as well as I should during the daytime. Even during the day my breathing is very shallow. I often notice that my abdomen is semi-flexed...and it isn't until I consciously think about it that I am able to relax it and breathe deeper...not sure why this is. I used to have asthma when I was very young but I grew out of it. I also broke my nose when I was 12 and had to have surgery to reset it. Not sure if my nasal breathing is impaired at all from that, since it's the only thing I know and am used to.

Exercise like Yoga can teach you to breathe better. Make sure you get a qualified teacher, ask around for a good place.

[Breathe Jimbo]

You don't have sleep apnea, so it's just plain stupid to use a CPAP machine. The smart thing would be to do what your sleep doctor said to do for your PLMD.

[saltyk9]

You don't have sleep apnea, so it's just plain stupid to use a CPAP machine. The smart thing would be to do what your sleep doctor said to do for your PLMD.

A person who stops breathing for 10 seconds 5 times an hour as sleep apnea.
A person who stops breathing for 9 seconds 100 times an hour has an AHI of 0 and doesn't have sleep apnea...could this person be helped by CPAP? I would sure think so

[DoriC]

My husband's sleep study noted severe PLMs as well as moderate OSA. I had been observing them for a long time before his diagnosis and realize now that he was probably semi-awake during those periods most of the night. If I spoke to him to ask if he was OK, he would most often answer me clearly . We were given the option to use the cpap for 30 days to see if the movements were subsiding, if not the Dr would prescribe meds. Fortunately, his leg movements subsided greatly in that first month of cpap therapy and have virtually disappeared now.

[archangle]

This has sort of been covered in the above posts, but it probably bears repeating.

Different CPAP machines will score events and AHI differently. PR (Philips Respironics) will disagree with ResMed. Resmed S8 will disagree with S9. Sleep study numbers will be different, too.

If I were tinkering on my own, I'd bump up the lower pressure and see if things improved. An AHI of 4.5 is too low to worry about on it's own, but look at the flow waveforms and see how long and severe the events were. As you increase the pressure, make sure you don't get too many centrals and look at how long and how severe they are on the flow graph.

[Breathe Jimbo]

A person who stops breathing for 10 seconds 5 times an hour as sleep apnea.
A person who stops breathing for 9 seconds 100 times an hour has an AHI of 0 and doesn't have sleep apnea...could this person be helped by CPAP? I would sure think so

He says his AHI is 2.1. He does not have sleep apnea unless it is at least 5.0. Sleep apnea is not his problem. He says he was diagnosed with PLMD. He needs treatment for PLMD, not treatment for sleep apnea. It is just plain stupid to act as if his problem is sleep apnea when, according to him, it is PLMD.

I'm being so blunt because the situation is like this: a man goes to his doctor to be tested for high cholesterol. The blood work shows that he does not have high cholesterol, but that he does have severe diabetes. The doctor gives him a prescription for insulin, but he does not want to use insulin, so he takes medication for high cholesterol, which he doesn't have. Just as absurd.

[robysue]

Breathe Jimbo,

I agree with you 100%. And you have a great analogy!

[SleepingUgly]

PLM Arousals - 10. 1.9 Index
LM Arousals - 22. 4.3 Index.

So on average you're having 1.9 arousals per hour from PLMS, which is not abnormal. I don't know what LM Arousals means. Some would say that if you're having so few arousals from PLMS, they are not clinically significant; others would disagree.

I haven't followed your other posts to see why it is that you don't feel you have PLMS and why you didn't try to treat that first. While I'm not going to say you DO have SDB, I'm not going to say you don't either. See, I was told for 19 years that I had bruxism, PLMS, and various other anomalies, and they missed the SDB diagnosis over the course of 5 sleep studies, for nearly two decades. IMO, lots of labs just aren't measuring SDB appropriately, especially if they are using the AASM Recommended guidelines for scoring hypopneas, which will miss everyone who doesn't desaturate. (See this article for an eye-opening description of what various hypopnea scoring systems do to the AHI: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635578/)

Also, people can have muscle contractions that are associated with respiratory events that end up mislabeled PLMS. They may not be true PLMS, and they may disappear if the respiratory events are addressed.

I think bruxism is a red flag for SDB. Any "alpha intrusions"? That's another red flag.

[deltadave]

A person who stops breathing for 9 seconds 100 times an hour has an AHI of 0 and doesn't have sleep apnea...could this person be helped by CPAP? I would sure think so

With 9 second events, you couldn't even call them "RERAs" and end up with a dx of UARS.

In order to work, CPAP needs to correct an untoward result of respiratory events, namely, arousals and/or desaturations.

Without them, there's nothing to fix.