UARS - Not benefitting from CPAP

Has anyone ever asked themselves why someone wouldn't benefit from CPAP?

Hypersensitive by nature and CPAP is causing arousals, or you have CFS?

My sleep endoscopy revealed collapse at the tongue, soft palate, and epiglottis. I am deciding on multiple surgeries, which is a risk if it doesn't pay off, because then it must mean I have CFS.

I am somewhat sensitive by nature and thought maybe I was the rare person for whom CPAP was causing arousals, due to my hypersensitive nervous system, which I thought would be biological.

But I'm hearing from both my wife and my sleep doctor that, no, it's a brain problem and it is not biological.

Does that mean everyone who uses CPAP will ultimately benefit, unless they have a "brain problem"?

Any thoughts?

When you say 'hypersensitive' are you referring to a medical diagnosis regarding your actual physical nerves, or to an anxiety based condition?

I believe Cpap, if set up correctly for each patient with the appropriate version of C- or Apap machine for their particular diagnosis of obstructive apnea (with or without other issues of RERA, UARS, etc) should work for all. Should... because so many are not set up properly by either their doctors, techs, DMEs, etc. and never find their way to a website like this for help.

Now others who have a proven diagnosis of either complex (mixed obst. + central apnea) or just central apnea will not be helped by 'regular' Cpap, but need one of other versions such an AVAPS, etc to help them breathe.

But when you say 'brain' problem, do you mean psychological or something physical - you do say your doctor said it's not biol. so I'm imagining it's more likely psychological, in which case a different approach to using Cpap with help for anxiety, and/or whatever other psychological problems exist, would be needed.

But don't blame Cpap for causing arousals, etc... just not valid, or at least not usually, though there may be a few whose pressure settings are not appropriate and therefore need tweaking.

What I mean is being highly sensitive by nature, biologically, wherein the nervous system is more reactive, if you will.

This is what Dr. Steven Park on his blog wrote:

"In general, UARS patients can’t tolerate CPAP as well as people with OSA. In fact, numerous studies have shown that people with mild levels of OSA don’t tolerate CPAP as well as those with severe OSA. This makes sense, since having an overly sensitive nervous system can make you wake up to any degree of irritation, such as a mask on your face, air blowing in your nose, or noises from the CPAP machine."

Now as for my condition and my doctor: brain problem would be referring to a sensitized limbic system in the brain, possibly caused by severe emotional or physical trauma.

I truly don't know what comorbid conditions I have or don't have. I know that I'm sensitive emotionally, have a lot of allergies, and am sensitive to certain medications and foods. So could I be sensitive to pressurized air while I sleep? I have no idea.

I do know that it's possible that I have CFS (as well as UARS, which I definitely have) which some believe to be a brain issue (sensitization, as I described above), because I had a severely emotionally stressful period before my onset of initial fatigue/symptoms.

Have you ever been prescribed benzodiazepines?

I'm taking 2mg of Ativan everyday. I wish I could take a lot more, as it helps with the side effects from chronic poor sleep. I've tried taking some at bedtime but it doesn't seem to have a big positive impact, other than the negative impact of probably reducing R.E.M.

Fetou - are you suggesting someone go onto addictive benzos?

Better question: Has anyone on here not felt the benefit from CPAP after being compliant for a good length of time (year or more)?

I'm in the same boat as you. I had one non-sleep doc who said that all my symptoms point toward CFS, but there is no definitive way to diagnose it.

My sleep doc says my sleep is very "fragile" and I suffer from micro-arousals all night long. I've been of ASV CPAP for more than 5 years and have never felt any subjective benefit from treatment. Of course I just hope that I'm still the getting non-subjective benefits. My AHI has always been <1 and more often than not 0.0.

Anyway, my sleep doc had me try switching from ASV to straight CPAP because he has seen cases where the pressure cycling behavior that is intrinsic to ASV can cause micro-arousals. I tried it and still did not feel any subjective benefit even though my AHI was still <1. We also tried a few other things to try and stabilize my breathing (I also have what he describes as a high loop gain breathing pattern) and then discussed trying a benzo medication, such as temazepam, which despite all the horror stories you read on the internet I am ready to try. However, at my last consult he decided that he really wants me to try CBT-i before trying temazepam so that is what I am currently in the process of doing.

Problem is that it is difficult to generalize when people are so different and when concepts such as "sensitive" are subjective and when UARS doesn't really have a widely accepted definition these days beyond 'not quite the same as OSA.'

Are some people more sensitive to changes in the airway during sleep? Yes. Does that mean that fact should be defined or categorized as physical or mental? In the context of sleep medicine, that probably is not a productive exercise in diagnostics.

Do low-AHI people often take longer to get used to PAP and take longer to benefit from it? Yes. Should those facts affect more general medical approaches to other possibly-unrelated conditions? Doc positions on that vary; not enough data for a standardized approach.

I have great respect for Park. But I tend to lean toward Krakow in areas in which the psychological and psychiatric aspects of sleep seem to be intersecting with sleep-breathing treatment choices.

Okaythen wrote: ↑

Fri Aug 17, 2018 3:42 pm

Better question: Has anyone on here not felt the benefit from CPAP after being compliant for a good length of time (year or more)?

I'm perfectly compliant and have been at it for over 4 years. While I benefit from it versus not using anything, I still wake up multiple times every single night and feel overwhelmingly tired each and every day. Have some niggling centrals, but not clinical. I probably don't have CFS or fibromylagia. I don't really fit those patterns of fatigue. It all seems to be sleep-related. I must be a light sleeper.

According to what I have researched online, UARS can lead to CFS. UARS mimics CFS.

So what gives if one is being treated for UARS and still is experiencing severe fatigue and symptoms consistent with CFS? Perhaps the consensus isn't out yet and UARS and CFS are not mutually exclusive. However, in my case and others on here that have been diagnosed with CFS because their PAP treatment isn't really helping, I venture to say that that diagnosis is incorrect. You have what looks like CFS but in fact is solely UARS and the treatment is the issue.

If there were other viable treatment options besides CPAP, then one would test and then either know for sure or get closer to an answer. What about the stories of people with sleep apnea who have been unsuccessful with CPAP and have found surgery to alleviate their problem? Prior to their surgery, if they were chronically fatigued from the effects of sleep apnea despite being compliant with CPAP, would we say they in fact have CFS? The surgery and subsequent resolution of symptoms would prove that it is not CFS.

I don't know if I'm one of these patients, but boy would I love to know if corrective surgery would cure me (despite low surgical outcome success rates).

Medical syndromes are mostly a mere collection of symptoms that point to a broad classification. So although we often speak of "having" a syndrome, it is really more a matter of someone either meeting an accepted definition or someone not meeting an accepted definition. Nothing more. Nothing less. A syndrome label can be useful in some ways to payers, but as a general rule, it is not so much something that is ruled-in or ruled-out according to simple response-to-therapy, in the way other conditions can be diagnosed through the back door by seeing how someone responds to treatments.

For me, rather than focusing on labels (UARS, CFS, etc.) for situations in which those labels do not point to a specific treatment, it is often better simply to focus on trying treatments that may help someone feel better in alleviation of some of the symptoms of a syndrome. We as patients often feel some mental and emotional relief about our conditions when we feel that we can legitimately put a specific, well-known, medical-sounding label on what we are experiencing; however, from a well-trained medical professional's point of view, simply sticking labels on things gets no one anywhere meaningful for true alleviation of suffering.

With PAP therapies, it is true that someone with moderate-to-severe OSA should likely use optimized PAP as the primary treatment of choice for long-term health reasons, whether using it makes the person feel better in the short term or not. But with someone with a very low AHI, the decision of whether to use PAP often comes down to whether it alleviates symptoms once fully optimized and used for a while. So although I would never encourage a fellow moderate-to-severe OSA patient to give up on PAP, I have no problem at all considering PAP as merely a tool for feeling better whenever someone seems to fall into what is considered UARS territory with his sleep breathing. For some of those people, PAP is something they should try, but not something they must continue to use even when it doesn't seem to improve sleep or overall perceptions of well-being, once they have given it the full shot. In my opinion.

But hey, I'm no doc, and each situation is different. So what I said above may not mean much beyond being an expression of my personal take as some guy on the Internet.

Jnk, I appreciate the input. I seem to be between a rock and a hard place. I have a definite severe sleep breathing disorder - RDI 29, microarousals induced by SDB are 47 without PAP, and collapse revealed via sleep endoscopy at soft palate, tongue, and eppiglotis - so going without PAP is problematic. However, using it has still left me in poor physical health, bedridden, severely symptomatic, and despondent. All other health issues have been explored. So it seems to be either limbic system dysfunction or I am strangely sensitive to PAP therapy.

Have you been investigated for Chronic Fatigue Syndrome?

There's no real way to diagnose it. I have. Saw infectious disease specialists. My fatigue is explained by my sleep breathing disorder. I don't have unexplained fatigue. My sleep doctor because I'm not responding to CPAP recently diagnosed me with chronic fatigue (broad category).