When CPAP Doesn’t Help Your Sleep Apnea

Every few days, I hear from a frustrated patient with sleep apnea how they’re at wit’s end with their CPAP machine. Either they just can’t seem to get used to it, or they’re using it faithfully, but find no improvement in their quality of sleep. Some are almost in tears, to the point of giving up. Many of these people have tried various masks, different machines, participated in online and live CPAP support groups, or had multiple interactions with their sleep medicine doctor and their DME vendor. All to no avail.

 

Granted, there are a number of reasons why you may not find CPAP helpful, but with good support and going through a standard checklist of issues, many of you can usually find a solution. You’re not the only one going through this process. Most people just starting out with CPAP fit into this category. 

 

However, there are others that have tried everything, and still don’t notice any improvement. Even the compliance data from the machine is saying that everything is good, with no leaks and a very low AHIs. What can be done for you at this point?

 

Unfortunately, many of you fall into the trap of feeling like it’s your fault, that there’s something wrong with you or that you’re doing something wrong. You may ask, many others are able to use CPAP just fine, so what’s wrong with me? 

 

This is a very common situation where typically, most sleep doctors just shrug their shoulders and offer a stimulant like Provigil to take during the day and sleeping pills at night. 

 

From my perspective, there are three issues/options to consider if you ever get to this point. The first is to make sure that you’re able to breathe well through your nose. If your nose is stuffy (and most sleep apnea patients have stuffy noses by definition due to their anatomy), then CPAP pressure have to be higher, and it can become more uncomfortable with more chance of leaks. Many of my patients are able to better tolerate and benefit from CPAP after treatment.

 

The second consideration is, do you have full compliance data? Most people are given bare-bones CPAP machines that only measure how long you’re using the machine for every night. There’s no information to tell you if there’s any leak within the system, or if you’re having significant apneas or hypopneas. Having a fully data capable model is important to get objective feedback on what’s going on. 

 

Third, at a certain point, after exhausting all the possibilities, you have to look at other options including oral appliances and even surgery. For a recording of an interview I did with a dentist about oral appliances, click here. For a free report called, "The Truth About Sleep Apnea Surgery," click here.

 

One last thing to consider is that your sleep apnea may be adequately treated (by whatever means), but you still feel lousy. Dr. Jacob Teitelbaum, a world renown expert in chronic fatigue syndrome, explains that due to the massive neurological and hormonal imbalances that occur in these situations, some people don’t feel better with CPAP, oral appliances, or even with surgery, despite optimal treatment based on sleep studies. Go to his website at vitality101.com to find out more information. He has a free online symptom analysis program that will guide you toward various treatment options.

 

Are you struggling with CPAP? If so, what steps have you taken with CPAP, and what other options have you tried so far?


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4 thoughts on “When CPAP Doesn’t Help Your Sleep Apnea

  1. I have changed the settings on my machine from 6 to 16 with no change. I wake up every morning with my chest sore. I have a full face mask. I need help fast. I’m feeling worst it seems every day. Thank you

  2. I gave it 2 1/2 years and I am still exhausted. I’ve no job anymore, no money and no hope. I would trade my eyesight for sleep.

  3. My CPAP was a total failure. No leaks, tried different mask/nasal, changed the basic settings, used it while awake, no anxiety with starting etc. I’m still looking for a better diagnosis and treatment so I’m looking at CFS and types of anemia.

    CPAP: I start with trying to breathe with the machine which takes extra effort to breathe out even with soft start (starts 4 to 5; it can go to ~7 when running) and Cflex enabled (drop of 3). I try to relax but when I do the machine hates my slow breathing and tries to make me breathe in before I finished breathing out. Now it’s probably set to what it thinks as a “normal” breathing rate but now it feels like I’m hyperventilating (compared to my normally slow/shallow breathing). No I’m not hyperventilating according to normal breathing.
    I could stand about 30mins by which point my heart was beating harder, diastolic blood pressure had risen (eg. 110/85,65 instead of 105/65,60), light headed, headache, feeling bloated, burping air. It would then take an hour or more for me to get back to normal and able to sleep. My AHI was over 30 but mostly hypopnea events and only limited sleep time during the PSG study (2nd attempt, 1st was <2hrs sleep). SpO2 was 96% average while awake and 95% average while sleeping with further drops of 3-5% for hypopneas. No snoring!

    Now I'm looking at either anemia, CFS or similar.

    http://www.vitality101.com/cfs-fms-checklist
    "Your score indicates that you have met the CDC criteria as possibly having CFS (though you did not show signs of fibromyalgia). We recommend that you consult a physician for further evaluation."

    Pathology: FBC says my red blood cells are OK, ferritin was high side of normal. Nothings else of significance. Not classed as anemic but hasn't been fully investigated. However, I started taking a multivitamin tablet which includes a form of methylated B12 and other B vitamins. This has improved most of my symptoms from moderate-to-severe down to mild-to-moderate.

    Heart was checked: no problem.

    Vascular: Although I asked about blood flow, all a cardiologist can look at is the blood vessels close to the heart (all clear). It's the cardiovascular system but the specialists only look at half of it.

    Lungs: appear to be "normal" according to clinical assessment. I think they don't fully inflate. I have 150% of predicted peak flow, low resistance (sRaw 41% of predicted), reasonable pressure, lower FRC/ERV/RV (72/63/79% of predicted, PFT in a gas chamber).
    Respiratory specialist doesn't look at the blood flow through the lungs nor the nerves to the diaphragm. They don't look at you breathing unless the PFT results come back "abnormal" for asthma/obstructive/restrictive like conditions. I feel funny if I try to breathe in deep no matter how slow and it takes a lot of effort. It's like I weigh an extra 60kg but I have 18kg of fat (+59.3 lean/bone = 77.3kg TBW, BMI <26 in metric).

    So the respiratory specialist threw up his hands and basically said "Don't look at me, I can't help it if you don't use CPAP or mouthguard". If I'm breathing like the hypopneas while awake during the day and breathing faster is bad for me: then I don't see how these treatments are going to help me! No, I'm not a hypochondriac! I've been misdiagnosed on atleast 4 other occasions regarding physically testable and non-fakeable conditions (hiatus hernia with reflux, myopia/astigmatism, appendicitis, fractured eye socket).

    Maybe others will see this message and admit the textbooks are missing a lot of information. Thank you.

  4. Went through all of this with husband. He couldn’t stay awake during the day. Fell asleep at a stoplight even. Scared me. The Dr we were seeing for sleep apnea did t seem to believe me. He wasn’t snoring or stopping breathing. Was giving stimulants during day and sleeping pills at night. We pushed to see a sleep neurologist. MRI and more sleep studies and they found Narcolepsy and an issue with brain sagging and flattened brainstem. He maxed out settings on Cpap, has had brain surgery and is now onto trying a BiPap machine. Go with your gut. If you feel you’re not getting better with all you do, speak up. And talk to your doctors until they listen.