I completely stop breathing while using my CPAP
April 25, 2016 1:44 PM   Subscribe

I've been trying to get used to my CPAP for months but a specific -- and apparently unsolvable -- problem keeps cropping up. Please help me troubleshoot.

I was prescribed a CPAP about six months ago for moderate sleep apnea. I'm having a problem with it and need some ideas on how to solve it. I've tried everything I can think of and my doctor is not helpful.

Background: I have no issues with having or (in general) using a CPAP. I don't mind things on my face, I don't feel claustrophobic while using it, I'm not fighting the machine in any way. I have many years of experience using SCUBA equipment and firefighter breathing apparatus so breathing through masks for long periods of time under all kinds of circumstances is not even a tiny issue for me. In other words, there are no physiological barriers at work here.

The problem: I stop breathing entirely while using my CPAP. When I eventually wake up I am on the verge of passing out.

Data points:

* Pre-CPAP, this never happened. I believe I have apnea but my breathing was never so obstructed that it consciously woke me up at all, much less clawing at my throat desperate for oxygen.

* I wear a Fitbit at night. Pre-CPAP, my heart rate was steadily around the 70s and 80s throughout the night. Now it jumps to 130+ as these episodes occur.

* I've met with my sleep specialist doctor numerous times about this and I'm not getting anywhere.

* The machine itself has been checked for malfunctions by the doctor so I know it's working correctly. Furthermore, my husband has the identical model and the issue also occurred when I tried his so I've ruled out any possibility of mechanical problems with the machine.

* I have changed every piece of disposable tubing and connectors.

* My doctor has checked the structure of my nasal passages and says everything looks "wide open."

* I don't have allergies, sinus problems, nasal congestion, or excessive dryness.

* I've tried every possible combination of humidity, airflow, ramp, and pressure settings.

* I do not sleep with my mouth open and have even wedged a t-shirt under my chin to make extra sure it stays closed.

* I'm not having bad dreams or nightmares.

* I've tried three different types/thicknesses of pillows. The problem also occurs in different beds while traveling, etc.

* I sometimes take melatonin at bedtime but the problem occurs whether I do or not.

* The seal is good and the machine-recorded data also shows 100% seal the entire time I have the mask on.

* My tonsils were removed 30 years ago. I've never had any other head or neck surgery.

* I have tried all three sizes of nasal cannulas.

* I currently have a nasal mask.

Details: I simply cannot breathe with the CPAP in place. When I tried using the nasal cannulas, I'd startle awake constantly so my doc switched me to a nasal mask and that's when the fun really started.

Within 20-30 minutes of falling asleep, I am so oxygen deprived that I wake up gasping and desperate for air in a way I never experienced even before my apnea was (attempting to be) treated. I end up bolt-upright in bed open-mouthed, audibly gasping, tearing at my mask, light-headed, seeing spots before my eyes, tingling hands and feet. It feels exactly like when you hold your breath to the point of fainting. When I wake up I am on the verge passing out.

My husband is sometimes awake when this happens and he confirms that everything seems normal and functional until these events where I am not getting air until I wake up almost hyperventilating. I put the mask back on, go back to sleep, and it happens again a short time later -- over and over and over again until I finally take it off for the night.

I haven't used my CPAP in weeks because it's the opposite of helping me at this point but I don't know where to go from here. I've tried explaining this to my doctor and he's just...not hearing me. He's the only sleep specialist on my insurance and pretty much the only one in my area so going somewhere else isn't an option. The dispensing technicians (a medical supply facility) only deal with the equipment, not how a patient uses it, and are not a resource for this problem.

I'm a pretty good advocate for myself, am a calm patient, and don't go into my doctor's office with a case of histrionics. I've tried and tried to calmly articulate the issue to my doctor and even gone so far as to take my husband along with me so he can tell the doctor what he sees. I've enumerated all the points I've made here more than once but the doc just ends up fiddling with the CPAP settings and sending me home.

I saw the post on the blue about ENS but I don't think it's relevant to this situation because I don't have issues breathing under any other circumstances except with the CPAP. I've spent hours scouring apnea forums and trying just about anything I can think of or the internet suggests and I'm completely at a loss.

I've pretty much given up on getting my doctor's help at this point so can you think of anything else I can try or do you have any suggestions about what might be causing this?
posted by _Mona_ to Health & Fitness (13 answers total) 4 users marked this as a favorite
You had a sleep study before being prescribed the machine, right? What happened then? What type of mask did they use? Will your doctor order another sleep study to see if it's the type of mask/machine or something with you?

Sorry, I know that CPAPs are the devil's work. :(
posted by AFABulous at 1:55 PM on April 25, 2016

Forgot to mention: I had an in-home sleep study to get the initial apnea diagnosis but insurance won't pay for an in-clinic sleep study until I demonstrate consistent CPAP use.
posted by _Mona_ at 1:55 PM on April 25, 2016 [1 favorite]

Have you tried asking the folks at CPAPTalk? It's a forum for those with sleep apnea. I just started using it myself, having had to get started on (ugh) CPAP. They might have some suggestions for you. A lot of times, users will download a CPAP data reading software called Sleepyhead, then post the results for forum members to review and interpret.

Sorry you're dealing with this. I'm on my seventh night of CPAP therapy, and boy oh boy is it not fun.
posted by dean_deen at 2:12 PM on April 25, 2016 [1 favorite]

The supply company probably also employs respiratory therapists. You could try asking your doctor for an order for an RT eval.
posted by pintapicasso at 4:13 PM on April 25, 2016

I'm a sleep medicine PA but this is not medical advice, etc.

1. I've seen oral leak cause this in patients. You may want to try a mask that covers your nose and mouth. Chin straps are not effective.

2. At least in Oregon if you are not able to tolerate the CPAP through autotitration, which it sounds like you are undergoing, it is grounds for an in-lab CPAP titration. I think you are misinformed about the compliance to CPAP therapy = in-lab study. It's the opposite in every case I've seen. I'd advocate for an in lab CPAP titration. Call your insurance for their pay or guidelines of you have to in order to show under what circumstances they'll cover a titration study.

3. An in-lab study will demonstrate if there is central apnea going on. This is sometimes the cause of experiences like yours.
posted by teamnap at 4:21 PM on April 25, 2016 [5 favorites]

I am not a doctor, and this isn't medical advice. I'm just some random guy who has some anecdotes. Please don't sue me.

The two people I know who had the exact same issue had central apnea. The CPAP machine they got was actively fighting against them breathing. It almost killed my uncle. He got the full on Vader mask and I think it saved his life.

I still want to figure out how to CPAP a room.
posted by Sphinx at 4:33 PM on April 25, 2016 [2 favorites]

IANAD.....But here's my thought...something that may offer some insight if you are stuck trying to figure this out yourself, is a recording pulse oximeter. They are available quite cheaply, and are easy to use. A recording could also provide you ammunition for your doctor/insurance to provide a full sleep study, which sounds like a really good idea for you! The folks over at CPAP Talk have lots of posts about using them.
posted by Northbysomewhatcrazy at 4:49 PM on April 25, 2016

Have you tried a completely different machine? I went to Norco (medical supplies) locally for my first machine, and they told me here;s the machine, there's the bill, don't let the door hit you. The were later such butts about the monthly supplies, etc., that I wound up going to a firm in Boise that does nothing but CPAP. I was in the office for a couple hours with the RT, and she made sure things were working. She had been super about followups and answering questions.to tweek things for me.. They send my stuff out pronto, and the biggest thing is that they gave me a fantastic new machine instead of the outdated POC that Norco had foisted on me. Norco had given me a CPAP, but the therapist gave me a BIPAP. BIG difference.

I will tell you the telemetry doesn't know if you're awake or sleeping when you're using the map, AFAK. I put on the mask and read for a couple of hours, then fall asleep. Since I sometimes have trouble sleeping, I may wake up and read several times a night for an hour or two and then fall back to sleep. For about two months after I first started, I was still getting 6 hours + to qualify for my insurance. Now I can us it and feel quite comfortable wearing it.

I'm wondering what would happen if you put the mask on for several hours a night and watched TV or read a book. Perhaps your previous mask experience is making you use the CPAP in an ineffective manner or you are working against it when you start to relax in deep sleep. Use it for several hours while awake, but take it off when you go to bed to sleep. After a couple weeks of 'practice' then try to wear it when you fall asleep and see if that makes a difference. Maybe you can train yourself consciously to use the mask in an effective manner.

I'm telling you though, get an up-to-date machine and find some place that knows (and cares) what they're doing.
posted by BlueHorse at 5:42 PM on April 25, 2016

I agree with Teamnap. An overnight sleep study should pick this up.
posted by Jernau at 5:46 PM on April 25, 2016

My suggestions are similar:

- you need an in-lab study
- maybe try a full face mask? I can't use a nasal mask. My mouth always opens and I hate the chin straps more than the full face mask
- what's your pressure setting? Getting this right is important.
posted by GuyZero at 8:35 PM on April 25, 2016

When I initially got a CPAP, I would go to bed an hour earlier and wear it while watching tv. It allowed me to get used to it. When I fell asleep after an hour of wearing it and thinking about it, I never had a breathing problem again.
posted by AugustWest at 11:12 PM on April 25, 2016

I got a CMS 50 recording oximeter to help me figure out what was going on with my own sleep. Cpap talk (forum) is excellent. I too would suspect central apnea in your case. Good luck!
posted by persona au gratin at 1:00 AM on April 27, 2016

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