Experiencing a very weird issue, desperately in need of advice

[Jwicks1995]

Key information:
- 24 years old, Male, muscular build, not overweight
- No history of gut issues prior to CPAP
- Current pressure - 8 - No CFLEX
- Used CPAP for a few years

Main issues
- Cognitive issues, bloating, anxiety & depression, bloating when I use CPAP
- Mind feels blank. Suspected circulatory issues due to hyperventilation. Hyperventilation exacerbated by air swallowing/aerophagia?

Overview

Ever since I have started CPAP my life has been going downhill. Within the first week, I started to experience extreme bloating, this led to me starting to react to foods and get brain fog really bad. The only way this could be controlled was through simply not eating. I quickly lost ALOT of weight due to being unable to sleep with any food in my stomach. I have played around with every pressure from 6 upto 15. Tried Aflex 1,2,3 and clfex 1,2,3 and epr 1,2,3. I have used a mandibular splint and all my issues dissapear but leave me with the usual sleep apnea oxygen-deprived state. But without any bloating. I simply cannot get the bloating to go away. Ive done every diet from Carnivore to paleo, vegan and intermittent fasting.

I want to understand why this keeps happening. My sleep apnea stems from a small jaw and law tongue. UARS? my airway feels extremely narrow and I even have issues breathing properly during the day. I don't know if this is from the cpap or not but I tend to breathe very shallow and rapidly and not belly breathe. I feel like the design of my airways force me to take rapid inhales in order for air to pass through my narrow airway, this in turn may lead to acid from the stomach to enter the upper oesophagus inflaming and narrowing my airway further. I'm unsure.

I have experimented by reducing the leake rate of my mask (phillips fitlife full face mask) by slightly covering a valve, to my surprise this led to a more unrestful sleep but my cognitive dulling and numbess reduced quite a bit. Perhaps I am blowing off to much co2? low co2 reduces cerebral circulation in the pre front cortex which is where all my issues lie. Its as if I do not have an executive functioning system. I feel brain dead and apathetic and do not want to do anything. Yet a night off the machine my goal oriented mind returns. I am so confused and do not know what to do. Cerebral vasoconstriction is the result of blowing off too much co2. Another symptom is that I cannot feel any mind altering substances such as coffee. Zero effect at all. It's as if nothing can pass my blood brain barrier due to the circulatory issues. Yet a night off and boom and i get mind back again!! Don't know what to make of this.

Ive already undergone radiofrequency ablation to reduce tongue and it didnt work at all - spent 8k. A mandibular device - 2k. And am now considering jaw surgery.

Am i intolerant to co2? causing me to breathe in such a way that gets rid of it? should try and become accustom to co2 with reduced breathing?? Ive had small success reducing my inhale and exhale by putting some tape on my nostrils. I feel like the issue stems from my breathing, which effects my stomach. Causing a negative feedback loop leading to cerebral vasoconstriction through hyperventilation.

If anyone has ANY idea or has heard of a similar issue please let me know.

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Sleepyhead data - Sleep study results - sleepyhead overview (+ oximetry data for 1 night)

[RonS]

Do you have a Hiatal Hernia? Have you had an endoscopy?
Also, have you seen a cardiologist?

Good luck

[JDS74]

Your breath rate at night seems to be in a normal range - at least my pulmonologist says so for mine which is similar to yours.

Messing with the mask ventilation is dangerous - only do that with the guidance of your pulmonologist/sleep doctor. It increases the retention of CO2.

You may very well have severe aerophagia and that be the cause of the bloating. Can you see a ENT doctor to see if there is something out of sorts with your lower airway or epiglottis that is allowing the air to divert and cause the bloating? My pulmonologist tells me that there is a form of sleep study in which a camera is inserted to take pictures of your lower airway while you are under sedation (and I assume using you CPAP) to see what is going on.

Is it possible to wear the mandibular device and still use your CPAP mask and machine?

[Julie]

If you can raise the head of your bed on e.g. 5-6" blocks in some way it may help as it has for others.

[ragtopcircus]

At the risk of nitpicking, you say you have tried Aflex, CFlex, and EPR. Dreamstations don’t have EPR.

Resmed’s EPR is basically Bilevel limited to max Pressure Support of 3. Flex is just a momentary dip, and at level 3 it only gets down to 2 cmH20 briefly (and oddly timed).

For my fiancée, EPR 3 helped significantly with aerophagia (and other issues) compared to Flex 3.

I can’t comment further on your situation though - I will leave that to others with more expertise.

[chunkyfrog]

Depression, anxiety.
Get help.

[Miss Emerita]

I think the best way for you to address your concerns is to explain them to your primary care physician, who can then decide what referrals to specialists might be in order. Depending on that assessment, you may need to see a GI specialist, a neurologist, a psychiatrist, a pulmonologist, an ENT doc, or .... This is by far a better plan than continuing to try to self-diagnose and self-treat what may be complex medical problems that may be largely unrelated to CPAP and apnea.

Like JDS74, I urge you not to modify your vents. I also urge you not to tape your nostrils.

[Janknitz]

A narrow airway in and of itself shouldn't be the reason you can't avoid the aerophagia. I do fine with sealing off my oropharynx despite a very high arched palate, extremely narrow arches, small and receded lower jaw (micrognathia), low muscle tone, and very narrow airway. You may need a bipap machine to give you more exhalation pressure relief, you may need to alter your sleep position, and you may need practice and strengthening of the oral musculature to seal off the airway during sleep (and learn diaphragmatic breathing for daytime and night). It doesn't look to me that you have exhausted your options, but you may have to push to get more professional assistance in problem-solving.

I'm not sure where you are coming from with your statements about CO2 and cerebral circulation. Seems to me you are reaching. If that's really the case, then you need very specialized monitoring during a sleep study with a pulmonary specialist. Are you grasping at straws to try to explain your symptoms???

I recently attended the American Sleep Apnea Association conference. One of the things they were emphasizing at the conference was how effective a multi-disciplinary approach to sleep apnea can be. It can also be very efficient to gather all pertinent professionals at the same time with you to see the big picture.

Stanford University has a multi-disciplinary team that sees the sleep apnea patient and they presented at the conference a mini-multi-disciplinary team with two patients who are not getting optimal treatment from their CPAP therapy. A video of the panel is here: https://www.youtube.com/watch?v=cCPh4SWhQps The team included an othodontist, speech pathologist, clinical psychologist, an otolaryngologist, and a sleep medicine specialist (panel member happened to be a pediatric pulmonologist but she was great!). Other members of the team might include cardiology, GI, and an oral surgeon.

Sounds to me that's the approach you need. You may be looking at more than just one problem, and having a team approach can be very beneficial. But we don't all have access to the program at Stanford. You might check around at teaching hospitals in your general area to see if any have a similar approach.

Otherwise you might have to assemble your own team. I would start with a good speech language pathologist who has particular training with sleep apnea. Christina Semonick, the speech pathologist at the conference showed how crucial tongue placement is to seal off the oropharynx and avoid problems like aerophagia. She works with patients to strengthen and retrain the musculature to do this effectively. You might also want to explore otolaryngology to evaluate your airway and what might be done, a GI doctor, and orthodontia. If you have bloating issues even without CPAP, a functional medicine MD or DO might be able to address gut and reflux issues better than a GI doctor (inexplicablly, GI doctor's don't seem to "believe" in the gut microbiome or that what you eat influences GI issues, but functional medicine doctors get it).

The key is don't give up. And don't get stuck thinking it's all due to one path which might only be a piece of the puzzle. Try to get the whole picture.

And DO NOT play with your exhalation port!!! Your body has exquisite systems to regulate CO2. The port is there for a reason. Don't mess with that!