ASV not catching onset / transitional centrals

[Boodmaster]

Hello, 

As the title says, I’m having a pretty intense (to me) problem. It’s be a long time since I’ve posted here, hopefully I’m clear and concise. 

I've been using my ASV since 2017, Central apneaX and because of this site, now typically have an AHI of 0.0 - 0.5, down from 22ahi tested and 36ahi peak when I was on Bipap. Compliance is practically 100%. I never take my mask off and no longer have aerophagia. My leaks are under control and I typically feel ok. Full face, resmed f20 airfit. 

I’ve been having an issue intermittently that I can seemingly only attribute to digestion / gas and how it affects my blood pressure and therefor onset/transitional centrals. My wife and I have dubbed it a “the bad night”. 

It always goes like this: I start having overly low blood pressure, starting to head bob and practically drool. I immediately have what I can only only describe as immediate, severe and intense change in body temperature. I will need long sleeves, pants, robes, double blankets etc, and it comes and goes. This lasts for hours. As I’m drifting off to sleep, I’ll do my typical gasp, just like I did OFF machine, untreated. 

But I’m doing this ON machine, mask on, within about a minute of passing out. And I use that term very literally: passing out. It’s almost as if I pass out completely, fainting, while in bed ready to sleep, and then wake up with the typical, onset/central gasp awake. It wakes me up 100% of the time to full consciousness. Then I practically hallucinate back to sleep, shivering, and repeat the process. Usually it takes 1-2 hours of this, and I may wake up dozens and dozens of times, only to immediately repeat the process of practically passing out back to sleep. I never seem to take the first breath autonomously. Ever. After 1-2 hours I’ll be able to gain enough consciousness to break the cycle and wake up, take the mask off and try and sit upright and just wait, let time pass. 

I’ll roll over, get water, bathroom, the whole works, and nothing seems to help. This is exactly what it felt like when I was undiagnosed, and not on the machine. But the ASV doesn’t seem to be catching me as I’m falling. I will feel it going whole-hog as hard as it can, and I end up taking it off and sitting up for a while, just trying to research this bizarre set of circumstances. 

Here’s the odd part, as this is happening, I’m almost assuredly having intense digestive  movement in my intestines. I’m always super gassy while this is happening, and it’s not aerophagia. It’s usually because I’ve eaten something, maybe something I shouldn’t have. 
Every single time, it’s something with capsaicin or peppers, something similar. Almost always, I’ll have a bad bout of acid reflux, burp up the acid 1-3 hours before this. I could have eaten something hot for LUNCH and this will still happen around 10-11pm. I know the solution would appear easy: stop eating spicy foods. The problem is that I don’t always know. It could be something that just has a lot of regular ground black pepper or something. 

As whatever it is is making its way through my under-belly, and I can feel gas or gurgle, I’ll get slightly dizzy, lightheaded, and start getting cold. (Really …super cold). That’s when my wife and I will usually notice and say something along the lines of ‘uh oh, that’s a sign of a ‘the bad night!’ and the next thing you know, I’ve been sitting here nodding on and off for the last 3 hours and barely able to hold it together.

 I always have to ‘fight it off’. I can’t just relax into it, because I’m usually apnea-ing my way in and out of consciousness. Usually on these nights, the Oscar data usually looks like o just took my mask on and off. There’s usually not even any apneas shown. 

I’ve looked up low blood pressure when digesting / gas, and apparently it’s a thing. Spicy foods digesting can cause a drop in BP, being tired causes a drop, and it’s just like a perfect storm of fighting consciousness. 

It’s really absolutely awful, it’s like I’m in a nightmare. 

ENT, Gastro, Primary and sleep are all like ¯\_(ツ)_/¯ and I’m just here shivering and head nodding and gasping awake. 

I started on Zantac to see if it’s somehow acid related, it has not helped unfortunately. I’ve tried over hydrating, in case there was a component of dehydration, that’s not it. I’ve even tried overly chewing all my food, so it’s practically nothing when I swallow it, to help aid in digestion. While definitely helpful, it’s still obviously something else. I do have ADHD, but I’ve had these ‘the bad nights’ since before I was diagnosed and treated.

Today I had tacos at a new place with family, and here I am at 3:50a. I’m past the shivering tremors phase mostly, and obviously awake enough to get through this post, but still so exhausted that I drift every now and then. 

Has anyone experienced anything similar?
Has anyone felt their machines straight up MISS their apneas? Does it seem like an increase in minimum pressure support may help this?
Has anybody made a connection to holding your breath and food/digestion? 

Aircurve 10
AsvAuto
Min E 5.0
Max E 8.0
Min PS 2.0
Max ps 14.0

No ramp settings. 
If you’ve made it this far, thanks for reading.

Boodmaster

[Sleeprider]

Welcome back. What you're describing is not a therapy related problem, but from your description, sounds like a serious health problem or food allergy. I'm sure you could work this out with your doctor or allergist. You seem to know what foods you don't tolerate, and while I would consider it a big sacrifice, you may need to give up spicy foods or products with capsaicin. Your ASV uses the first 90 seconds of therapy to set it's initial targets for respiration rate and volume, and if this period is atypical, so will your therapy be poor. A common example involves people that go to bed and before settling into a relaxed normal breathing pattern are still breathing higher volume, and more rapidly. The ASV picks up this target and continues it, often making the user feel like the machine is taking over and forcing breaths they don't want. In your case, the machine may be picking up an erratic or low breath rate and not "kicking-in" with the therapy you're expecting. There are devices that have preset respiratory volume and rate that would probably immediately intervene in your hypoventilation or erratic breathing, but it's not the Resmed ASV.

Feel free to post an Oscar chart of an event like this and we can try to better confirm what is happening, but this is not a matter of changing settings, rather you need to purse preventive behavior or treatment to solve the problem leading to the poor ASV results. Please consider reading these articles on casaicin or spice allergy. Symptoms have a wide range and can include life-threatening Anaphylaxis, which may be what you're describing:
https://www.verywellhealth.com/spice-allergy-82892
https://metro.co.uk/2018/02/19/chilli-pe...t-7315577/

[Sleeprider]

Boodmaster, I have been thinking about your post and strongly believe you need to pursue an answer to this with your doctor. Treat it like a they do a peanut allergy or bee sting allergy. Your description is of anaphylaxis or something very close. It's vital you identify what substances you may be sensitive to and avoid those, but beyond that, it may be worth having an emergency kit. I don't know if an EpiPen epinephrine injector would be effective or recommended, but it is sure worth considering. Your symptoms sound scary enough that this needs to be resolved by learning what affects you, and how to mitigate the symptoms which seem to potentially affect your heart and breathing. If this happens again, you should not be going to bed, someone should be dialing 911.

[Boodmaster]

Hey Sleeprider, its been a long time. It’s funny you mention the machine setting incorrectly to your minute ventilation because it does seem like it’s an exacerbated feedback loop. I remember before my settings were ideal there were times I’d roll over and turn off the machine just to turn it back on. I’d be more than willing to bet that this is part of it.

I went back and looked at most post history and forgotten that I’ve posted about this very issue previously. I had no recollection of doing so. I have unfortunately been dealing with this for quite awhile. 

It’s so odd to me to have this issue so many hours later, especially after eating 1-2 more meals on top of the culprit. I’ve read up on a lot of capsaicin studies over the years, which is how I’ve been able to narrow it down. It sucks not knowing where these ingredients are hidden. What makes it worse is my multiple drs from multiple angles have no clue what I’m going on about. “Try a PPI” ..ha.. That ain’t it, dawg. 

I only had my mask on for about 45 minutes minutes last night before I had to give up and wait it out for the rest of the night. Regardless I’ll pull the data and post up. I appreciate the response.

[Sleeprider]

Zooming in on your flow rate graph, tidal volume, minute vent and mask pressure from the moment you mask up during an episode, and panning through to your first gasp should show where you depart from normal sleep onset. It sounds like you are building up a respiratory debt that culminates at sleep onset resulting in the gasp. You can quickly setup your graphs for this view by using the Oscar menu View/Reset Graphs/Advanced. As far as working with doctors, I think if you raise the allergy issue it might light a bulb for them. They may be so focused on your ASV therapy, they are overlooking the root cause.

It's been a while, so be sure you're using the current version of Oscar. You still have "Sleepyhead" in your profile.

One more link: Black Pepper Allergy: https://www.verywellhealth.com/black-pep...id-5268048

[robbob2112]

That sounds super scary and I would be getting a full physical and maybe even cardiologist checkout.

Some food alergies may explain this and some have an effect hours after consuming the food. In my case I picked up Alpha-gal from a tick bite. 4 to 8 hours after eating a regular portion of any red meat I get extreme gastric issues and diarrhea along with general flue symptoms. In my case it comes and goes, some days I just get queasy looking at meat and others I can deal fine with 4oz of it.

[Boodmaster]

Your description is of anaphylaxis or something very close. 

It’s funny you mention that. I spent a lot of time researching today and came up with the same thing. I did not see this reply earlier today. I’m making an appointment with a food allergy clinic in the morning to get on it. I’ve had this probably a dozen times in the last few years. I’m definitely over it. It’s pretty horrifying. Regardless, I used chat gpt today to cross reference every food/ meal that I’ve eaten on those days, and 10 out of 10 all have one thing in common, and it’s dried jalepenos/capsaicin. I, at least, have a very specific area to avoid, thankfully. 

I had never considered it because there was never any throat closing / hives etc. I’ve never had a real allergy test, apart from a finger prick / at home one, that I believed to be all sorts of inaccurate. Either way, I’ll get myself on the straight and narrow and report back as soon as I have any other info. I really appreciate your insight. You probably saved my life.

[Sleeprider]

I'll tell you what. Take that first post you wrote to your doctor or allergist. That has everything they need to know, however, you now know what direction to steer the conversation. Scary stuff, and you need to be prepared with an emergency plan if you ever encounter it again. These reactions do not tend to become milder.

[jcp519]

Sleeprider is absolutely right about the reactions not getting better. If this happens again, go to the hospital immediately. Anaphylactic shock is no joke, and very serious.

[Boodmaster]

Just an update, 

I had a full allergy test, including skin/prick, and additional blood for spices / capsaicin’s/ cayenne etc. …. and low and behold it showed 0 allergies. ?

The allergist said it’s definitely likely I have an intolerance to nightshades. (Kinda obviously)  Basically anything spicy + tomatoes and potatoes. I get crazy bloated and gassy, and then go through these spells at night. I had cut them completely out of my diet and was doing great, but I had forgotten about the potatoes (focused on spicy) so here I sit, like clockwork, tonight. 

It’s some form of dysautonomia I suspect. My body can’t break down those foods so my blood pressure drops, as it’s trying to digest, amd I get freezing cold, bloated and gassy, and I get ****incredibly**** drowsy, and then my central apnea becomes insane. It kinda makes sense since AFAIK Central sleep apnea is a part of dysautonomia. I hate that word because it seems like a huge blanket for POTS, which I do not have thankfully. And it’s such a huge issue that seems under-studied, a lot of people running around with crazy symptoms. I don’t like to subscribe to that kinda stuff, especially undiagnosed, but the shoe seems to fit. CSA, cold/heat issues, hardly sweating, adhd, GI triggered responses. 

No chiari, heart valves, brain tumors, or known cause of CSA.

Any thoughts? I’d be interested in making a post regarding food-triggered dysautonomia symptoms and if it worsens CSA for others.