Shortness of breath during the day...

Hi, I've been on a CPAP machine since early January, so over 6 months now. After the initial adjustment period, I loved it. My initial sleep study revealed I had severe apnea with a score of 56. Once I got dialed in, All my scores were fantastic. Zero leaks, average AHI of 0.2, and zero periodic events.

However, after a couple of months I noticed when I'd wake up, that my heart felt "funny"...hard to describe...just kinda beating feebly? I didn't pay much attention to it. However, about a month ago I started getting shortness of breath during the day. With it would come huge waves of anxiety (from the sensation of not getting enough air). I have an O2 sensor and it says my O2 is fine during these times. Yet I still wound up in the ER one night, and it's a constant struggle to not go in again.

The ER did a chest X-Ray, an EKG, blood labs, etc., but they couldn't find anything wrong. I saw a cardiologist and in the initial visit he didn't find anything wrong either. I have since done a 48 hr holter monitor and an echocardiogram. I see him for the results tomorrow, but I'm guessing he won't have any answers.

My question is this: Has anyone ever heard of CPAP and perhaps too high of pressure causing these kinds of symptoms? Because since this has become a problem, on the bad nights I've had to skip using the CPAP machine, and on those nights, I wake up the next day feeling better. And then when I go back to using the machine, I wake up short of breath again.

Is it possible that the high positive pressure is conditioning my brain, lungs, or nervous system in a negative way?

Thank you

I'm glad you're getting a good work-up for this. Please raise the question about CPAP settings and shortness of breath/feeble heartbeat with your doctor. It's a good question, and I hope your doctor will have an informed answer.

You might also ask whether you could use a night-time monitor for O2 sats. If the doctor's office doesn't provide one, you can buy one for under $40.00.

You might also download the Oscar software:

https://www.sleepfiles.com/OSCAR/

and import the data from the SD card in your machine. (If there's an SD slot but it's empty, just buy a card.) You'd need a laptop or desktop computer and a way to read the SD card (slot in the computer or plug-in reader -- they're cheap).

By posting an Oscar chart, people here might be able to point to issues that need addressing. Some oximeters are compatible with Oscar, by the way: Contec CMS-50D+, CMS-50-E, CMS-50E; Contec CMS-50F, CMS-50H.

GKY wrote: ↑

Sun Jul 26, 2020 11:05 pm

Has anyone ever heard of CPAP and perhaps too high of pressure causing these kinds of symptoms?

No.
Not with an AHI less than 1.0 that you are reporting.

GKY wrote: ↑

Sun Jul 26, 2020 11:05 pm

Is it possible that the high positive pressure is conditioning my brain, lungs, or nervous system in a negative way?

I cannot even remotely think of a way this would be happening.

It's just air...that's all it is and the pressure even at 20 cm isn't enough to blow up a balloon. While you might think it is "high"...it isn't.

Hate tø mention it, but.. have you had a Covid test? Some people aren't sick enough to do anything about it but suffer quietly (like you) and their MDs may just not have tested them if they ONLY had dyspnea (shortness of breath), but they could still have it, pass it on, etc. etc. and I'd want to know. Hope you're OK!

Hi GKY,

The symptoms you describe could be hyper-ventilation – breathing more quickly and more deeply than is needed at that moment. The classic cases are opera singers or wind-instrument players who breathe more for their 'job' but do not switch back to a more appropriate level once the performance is over.

Hyper-ventilation – and its related hyper-ventilation syndrome – is a diagnosis which is worth considering after all the physical tests have been done and they show there is 'nothing to find' – and yet the symptoms persist.

The treatment for it is the daily practice of breathing exercises. Getting them right can be helped by doing the exercises under the supervision of a physio-therapist who specialises in breath work.

Miss Emerita,

Indeed I brought it up to the cardiologist today. And being that his findings showed that my heart was okay, and that in his opinion it wasn't the cause of shortness of breath, he said the CPAP settings may very well be at fault. Especially since this is the 3rd day not using it, and today I had no SOB issues at all. And thank you for the O2 night sensor info!

rick blaine,

Yeah that kinda overlaps what I was thinking about the CPAP. Perhaps if the pressure is too high, I am not exhaling enough, or not making a good gas exchange. In the ER, my blood labs showed that my CO2 was low. And I'm going to guess that that would also make you feel short of breath. In fact isn't low CO2 hyperventilation?

Again today I asked for a covid test, but the after listening to my lungs again, the cardiologist refused to order one.

The only problem now is that I wake in the morning with a headache (presumably because of the apnea), but at least I can breath!

But tomorrow morning will be the decider for me. If I wake again without the CPAP yet able to breath, I'm going to have to say for sure the CPAP caused this. Hopefully it will be repairable with new settings.

Hi again, well presuming you don't have Covid for now, I'm still curious why your MD 'refused' to test... seems strange however much he may feel sure you're ok. Does he not understand that people can have very low level symptoms and 'recover' in time, but still pass it on to others who may not be so lucky? I'd want to at least ask him (or his nurse, etc) why he would not at least refer you to do it however much he's decided it's all about Cpap.

Julie wrote: ↑

Tue Jul 28, 2020 6:05 am

well presuming you don't have Covid for now, I'm still curious why your MD 'refused' to test.

Depending on where a person lives the Covid testing is in short supply and pretty much the doctors won't order a test unless someone is showing some definitive symptoms and/or has had known exposure.
Contrary to what is being said...not everyone can get a test if they want a test.
Hell...there are people who are having marked symptoms of fever and cough and the like and they can't get a test because the testing sites are running out of available tests.
A few weeks ago before this latest mess we are in it was a bit easier to get a test for questionable symptoms but not so much right now.

Unfortunately right now only the people who are really sick with obvious bad symptoms are getting the doctors orders to be tested.

Julie wrote: ↑

Tue Jul 28, 2020 6:05 am

Hi again, well presuming you don't have Covid for now, I'm still curious why your MD 'refused' to test... seems strange however much he may feel sure you're ok. Does he not understand that people can have very low level symptoms and 'recover' in time, but still pass it on to others who may not be so lucky? I'd want to at least ask him (or his nurse, etc) why he would not at least refer you to do it however much he's decided it's all about Cpap.

ah! but you forget. you live in a country where taking care of the sick is a priority. so you have things like testing and such like to hand.

meanwhile, in america....

this isn't to say the doctor in this case doesn't care. i'm just pointing out the differences between your civilized country and ours.

Just watching Barr trying to defend what's happening in Portland, etc... quite interesting (sorry, not Cpap related, except that it is).

Julie wrote: ↑

Tue Jul 28, 2020 12:57 pm

Just watching Barr trying to defend what's happening in Portland, etc... quite interesting (sorry, not Cpap related, except that it is).

Probably best cussed or discussed over in the anything goes Covid thread.
I won't get up on my political soap box in this thread or hijack it with that discussion beyond explaining why we can't always get a Covid test done here in the US.

As far as OP's original shortness of breath symptoms occurring during the day seemingly being associated with cpap use alone.
I still don't see it but I don't have access to all his medical records nor do I know all his history and I feel it is a problem he and his doctor need to sort out. There may be special circumstances involved here that we simply don't have access to.

Do you have the Flex setting on or EPR (pressure relief) on your machine? I have noticed recently for me that I have been having shortness of breath and dyspnea. I have also changed the dosage on a medication that I take. It seems like when I have EPR set to 1 on my machine this is not as severe but on 2 or more the dyspnea gets worse. I think I would try adjusting the pressure relief on your machine and see if you feel any better. Again I am speaking from my own experience but I have also noticed that when my humidity is too low I get worsened shortness of breath/dyspnea, it seems to be much better when I increase the humidity.

joeljjk11,

I do have a flex setting on my Phillips Dreamstation and it's set to 3, which supposedly is the easiest setting. But I've tried settings 1 and 2 and honestly they all feel the same to me. My new primary care doc said that he'd like to see me on a Bi-PAP machine. He has referred me to a pulmonologist. In the meantime, he set my up with Flovent, the latest in inhaled corticosteroids. And it actually makes a difference! It hasn't solved the problem, but it definitely has improved it to the point where I don't feel like I'm moments away from dying. So, inflammation of the lungs is definitely part of the problem. So the next question...could this be a bacterial infection (does that qualify as pneumonia)? I've only rinsed my mask, frame, and tube with a bucket of soapy water each morning (dish soap), rinsed, then dried by hooking it up to the machine and letting it run for 10 minutes. Is this fine? Or do I need one of those UV light contraptions?

You keep asking questions of other members who, while they might be well informed, are not doctors, are not actually familiar with you in person, let alone "in lab", and who can only guess at things you set them up to tell you based on what you tell them. I Still think you should be 'tested' as many, many Covid patients have the same experience as you with only certain symptoms but not others, and it can go on forever... all the while they think they're ok and are spreading it to others. Joel cannot tell you what your problem is for heaven's sake and waiting for (great idea) an appt with a pulmonologist in the future is just dragging things out - might have been a greater idea a few mos. ago.

GKY wrote: ↑

Fri Aug 07, 2020 3:10 am

joeljjk11,

I do have a flex setting on my Phillips Dreamstation and it's set to 3, which supposedly is the easiest setting. But I've tried settings 1 and 2 and honestly they all feel the same to me. My new primary care doc said that he'd like to see me on a Bi-PAP machine. He has referred me to a pulmonologist. In the meantime, he set my up with Flovent, the latest in inhaled corticosteroids. And it actually makes a difference! It hasn't solved the problem, but it definitely has improved it to the point where I don't feel like I'm moments away from dying. So, inflammation of the lungs is definitely part of the problem. So the next question...could this be a bacterial infection (does that qualify as pneumonia)? I've only rinsed my mask, frame, and tube with a bucket of soapy water each morning (dish soap), rinsed, then dried by hooking it up to the machine and letting it run for 10 minutes. Is this fine? Or do I need one of those UV light contraptions?

Your cleaning routine sounds very thorough. There is no need for you to use a UV light device.

You can read more about pneumonia here:

https://www.mayoclinic.org/diseases-con ... c-20354204

It can be caused by a viral infection, a bacterial infection, or both.

Flovent is used to treat asthma, as you may know. More about asthma here:

https://www.mayoclinic.org/diseases-con ... c-20369653

I'm glad you have an appointment with a pulmonologist, and I hope you can see him or her sooner rather than later. Did you ask the new primary care physician about getting a COVID test in the meantime?