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Shortness of Breath/Air Hunger; Fixed
#1
Shortness of Breath/Air Hunger; Fixed
In vain have you
acquired knowledge
if you have not
imparted it to others.

Deuteronomy Rabba


I want to impart some knowledge on anyone thinking about changing the pressure settings on their CPAP machine to a higher psi.  Unsolicited life advice:  Don't.  

I was diagnosed with Obstructive Sleep Apnea by a Veteran Affairs sleep study in late 2015 and have been using my ResMed Airsense 10 since.  I love my CPAP and cannot sleep without it.

I was completely comfortable using my CPAP until, in late July of 2016, I came down with a pretty bad cold.  It really wasn't a big deal but I was experiencing this feeling as though my CPAP was not working well at night while battling this cold--as if the pressure was not high enough.  My wife said I was snoring even with the mask on and I was tossing and turning all night.  She said I was the most uncomfortable I have ever been since using a CPAP.  I went into the physicians setting the next night and increased the air pressure until I felt comfortable.  Eventually, I came out of the cold but I left the psi on that setting thinking things were going well.  

A couple weeks later I began experiencing a chronic respiratory problem.  It's difficult to explain the symptoms but it's important that I do so that those of you going through it can relate.  It suddenly came on one night spontaneously right as I was going to bed.  It was August 6th, 2016--I'll never forget.  It was just an ordinary evening.  Did my nightly routine and laid down with my mask on.  All of the sudden I had this sensation that I couldn't breath.  Severe shortness of breath and this desire to draw a deep, satisfying breath--the kind you get when you yawn deeply.  I felt like I was being suffocated.  I felt terror, like death.  I ripped the mask off and jumped out of bed.  I stood up with my hands on my hips trying to open up my chest and draw in a satisfying breath but I could not.  I was experiencing air hunger--this desperate desire to breath in deep and fill my lungs with fresh oxygenated air.  It felt like the upper part of my lungs were squeezed tight and keeping air from going below it to fill out my lungs.  

I tried everything but I found no solace that night.  Standing didn't help.  I tried several yoga deep breathing techniques where you breath in through your nose and out through your mouth.  I thought maybe I was having an asthma attack so I took two hits on a spare Albuterol canister we had in the house.  No change.  I took a hot shower and tried to calm down.  Sipped on a hot cup of Celestial Seasons Sleepy Time tea with honey.  I tried everything I could but no avail.  I kept my poor wife up.  I tired myself out from the panic that I crashed out with my CPAP.  I woke up the next morning thinking it was a dream but then the shortness of breath came in the morning too.  

This same sensation would come back day after day.  

It went on for weeks...

...then months...

...then a year.  

It did not matter the time of day or the time of year.  I could be breathing okay one moment and suddenly be paralyzed with fear of breathing the next.  

By September of 2017, I finally got access to great insurance through my new employer and decided to get this looked into.  I went to a Pulmonologist where I got a breathing test done.  They checked for asthma.  They checked for cardiovascular-related problems such as heart disease and afib through ultrasound and imaging.  Pulmonology considered gas build-up in the chest cavity, liquid or gas in the pleural spaces around the lungs, COPD, and acid reflux.  It was all ruled out.  Eventually they gave up on me, thinking I was crazy and recommended I see a shrink (no joke).  I started questioning my own sanity.  Was this all in my head?  

When I was 5 years old, I began getting excruciating migraines about twice a week and had them all throughout my teenage years and into adulthood.  I remembered years ago having migraines and writing a journal about my habits on the advice of a excellent flight surgeon in the Navy while I was serving in the military.  I did as he asked--documenting everything I did during the day from what I ate to how much time I spent outside and what the weather was like.  Once I had my next migraine I showed him the journal.  We ended up finding out that the cause of my migraines was actually caused by a bad habit of holding my nose and mouth closed when sneezing.  This created enormous pressure in my head which caused the terrible migraines.  As soon as I stopped holding in the sneezes the migraines completely went away.  I refused to believe that the air hunger I was experiencing was just going to be the new normal way of things and that I better get used to it; like I did with those headaches for so long.

I wrote my journal out.  Some days were good; some were full-on "Get the ole' pine box ready, I think this is it!" panic attack.  I ruled out foods, seasons, prescriptions--everything.  Everything except the pressure setting on my CPAP that I had adjusted so long ago.  It clicked!  I remembered that the pressure was adjusted higher so I lowered it back to its factory setting and let it run on auto.  I theorized that maybe my body was used to letting the CPAP breath for me at such a high pressure with little effort from my lung and diaphragm muscles that without that high pressure my lungs were forced to do the heavy lifting again that it was not used to doing at night while I was asleep.  

After putting the psi back down to near 4 psi my symptoms significantly decreased in a couple of weeks.  MY breathing and quality of life has gotten significantly better.  I draw satisfying breaths  now with occasionally a stray air hunger right as I am going to bed.  With one good breath, I fall comfortably fast asleep with no dread near-death sensation.

If you have changed your psi, I implore you to please change it back and avoid what I had to go through.  If you are a pulmonologist reading this--I beg you to consider asking your patients about their CPAP pressure setting if a clinically diagnosed OSA patient comes to you complaining of shortness of breath/air hunger.  There are not enough studies out there on the adverse side affects of adjusting CPAP pressure higher than clinically sanctioned.  When I was looking around the internet a year ago for answers to my problem there was no mention of CPAP pressure.  I'm not even entirely sure if anyone else has experienced this same situation and if I am the only.  If you are out there and you connect with my experience; put your psi pressure back to where it was and see if that works for you.  I wish I had me a year ago to tell myself not to touch the pressure.  I know that feeling of dread  of not getting that breath in and maybe this short story of my experience will help you manage your fear and your breathing so you can reclaim your quality of life.
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#2
RE: Shortness of Breath/Air Hunger; Fixed
Hi Bakerman82

Your story sounds terrifying for you. I am so glad you, by vigilance to your own needs, have resolved a frightening situation for you.

There are also cases where diagnosed pressures may not be the appropriate one. This is true for myself. Was diagnosed at 16.8cm H2O and was told that the sleep technicians had to pump me up to 20cm H2O at the hospital study in order to open my airways. This I now know to be supine sleeping and chin tuck which caused it as my own journey has shown that my lowest CPAP was 10.6cm H2O - a good 6cm H2O less.

Now on APAP I have raised it to 11.6 just to capture any stray obstructions as the APAP would reduce whenever not needed. It does hover around 11.6 and last nights For Her reports I got 1 obstruction, 1 hypopnea and 5 RERAs. I 'll take that.

Must say need to understand more about RERAs and whether I should worry about them.

So, just saying, professional titrated pressures are not necessarily the optimum either as others have also testified.
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#3
RE: Shortness of Breath/Air Hunger; Fixed
Hi Bakerman82,
WELCOME! to the forum.!
I'm sorry to hear that you went through such a rough time, but
It' great to hear that you found a solution that has helped you.
Good luck as you continue CPAP therapy, hang in there for more responses to your post.
trish6hundred
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#4
RE: Shortness of Breath/Air Hunger; Fixed
Bakerman, have you ever gone back and looked at any apnea events during the time when you were on higher pressure? Were you by any chance having central or open airway apnea? Your pressure settings of 4 cm-H2O are at the very low end of sleep apnea therapy, and makes me question if your problem is obstructive, or if it might be a mixed or central apnea.

Welcome to the forum. Hopefully we can help you learn what happened during this time so you can avoid it in the future.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Shortness of Breath/Air Hunger; Fixed
Hi Bakerman and welcome.  That certainly sounds like a terrifying experience, but I don't think this is a common result of raising your pressure.  I don't recall ever hearing of this before.  I've raised mine from 8 to 15 with only better sleep as a result.

One small correction: the pressure in these machines, even at maximum, is not sufficient to inflate a child's party ballon.  It is measured in centimetres of water , cmH2O.  8 cmH2O is about .1 PSI from memory.  See https://en.wikipedia.org/wiki/Centimetre_of_water
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#6
RE: Shortness of Breath/Air Hunger; Fixed
(12-17-2017, 09:46 AM)Sleeprider Wrote: Bakerman, have you ever gone back and looked at any apnea events during the time when you were on higher pressure?  Were you by any chance having central or open airway apnea?  Your pressure settings of 4 cm-H2O are at the very low end of sleep apnea therapy, and makes me question if your problem is obstructive, or if it might be a mixed or central apnea.

Welcome to the forum. Hopefully we can help you learn what happened during this time so you can avoid it in the future.

I agree, there was also no mention of humidity either, whether he was using it or not.
4 is a very low pressure and I would get checked to see if 4 is enough to prevent you having apneas.
There is more than obstructive apneas and it might be you were getting a lot of others.
This is why we use Sleepyhead so as we only put the pressure up to what we need.
I don't know what pressure you put the machine up to, but I have never put the pressure up due to a cold, instead I have placed a capsule of the stuff that you get for children in a small vessel near the air intake sprinkled onto a paper tissue so that the fumes were pulled in over night to give me just enough relief to get through the night.
Never put it into the humidifier though.

It is strange though, every time I asked for more pressure from my machine in the past they turned it up without a second thought.
The only time I was told "No" was when they reckoned there was only so much air could get down my nose.  Well, that was the wrong theory anyway, it was pressure, not more air I asked for!  I said that to the nurse and she thought about what I had said to her, she went away without saying anything, came back and said "Yes, it is pressure, not more air flow, I will turn it up."
That was the last time I upped the pressure as it suited me fine.

I wonder why the extra pressure had such an effect on you.  I have not heard of any one else having this, however, that does not mean there isn't anyone out there with the same problem.
Did you let your doctors know what you had found?
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.


Every journey, however large or small starts with the first step.

Sleep-well
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#7
RE: Shortness of Breath/Air Hunger; Fixed
I think Sleeprider is on the right track.
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#8
RE: Shortness of Breath/Air Hunger; Fixed
I had similar events on a few occasions prior to going onto CPAP, and a couple of times after being on therapy for a couple of months.
Twice I went to the ER, and they kept me for a few hours of observation and ran a few blood samples, concerned about a cardiac event.

I'm assuming the events before I went on therapy were sleep paralysis or night-terror events related to my apnea. The events after, while similar, would tend to come on while I was still awake. An increase in minimum pressure from 4 to 8, with an increase in EPR to 3 helped a bit, but I would still get a hint of the feeling every now and then. When I would feel it come on, I would just try to relax, and, with the mask on, take a few deep breaths, exhaling through my mouth.
This only happened with the nasal pillows and nasal mask... not with the FFM.

I have not had such an episode since last March. Yes, it is terrifying.
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#9
RE: Shortness of Breath/Air Hunger; Fixed
I am not going to temp fate, I have not had this and I hope I don't.
I did get a feeling of not enough breath once, but I was running trying to keep up with someone while carrying a big tool box and some other stuff, gave me a scare, I dodn't bother running to catch u with anyone after that.  It was my own fault and not caused by CPAP.  My body required more air that I could physically take in!   Oh-jeez
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.


Every journey, however large or small starts with the first step.

Sleep-well
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