Anyone experience bradypnea with ME/CFS?

[SunnyK]

For many years, and especially when I have PEM/ crash, I've found myself lying in bed, and breathing seems to take too much energy. A better way of describing it would be that if I don't wait from 5-10 seconds after a slow exhale, I get a buildup of tightness in my chest and can actually feel dizzy.

I didn't think about this much until I started doing meditative breathing to try to help insomnia, and the recommendation for one method was 4 count breath in, 6 count breath hold, 8 count breath out. Even though I sometimes felt like I needed a breath sooner than the eight count out, I would get a real tightness in my chest if I didn't sit still after the breath out for several seconds.

I awoke from my nap today and realized that this was pretty extreme, so I finally decided to measure my breaths per minute. Testing for one minute and then testing for 5 minutes/ 5, I get about four breaths per minute. Which is clearly way below normal.

I searched Google quickly to see if there were any reports about bradypnea with ME, But it seems that most people, if they have a breathing issue, have the opposite problem.

I do not use alcohol or opioids, but I am on a few sedating drugs to help me get the rest I need in the afternoon and at night. Wondering if these are the culprits, even though, while I have needed a bit more of these drugs over time, as I said this has been an issue for me for probably 15 years or so, although my sleep study in 2021 didn't mention it in the report.

 

[SunnyK]

I don't have an oximeter, but every time I get in measured at a doctor's office or in hospital, my O2 level is normal.

 

[Kitty]

I think most sedative drugs can depress breathing. Your pharmacist would know more? I can't remember having anything like this connected to ME (though my memory's terrible!), only the air hunger of PEM.

Now you've asked about this, I'm wondering if that's an opposite effect to sedating drugs. I often feel full of adrenalin, and although I sometimes need to gasp air in, it can also make me hyperventilate. So maybe the air hunger isn't real, it's just an over-hyped brain.

 

[Arnie Pye]

Could you be hyperventilating? Possibly without realising? Your symptoms sounds like what I had years ago.

When people hyperventilate the breathlessness and dizziness they feel isn't caused by low oxygen. It is caused by low carbon dioxide (CO2).

When I was hyperventilating badly I couldn't hold my breath for more than about 2 seconds before I was gasping for breath. I was seen at my GP surgery by a respiratory nurse who taught me breathing exercises that I had to practice at home (just lying on a bed). The exercises allowed me to gradually learn how to breathe at a normal rate. I managed to stop hyperventilating but occasionally have episodes where I start again for some unknown reason. When that happens I do a few sessions of my breathing exercises to get back on track.

This all happened around 2008, when the NHS still worked. Since then my surgery and others have got rid of the respiratory nurses, and they blame the patients' mental health for the over-breathing and suggest CBT for hyperventilation. I seriously doubt that it helps, or if it does it will be very slow compared to my treatment, whereas what I got taught did work, and I improved very quickly.

Edit : I should point out that hyperventilating is absolutely exhausting, and it can cause quite severe chest pain from the over worked muscles over the ribs, and possibly from over-inflated lungs.

Edit 2 : When I first started doing the exercises I felt like I was being suffocated.

 

[Samuel]

idk if this is relevant but:

- idk my breathing rate. how do you measure? if you're paying attention to it, could that be a heisenberg-like confound?

- i forget to breathe. then i feel like lack of oxygen and have to take a deep breath and more breaths or so. i have noticed this since at least the late 1990s. not sure how to characterize it.

- i sort of hold my breath and purse lips and take deep breaths. not sure how to characterize it.

- i tested positive for obstructive and central sleep apneas in 1990s with overnight in-labs with eeg.

- waking o2sat measured by me seems low, but i don't have numbers available. i recall 94 is about the highest without trying to change it. 91 might be a common number.

. Nocturnal oxygen saturation O2sat (pulse oximetry) results 2012 negative and positive on different tests. significant desaturations. I think it varied.

- the only number i have right now is for a positive test and that was 78%. never got cpap/apap. want to try it.

- i got bipap briefly back in 1990s but my mouth was open and the air went through nose and out mouth, and i didn't think to tape my mouth shut. so useless.

- due to executive dysfuntion and other things not doing my 2lpm overnight oxygen cannula or 1h per day 10lpm mask. want to. also cpap/apap/bipap.

- i have had reversed and delayed phase sleep all my life

 

[SunnyK]

idk if this is relevant but:

- idk my breathing rate. how do you measure? if you're paying attention to it, could that be a heisenberg-like confound?

- i forget to breathe. then i feel like lack of oxygen and have to take a deep breath and more breaths or so. i have noticed this since at least the late 1990s. not sure how to characterize it.

- i sort of hold my breath and purse lips and take deep breaths. not sure how to characterize it.



- i have had reversed and delayed phase sleep all my life

Samuel, Kitty, and Arnie -- everything you describe, especially about air hunger and hyperventilating, low blood O2 saturation, etc, fit with what I've read about breathing and ME. I've had a few occasions when I've come close to hyperventilating, and back when my illness was milder and I did things that required lung capacity, like deep-water running and singing, I always ran out of air very easily, even doing regular breathing exercises.

But what I'm describing (and yeah, observing my breaths while running a timer on my phone could be a bit Heisenberg ), is like Kitty said, the opposite of air hunger. If I consciously try to breath more often, my chest gets tight and I feel like I have to slow back down.

My sleep studies in 2017 and 2021 showed normal O2 levels, and I get sleep apnea only if I'm on my back (JRA destroyed my jaw joints such that my lower jaw is very receded, meaning I can't open my mouth very wide when on my back), but I'm a side sleeper.

I'm guessing it's the sedating drugs, so I'll reach out to my GP. I feel stuck between a rock and a hard place: either I take the drugs and sleep but may be exacerbating the lightheadedness, brain fog, etc, symptoms; or, I don't take the drugs, don't sleep, and exacerbated the atrial tachycardia, tired but wired, leg cramps, etc, symptoms. Just taking less of the sedating meds this afternoon prevented me from getting the nap I really needed.

I do think I possibly have a reversed sleep cycle; if I were left to myself just listening to my body, I would probably sleep from about 12:00 or 1:00 a.m. to about noon or So-- I don't know because I've never tried this. My problem is that I need to get up in the morning to get in morning meds for my other conditions, as well as to get food in me-- and once I eat, I have to be up for an hour and a half due to hiatal hernia and gastroparesis. And once I am up that long, there is no falling back asleep unless I have some medicinal help.

Thanks to all of you for your input, as you have clarified my problem for me!

 

[Yann04]

idk if this helps you but I have this when in pem. the only thing that helps (and ive tried a lot) is pacing. Doctors never took it seriously and my spo2 levels are low but not concerningly low.

 

[SunnyK]

@

idk if this helps you but I have this when in pem. the only thing that helps (and ive tried a lot) is pacing. Doctors never took it seriously and my spo2 levels are low but not concerningly low.

That helps hugely. I'm in what others here have helped me to see as compounding or rolling PEM, though I'm trying to get better with pacing via Visible Plus (this app really is a game changer for me so far--been using it for two weeks).