Slow, shallow breathing with oxygen level dips anyone?

[Pietro]

I've noticed that my automatic respiration doesn't seem to be working that well. When I'm not aware of my breathing it seems like I get less than the normal 12-16 respirations per minute. It feels like I get incomplete, slow, and shallow breaths. When I put on the pulse oximeter during these times my spo2 is between 95-96% and it goes up to 97% if I switch to manual breathing and start "breathing right".

As I'm drifting off to sleep it's even worse. I can get down to 93-94% spo2 as I'm in that transition between awake and asleep. I've woken up several times feeling suffocated and sometimes outright in the middle of an adrenaline rush, so I'm almost certain I'm having apnea episodes during sleep, but I'm also certain this isn't just normal sleep apnea because I have near apnea like breathing while awake as well. Anyone else have this? Just last year I had a full workup with EKG, Echocardiogram, Stress Test, Chest CT, and blood work. Nothing anormal with my heart or lungs, so I'm guessing this is autonomic dysfunction.

Other symptoms I have: tachycardia upon minimal exertion, ectopic heartbeats, migraines, heat intolerance, dizziness, brain fog, occasional constipation.

[Brenda-ster]

Pietro, I have come to this site tonight to try to find out whether "waking apnea" is a dysautonomia thing. What I've been experiencing is much as you describe. Thanks for posting the question. It lets me know I'm not alone, and that the reason it's happening may, indeed, be the dysautonomia. 

[MikeO]

This fluctuation happens to me as well. Never thought too much about it. i will fluctuate between 92% and 99%. Now i am wondering if this is due dysautonomia or even how a malfunctioning ANS  could even cause this.

[Nelson G.]

Yes,  I also have this fluctuation thing.
What I can share is that I bought an oximeter 2 months ago,  and my spo2 was really low, 90 - 92 sometimes,  and my 'normal' was about 92 - 94 (94 was the highest tbh,  more on the unusual side).  It was 90 - 92 when: going to the bathroom (pooping),  sudden changes of position,   or,  being too much time in a position.  or waking up,  or before sleeping, after a bath, it was sometimes at random to be honest, but these were the most common moments.

Lately I had this 'grandma idea', of eating beef liver...  12 hours later my saturation was 97-98.   The highest I've ever seen in my life (in the last 10 years i've been to emergency a lot, and their oximeter was always below 94), I asked my doctors a few times if it was normal to have such a low spo2 but they said it was 'expected' due to my dysautonomia.   But they never did anything about it.  They said that it is a problem if the reason was an obstructive pulmonary disease for example, and I kinda agree, like,  saturation that fluctuates with yawning, sleeping or body positioning, or simply a bad day/night, is tricky. 
But,  as of now, a punch of iron seems to have helped a lot.
If I am yawning a lot or just feeling out of breath, the lowest is 93, but after a very few deep breaths (or enough good yawing) it goes up to 95 very fast,  I'm on a normal of 95-97 right now,  and I'm feeling great.  But I suppose I will have to wait months to see how my body responds to higher spo2/heme iron.
(btw I also live at 8700+ feet above sea level, so it doesn't really surprises me my spo2 is not that high).
 

So I don't know,  the last 6 years I've been managing dysautonomia with nutrition mostly,  out of coincidence tbh.  I found out that eating this thing or stopping eating that other thing,  improved my health.  The root of our symptoms can vary so much from person to person...

Also
I used to have sleep paralysis pretty much every night for at least 2 years.  And among other things,  I find deep breathing before sleeping to be a huge tool to avoid any sleep disturbance. 
I encourage you and everyone else with this sense of short breath, or this sense of not having an optimal breathing process, to try deep breathing meditation.  The more you do it the more your body kinda 'learns' or 'tries' to mimic optimal breathing.  A good way to start your breathing process  (lets say after waking up abruptly) is too exhale and then inhale. First to get rid of waste, then bring in new air,  you'd be surprised how much waste air you are/were already holding in.

 

[Pistol]

Hello @Nelson G.. A few things I had to think of when reading your post: have they checked your iron levels? Liver is loaded with iron, and deficiency can cause low PO2 levels.

The fact that you live at such a high elevation would affect the oxygen levels in your blood naturally. 

Another thing - yawning is a common thing with dysautonomia and it is the bodies way to increasing the amount of oxygen in the blood. I get freezing and yawning when my blood vessels constrict and oxygen levels drop. 

Yes, food intake will affect dysautonomia symptoms, and everyone os different in what triggers their symptoms. In most cases it is heavy carbs, spices and fatty meals ( as well as large meals ) that set them off. I have found that eating carbs only in very small amounts and avoiding large meals ( 6 snacks a day instead ) helps control my symptoms. 

 

[Nelson G.]

Hey @Pistol  I thought about that!   I will get a lot of tests when I can move out of my country, hopefully in early 2022.  Tests that I haven't got in a while like iron levels. And more!

Yes... it's so high in here, not the highest in South America, but still pretty high, you certainly can feel it, even elite athletes feel altitude sickness when they come in here,  imagine someone with dysautonomia!  I feel like a super hero for being all my life here.
Elite athletes tend to take viagra.  Andean indigenous people tend to drink coca infusions,  or they chew the coca leaves.  If they don't have it that easy to adapt I can't expect much for me.  I take none of them tho.  I prefer antioxidants from raisins for example, or dark chocolate among others.
I've read before that our red blood cells get bigger so they can carry more oxygen, it's an adaptation (most andean people have this kind of blood). But if one has dysautonomia, the body has a bit of a problem adapting to most environments...  It's exhausting on top of everything.
The only time I went to a non high altitude country,  I had the best year of my life when it comes to health,  I was better in every way.  Hopefully I'll move there completely next year (only downside is that is going to be the first summer ever in my life).

Wow.  That thing about freezing and yawing when your blood vessels constrict?  that's literally me, I even get a bit purple,  but ever since I could gain some weight (i was on the malnourished side),  it helped,  along with sunny days we are having here.  And perhaps breathing exercising,  good breathing always makes me feel warm in a very comfy way.

Well,  that's pretty much me as well lol!,  I do pretty much everything you do when it comes to meals,  I kinda even feel that if I eat a large meal I not only feel crappy but I also get the feeling I'm not digesting any of that meal.  
The only thing is that I like spice,  specially if it is the kind that gives you runny nose or warm mouth?  they are great for the cold nights in here,   it is always very cold in the night.

 

The more I read from more patients, the more I get we are so different yet so similar.  So weird.

[GasconAlex]

Red blood cells don't get bigger to carry more oxygen. If they are deformed they carry less oxygen but you can't change the physical properties of the cells or the haem subunits that actually carry the oxygen or the CO2 to carry extra! 

What does happen is that you can make more RBC so a given volume of blood carries more oxygen. This should happen over time if you live at altitude but doesn't always especially if you are iron deficient. The increase in cell density reduces when you start living at a lower altitude - if everything is working correctly.

[MikeO]

35 minutes ago, GasconAlex said:

What does happen is that you can make more RBC so a given volume of blood carries more oxygen

Interesting. I had a POCT BLOOD GAS/CHEM, VENOUS test a while ago. it showed high PO2 and high O2 sat and my hemoglobin was high as well.

[Nelson G.]

On 12/26/2021 at 9:24 AM, GasconAlex said:

Red blood cells don't get bigger to carry more oxygen. If they are deformed they carry less oxygen but you can't change the physical properties of the cells or the haem subunits that actually carry the oxygen or the CO2 to carry extra! 

What does happen is that you can make more RBC so a given volume of blood carries more oxygen. This should happen over time if you live at altitude but doesn't always especially if you are iron deficient. The increase in cell density reduces when you start living at a lower altitude - if everything is working correctly.

Great,  thanks for the correction.

Just wanted to write a follow up on what I said last year.

TL;DR:  If you have POTS/Dysautonomia.   Avoid living in high altitudes. 

 

It seems obvious. I mean, not only because you have less oxygen,  but because in general we as species wouldn't be able to evolve or adapt to the environment without our autonomic nervous system;  If ours is impaired,  we know —in our case directly— that we can't adapt that easy, or, at all, to summer,  sometimes rain,  sometimes cold, or in this case high altitudes. 
Healthy people, or even athletes, do adapt to high altitudes, after several days (depending on how high the altitude).  I don't know at all the physics of high altitudes,  meaning I've seen soccer games played in La Paz, Bolivia, and they can kick the ball from 40+ yards, with so much violence and speed right into the net,  that can't happen anywhere else let me tell you that.  Everything changes so much, not only oxygen levels,  if healthy people can get altitude sickness, if their nervous system is under stress, and struggle to adapt,  on top of that altitude craziness add rain (changes in barometric pressure which already is hard to adapt to), or intense sunlight,  well on top of all of it, add dysautonomia.  At some point is just detrimental,  you will notice something becoming 'progressive' in a bad way,  in my case I never adapted fully.

 

Just wanted to say that I've been a week now in a different country,  and I am doing extremely well.  Not bedridden anymore,  doing lots of stuff.  Spo2 98-100 since I got out of the plane (never lower than that,  I barely use my oximeter now,  I just feel perfect in that regard).  I can't walk that much because too many years being sedentary (my knees and feet are in pain,  but they're getting in shape quickly), and here down south we are dealing with summer.   Not as scary as I thought (my very first summer ever),  but the first 2 or 3 days I did scared my girlfriend because my feet were very red/purple,  and I was about to faint.  I wasn't surprised.  Still adapting.  I need new,  tighter,  stockings.  And better hydration.

The flight was a nightmare tho,  specially when we were gaining altitude.  I literally felt my soul escaping my body  for 3 seconds.  But I didn't passed out.  It was almost like a psychotropic/paranormal experience.  Fun to remember.  Still felt like #$%!@  that moment.   I had elevated HR during the full 6~ hours.  never bellow 101.  140 the highest. 
But I survived,  and it only took me a few steps outside the plane to know I did the right thing abandoning my homeland (Bogota, Colombia),  because it is not the highest country,  but boy that it was high.

[MikeO]

Congratulations! @Nelson G.glad to hear you are already seeing improvements in your new environment. I hope you continue to see better days going forward.

[hollyosburn]

On 3/1/2022 at 4:20 PM, Nelson G. said:

Great,  thanks for the correction.

Just wanted to write a follow up on what I said last year.

TL;DR:  If you have POTS/Dysautonomia.   Avoid living in high altitudes. 

 

It seems obvious. I mean, not only because you have less oxygen,  but because in general we as species wouldn't be able to evolve or adapt to the environment without our autonomic nervous system;  If ours is impaired,  we know —in our case directly— that we can't adapt that easy, or, at all, to summer,  sometimes rain,  sometimes cold, or in this case high altitudes. 
Healthy people, or even athletes, do adapt to high altitudes, after several days (depending on how high the altitude).  I don't know at all the physics of high altitudes,  meaning I've seen soccer games played in La Paz, Bolivia, and they can kick the ball from 40+ yards, with so much violence and speed right into the net,  that can't happen anywhere else let me tell you that.  Everything changes so much, not only oxygen levels,  if healthy people can get altitude sickness, if their nervous system is under stress, and struggle to adapt,  on top of that altitude craziness add rain (changes in barometric pressure which already is hard to adapt to), or intense sunlight,  well on top of all of it, add dysautonomia.  At some point is just detrimental,  you will notice something becoming 'progressive' in a bad way,  in my case I never adapted fully.

 

Just wanted to say that I've been a week now in a different country,  and I am doing extremely well.  Not bedridden anymore,  doing lots of stuff.  Spo2 98-100 since I got out of the plane (never lower than that,  I barely use my oximeter now,  I just feel perfect in that regard).  I can't walk that much because too many years being sedentary (my knees and feet are in pain,  but they're getting in shape quickly), and here down south we are dealing with summer.   Not as scary as I thought (my very first summer ever),  but the first 2 or 3 days I did scared my girlfriend because my feet were very red/purple,  and I was about to faint.  I wasn't surprised.  Still adapting.  I need new,  tighter,  stockings.  And better hydration.

The flight was a nightmare tho,  specially when we were gaining altitude.  I literally felt my soul escaping my body  for 3 seconds.  But I didn't passed out.  It was almost like a psychotropic/paranormal experience.  Fun to remember.  Still felt like #$%!@  that moment.   I had elevated HR during the full 6~ hours.  never bellow 101.  140 the highest. 
But I survived,  and it only took me a few steps outside the plane to know I did the right thing abandoning my homeland (Bogota, Colombia),  because it is not the highest country,  but boy that it was high.

How are your feet doing now?  I used to travel at least 10-20 hours on planes each week for years.  When COVID began, I stopped completely.  My legs now swell, and my feet and toes are often dark purple or red unless I put them up.

[Nelson G.]

On 3/3/2022 at 3:07 PM, hollyosburn said:

How are your feet doing now?  I used to travel at least 10-20 hours on planes each week for years.  When COVID began, I stopped completely.  My legs now swell, and my feet and toes are often dark purple or red unless I put them up.

What you're experiencing was something I felt immediately after arriving back to the high altitude city back in  2014.  5 months later I was diagnosed with Dysautonomia and POTS after many tests for other diseases. 

About my feet and energy levels,  they totally improved if they are not healthy again.  I still have stomach issues, but I'm not doing my best to eat healthy/more salt.  But out of nowhere I can also eat more carbs, and pasta here is delicious.  My gf also happens to cook delicious.  So I am in a bit of a trouble controlling myself heh.  Not surprising after almost a decade eating nothing but chicken and veggies.  I mean they're tasty but you can get crazy if you crave something else and get very sick if you eat that crave.  I don't want to introduce Coca Cola back to my diet,  but I also don't want to be sick just because I drink a can.  Or ate pasta.  whatever.

I still feel odd when standing for too long,   or feel odd palpitations from time to time,  but to be honest this is not even 10% of what I was dealing in high altitude.  Not sure if my case is unique.  Only way to know is to meet somebody that happens to be born in a high altitude city and also happens to have dysautonomia. All I know is that POTS stabilized a lot.  And my Spo2 and HR are pretty much normal again.  The very first days (summer) were a bit scary because my feet and legs were very swollen an red,  but I couldn't ignore the fact that I was seeing some blood return while walking,  and very fast blood return while resting.  Right now I am off compression stockings.  And my feet don't swell that bad anymore.  I am very surprised.