Forgetting to Breathe?

[Anamaria]

Is this a thing with Dysautonomia? I’ve felt lately like I skip a breath (not even sure if that makes sense). Anyone else get this weird sensation or something similar? This is a new symptom for me not too worried as I went to my Asthma doctor and checked out fine but it kind of jars me a little when it happens. 

[Pistol]

I at times feel like I cannot take a "deep enough' breath - after getting a thorough check-up with CT, pulmonary function test and PO2 I was told it can be from dysautonomia. I am not sure of the mechanism behind it though. 

[Anamaria]

2 minutes ago, Pistol said:

I at times feel like I cannot take a "deep enough' breath - after getting a thorough check-up with CT, pulmonary function test and PO2 I was told it can be from dysautonomia. I am not sure of the mechanism behind it though. 

I also get the feeling of not being able to take a deep breath as well. Almost like you’re just taking shallow breaths....

[Peter Charlton]

I am here due to beta blockers permanently doing something to upset the balance of my autonomic nervous system which remains off balance even though I have been off beta blockers 16 months.

One of the first symptoms I complained of from the day I took beta blockers, was feeling as if my lungs no longer worked, I would forget to breathe, especially when talking.

When I was connected to the hospitals oximeter, the alarm was constantly sounding as my blood oxygen was only 87%, so I bought my own oximeter and discovered that many nights, I spend half the night at a dangerously low 85%, and I would have night mares of suffocating. I have subsequently been referred to a sleep apnea clinic for which I see the doctor for the results tomorrow.

But I know its not obstructive sleep apnea, it happens constantly, I know its dysautonomia and the mechanism is that the Autonomic Nervous system has receptors to monitor your blood carbon dioxide and oxygen and gets you to breath automatically when your oxygen is low or carbon dioxide too high, if you have Dysautonomia, this system might not be working correctly.

I posted the other day about low blood oxygen  being even worst for us, because the ANS can compensate for low blood oxygen by increasing blood pressure, and of course blood pressure is also controlled by the ANS, so maybe this back-up system to compensate for low blood oxygen doesnt work either?

Since April, this particular symptom has much improved in me, so maybe that part of my ANS is resetting itself from the beta blockers?

I wore my oximeter last night as I was feeling a little breathless and saw this morning it spent most of the night at 88% which is certainly a touch better than it was.

I have had all the lung function tests which showed I had good lungs.

[Potsie1990]

Yes. I had that for the first time a few weeks ago. It happened at night and was literally like my body forgot to breathe and I had to manually do it myself. I had a long day of standing on my feet and was around hair dye fumes but other than that, it was a normal pots day. I didn’t take anything for it and it eventually went away on its own, but it was alarming in the meantime and I had to do some serious mind control on myself to keep from getting anxious and making it worse. Do you have an O2 monitor? I kept mine to check my levels. It will let you know if there’s a serious problem and you should get help right away. 

[Anamaria]

5 hours ago, Potsie1990 said:

Yes. I had that for the first time a few weeks ago. It happened at night and was literally like my body forgot to breathe and I had to manually do it myself. I had a long day of standing on my feet and was around hair dye fumes but other than that, it was a normal pots day. I didn’t take anything for it and it eventually went away on its own, but it was alarming in the meantime and I had to do some serious mind control on myself to keep from getting anxious and making it worse. Do you have an O2 monitor? I kept mine to check my levels. It will let you know if there’s a serious problem and you should get help right away. 

Yes I’ve been monitoring mine and so far it’s been normal. Hopefully it’ll go away soon. I’m encouraged since you said yours went away....did it last for a few days? 

[Clb75]

I remember having shortness of breath really bad when I first got diagnosed, so much that I had a hard time talking at times. It felt like really shallow breaths, like I couldn’t get enough air on one breath. My doctor at the time said it was because there is a lack of blood flow to the upper parts of the body, including the lungs. In my case this has cleared up with Pots treatment even though a lot of other issues remain. 

[Anamaria]

2 minutes ago, Clb75 said:

I remember having shortness of breath really bad when I first got diagnosed, so much that I had a hard time talking at times. It felt like really shallow breaths, like I couldn’t get enough air on one breath. My doctor at the time said it was because there is a lack of blood flow to the upper parts of the body, including the lungs. In my case this has cleared up with Pots treatment even though a lot of other issues remain. 

All of these replies make me feel a little more at peace.  I’ve been diagnosed with POTS for a few months now but this is a new symptom.  I also have mild asthma so it’s tricky to decipher which one is the cause.   

[Potsie1990]

5 hours ago, Anamaria said:

Yes I’ve been monitoring mine and so far it’s been normal. Hopefully it’ll go away soon. I’m encouraged since you said yours went away....did it last for a few days? 

Yes it only lasted a few nights and it went away on its own without doing anything. Then I developed a really bad nerve pain throughout my body which was bizarre, I’ve never experienced anything like that before. I didn’t take anything for it, it lasted a few days, and then mysteriously went away on its own again. I have gotten the strangest symptoms  that just come and go. They don’t really make any sense but honestly it’s really hard to try and explain it to a doctor and not sound like you’re crazy so I just chalk it all up to pots and call it a day. 

[StayAtHomeMom]

My main and first symptom was not being able to get a deep breath. If I fight it I will hyperventilate and end up in the ER. It is always there with varying intensity. I have had a full work up by a pulmonologist and he said my lungs are fine. After a year I found I had POTS and my specialist just shrugs it off as a symptom. I wish I could make it go away. My O2 is 97 or up.

The only thing I found that remotely helps was in the beginning it would get so bad and I was afraid I would end up in the ER again, I noticed I would have heartburn (the acid in the back of your throat feeling) so I would chew a rolaid with gas relief. The only thing I can figure is the magnesium in it would help. I haven't had to use that trick in almost 2 years now. Very thankful. I just meditate now when it bothers me. I am learning to live with it. 

[Anamaria]

10 minutes ago, StayAtHomeMom said:

My main and first symptom was not being able to get a deep breath. If I fight it I will hyperventilate and end up in the ER. It is always there with varying intensity. I have had a full work up by a pulmonologist and he said my lungs are fine. After a year I found I had POTS and my specialist just shrugs it off as a symptom. I wish I could make it go away. My O2 is 97 or up.

The only thing I found that remotely helps was in the beginning it would get so bad and I was afraid I would end up in the ER again, I noticed I would have heartburn (the acid in the back of your throat feeling) so I would chew a rolaid with gas relief. The only thing I can figure is the magnesium in it would help. I haven't had to use that trick in almost 2 years now. Very thankful. I just meditate now when it bothers me. I am learning to live with it. 

I have very bad acid reflux and I started thinking today that maybe that’s what makes you feel out of breath? I just started a new med for reflux today so time will tell if it helps me. I’ll keep you all updated. 

[StayAtHomeMom]

18 minutes ago, Anamaria said:

I have very bad acid reflux and I started thinking today that maybe that’s what makes you feel out of breath? I just started a new med for reflux today so time will tell if it helps me. I’ll keep you all updated. 

That's what I thought my issue was so they had me take prilosec and Zantac. The theory was if it was that bad it was affecting my breathing it wouldn't be controlled with just the PPI.

I had a bad reaction to the prilosec and felt like I was having a heart attack for 3 days (til I stopped it). That is when I decided no meds til they proved it with a test first. I had the upper GI scope and I had no acid reflux. No ulcers. No damage. No h. Pylori. They found a small stricture in my esophagus that they opened up a bit. 

Still not sure why heart burn is a POTS symptom for me but it is there. It doesn't seem to matter what I eat. I am hoping when I start the keto diet it will help the heart burn because I won't have anything heavy in my stomach that sits there. 

I hope you find what ever is affecting your breathing. 

[LauriePrice]

Hi!  We have Ehlers-Danlos and POTS just goes with the territory. For most of my adult life I would “forget” to breathe, but this year it sets me up for almost passing out. I’m 50 so it might be hormone related??  I feel off for awhile after. 

[angelloz]

I used to do this all the time at the beginning. Not certain was causes it but would be doing the dishes and realize I was sort of holding my breath and not breathing. I had to remind myself.