Manual Breathing

[lschwartz408]

I am absolutely terrified. If there is anyone on here that can help me, it would mean so much. I have no support & I am all alone. The hospital even told me that I have mental illness & I should find a psychiatric facility ASAP. 
I have a new symptom that I have not experienced before and it is the scariest thing I have ever seen. I feel like I lose my ability to breathe automatically. The natural rhythmic breathing stops- like there is a disconnection between the brain & the body. This is NOT the “forgetting to breathe” or “gasping for air”. It is a feeling that my brain gives me telling me to manually breathe for myself. It is like the breathing goes off autopilot. When I get these attacks, I start to panic and I can’t get my breathing back to automatic. Some days, I have it constant 24/7. 
I have tried everything such as breathing exercises, and I have had multiple scans & tests done on my heart & lungs. Every cardiologist & neurologist says that they are OK. 
What IS this? What is causing me to feel like I am not breathing but yet my oxygen levels are fine on the finger machine.

Thank you to anyone who can provide me with some information on this as I am completely terrified & I don’t know what else to do. I have gone to the ER so many times & they send me home. I am afraid that I need a ventilator to breathe for me since I don’t feel like I am doing it automatically. It is all that I can think about, and I can’t get a break from it, I am so exhausted. 

[Jyoti]

That sounds terrible and terribly stressful and draining!  The reassuring thing I take from your post is that your oxygen levels are fine on the pulse/ox.  So you can know that although you are feeling like your body isn't breathing, it HAS to be in order for the oxygen levels to be ok.  It also sounds like something happens to you that happens to most of us--you sense something wrong (and this is an hourly if not more occurrence in my life!) and then you react to it.  With fear, naturally.  And fear tends to constrict everything.  Which means that breathing gets harder, pain gets worse, blood flow stops, etc.  Fear can truly (and physically)  exacerbate any real physical symptom.  

I want to say that I have had a taste of what you are talking about.  I do have that experience from time to time --where I have to think about breathing.  I am not sure what would happen if I just decided not to---would the ANS take over and do it for me as it is supposed to?---but of course we can't really decide not to breathe.  We just do it.  Anyway--I am not sure if my situation has any relation to yours, but I think I know what you are talking about and it is definitely NOT something that ever happened to me prior to POTS.  It kind of makes sense that autonomic dysfunction could lead to that.

So....a couple of thoughts.  One is that you need strategies  that help you stay calm even while this scary thing is going on.  And perhaps that is where a therapist or someone in that field might help.  Because that is likely the part you have some control over.  And then I wonder--what kind of specialist do you have?  How curious are they?  I would think a dysautonomia specialist would be curious and interested in getting to the bottom of this.  Since the cardiologist and neurologist have presumably looked into it and found no organic issues, that should put this right in the lap of a dysautonomia specialist.   Finally, you didn't mention your diagnoses.   I do not know enough about some of the rarer dysautonomias to have any idea if this might be linked to them.

Do your best to stay calm and yes, breathe.  Even when your body is not doing it for you.  

[MaineDoug]

I am so sorry that this is happening to you! Many of us can validate your experience. We have been through and live with difficult situations too. While I haven’t had the breathing symptoms you describe, I do suffer daily with many alarming symptoms; before my diagnosis and treatment my BP and HR would soar to eye watering levels with any activity or movement, leaving me couch bound for 16 months. I know the fear you describe.
 

Hang in there! You’ve found a great group of folks. I agree that the description sounds Autonomic. 
 

You mention tests. Have you had long duration tests, like a holter monitor, or an overnight oxygen sensor? If no, these could help. Short term tests (EKG, CAT, MRI, etc.) are fine but they are only a snapshot in time. If a condition varies, as many do, they may miss the signs. I insisted on both a Holter and Overnight O2, AND both were very abnormal (pulse ranged from 185-30 with “over 200 arythmias”, and O2 desaturated overnight 50 times, with a low of 80%). Worth a try if you haven’t already had such tests. 
 

Of more immediate assistance, I agree with everything @Jyoti said. I’d add a suggestion to try breathing exercises, such as box breathing, or other variations. This gives me a feeling of control and faith over my breathing. There are many resources available, my favorite is the “Insight Timer” app. Don’t be fooled by the name. It’s a huge community of people Worldwide, sharing mindfulness techniques and breathing exercises! It’s my “go to” and it’s changed my life. Free version available on app stores, icon is a simple wooden bowl. 

Hope this helps! Keep reaching out to us! GREAT FOLKS HERE! We care, we understand, and we’re here for you, 24/7/365! 💜🕉️☯️🌈🙏

[MaineDoug]

Another quick thought. Have your CO2 levels been checked? Our autonomic breathing is controlled by sensors for CO2 levels in the blood. A problem here could result in the symptoms you describe. 

[Pineapple]

I won't be medically helpful here, but I want you to know you are not alone, and you are not crazy. I have experienced a very small bit of the feeling you describe in my dysautonomia journey of the last 8 years- where suddenly I'm just not breathing, as if my body just forgot, and I have to purposefully draw breath. For me this ususally doesn't last more than a few seconds, and it has not been nearly as extreme as what you describe. It must be terrifying.

I am so sorry you are going through this. Just know, you are NOT alone. 💗

[lschwartz408]

All I can say is THANK YOU to all who have replied and supported my experience. I have gone to the hospital multiple times, and have seen so many doctors, had every test I can imagine, and even begged to stay inpatient to be observed. The tests have come back clean- and I have had holter monitors and even an overnight sleep study performed. I do have “mild sleep apnea” but this isn’t the gasping for air type of thing (although I do have that too). This feeling is best described as my brain is not getting the message that I am breathing. So it therefore makes me breathe “manually”. It is a terrifying feeling but I have measured my oxygen with the pulse ox on when it has happened and it doesn’t drop. I am scared that I have brainstem damage as this has all occurred from covid. 

If anyone has experienced this before, please feel free to send me a direct message. I would love to talk to someone about it. And yes, I do see a therapist on a weekly basis, and they think what I am experiencing is horrible and they don’t know what it could be caused by. But he does listen to me and even records my breathing for me while sitting there with him, to see and show me if I am breathing. 
 

Thank you again for the help and friendship! ❤️

[BuddyLove]

The last time I went to the ER, I had a panic attack while I was sleeping!!! I was used to the panic attacks, but  I was on Ambien, so this one was different, and scared the beegeebers out of me. They kept me lying alone in a room for an hour. I'm not sure, but it seemed like they were sending me a message "Don't come here unless it's an Emergency!!!

I'm all alone now, also, I turned 70 last year and everything is falling apart. 

Yoga is 95% Breathing, you not only learn to increase the amount of oxygen you inhale, you expel more stale air so you can get fresh replacement healing oxygen in your bloodstream. You have to intentionally override your autonomic nervous system, I know that doesn't help you right now, but I spend a whole lot of time worrying about my self, all day long, and it might help that. 

When I try to get some diet and exercise in, it upsets the frozen place I've found as a refuge from a World and Future that's out to get me. I'm afraid when the next shoe drops, I'll have to leave my House and Home. The advice from most people is a version of "try not to worry about it"...  I was originally diagnosed with severe Depression before my tilt table test, I'll bet a hundred people told me a sure fire cure, every one was different, we really are alone in this life, hunh?

I'm going to have to find a way to bring people back into my life, my Mom and Brother recently died, and I wouldn't want to drop all my problems on some strangers who would never understand anyway. My Anxiety has grown so much I'm afraid to drive sometimes. The Walls are closing in. I used to be the one who stood strong while everybody else was falling apart, practice, I guess. 

If I could hand my Life over to someone who knew what was going on, I would in a Heartbeat.

 

[Amyschi]

Buddylove, so sorry you are feeling so alone.  I am also an older folk, 65 almost.  I was wondering if you would mind sharing what you experienced during the panic attack while asleep.  I had an experience upon waking up this morning that was truly frightening, and just trying to find someone with a similar experience.  I have been routinely awakening with feelings o internal trembling and  feelings of anxiety every night like closework between 4 and 6 am, but this morning awoke to a severe case where I truly felt like I was going to die, tried to get up; but had extreme weakness, tachycardia.  It is hard to discern what are usual dysautonomia symptoms and what is new- onset panic attack. 

To lschwartz, so sorry you are going through this.  I have had dysautonomia symptoms for many years and can testify that any strange symptom can happen for sure, but this must be terrifying.  I notice also lately that my breathing just feels off and harder - not shortness of breath per se, but just off.   One thing I have noticed, and wondered if anyone else has, is that I can no longer drink, through a straw.  After a few swallows, it feels like I can't breathe, have to stop and take deep breaths.  This also is scary because it is a new finding and there is no explanation.  In trying to find an answer, I did read that breathing patterns are altered with dysautonomia, so you are likely correct in questioning whether it is a dysautonomia thing.  Wishing you answers.

.

[BuddyLove]

Amyschi,

When I used to take care of my Mom, by the time she was 90 years old, I knew I wasn't qualified to take care of her properly, just a thought in the back of my mind, anyway, I woke up one morning and couldn't breathe!!! I went to the ER, and got a prescription for klonopin, and if things get real bad, a half of one calms me down.  Just having it nearby helps. I can no longer drive the car longer than 15 minutes. I believe it's anxiety on top of getting old, and a genuine uncertain future. I've been to psychologists, no help. I'm sure I'd be better watching what I eat and exercising, but it's not a cure, it just helps. If things get really rough, a good Steak and Cheese can usually set things right,