Is It Normal To Completely Forget How To Breathe With Pots?

[LindaJoy]

I get this, and you all described it to a tee. My husband, who was just diagnosed with OH, does this, too. We both describe it as having to concentrate to breathe, to think about breathing deeply because it feels like we can't, and it feels like, if we don't think about it, we will just stop breathing all together. I hate it. It's scary.

When I get too bad with this symptom, I get out my pulse ox and my peak flow meter (for asthma). If I look okay on both of those, I satisfy myself that I'm actually breathing okay, it's just a feeling that goes with POTS. Now, that doesn't mean that I am no longer anxious! I truly am not comfortable again until I am breathing normally and without having to think about it again.

Take care.

[troythe8th]

This is also one of my most worriesome symptoms as well. Its not that i forget how to breath but more that its no longer an autonomic function but more voluntary. I rarely have a shallow normal breaath its always deep struggling breaths.

[peregrine]

Have had worsening SOB in the last few months, even with dropping the dose of propranolol. I mentioned it to my PCP today (in for a different issue, though asking for a refill for my albuterol) and she was shocked that I was put on it in the first place. She's switching me back to atenolol, so I'll need to call the neurologist (a pain as he's hard to get a hold of). Ugh. I'm pretty sure this is behind me almost passing out at PT yesterday too...

(edited to add - my peak flow was 450, which is pretty good; the issue is breathing out slowly is tricky, so I can't get a full breath, etc - I can force out air, just not breathe normally.)

[spinner]

Makes good sense to me because your central nervous system and autonomic NS are in a sense short circuited and not operating according to design. It could also ???be the sensation of altered bronchial dilation which gives you the feeling

that youre doing it differently than you've been doing all your life.

I describe my breathing problems as "struggling to breathe" rather than being short of 02, since oximetry shows im

up above 97 percent usually.

The physicians who dont know POTS always "gloat" when they see this. "SEE? Youre ANXIOUS". Anxiety is the hole-card of an ignorant physician all too often.

Ive found klonapin very helpful with this issue alongside hydration.

[AllAboutPeace]

I describe my breathing problems as "struggling to breathe" rather than being short of 02, since oximetry shows im

up above 97 percent usually.

The physicians who dont know POTS always "gloat" when they see this. "SEE? Youre ANXIOUS". Anxiety is the hole-card of an ignorant physician all too often.

Your comments reminded me of a video that I watched last month. I was watching some on-line excerpts from various autonomic conferences and some on ME/CFS (because of the overlap in symptoms with Pots patients). In one of Dr Cheney's video's he mentioned that he had some ME/CFS patients that actually held their breath (one of them for as long as one minute) and this showed no de-sat at all on their finger pulse - ox, suggesting that pulse-ox readings may not be accurate for some of us. I would have to find it again to listen to his explanation of "why" that happens, but what I have in my notes is he said there is "no cellular saturation" (perhaps related to poor peripheral circulation ??). I thought that was really interesting given that many of us experience those breathing issues, but it doesn't always translate to the pulse-ox reading.

[Kor1212]

That's the thing, you don't desat per the pulse ox because it reads the amount of O2 that is bound to the hemoglobin. Every hemoglobin cell is adequately saturated there just arent enough of them perfused due to low BP, vasodilitation or constriction, etc. So our bodies want more O2 even though pule Ox reads 99%.

[RichGotsPots]

I'll say it a little more in easier terms. PulseOx check our blood oxygen level at our fingers and if we pool and the blood goes to our hands and feet the Oxygen level with be okay. But even on a breathing end tidal oxygen measurement we are okay.

People with pulmonary hypertension actually have low levels of oxygen even though they have this pressure build up of blood in their lungs. So if we have the opposite, and have low pressure then our oxygen will be fine..

[Kay107]

This happens to me also. It usually happens when I am trying to go to sleep and I HATE it. I can't stay still and I can't fall asleep. It also happens if I think about it...like right now because I am reading this thread . It feels like I get off rhythm and I can't get it back no matter what I try. Glad to know it's not just me.

[1210donna]

I have had low level dysautonomia all my life, including this breathing issue... during chemo I was formally dx'd with dysautonomia and following chemo the breathing issue got dx'd as Central Apnea (with Central apneas, hyponeas, bradypnea episodes)... it was happening at night and during the day, so I'm on CPAP at night... finally cracked the daytime centrals using salt 6g, calcium, magnesium, glutamine, taurine, citrulline plus low salicylate as salicylate levels sent my centrals soaring... really tough one to crack... anyone having daytime breathing dysreg I'd strongly suggest they get to a sleep clinic as its highly likely its happening during sleep too... and that can make ill health much more progressive and precarious... central apnea in sleep can risk heart attack, stroke and increases cancer mortality risk not to mention that hypoxia damages every cell in the body and brain dysfunction.

I've had the breathing stuff since age 2 (had measles and mumps then which may have set it off) but it got worse a few years ago, then unmanageable after chemo. I seriously think my cancer was faster and worse because of untreated central apnea as part of my dysautonomia.

Donna

[Foggy01]

Hey guys. I really need your help. What you seem to be describing here just struck me a few days ago and has been with me since. I'd been getting worse with weakness and fatigue and such for a few months now and then suddenly this happened to me.

It is almost like the impulse to breath that one would usually feel is gone. I get no sensation when I breath in or out like I used to. There is no pleasure or drive or sensation there to tell me to breathe. So when I am consciously focused on my breathing its almost like I could "forget" to breathe. Is this what you guys experienced?

I have gotten this a few times before (I think) but nothing for this long and I never felt this weak and sick before. I feel very ill and this sensation (or lack of one) is proving very very disturbing when I try to get to sleep. I keep waking up after a few seconds of dreaming with a smothering/suffocating feeling. In the day I can try and distract myself from it a lot. The evenings I can't very well and then at night it is impossible to ignore and I get very little sleep. The few times I've gotten sleep the last few days were when I fell asleep due to exhaustion. I can't sleep normally anymore.

Guys is there anything I can do? How long did it last for you guys? Was it only when you were feeling very symptomatic (like when standing) or did you ever get it all the time?

Please if you could answer I'd really really appreciate it. Thanks.

[cmreber]

This is actually a fairly new symptom for me. It's so strange too, because everything else seems to be going pretty well. I seem to be on the right dosage (beta blocker) and a high salt intake and moderate excersize is helping so much with most of my symptoms. But then, a couple months ago, this happened to me out of nowhere on the way back from a trip, and then again a few weeks later I had a very scary episode at night. Ever since then, it's been happening on and off, usually at night, but sometimes out of nowhere in the middle of the day. In fact, the other day my husband was driving and we just fine, talking and listening to the radio, and then suddenly, I began feeling like the breaths I was taking weren't giving me enough oxygen. The epidode didn't last very long...maybe ten minutes? I'm not sure if there is anything to do to help this. Usually, it sends me into panic mode, but then, once my heart rate shoots up like crazy and I feel like I just got an adrenaline rush, it starts to feel like the oxygen is getting to where it needs to be again. If it happens at night, I do find it almost impossible to get to sleep, because I have this crazy feeling that if I go to sleep my breathing will stop altogether because I'm not manually doing it/thinking about it. Especially because I have read that so many people on here experience this, it must be a part of the autonomic disorder. I would love to find something to make it stop happening though!

[Foggy01]

This is actually a fairly new symptom for me. It's so strange too, because everything else seems to be going pretty well. I seem to be on the right dosage (beta blocker) and a high salt intake and moderate excersize is helping so much with most of my symptoms. But then, a couple months ago, this happened to me out of nowhere on the way back from a trip, and then again a few weeks later I had a very scary episode at night. Ever since then, it's been happening on and off, usually at night, but sometimes out of nowhere in the middle of the day. In fact, the other day my husband was driving and we just fine, talking and listening to the radio, and then suddenly, I began feeling like the breaths I was taking weren't giving me enough oxygen. The epidode didn't last very long...maybe ten minutes? I'm not sure if there is anything to do to help this. Usually, it sends me into panic mode, but then, once my heart rate shoots up like crazy and I feel like I just got an adrenaline rush, it starts to feel like the oxygen is getting to where it needs to be again. If it happens at night, I do find it almost impossible to get to sleep, because I have this crazy feeling that if I go to sleep my breathing will stop altogether because I'm not manually doing it/thinking about it. Especially because I have read that so many people on here experience this, it must be a part of the autonomic disorder. I would love to find something to make it stop happening though!

Yeah it's a horrible feeling. I've been having it for the last few days constantly now. Hope it goes away soon.

[cmreber]

Seriously, Foggy01! I never thought I'd say this, but I think that I prefer the dizziness, being tachy, and even the pre-syncope "fade out" to the breathing thing. I guess just because it's so scary. I mean, feeling like you're going to pass out is one thing...being afraid to sleep is awful! I would love to figure out what causes this for all of us, and how to make it better. Wishing you a good and restful night!!!

[Foggy01]

Thanks. I sometimes get a few hours where ill feel like im going to pass out the whole time. Not sure which of these is worse. Very hard to choose. God what a life.

[RichGotsPots]

I've lived with this pots breathing torture for over year now, so far nothing helps..

[little_blue_jay]

Oh wow sorry to bring up an old thread but all the replies on here describe exactly what I have been feeling like today! I've had episodes of this before, about a couple of days at a time. I hate this feeling when I'm afraid to fall asleep, I am scared I'm going to stop breathing & die.

Most of the time I have a shortness of breath and am gasping for air or hyperventilating. This is the opposite, I feel like I'm underbreathing! I'm so scared!

I fear sleep sometimes, I don't wanna fear sleep! Sleep is my friend!

Has anyone found something that helps with this!

[kellygirl]

I get the same thing. I have been using deep breathing techniques. It is very unsettling. Sometimes I call someone and talk to them on the phone because as long as I am talking I know I am moving air in and out of my lungs and it decreases my anxiety to talk to someone.

[sb4]

So has anyone found anything that helps?