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mama_destiny

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

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I know that I have read about people having breathing problems with POTS, I am just wondering what kind of breathing problems? Is it normal to feel like one has completely forgot how to breathe? Is it possible to stop breathing with POTS/due to POTS?

I keep feeling like I cannot remember how to breathe and have to manually inhale and exhale, which gets me all messed up because I either breathe too fast or too slow. My lungs feel like they don't know how to expand enough to get the air that I do inhale. It's such a strange, scary sensation. It's much worse when I am lying down, and I notice my hr drops to high 40's, low 50's, and my bp the other night when I checked while this was happening, was 93/55.

Is this a normal POTS thing? It has gotten worse over the past couple of weeks. I have felt like I should probably go to the ER, but then again, they would probably say it's anxiety and send me home with an outrageous bill!

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It's frustrating how distressing POTS symptoms can be.

I know I have had that sensation before. Are you under the care of a specialist? I always find it useful to start with a call to my specialist with new symptoms before going to the ER. If no specialist, I would still try calling/seeing a doctor. Peace of mind is so important. Feeling anxious about disturbing symptoms can cause a negative feedback that you don't need either.

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You have described to a t how I have felt so many times. I used to worry that I would stop breathing but it's happened so many times I realize it is just part of the Dysautonomia. Shortness of breath is my scariest symptom.

I wish I could tell you about some technique I've found that works but I have not found one. I have noticed the more symptomatic I am, the more likely I am to have that "I've forgotten how to breath" sensation.

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This has happened to me before... sometimes it just feels like my lungs are tired from the effort of breathing. It's definitely scary and uncomfortable! I also have asthma and have sometimes wondered if it's a combination of the asthma and Pots. I've noticed I've been more short of breath and feeling like this is the last few weeks, for me I bet it has a lot to do with the heat and humidity. In general my symptoms have been worse the since it's been really hot.

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The advantage to going to the er when this is happening is that they can runs tests that may identify

why this is happening. Some labs are only valid if taken while symptoms are there.

I did this once when I had a two hour seizure / severe myoclonus episde. The medics kept telling me not to breath like that because

it would cause me to hyperventilate. I was on an oxygen mask at the time.

I have no idea if this is related to what you're doing. But .. Have you tried taking an anti seizure med

to see if it helps ? I take klonopin for my seizures / myoclonus. With your low hr low, I'd only try this with a doctor present.

I haven't done this again but I also gave up ALL caffeine and ANY food that was probably cross

contaminated with gluten. Both cause neuro symptoms for me.

Tc .. D

Eta. My daily breathing problems are from hypoperfusion (lack of blood in upper body when upright). Dr peckerman explains this.

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I get this sensation also

I know that no one wants to pins this on psychology, and I'm not trying too. But, these are the same catacholamines involved in anxiety, panic attacks etc.. So in my mind it makes a lot of sense. An inappropriate release of catacholamines (for whatever reason, like standing or just pots) causes panic attack-like symptoms or episodes.

For me, I get these unprovoked "episodes" of feeling like I'm being smothered, my chest feels tight, I have to force myself to breathe. I was in the ER on day having these symptoms and I was having 2-3 respirations a minute. My body just felt like it didn't want to breathe or like I was breathing in water. I can now think through these episodes which are becoming fewer and farther between. They generally come and go like in episodes. Being on Celexa has really helped tremendously with these episodes and overall pots symptoms

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I know that I have read about people having breathing problems with POTS, I am just wondering what kind of breathing problems? Is it normal to feel like one has completely forgot how to breathe? Is it possible to stop breathing with POTS/due to POTS?

I keep feeling like I cannot remember how to breathe and have to manually inhale and exhale, which gets me all messed up because I either breathe too fast or too slow. My lungs feel like they don't know how to expand enough to get the air that I do inhale. It's such a strange, scary sensation. It's much worse when I am lying down, and I notice my hr drops to high 40's, low 50's, and my bp the other night when I checked while this was happening, was 93/55.

Is this a normal POTS thing? It has gotten worse over the past couple of weeks. I have felt like I should probably go to the ER, but then again, they would probably say it's anxiety and send me home with an outrageous bill!

mama_destiny,

I noticed it's been a few weeks since you've posted this- has this levelled out for you?

I have definitely felt what you are describing - it was at it's worst during the first three months I was sick. I think it has gotten better partly because of the increase of salt and water and partly because I learned that I cannot lay on my back at all (even if I'm elevated with pillows. I have to sleep only on my right side (don't know why that works for me??). Whenever I end up on my back sleeping, I end up waking with a choke; or when I was in hospital my monitor beeps would wake me. My hr goes into the 40's as well and my resting rate is typically 50's. My EP is checking for Central Sleep Apnea, which would be consistent with other symptoms as well and this can go along with dysautonomia. Early on in my illness, I actually asked my husband to stay with my a few times while I went to sleep because it simply felt like my body would just shut down (like it was just 'too tired' to function). Have you had issues while sleeping?

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Somehow I missed this topic. This was one of the first symptoms I had prior to POTS diagnosis. I told my doc that I would periodically realize that I needed to take a breath, like my body had forgotten to do it automatically. They kept trying to tie it to sleep apnea but it was during the DAY. I did not have sleep apnea, but I would also wake up needing to breath...similar I guess, but I did not have obstructed breathing...just stopped. Very scarey.

Finally with POTS diagnosis, one doc said it probably was POTS related as breathing is part of the automatic nervous system and just about everything it does was wacky in me at the time.

This finally went away about the same time as my increased blood pressure symptom (a couple of months from diagnosis, about 4 months in total)

For me, lots of good things happened when I started eating more frequent/smaller meals, and cut out sugar and flour(moderately low carb diet).

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I definitely get this occasionally. For me, it seems to be completely anxiety related. Of course that anxiety may be tied to my physical issues, but when I get anxious my breathing becomes a conscious effort. Lexapro has reduced this problem by about 90%.

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Dr Stewart says 50% of us have Hyperpnea, it's a form of hyperventilation that isn't rapid it's deep breathing and it cause co2 levels to drop. So I've done some research on Hyperpnea. Hyperventilation syndrome is similar and the way they treat is with breathing exercise 2-3x a day for 10-15min a day. It helps to retrain the ans to breath properly. I also found a study that of meds that may treat it http://www.jci.org/articles/view/116569. The only problem is they are only in clinical trials currently, but they also seem to point to some meds like zyflow that may help... Might be indirectly similiar to a mast cell issue, not straight up MCAD..

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I get the sensation that I can't take a deep enough breath. If I take Mididrone, that sensation goes away.. Also, I find myself holding my breath and not even knowing it. When they do my blood work, my CO2 is always very high.

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Mcblonde my co2 is usually normal too but and they even monitored it when I was having breathing issues.. Hmmm. But Dr. Stewart has observed it, so maybe it's happening in or blood rather than or breath.. Did they do a blood/gas atrial test? It hurts so they usually dont, like to puncture an artery.. But that the only true way to find out. They do that for COPD patients because they get co2 trapped in their lungs and it doesn't show up on end tidal breath tests...

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No, it wasn't a blood gas ouch! I'll have to look up the range, but it was something like the high range was 40 and my lab result was 55.

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I was told once that my diagnosis was hyperventilation syndrome. This was after he listened with a stethescope while I breathed deeply for what felt like 10 min straight (i feel like anyone would be dizzy after that, yes?) but when I told him that I felt dizzy, he proceeded to tell me that my diagnosis was in fact, hyperventilation syndrome, I have a hard time standing up for myself, so, in the moment, i was like "are you sure?" and all nice about it, however, when i left I was all "***, this guy is crazy, yada yada yada"

I say this to say, although I do not believe I go around hyperventilating, I do know I have what you describe. I feel like I forget to breathe! Sometimes I will all of sudden realize that i was holding my breathe and start gasping for air and then I become conscious of the actual breathing and it feels like i have to say it to do or it won't happen, such as "breathe in, breathe out, breathe in, breathe out". Not sure what to say or do about this all, I just wanted to share my experience and let you know that I understand.

Does anyone practice breathing exercises or know of a good link to some?! Thanks

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So I will give my 2 cents on breathing issues and dysautonomia. I am an endurance athlete, training and racing for the past 20 yrs. I have no health issues. My 1st symptom was shortness of breathe/ dyspnea. It started abruptly, in the 1st 5 min of a 7 day mountain bike race in the Canadian Rockies.....August 7 th of last year. The first several months all I had was a disproportionate amount of breathing for the amount of exercise I was doing. This progressed into SOB with very little movement: bending over, sweeping floor, carrying groceries, washing my hair, at work. I remember being SOB while laying down for one of my ECHO's ! In the first few months of my illness I had every Pulmunary and Cardiology test there is: PFT's, EKG's, ECHO's, stress tests, right heart cath, left heart cath, cardio exercise stress tests, hematology tests, etc, etc. I saw an Exercise Physiologist after a few months who determined I had lost 50% of my stroke volume....a cause of the SOB?

My symptoms progressed from SOB/dyspnea into extreme fatigue, intermittent chest pain, lightheadedness, orthostatic hypotension and tachycardia, nausea, bloating after meals, wt loss, wt gain. My one consistent symptom...SOB. I would get SOB rolling over in bed or lying on my left side, brushing my teeth, getting in or out of the truck. I went from an elite level, competitive athlete, to couch ridden. I was finally hospitalized in June for a week, after many more tests, my Tilt Table Test was really positive. Breathing issues continue to be one of my main symptoms of dysautonomia. I have yet to hear a story like mine, and I have been reading all over this site for the past 2 months! Anybody have a similar experience?

FYI- I have been on Florinef, Midodrine, fluids and salt since my discharge from hospital. I can at least get off the couch now and do some household chores. I try and walk 30 min 3/ wk, but don't make it due to fatigue. I have not been able to work (I am an ICU nurse) since Jan. I have apt at Mayo, AZ in 3 weeks for further work up.

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I have the same breathing issue, it happens sometimes when just sitting and also happens when I go to the grocery store, I end up being in there a couple of hours with a list feeling like I've only been in there for a short time just to realize its been hours. I think its something our doctors have not figured out yet.

Loulou

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Yes. I think healthy people have to remind themselves how to breathe in stressful situations. POTS can put our bodies in a state of stress (fight or flight). I do yoga and breathing exercises to help with this.

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I have the same problem. I've tried SSRIs to no avail. My neuro says it's an autonomic issue, and I take clonazapam (1/2 of a 25mg tab). It remediates the problem in about 20 minutes. Until then, I have to remember to continue breathing in, breathing out. I find that sitting in a recliner with my feet up and head at about 45 degrees helps a whole lot. I'm so sorry that you have to experience this very frightening and restricting symptom. Mine usually comes on in the middle of the night, and I have found no rhyme or reason for it.

I simply wake up, and not being very cogent due to lack of oxygen and slow pulse, after a few minutes, I finally figure out I'm not breathing and I'm very cold! Then I drink about 12 oz water and take the 1/2 pill, change the position of my motion bed (used to be recliner), cover up with more comforters, and wait it out. Within 20 minutes, I'm usually stable...and sleeping once again. It's sort of like a middle-of-the-night commercial break, sponsored by Autonomic Interrupters, Inc. They sponsor other commercials, too. Just read the posts.

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I simply wake up, and not being very cogent due to lack of oxygen and slow pulse, after a few minutes, I finally figure out I'm not breathing and I'm very cold! Then I drink about 12 oz water and take the 1/2 pill, change the position of my motion bed (used to be recliner), cover up with more comforters, and wait it out. Within 20 minutes, I'm usually stable...and sleeping once again. It's sort of like a middle-of-the-night commercial break, sponsored by Autonomic Interrupters, Inc. They sponsor other commercials, too. Just read the posts.

LOL :lol: I hate those dang commercials...

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Interesting! I could go on and on about my own strange breathing issues, and shortness of breath (loosely defined) is one symptom that has stayed with me even in the best of times.

Looks like they are investigating this at New York Medical College-- there is a study in progress by Dr Taneja and Dr Stewart. Might be worth to look into!

Carolyn A.

Tucson

Edited by corina

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I have had this before, it is not a long lasting symptom but rather I'll be doing something and I will suddenly realize or believe that I havn't been breathing and have to gasp for a breath. I had this long before diagnosed with POTS, It happened to me for about a month or so back in 2004ish and went away. Then it came back this year. It is random and occasional so not one of my biggest complaints right now but like most of the weird symptoms we experiance every day it is scary.

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I do this too. When my gastroparesis is in a bad flare, I feel as if i am gonna stop breathing. I also have a very tough time talking...I will have a very tough time breathing if I talk for more than a few minutes.This is new and is getting worse. Scary , I agree.

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