Autonomic Lab Testing For Breathing Issues

[RichGotsPots]

Has anyone been tested for breathing complaints at one of the big autonomic labs (ie.. Mayo, Vandy, Dr. Grubb, or Cleveland Clinic)?

If so what type of breathing tests did they run? And did they diagnose anything for breathing issues and/or prescribe any medicine or treatment?

Rich

[forevertired]

I did pulmonary function tests to check for Asthma and other breathing issues. I did not have them done at an autonomic lab. These tests were done by a pulmoanry doctor, before I learned I had POTS. It was determined I did not have Asthma. My POTS doctor says that my breathing issues are most likely related to my POTS.

[Chaos]

Same here. Pulmonary function tests done locally by a pulmonologist. Although I told the docs at the big centers (CC and Mayo) about the breathing issues (and they saw them with the TTTs) they said they were related to the POTS and didn't recommend any further pulmonary studies. In fact the local pulm. guy's comment was "I wish I had lungs that looked and tested as good as yours." So I don't think I have a lung problem, it's the "control system" for those lungs that's the malfunctioning part in my case.

[bellgirl]

You already know this Rich. I was diagnosed with Asthma in 1986, after pulmonary and allergy testing by an allergist, then had desensitization shots...was on 5 medications for asthma for 6 months and weaned myself off. Now I use albuterol inhaler when I am sick with a respiratory issue. This is totally unrelated to the dysautonomia, although it can exacerbate it. Shortness of breath is different in each case...don't like it either way...exercise helps me, even though I don't like to do it, singing helps me, too, and I love to sing...increases tidal volume, but I think I get blood pooling in my lungs, too, which can be a bit of a problem. My O2 concentration last tested was good, though, so I'm OK. You also know I'm on a Cpap for my sleep apnea. Hope your breathing problems get better!! And that you will find a doctor to do pulmonary function tests for you, too...

[rubytuesday]

I had asthma since childhood. I have had several pulmonary (with loop) function studies ordered by both my PCP (done at local hospital), ABGs (done in ER), CT lung scan (for nodule on CXR that was scarring from pneumonia) at hospital outpatient radiology (ordered by pulmonologist). CXR also shows COPD and since 2007, pulmonary function studies (with loop) show Vocal Cord Dysfunction (upper airway obstruction) as well (immunologist/pulm./allergist found this). I use rescue inhaler (PCP IM/allergist first to Rx). If I get bouts with bronchitis, they add Pulmacort. I take Singulair (PCP IM) at bedtime. When the vocal cord dysfunction is triggered, I have to use voice rest and breathing exercises and rescue breathing taught by specialized speech therapist (under supervision/orders or university otolaryngologist who scoped me to confirm after pulmonary function test by immunologist at same university showed the VCD). I have also had two sleep studies (day and night) looking for sleep apnea or restless legs. I did have some complex sleep apneas with puOx drop to 84% but not enough to warrent C Pap. One of those studies was ordered by my rheumatologist and the second was ordered by my neurologist (both were performed in independent sleep laboratories).

[RichGotsPots]

I really don't think the clinics are taking this problem seriously enough if there is no specialized tests that people here can point to besides their local Pulmonary function testing...

I've talked to many people with POTS and breathing issues who attribute their issues to POTS.

The only POTS research I've found that mentions breathing is Dr. Stewart's study on Postural (tiltiing) Hyperpnea/Hypocapnia (deep breathing/low end tidal CO2 levels), but unfortunately his research focuses on the fainting aspect of these patients and not breathing difficulties.

So I was really hoping there are centers out there who people had experience with that could explain or at least was studying POTS related breathing issues. Since idiopathic breathing problems are quit dangerous...

[issie]

Rich, I did pulmonary testing at Mayo two different times. It's really just the traditional sort of pulmonary function test. Nothing out of the ordinary. The only thing recommended to me was because of having sleep apenea - using the CPAP and also, because I had found that Albuterol helped me - to use it when necessary. I also have to use oxygen with my CPAP if I'm at altitude and sometimes during the day if my shortness of breath is extremely bad. I have an oxygen concentrator. I have periods of low O2 saturation. But, no discovered reason for it. Not any connection to POTS was made or even suggested. Wish, I had more input or answers for you. I know how miserable you must be and I'm hoping you will be able to find some answers and VERY, VERY soon. I do know that when my breathing is especially bad, I'm usually having some mast cell activation problems - either allergies to something or just an out of the blue over histamine reaction.

Have you had your noriepi levels checked? When you get the surges from that it definitly affects your breathing too. It causes you to breathe abnormally and causes a bit of a panic can't catch your breath feeling. It's a horrible feeling. I wonder if this is some of your issues. Those of us with the high NE levels feel this throughout the day and night. Mine varies in intensity - but, it's daily and more than once a day, for me - I'd guess that I have these type surges at least 10 times a day. It is very tiring and wears on you emotionally and physically.