Why Can't I Breathe?

[chimeraskeep]

Hi, I was diagnosed a few years ago with dysautonomia and small fiber neuropathy.  I told my neurologist I often get shortness of breath which can be partially sated by my lying down or taking kratom (an herbal powder with opiate-like effects).  He told me that shortness of breath is a common complaint amongst his dysautonomia patients, but did not explain why, and said to continue taking the kratom if it is helpful.

I told my PCP about it.  He knows about my dysautonomia, but still commented that the shortness of breath could just be anxiety.  (It seems many doctors are unimpressed by a diagnosis of dysautonomia.)  Nonetheless, he gave me a lung function test, and it came back normal.

Does anyone else get this shortness of breath often?  Does anyone know why it occurs? 

[MikeO]

11 minutes ago, chimeraskeep said:

Hi, I was diagnosed a few years ago with dysautonomia and small fiber neuropathy.  I told my neurologist I often get shortness of breath which can be partially sated by my lying down or taking kratom (an herbal powder with opiate-like effects).  He told me that shortness of breath is a common complaint amongst his dysautonomia patients, but did not explain why, and said to continue taking the kratom if it is helpful.

I told my PCP about it.  He knows about my dysautonomia, but still commented that the shortness of breath could just be anxiety.  (It seems many doctors are unimpressed by a diagnosis of dysautonomia.)  Nonetheless, he gave me a lung function test, and it came back normal.

Does anyone else get this shortness of breath often?  Does anyone know why it occurs? 

so does this happen upon standing?

[Sarah Tee]

I don’t have this symptom, but I was looking at something else on the Cleveland Clinic website and noticed this article. Maybe you have already read similar ones, or even this one, but here’s a link just in case it’s helpful:

https://consultqd.clevelandclinic.org/unexplained-dyspnea-could-it-be-due-to-a-chronically-low-preload-state/

[Pistol]

@chimeraskeep yes, I get dyspnea whenever I overdo things, not only physically, like walking stairs, but also if I get overly stimulated. My oxygen levels at that time are usually normal, so I don’t think it originates In the lungs. I also usually get chest pain alongside with it, that - I was told by my cardiologist - comes from not enough oxygen reaching the brain and heart from  circulatory changes caused by dysautonomia, as well as coronary spasms ( I have prinzmetal angina ).

What helps me to stop both symptoms is Leary’s rest until they subside and then take it a bit easier!

[Jimvano]

Sounds frustrating.

So your O2 levels are normal during these episodes? Like high 90s? If so, then it does not sound oxygen related. Maybe CO2 related? 

Look at the symptoms of metabolic acidosis, and see if some foods you are eating/drinking an hour or two before might be triggering. Wine after any exertion is bad combo for me. 

Also, see if you are doing alot of breathing through your mouth before it happens. For me, breathing through my nose during physical activity has helped alot and I get short of breath much less often. Stamina has increased quite a bit since I switched from mouth to nose. Lots of science behind why. 

[chimeraskeep]

MikeO,

It doesn't necessarily happen upon standing, but definitely when I am upright.

[chimeraskeep]

Thank you, everyone, for your helpful replies!!

[Sarah Tee]

Just butting in again ... there was a research study where POTS patients undertook breathing physiotherapy (with a proper qualified physio). At the end of the study, most of the participants reported feeling a benefit.

https://pubmed.ncbi.nlm.nih.gov/31743851/

This may or may not be relevant:

There have also been a couple of studies dating back about a decade showing that POTS patients and other OI patients have abnormal end tidal CO2 results during testing. The most recent study was by Dr Peter Novak, and he came up with the term "HYCH" to describe a new type of OI.

[chimeraskeep]

Sarah Tee,

omg, Dr. Novak is my doctor!! Wow!  Thanks for the info!!!

[Sarah Tee]

@chimeraskeep, that is interesting. If I lived in the US, he would be the specialist I would try to see.

(I have plain OI, no HR or BP abnormalities, and he seems to be the only person who publishes on “my kind”, although I am sure all the specialists know we exist. I might have HYCH or OCHOS, the two new syndromes he named, but I’ve been told they can’t be tested for in Australia.)

[Sarah Tee]

I just found an interesting article on dyspnea:

https://zero.sci-hub.se/6795/ca38eda48867d74df915e0a4e4e222e1/epstein1995.pdf?download=true

PDF link

(Not specific to dysautonomia)

It explains why it is hard to quantify and investigate.

It states that, in patients with cardiovascular disease, hypoxia and dyspnea did not have a clear relationship, i.e. hypoxia did not always cause dyspnea and fixing hypoxia did not always reduce dyspnea.

It’s an older article, 1995, so maybe they know more now. I have heard several POTS experts say that the cause of dyspnea in POTS is unknown (recent lectures).

[Pistol]

@Sarah Tee what does OCHOS stand for?

[Sarah Tee]

OCHOS is orthostatic cerebral hypoperfusion syndrome.

Quote

OCHOs is defined by (1) abnormal orthostatic drop of cerebral blood flow velocity (CBFv) during the tilt test and (2) absence of orthostatic hypotension, arrhythmia, vascular abnormalities, or other causes of abnormal orthostatic CBFv.

https://pubmed.ncbi.nlm.nih.gov/26909037/

 

Sorry, I should have included a link when I mentioned it.

[MikeO]

wonder if this has a hand in my whooshing.

[RecipeForDisaster]

21 hours ago, Sarah Tee said:

@chimeraskeep, that is interesting. If I lived in the US, he would be the specialist I would try to see.

(I have plain OI, no HR or BP abnormalities, and he seems to be the only person who publishes on “my kind”, although I am sure all the specialists know we exist. I might have HYCH or OCHOS, the two new syndromes he named, but I’ve been told they can’t be tested for in Australia.)

People from many countries show up to see him! I know there are other people who are good with this stuff - and I guess I can’t be too excited, as it’s not like I’m doing well. It’s not him prescribing my IVIG, either. I do like him, but aside from giving me a label, it hasn’t been THAT helpful.