People With Breathing Issues

[andybonse]

Hey all,

I have had shortness of breath at rest on and off, that doesn't really get worse with exercise. It's horrible and can get worse after meals. Sometimes is doesn't though it depends...

It has improved lately, omeprazole makes it worse(I've read omeprazole can cause 30% vasoconstrction on the lungs, heart etc.) So I am thinking, central vasoconstriction restricts blood to the lungs to keep blood pressure normal because of the peripheral dilation. This would explain why Midodrine makes me worse as even more constriction etc.

I went to see a pulmonologist, and agreed to have the following:

High resolution CT Scan without contrast

Echocardiogram to make sure the estimated pulmonary arterial pressure is within range to exclude pulmonary hypertension(we don't think its this but have to check)

Lung Function tests in a glass box lol

She wanted to do a CT Pulmonary Angiogram, but I am not too keen as the contrast dye etc not sure if I'll be allergic or not, so we are either doing this last or not at all.

If all tests are normal, we are going to presume its down to the Dysautonomia, which it seems it is anyways.

What tests did you have?

Anything helped your shortness of breath?

[Katybug]

Hi Andy,

It's not perfect but I an now on my second prednisone burst in 3 months. It has improved my breathing while nothing else has. I have mcas as well as severe IgE (classical ) allergies. That may very well be why the prednisone helps me although I have had breathing/lung function tests multiple times that do not indicate asthma. I also have EDS so I have to have an echo every year. That has not indicated anything that would affect my breathing. I'm pretty sure I remember you thinking you have mcas. There are quite a number of drugs that can be problematic for those of us with mcas, one being beta blockers so that complicates things with a POTSIE. Don't know if you're on a bb. I hope you get to the bottom of it. You may want to do a search on this forum for this as there was a member "RichGotsPots" that had severe breathing problems and had lots of threads and I think eventually found some answers he posted about.

[spinner]

Lots of possibilities, and dont give up that you can get major help with this.

I struggle with breathing issues regularly, klonopin, ashthma inhaler, and using BIPAP all help.

Allergies can be sudden onset in particular with leaky gut syndrome, google this and also magnesium, iron,

b6.12, etc.

Alcohol can cause problems. Histamine is another culprit. Google histamine and "excitotoxins" Dr. Cheney did

a lot of work in this area.

Various forums are your best bet. You will find people with similar issues. Has your neurologist ruled out

other problems?

Have you been exposed to environmental mold etc? Tick bite?

Cover all the bases.

[andybonse]

Thanks guys,

I actually find alcohol really helps my symptoms, lol. I can walk with alcohol at heart rate 160bpm but without alcohol at 160bpm I get angina....whaaaat?! haha.

I need something for my acid reflux as it makes it sore and makes me feel sick, PPI probably not good for me as it seemed omeprazole made me worse, might re-try zantac again.

No tick bites etc, was also tested for Lyme.

I will keep getting diff tests I guess!!!

[YolaInBlue]

I had an X-ray, ECHO, V scan for pulmonary embolism, blood test for allergies, breathing test for lung function. My lungs function at 56%, way too low.

I am on antibiotic now (for possible infection), asthma inhaler, and motrin twice a day, which helps bring the inflamation down. Allergy meds didn't make a difference.

I am better on azithromycin, but almost finished with it after 2 weeks. My GP is just trying meds but has no idea what is going on. She said, if it doesn't go away after antibiotic treatment, I need to have bronchoscopy done. At this point I don't think I can avoid it. My Lyme test was indeterminate, but can breathing problems be a symptom of Lyme?

[dianne.fraser]

I've also had breathing issues that were eased with prednisone (including shortness of breath, a feeling as though I was not getting enough oxygen and that my breathing was strained). I recently started treatment for an underlying neuromuscular disease, and the resolution of my breathing issues has been one of the most dramatic outcomes - my breathing feels completely effortless; as though my lungs have been coated in a fine, warm oil, and they are expanding as they should for the first time (since the prednisone...). Good luck with finding your own answers.

[xRobin]

Hi Andy, I've had shortness of breath with POTS but mostly it's standing. But, like you I've had breathing issues after meals on and off. I have no idea but I think it might have something to do with blood rerouting to digest, but with dysautonomia the flow is not always the way it should be.

I also have acid reflux and asthma. The one can induce the other. Are you coughing or wheezing? One simple way to check that out is to do a home peak flow after meals. Definitely try a lot of the behavioral stuff if you're not doing it like sitting up after meals, smaller meals, no food within a few hours of bedtime.

Good idea to not get the contrast if you don't have to. I just had a contrast CT and immediately got hives, boo.

Best of luck to you let use know how your test results go!