Difficulty Breathing

[britishangel6]

I recently began to ave labored breathing. For a while it was constant progressed to intermittent. I had tried allergy medicine since I was also congestion but found no difference. I tried taking my inhaler but that didn't help either. I didn't have any chest pressure and it's different than the shortness of breath I get with tachycardia from POTS. I did go to the doctor and he checked my lung function, which was normal, ruling out asthma. He mentioned checking for pleural effusion but didn't order a chest x-ray; however, I know enough that with normal lung function and no cough, that doesn't seem to fit (yet it seems worse when I lay down; is that because it could be effusion or because I am more aware of it? I don't know but if it was an effusion I would expect it to be every time I laid down). He also ordered an EKG and Echo since my last was almost a year ago. I don't have the results and figure if anything was found it's minor since results weren't immediately reported. From the start he said it could be due to the propanolol. I was told, at Vanderbilt, to take propanolol as needed. The doctor is a primary physician, although he shares a clinic with a cardiologist and my doctor was aware of POTS, but told me to take routinely and to increase time between pills. The decrease of frequency has increased multiple other POTS symptoms. He said if my heart beat drops too low that could cause the labored breathing and skipping a dose could also lead to symptoms due to stopping a beta blocker. I've made the changes for about 2 weeks and still having intermittent labored breathing. Any thoughts? Experience with similar issue?

[Chaos]

I've had a lot of issues with shortness of breath and breath hunger. Have been to a pulmonologist and no primary pulmonary issue has been found with all the testing they've done. Also have had no luck with various meds and inhalers helping it. I do have some intermittent exercise induced asthma but that's the only lung issue I have.

If I sit quietly and focus on my breathing I can feel air moving into all parts of my lungs so I don't believe there is any obstruction actually occurring in the lungs themselves. To me personally it feels more like an "energy" issue...like it takes too much energy to do anything- including breathing.

When I'm feeling so short of breath, I can't say more than 2-3 words at a time before I have to gasp for air like I've just run 100 yard dash. If I roll over in bed, I have to breath hard like I've been running a race just from the exertion of moving. I also notice that I get really light headed with even a few words of talking and there is no way I can stand up and talk at the same time or I really feel like I'll pass out.

Not sure if this is the type of labored breathing you are experiencing as well?

Unfortunately don't have any good advice for you as I haven't found anything that helps me when I'm in one of these phases. Luckily it seems to be worse when I'm in a "flare" but resolves for the most part when my other symptoms improve. "Tincture of time" seems to be my most effective treatment for a lot of these symptoms that no one seems to be able to explain.

[Dizzysillyak]

Thanks for posting this. I do this too but so far have only connected it to tachycardia from pots. My brain

has checked out too ... I thought this may be the problem since the autonomic connection is gone.

Btw, my hr only gets up to 109 from this before I have to lay down. My supine is 65 - 67.

Laying down for a few minutes calms this but I still can't sit or stand for at least an hour without it

coming right back.

Have you tried using oxygen ? I was thinking if asking my doctor for this .. Tc .. D

[RichGotsPots]

i have exactly this, still investigating it. No meds help at all so far... My oxygen level is perfect.

[britishangel6]

This was posted a while ago but I saw my PMD and he thought it may be related to the PRN status of propanalol (beta blocker). He spaced the dosing out slightly but made it scheduled and over time it improved. Then this summer I weaned off BB ok (in prep to get pregnant). After the first trimester I was told I can resume and when I did I began with episodes of SOB unrelated to exertion. It's improved now after titrating up to a constant dose.

DIZZY- if respiratory is ruled out chances are oxygen won't help but out of curiosity, did you try it?

[Angela]

not on a bb as it made me sicker but still have the sensation of forgetting how to breathe. if that's what you mean by labored breathe. ?

[Mydoggielovesme2]

I'm not on bb either, but have this problem also. This symptom started for me about a year ago. I do not have it all the time,and can not seem to find what triggers it. I feel as if I can't get enough air into my lungs. Talking is very difficult, can only say a few words before gasping for air. It feels like someone is squeezing my throat, while pressing on my chest. Thankfully it's not happening all the time!

[Angela]

i was dx'd with seizure activity when this happens. lack of oxygen to the brain is what i was told eventually....and seems to make sense.

[Mydoggielovesme2]

Angela, may I ask how this was dx'd. Is there something specific I can ask my Dr to do? I feel so bad when this happens. This is the one thing that REALLY scares me.

[spinner]

IDEAS (not medical advice, things I've discovered are related to topic)

1. sleep apnea, low oximetry

2. Thiamine, vitamin B, sympathetic nervous system, cholinergic properties

3. Iron, anemia, mononucleosis

4. Alcohol, caffeine, anxiety

5. Med combinations, meds

6. DIET, histamines, food allergies, leaky gut syndrome

7. CELIAC intolerance,

8. MSG, aspartame, nitrates, sulfites

[Mydoggielovesme2]

Thanks Spinner, I am hoping Mayo can give me some answers. Your ideas are interesting...1-3,5-7, would need looking into. 4&8 are things I try to avoid.

[Angela]

Angela, may I ask how this was dx'd. Is there something specific I can ask my Dr to do? I feel so bad when this happens. This is the one thing that REALLY scares me.

sorry i did't get back to you, abnormal brain slowing dx'd thru eeg, put on seizure meds for 3 months and then later reexamined by mayo epilepsy seizure spec. who said that it was not "true" seizure or epilepsy. we will see! however, someone else with pots who I recently have been in contact with is on seizure meds with the same explanation - lack of oxy to brain.

[ashleighheath]

vocal chord dysfunction is apparently a less common complication of autonomic imbalance.

http://www.nationaljewish.org/healthinfo/conditions/vcd/

while i'm not sure if labored breathing is the way i might describe it, perhaps vocal chord dysfunction is what you or others reading this post are experiencing? with therapy and coaching it can be pretty easily corrected without medication. (ENTs treat and specialize in VCD.)

[Angela]

for me, very certainly not vocal chord disfunk unfortunately. but funny, some days i can sing, some days i can't. i've been like that since i've been young, age 6 they wanted me to sing when my adopted parents found me playing the piano without lessons and singing; but i have figured out that i am inconsistent, some days I am so on key and can let it out, sounds good somedays not. i was in a band when i was 18 as vocal/keyboard and somedays I sounded awesome vocally the others, it was like i forgot how to sing, others i couldn't play the piano like i felt. it comes and goes.... like pop stars right? (sarcism) but the forgetting how to breathe is entirely dif.sensation. btw, no means do i claim to have vocal skill such as an opera singer! i'm more like mazzy star as far as vocals.

[Angela]

well on second thought I couldn't say certainly for sure cause I do have some of the symptoms described. but the article describes it as this:

" Breathing causes the vocal cords to open, allowing air to flow through the windpipe (trachea) and into the lungs. With VCD, the vocal cords close together, or constrict, during inhalation or exhalation. This leaves only a small opening for air to flow through the windpipe and causes asthma-like symptoms."

I just feel like my mind is not telling me how to breathe so I forget how, it's not like I am wheezing or gasping for air like I invision asthma patients do (on tv, lol) I wonder if that's what people with asthma feel like? I couldn't say since I don't know anyone. It would be interesting to compare descriptions of how it feels.

[angelloz]

I can really weigh in on this as I have had spastic dysphonia since age 32. I am now 54. I took botox injections for this up until 2010 when the autonomic problems hit. Maybe this was a long time clue that i was suseptible to this problem. I never had the breathing problems in all those years that I have now. Sometimes it is a sort of tight feeling in my throat, at times I can't take as deep of a breath as usual...and the worst of all, breathing..but feeling like I'm not benefitting. I feel like I'm desperately needing oxygen. This happens when my symptoms are severe...ER time??? maybe I had mild autonomic problems for years..I have had migraines...low BP etc.. but never felt the awful way I feel now. Angelloz

[RichGotsPots]

I started thinking that some how it's related to food. When I just drink liquids like fresh vegetable juice I feel stronger and have less breathing issues. Then when I eat solids and go out or take a shower after I get breathing issues..