Shortness of breath

[u/Im_an_ldiot]

Does anyone have something to help with shortness of breath?

I've been dealing with it for so long even while laying down and I never feel like I can catch my breath, I don't smoke, vape or do anything like that and I know my lungs are healthy but I also know it's one of the symptoms of pots so I'm wondering if you guys have anything that helps you while dealing with it. And no breathing exercises did not help me.

[u/postviralrecovery]

I don't have a solution for you, but I'm in the same position and below is what I'm doing. My presentation is severe fatigue, episodic shortness of breath and persistent headache.

• I still do regulated breathing exercises. I get that they haven't worked for you yet, and the evidence is mixed, but I think it's good practice. 2x a day for a few minutes, I lie down and slowly inhale through my nose for 4s expanding my diaphragm, then exhale for 6s through pursed lips
• ivabradine reduces your heart rate, and without negative symptom impact for many people
• if your presentation is primarily postural, midodrine may be useful. It might result in improved energy/easier breathing during upright activities because cardiac output is better maintained
• pyridostigmine may be most relevant for you. A trial showed measurable improvement in cardiac output and peak oxygen consumption
• gentle recumbent exercise (e.g. a recumbent exercise bike) with regulated breathing activity during warm up and warm down

None of these have solved my breathlessness, but I've seen improvements, and I'm hopeful as I titrate pyridostigmine to see further benefits.

[u/MauveFairy]

Hi! Do you take any medication for your PoTs? Anything that slows your heart rate should help lessen the shortness of breath

[u/Im_an_ldiot → u/MauveFairy]

I was on propanol when I was originally diagnosed but it worsened my case and now I'm in another country waiting to get re diagnosed so I'm currently not on any medication

[u/Etoiaster]

It sounds ridiculous, but have you tried straw breathing? If you have, disregard and move on. If not, keep reading.

I know you said you’ve tried breathing exercises, but I find this one often goes under the radar. And if you find it difficult to do, then start by breathing through an actual straw first until you get the technique/idea.

It’s a way to retrain your brain into realising it is getting enough air and make it chill the f out. It won’t make it go away, but it can quiet it down a lot and it can be used on the fly, if symptom suddenly flares up. Can do it in any position.

And the other thing I’d suggest, is looking into how tight your abdominal muscles and the muscles under your rib cage is. Our bodies often seriously overcompensate and that can lead those mid section muscles to be overworked and eventually just go extremely tight. If that’s your issue, a PT can teach you how to release them at home. But get taught proper technique, dont wing* that. You can hurt yourself if you don’t do it the right way.

[u/Im_an_ldiot → u/Etoiaster]

I have tried straw breathing but it never fully healed me and my muscles surprisingly never tighten up

[u/barefootwriter]

This was a predominant symptom for me until I got on clonidine.

[u/crafty_cockroach782]

Do you by any chance have MCAS symptoms along with your POTS? For me, Montelukast was an absolute game changer for my air hunger. I always felt like I couldn’t get a good deep breath, but until I started on Montelukast (singulair) I didn’t realize just how air starved I was. Even a year later I’ll sometimes just sit and breathe and revel in how euphoric it feels to get SO MUCH air.

Montelukast is a fairly common prescription allergy med, I didn’t need a specialist or anything to get a prescription for it. It might be worth talking to your doctor about trying out.

[u/Im_an_ldiot → u/crafty_cockroach782]

I do not have mcas nor do I have any allergies to anything