u/LewyV

How is this possible? Does this happen to anyone else? I literally just had an extremely traumatic 3 months straight of almost daily 24/7 breathing issues. To the point of going to the ER multiple times and even staying in the parking lot. I woke up today, and it was just gone? This has happened to me before as well. I feel normal. How is this possible? Is it possible? Wtf. I know that this won’t last long though. Damn this feels good..

Does anyone else get the sinking sensations in their chest with flares? Sorta similar to how it feels with anxiety?

Chronic VCD/PVFM — Long Post, Need to Know if Anyone Relates

I really need to vent and also genuinely want to know if anyone else experiences this the way I do, because I feel completely alone in it.

For over a decade I’ve dealt with anxiety and panic disorder, and for a long time all of my breathing issues were attributed entirely to that. But a few months ago I was finally diagnosed with vocal cord dysfunction / PVFM after a laryngoscopy. The frustrating part is the scope didn’t actually catch an active episode — it was done between flares — so part of me still struggles to fully trust the diagnosis, even though I can’t find anything else that fits better. The breathing issues from anxiety and this are completely different.

Here’s what I’ve ruled out through extensive testing: multiple EKGs, echocardiograms, chest X-rays, CT scans, blood work, Holter monitor, stress test, pulmonary function test, etc. Cardiac and major structural causes have been largely ruled out. During episodes my oxygen also stays normal, usually 94–100%, which honestly makes it more confusing because of how severe and physical this feels.

The main symptom is a chronic breathing constriction that feels like I’m breathing through a straw or like someone is gently squeezing my airway from the outside. Sometimes it literally feels like the airway “cuts off” for a split second on inhalation, almost like a hiccup or flap shutting briefly, and it sends me into instant panic. Sometimes it feels like a heart flutter. Laryngeal spasm? Idk.

Other times it feels like I physically cannot get a satisfying breath in no matter how hard I try. There are moments where my throat feels numb, cold, or hypersensitive, and I can’t even properly feel airflow moving through it. I know that sounds bizarre, but it’s one of the hardest sensations to explain.

One thing I’ve noticed that I haven’t really seen others mention: during bad episodes, if I gently pull outward on the skin at the divot at the front of my neck over my trachea, I sometimes get temporary relief. It almost feels like opening or relieving pressure in the airway somehow. No idea if anyone else experiences that. I also never have gotten a stridor or noise, wheezing, etc.

Another thing that makes my case feel different from “typical” VCD is the duration. These are not quick attacks lasting a few minutes. My episodes can last all day, multiple days, and at one point I had ongoing constriction for over a week straight with basically no relief. During bad flares I can barely walk to my mailbox, climb stairs, or do normal daily tasks without feeling air hungry.

I used to love working out, but now I avoid it because of how terrifying the breathing episodes become. Sometimes after exertion my airway feels “stuck” for hours afterward.

I did briefly work with a speech language pathologist and was given rescue breathing exercises. I’ll be honest — because I wasn’t fully convinced this was VCD/PVFM at first, I haven’t been consistent with practicing them outside episodes. I’ve tried them during severe flares and only got relief maybe once, but I know consistency is important and I’m trying to commit to it more seriously now.

Another major piece of this: about a year ago I was diagnosed with Grade C esophageal ulcers and significant reflux issues. I’ve since learned about LPR (laryngopharyngeal reflux) and how reflux can directly irritate and hypersensitize the larynx/vocal cords. I’m starting to wonder if reflux and chronic laryngeal irritation may actually be driving a huge part of this.

The impact on my life has honestly been devastating. This condition has affected relationships, family events, weddings, trips, social plans, and my ability to function normally. I’ve sat in ER parking lots during severe episodes just because it felt safer being near a hospital. I plan my life around access to emergency care. I’ve stopped traveling. It feels like I’m living a fraction of the life I should be living at this age.

I guess my main questions are:

• Does anyone else experience episodes this long and this severe?

• Has anyone found that reflux/LPR was a major driver of their VCD or laryngeal symptoms?

• Has anyone experienced that “airway shutting,” throat tightness, or inability to feel airflow sensation?

• Has anyone noticed relief from touching or adjusting the area over their trachea/throat?

• Has anyone found treatments that genuinely helped chronic severe cases beyond basic rescue breathing exercises?

I’m currently trying to get back in with a laryngologist, GI doctor, and commit more seriously to SLP therapy. I just really need to know I’m not alone in this.