Non-Asthmatic Breathing Difficulties: My Experience
**Seeking Insights on Persistent Breathing Dilemmas:** At 24 years old (assigned female at birth), I have a range of medical diagnoses and relevant information:
* Postural Orthostatic Tachycardia Syndrome (POTS)
* A hypermobility disorder that has not been specified
* Chronic cluster headaches
* A bicuspid aortic valve
* Ulcerative colitis
* Celiac disease
* No background of generalized anxiety
* Never smoked; I’ve dealt with these issues my whole life, and would never risk worsening them by engaging in habits that could damage my lungs.
* This condition has been present in my life since I was around 10, dating back to 2009, so it is unrelated to anything like COVID, to my knowledge.
# Sensations Experienced:
* There is a constant feeling of not being able to take a complete breath; it manifests as a desperate need for air.
* Even after deep inhalations, I don’t achieve that satisfying feeling associated with a full breath. The few times I do manage a satisfying breath, it can be uncomfortable, almost causing rib pain due to how much I have to expand my chest.
* I often find myself huffing, yawning, or forcing air in a futile attempt to feel a sense of fullness in my lungs.
* It can be alarming, resembling suffocation, even though I am indeed inhaling.
* I experience jaw discomfort (I can only breathe through my mouth during these episodes; nasal breathing while my mouth is closed feels akin to being submerged underwater), rib tenderness, a dry mouth and throat, and throat pain altogether.
* In severe episodes, I experience all of the above symptoms, plus lightheadedness, shakiness, and an overwhelming sense of distress.
# Additional Clinical Details:
* My oxygen saturation remains within the normal range during these episodes.
* I have tried numerous inhalers, but none have provided any relief.
* No abnormal sounds are detected in my lung assessments.
* My respiratory rate may drop to around 6 breaths per minute during intense episodes but generally stays around 17.
* I’ve explored countless remedies—cold and humidified air, hot and cold showers, resting or sitting—but nothing has produced long-lasting relief.
* These episodes don’t appear to correlate with anxiety; I don’t experience anxiety, and so far, I haven’t identified any triggers, despite a decade of trying to do so.
* Testing confirmed no environmental allergies, and I reside in an area known for its clean air quality, having lived here since I was 7.
* Episodes can last from a few weeks to several months, and periods of remission can span a similar timeframe.
* Various medications have not influenced the condition, positive or negative; I had this issue long before I started taking regular medications, and my experiences with different drugs have proven irrelevant.
I am currently enduring one of the most severe flare-ups I’ve faced and the relentless feeling of air deprivation leaves me in a near-constant state of distress. Over the years, I have consulted multiple healthcare providers—though it’s been some time since my last visit—and the only response I receive is, “It’s not asthma,” before I’m dismissed. I’m not seeking to replace in-person medical advice, but rather looking for guidance on which path to take moving forward. Despite visiting the hospital numerous times and undergoing the asthma testing multiple times (around twenty instances of the classic birthday candle test), further investigations have never been initiated. It’s always concluded with, “If it’s not asthma, you must be fine.” In all my dealings with chronic illness communities, I have yet to encounter anyone with a similar experience. Perhaps my struggle stems from a lack of ability in concisely articulating my symptoms, which makes it difficult to connect with others who might have comparable conditions. If there’s anything I might be overlooking or needing to elaborate upon, please reach out. I’m hesitant to share my situation so publicly but feel a strong sense of urgency, and any guidance would be greatly appreciated. Thank you for taking the time to read this, truly.
Shortness of BreathAllergy & ImmunologyPulmonology