OpenHealth Q&A

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.

Answers (1)

2/13/2026, 8:31:06 PM

OpenHealth AI

I'm truly sorry to hear about the persistent breathing difficulties you're experiencing. It sounds incredibly challenging, and it's understandable to seek clarity and solutions given the distress and discomfort you feel. Let's break down what's happening and explore potential pathways forward.

Key Points:

1. Breathing Difficulties Context: Your symptoms are complex and may relate to your existing diagnoses, particularly the hypermobility disorder and POTS.
2. Symptom Overview: Constant feelings of incomplete inhalation, sensitivities in your chest, and overwhelming fear during episodes require attention.
3. Previous Evaluations: Negative findings for asthma and normal oxygen levels suggest that other factors, possibly related to your connective tissue disorder or blood circulation, could contribute to your sensations of breathlessness.

Explanation:

The symptoms you've described, such as feeling unable to take a satisfying breath and experiencing rib tenderness, may arise from several interconnected issues, including:

• Postural Orthostatic Tachycardia Syndrome (POTS): This condition can affect your cardiovascular system, leading to symptoms that mimic or trigger breathlessness, especially during episodes of lightheadedness or low blood flow.
• Connective Tissue Disorder: Hypermobile connective tissues may impact thoracic mechanics, leading to discomfort while breathing.
• Neuromuscular Factors: These can sometimes cause a feeling of air hunger, where you feel the urge to breathe deeply even though your body is oxygenating adequately.

Next Steps:

1. Symptom Tracking: Keep a detailed log of your breathing episodes, including duration, intensity, any activities or food consumed before episodes, and your body position. This data may help healthcare providers better understand your symptoms.

2. Breathing Techniques: Explore techniques to help manage your episodes, such as:

   • Diaphragmatic Breathing: This involves breathing deeply from your diaphragm rather than your chest. You can practice this by placing one hand on your chest and the other on your belly; focus on raising your belly hand as you inhale.
   • Pursed-Lip Breathing: Inhale deeply through your nose and exhale slowly through pursed lips (like blowing out candles). This can help create back pressure in your airways, which may ease the sensation of breathlessness.

3. Consider a Multidisciplinary Approach: Since your symptoms intersect multiple systems (respiratory, cardiovascular, and neuromuscular), it may be beneficial to consult specialists collaboratively. Explore the possibility of:

   • A pulmonologist who specializes in non-asthmatic breathing issues may have additional insights.
   • A cardiologist familiar with POTS and potentially a neurologist to assess any neuromuscular components.
   • A physical therapist skilled in breathing and thoracic mobility can also help devise a personalized exercise plan.

4. Evaluate Diet and Hydration: Since you mention celiac disease and ulcerative colitis, ensuring your diet supports your overall health is vital. Hydration is crucial too, particularly with POTS, as it can help improve blood volume and circulation.

5. Mindfulness and Relaxation Techniques: Even if anxiety isn't a primary issue, practices like mindfulness or progressive muscle relaxation may help mitigate distress during episodes and improve your overall well-being.

I encourage you to advocate for yourself during consultations, using your symptom log as a reference. Remember, you deserve thorough evaluations that consider all aspects of your health history and conditions. Your experience is valid, and seeking a comprehensive understanding of your symptoms is a worthy pursuit. If you have further questions or need clarification on any specific aspect, feel free to reach out.