Managing the Rollercoaster of pETD: Small Steps, Self-Advocacy, and Strength for the Echoes Inside
A personal advocacy blog draft for The Collinson Foundation for Patulous Eustachian Tube
There is a sentence in Chapter Five of my book Strength for the Thunder Inside that still stops me: “You never realize how much you depend on something working properly — until it doesn’t.” I wrote that from inside a body that had stopped feeling predictable. That is what living with Patulous Eustachian Tube Dysfunction, or pETD, has felt like for me. Before pET entered my life in 2016, I did not think about the quiet mechanics of my body. I breathed. I talked. I swallowed. I answered the phone. I sat through conversations. I went to work. I tried to sleep. These were supposed to be ordinary things — the kind of things a person does without asking permission from their own ears. Then ordinary things became loud. A breath could sound like wind moving through my head. My voice could echo back at me as if I were speaking inside a barrel. Some days I could almost convince myself that maybe things were settling down, and then the symptoms would return as if they'd been waiting around the corner with a tiny marching band and absolutely no respect for my schedule. The rollercoaster part is not dramatic wording. It is accurate. pET can make you feel as if your body is changing the rules while you are still trying to read the instructions. Some days are manageable. Some days are confusing. Some days you feel like you have a system; other days, the system looks at you, laughs, and walks out the door. For me, learning to manage symptoms has been one of the hardest lessons because managing is not the same as giving up on answers. It is not surrender. It is survival with strategy. **
When Your Own Body Becomes Too Loud
One of the hardest parts of pET is explaining it to someone who has never experienced it. How do you explain that your own breathing is too loud? How do you explain that hearing yourself speak can feel physically and emotionally draining? How do you explain that you may look fine, while inside your head, there is an echo chamber you cannot leave? I have had moments when I wanted to describe what was happening and immediately realized how strange it sounded out loud. “I can hear myself breathing too much” does not land the way “my knee hurts” does. People understand pain they can picture. They struggle with symptoms that sound impossible unless you live inside them. That is where the emotional weight of pET begins. The symptoms are physical, but the experience becomes mental, social, and deeply personal. You start planning your day around your ears. You wonder whether talking too much will make things worse. You become aware of hydration, posture, breathing, stress, noise, fatigue, and even how your jaw moves. It is a strange thing to live inside your own body and feel like you have to negotiate with it. And yet, so many of us do. That is why advocacy matters. People with pET do not need to be told, “It’s probably nothing,” or “Just live with it.” We need clinicians, families, friends, employers, and communities to understand that this condition can affect quality of life in real and serious ways. **
That is not “nothing.” That is someone’s daily life. ** **
The Unflashy Things Matter
** I will be honest: hydration does not sound exciting. Nobody wants the grand medical advice to be, “Have you tried water?” When you are dealing with symptoms that affect your voice, hearing, pressure, peace, and sanity, that kind of advice can feel almost insulting. But I have also learned that the unflashy things matter. For some people with pETD, dehydration can worsen symptoms because the tissues around the Eustachian tube may become dry or less supported. Staying hydrated, keeping nasal passages moist, using a humidifier in dry environments, and paying attention to dryness are not miracle cures. They are small pieces of a larger survival kit. That has been a shift for me. I used to want every tool to feel big enough to match the size of the problem. Now I understand that sometimes relief comes in small, ordinary choices that do not look impressive from the outside. Drinking water. Resting. Noticing patterns. Writing things down. Giving my body a little less to fight. Self-awareness can become powerful when it is handled with compassion.
Not obsessive. Not fearful. Powerful.
Tracking symptoms can turn confusion into information. Did symptoms worsen after a long day of talking? During dry weather? When I was stressed? When I had not had enough fluids? When I was exhausted? When I was trying to push through because everyone else seemed fine and I did not want to be the complicated one? A symptom journal may not cure pET, but it can give you language. It can help you walk into an appointment with more than “Something feels wrong.” It can help you notice patterns when your tired brain would rather throw all the evidence into one big messy drawer labeled “I can’t do this today.” And let’s be real: symptoms have a rude habit of behaving better the minute you get in front of a medical professional. It is like they know there is an appointment and suddenly decide to act casual. So yes, write things down. Bring notes. Your lived experience counts, even when the symptom decides to hide during the exam. **
Relief Can Be Positional — and That Should Be Taken Seriously
** One of the most validating things I have learned is that positional relief is real information. Many people with pET notice that symptoms improve when lying down. Some people may get temporary relief by placing the head between the knees or tilting the head to the side. These changes may affect blood flow and the openness of the Eustachian tube, which can temporarily reduce symptoms such as autophony or pressure changes. For me, learning that position could change symptoms helped me feel a little less like I was imagining things. If lying down changed what I heard, that meant something was happening. My body was giving me a clue. That matters because patients often know things about their bodies before anyone else does. If a person says, “My symptoms improve when I lie down,” that is not random. That is information. If they say, “My breathing sounds louder when I am upright,” that is information. If they say, “I can function better in the morning but struggle later in the day,” that is information. Advocacy means encouraging patients to trust what they observe and encouraging clinicians to listen for those patterns. pET is not always loud during the exam. It is not always obvious in the room. But that does not mean it is not real. Sometimes the proof is in the pattern.
Breathing Through the Echo
Breathing can become complicated when it is itself part of the symptom. That sentence sounds ridiculous until you have lived it. When symptoms flare, my body can go into scanning mode. Is it louder? Is it worse? Is it going to stay this way? Can I get through this conversation, this appointment, this meeting, this dinner, this drive home? That is where pET reaches beyond the ear. It becomes whole-person care. The symptom happens in the body, but the fear and fatigue wrap around everything else. Breathing strategies such as pursed-lip breathing, box breathing, nasal breathing, diaphragmatic breathing, and simple breathing-awareness tracking are not cures. I do not use them as magic tricks. I think of them more like handrails. They may not stop the rollercoaster, but they can give me something to hold onto when the ride gets rough. Therapy has helped me recognize the difference between the symptom itself and the spiral that can follow it. The echo may start in my ear, but the worry can spread fast. Learning to slow my breathing, soften my body, and remind myself that I am still safe in this moment has become part of how I manage the emotional side of pET. The echo may still be there. The discomfort may still be there. But sometimes one calmer breath is enough to keep me from falling all the way into panic.
For pET, that counts.
Not a dramatic victory. Not a movie-scene breakthrough. Just one calmer breath.
That still counts.
**
The Jaw, the Tongue, and the “Yes, This Feels Weird” Exercises
Another thing I have learned is that chronic illness has no respect for dignity. At some point, you may find yourself doing tongue and jaw exercises that feel deeply strange. Tongue extension. Tongue retraction. Yawning. Palate massage. Open-mouth swallowing. Cheek inflation. Jaw movements. The kind of things that make you hope nobody walks into the room and asks, “What exactly is happening here?” But the jaw, tongue, throat, and Eustachian tube are connected in ways that can affect symptoms. Gentle exercises may help some people support pressure regulation and the function of surrounding muscles. Are these exercises glamorous? No. Will you feel a little ridiculous doing some of them? Very possibly. But when you live with something that disrupts basic functions like breathing, speaking, hearing, and resting, you stop needing every coping tool to look elegant. You just need it to help, even a little. There is courage in the small, awkward things people do to keep going. There is courage in drinking water, lying down for five minutes, tracking symptoms, trying the exercise, bringing the notes, asking the question, and refusing to dismiss your own body. People may see the coping tool, but they do not always see the courage underneath it.
When “Try This” Needs to Come With “Talk to Your Doctor”
This is where advocacy has to be careful and responsible. There are complementary approaches that some people explore, such as acupuncture or infrared light therapy. There are also pharmacologic options that may be discussed with a medical professional, especially when dryness, inflammation, mucus production, anxiety, or other contributing factors are part of the picture. Responses vary, and what helps one person may not help another. I have learned, sometimes the hard way, that “try this” should never replace “talk this through with someone qualified.” Patients deserve options, but they also deserve context. They deserve to understand possible risks. They deserve to know whether something is reversible. They deserve to ask what evidence supports a treatment and what could happen if it does not go as planned. Those questions are not difficult. They are responsible. People with pET should not be rushed into decisions just because they are desperate for relief. Desperation is real. I understand that. When the echoes do not quiet down, relief can start to feel like the only thing that matters. But patients deserve informed care, not pressure. We deserve clinicians who take time to explain, listen, and respect the complexity of the condition. The Collinson Foundation for Patulous Eustachian Tube is not here to hand people a list of treatments and say, “Go try everything.” We are here to encourage education, informed conversations, careful decision-making, and compassionate care. Patients deserve to be partners in their care, not passive passengers in a system that may not fully understand what they are living with.
Managing Symptoms Is Not the Same as Being “Fine”
One thing I wish more people understood is that managing symptoms does not mean the symptoms are gone. Someone with pET may be functioning because they have built a whole invisible system around surviving the day. They may be drinking more water, avoiding triggers, changing posture, limiting conversations, using breathing tools, resting when they can, tracking symptoms, scheduling appointments, researching providers, and quietly fighting fear in the background.
That does not mean they are fine. It means they are working hard. There is a difference.
I have had to learn this for myself too. Getting through the day does not mean the day was easy. Smiling does not mean I was not struggling. Showing up does not mean the symptoms were quiet. Sometimes showing up simply means I carried the noise with me and did the best I could anyway. That is why support matters. Patients deserve medical professionals who take them seriously. They deserve family members who do not dismiss what they cannot hear. They deserve workplaces and communities that understand invisible conditions can still be disabling. They deserve research, better education, and safer treatment pathways. Most of all, they deserve to be believed.
From Echoes to Action
Living with pET since 2016 has taught me that healing is not always loud. Sometimes it looks like learning your triggers. Sometimes it looks like asking one more question at the doctor’s office. Sometimes it looks like bringing notes because brain fog and stress are real. Sometimes it looks like resting without guilt. Sometimes it looks like saying, “No, I am not okay today,” and letting that be enough. It has also taught me that lived experience is not “less than” medical knowledge. It is part of the full picture. Patients know what it is like to live with symptoms between appointments, during workdays, in quiet rooms, in relationships, in fear, in hope, and in the ordinary moments that never make it into a chart. That is the heart of this work. The Collinson Foundation for Patulous Eustachian Tube exists because too many people have been left trying to manage the rollercoaster alone. Too many have been dismissed. Too many have had to become their own researcher, advocate, educator, and emotional support system all at once. We can do better. We can raise awareness. We can educate patients and professionals. We can encourage research. We can create a community where people do not have to explain the echo from scratch every time. Managing pET is not just about symptom relief. It is about dignity. It is about being heard. It is about making sure lived experience is treated as valuable knowledge. The thunder may be loud. The echoes may be exhausting. But every small step matters.
Every voice matters.
And together, we can turn echoes into action. Medical and Mental Health Note This blog reflects personal experience and advocacy. It is not medical advice. Anyone experiencing symptoms of Patulous Eustachian Tube should consult a qualified ENT, otologist, neurotologist, audiologist, or other appropriate healthcare professional. If symptoms are causing emotional distress, unsafe thoughts, or a medical emergency, please seek immediate help through local emergency services or a qualified crisis-support resource.
