Lynn’s Experience: Navigating Chronic Cough and Clinical Trials

Chronic cough has been with me for so long that it’s become a constant, something I’ve learned to live with, yet I still hold out hope for a way to manage it better. Living with it means learning to adjust in ways I never imagined. It’s not just about the constant coughing; it’s the impact it has on my day-to-day life, physically, mentally, and emotionally. 

Physically, it’s draining. The coughing fits can leave me feeling completely exhausted. It’s not just the coughing itself, but the aftereffects—sometimes I feel like I can’t catch my breath, and often it leads to reflux, which is uncomfortable in its own way. My family, especially my kids, are used to it. But it's not always easy when I’m out in public, and people stare or comment. Sometimes it feels like a spotlight is on me, especially after COVID, when a single cough in public can send people into a panic. 

Still, I’ve learned to adapt. I always try to sit on the edge of a row at the cinema or in any public space, so I don’t disturb people. I’m constantly aware of how my coughing might affect others. While I’ve learned to live with the stares and the discomfort, there’s still that internal battle of wanting to be seen as “normal,” despite this ongoing condition. 

Clinical trials

One of the more interesting parts of my journey has been participating in clinical trials. I've done about 20 trials over the years, and while I wouldn't say I enjoy them, they’ve been an eye-opening experience where I can contribute to something bigger. There’s something meaningful about being part of the process, knowing that my participation might help others who suffer like I do. It’s not always easy—there are tests, scans, and sometimes discomfort—but I think it’s worth it, especially when the doctors are so caring and thorough. 

My husband Ian has been a constant source of support throughout my journey with clinical trials. He’s even participated in a few trials as a healthy volunteer, seeing it as a way to help and better understand what I go through. Ian really wanted to experience firsthand what it's like for me during the trials. He’s also worn a cough monitor himself, further sharing in my experience. 

I’ve also taken part in speech and language therapy, which was a long-term treatment. For some people, it helps, but for me, it didn’t make much difference. And that’s the thing with chronic cough—it’s so individual. Everyone’s experience is different, and I’ve learned that the triggers and types of coughs vary from person to person. Even so, for me, the trials have generally been a positive experience. 

As part of some of these trials, I used Vitalograph's VitaloJAK to track my cough. When it comes to the 24-hour audio recordings with the VitaloJAK, I admit I was curious about what happened to the audio once it was collected. Initially, I was a little self-conscious about someone listening to my coughs, but I soon learned that it’s not as personal as I first imagined. I met some of the team who listen to the recordings, and they explained the process in a way that reassured me. It’s not like they sit there listening to every single cough second by second. They only listen to cough sounds, and I’m rest assured that the recording is safely stored within Vitalograph’s server. 

Another thing I’ve thought about is how important it is for doctors to diagnose chronic cough more quickly. I went through years of seeing different doctors and being treated for asthma, reflux, and other conditions before I was referred to a cough clinic. My GP didn’t even know such clinics existed, and I was shocked when I finally found one. It was like a revelation to walk into that clinic and realize there were so many other people just like me. It really helped me feel less isolated in my struggle. 

Looking towards the future

As for treatment, I’d love for a miracle cure, but I’m realistic. I know it’s unlikely that a treatment will completely eradicate my cough. But if there was a drug, even something I’d have to take for the rest of my life, that could bring me relief, I’d take it without hesitation. I’ve tried different medications over the years, including a low dose of morphine, which did help in the beginning. But eventually, it stopped working as effectively. Now, I’m not on any medication at all, and while I can’t say that I’ve found a solution, I do hold out hope that something will work eventually. 

Being part of the trials has helped me in many ways, even if it’s just a small piece of the puzzle. I’ve learned so much about my condition and met some incredible doctors and other participants along the way. It’s all part of the journey. If my participation in the trials leads to something that helps me or someone else, then it will all have been worth it. Living with chronic cough isn’t easy, but I’ve learned to cope. I’ve learned to find the positives, even in the toughest moments. And I’ll keep participating in the trials, hoping that someday, the right treatment will come along. 

If you’re living with chronic cough or another ongoing respiratory condition, know that you’re not alone. It’s easy to feel isolated at times, but connecting with others, whether through support groups, clinical trials, or simply sharing your experiences, can be incredibly empowering