This is the tale of over 20 years of endless and inconclusive testing to pinpoint the reason for my mom’s chronic cough. Not any of the medical specialists she saw throughout the years could ever figure out the cause. When I discovered the answer, her doctors were skeptical at first, and then amazed by her complete transformation with the proper treatment. For that reason I thought the story was worth telling. Maybe it will help someone else.
Mom’s coughing began in 1987. For the first few months, she thought since it was “just a cough” it would eventually go away. After about six months of the cough not only lingering, but getting progressively worse, she saw her doctor. The length of time she had been coughing, the frequency of her coughs, and the fact that there was no perceivable reason for the cough, concerned her primary care doctor enough to send her to a gastrointestinal specialist.
The first procedure was an upper endoscopy. This is a rather simple, yet invasive test to get a closer look at the inside of the throat using a scope to search for inflammation and other abnormalities that may be cancerous. Although it is basically painless, the procedure is rather unnerving when you have an uncontrollable cough, but are directed not to cough at all while the scope is down the throat. The test showed that her voice box was damaged, but the doctor concluded it was probably because of all her coughing, not the cause of her coughing.
And so it began- this was the first of a multitude of specialists and tests to come. Over the years mom was tested for allergies, acid and non-acid reflux, asthma, infections, and viruses. Besides the endoscopy, her numerous exams included pulmonary function tests, chest x-rays, reflux studies, barium swallows, and CT scans. As time passed, some of these tests were conducted more than once, and they mainly came back negative or inconclusive.
During all this time, mom was constantly being experimentally treated with some medication or another in the hopes that something would work for her. The medications included various steroid inhalers, antibiotics, allergy medications, proton pump inhibitors, and cough suppressants. She was on each medication for several weeks to months, depending on the medication, to give each one a long enough chance to have an effect. This process continued intermittently for two decades.
All the while, mom’s cough was bad. It was relentless and sporadic. She never knew exactly when she would cough, but she knew she would cough throughout the day, every day. She was flustered about going anywhere you are expected to be quiet…church, her grandchildren’s plays, awards days, recitals, my wedding. Cough drops helped somewhat, so she popped 15 to 20 a day. All day long at work, she had cough drops in her mouth. Whenever she went anywhere, she took cough drops along.
I’m ashamed to say, I got irritated when I would talk to mom on the phone because she was always coughing. She would answer the phone coughing and she would try to talk through the coughing. As I rolled my eyes on the other end of the line, I would tell her to put a cough drop in her mouth. What a horrible daughter! I had to find the reason for this cough to rid my mom of her exhausting burden and to redeem myself from my self-centered irritation at her.
Periodically over the years, I would get on the internet and use the keywords “chronic cough” to search for answers. I visited the reputable websites like mayo clinic, webmd, and medicinenet. They all listed plenty of possible reasons for a chronic cough. The usual suspects included asthma, allergies, postnasal drip, gastroesophageal reflux disease, respiratory tract infection, air pollution, bronchitis, ace inhibitors, and pertussis. I read pages and pages about these possible causes.
However, mom had already been tested repeatedly for the usual suspects with negative results. Sure, she had a few allergies, but they were not the root cause of her cough. There were also less common causes listed on the websites like chronic obstructive pulmonary disease, laryngopharyngeal reflux, sarcoidosis, and cystic fibrosis. I researched each of these conditions individually to determine if they could possibly be the culprit, but they were not.
Then, on March 11, 2010 I watched The Today Show. One segment was about a young girl who sneezed repeatedly up to 12,000 times a day. She had a rare and newly-discovered condition called PANDAS, pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. It’s what can happen when the body’s immune system goes crazy when fighting strep throat. The antibodies produced migrate to the brain and cause tics or obsessive-compulsive behavior. Here is a link to The Today Show segment that I watched:
A light bulb flashed on in my brain. Mom may have a coughing tic! I decided to research this possibility on the internet. Maybe all this time I had been using the wrong keywords to search for the answer. This time, instead of searching for “chronic cough”, I searched for “coughing tic”, and pressed enter. After all these years, there it was…the answer! Wow, just typing these words in this blog brought tears to my eyes because I know how monumental this discovery was to my mom’s well-being and quality of life.
It turns out that the issue the little girl from The Today Show had was not the exact cause of my mom’s suffering, but it was what led me to the correct answer. My mom’s chronic cough was caused by laryngeal sensory neuropathy. This is when the nerve that provides sensation to the voice box, which is the same nerve that initiates the cough reflex, becomes damaged. The damage is usually caused by a virus and the nerve becomes hypersensitive as a result. Here is the link that I found:
Why in the world this information is completely omitted as a possible cause of chronic cough on every one of the popular medical websites, I don’t know. Why in the world the plethora of specialists that my mom had seen over the years had never heard of this, I don’t know. But what is truly disheartening is that none of them, not one, bothered to do any research outside the normal battery of tests that protocol dictates they perform. It astounds me that my mom had to suffer for years when the solution was so simple.
Mom printed the information from the above website and took it to her primary care physician. Although he was skeptical, he was willing to give the treatment a try because he had watched her suffer for so long. The treatment simply involved taking medication to calm the nerve. Her physician opted not to use the exact medication called for by the web doctor, but tried a similar one instead. The effect was noticeable in 2 to 3 days. Her coughing was reduced significantly. It felt like a miracle. Her doctor was amazed.
It’s been over 5 years now. Mom has gone from 20 cough drops a day to maybe 3 a week. She still coughs at times, but the amount is miniscule compared to what she dealt with for 25 years. When she visited a pulmonary specialist a few months ago about an unrelated issue, she told him this story. After reviewing the information for himself online, he was also amazed. In fact, he confided in mom that this revelation may have solved the mystery for another one of his patients who has been coughing for 15 years. That’s two down! Are there anymore of you out there?
So what is the takeaway from this story? That is for you to determine. I don’t profess to have a fraction of the expertise of any doctor, and I don’t recommend using the internet for all your medical diagnoses; but I do suggest that you take an active role in the process of seeking answers. I believe this should be the case in every aspect of your life…body, mind, and soul. Don’t give up. If you have a hopeless day, start over tomorrow. Your answer may be right around the corner, ready to jump out at you. Be ready for it!