By Robert W. Bastian, MD
People with sensory neuropathic cough often spend years searching in vain for a correct diagnosis and effective treatment. In a group of 110 consecutive patients diagnosed with sensory neuropathic cough by the author in 2005, the median duration of cough prior to diagnosis was 10 years, ranging from a few weeks to 62 years.
Such individuals will first visit their own primary care physician, and then an allergist, pulmonologist, gastroenterologist, and otolaryngologist. In each place, he or she may submit to a long list of tests, such as chest x-ray, various scans of the chest or sinuses, pulmonary function tests, allergy tests, bronchoscopy, esophagoscopy, 24-hour pH probe, and so forth. These tests are done to evaluate some “usual suspects,” for chronic cough—in particular, allergy, acid reflux, and cough-variant asthma.
Add to all of this that an individual with sensory neuropathic cough may have tried several to dozens of medications, including antihistamines, asthma inhalers, acid suppressors, antibiotics, cough suppressants, expectorants, and steroids—even when testing for the conditions for which those medications are used was negative. This leaves medicine chests cluttered with bottles of drugs that did not work.
The record for most grueling diagnosis search in my experience was an out-of-state patient who had been coughing for 16 years—she had seen more than 20 different physicians, undergone countless tests, and had tried 40 different medications. Her cough was the same or worse than at the beginning. After all of this time, effort, and money had been expended, with zero benefit, such a patient would understandably and reasonably be skeptical and even medically jaded, perhaps to the point of not actually complying (either overtly or covertly) with a new suggested treatment regimen.
On the other hand, the physician has not participated in the patient’s prior travails and instead may be focused on his or her previous treatment success with neuralgia medications. If the physician does not grasp the depth of the patient’s prior disappointments, he or she may not recognize when the patient is by appearances cordial and respectful, but is actually in great doubt about this “new” diagnosis.
Patient 1: Medically jaded but cordial
Several years ago, a middle-aged woman many years into an unsuccessful search for a correct diagnosis for her chronic cough came for a consultation, having heard of our work. Her history was classic for the syndrome of sensory neuropathic cough. ((Bastian RW, Vaidya AM, Delsupehe KG. Sensory neuropathic cough: a common and treatable cause of chronic cough. Otolaryngol Head and Neck Surg. 2006; 135(1): 17-21.)) I educated her extensively and also had her watch a comprehensive teaching video we use to reinforce the nature of the diagnosis and explain the strategy for testing one or more neuralgia medications. She left the office with a prescription for amitriptyline and what we call our “roadmap,” detailing in a third format the strategy, voicemail instructions, and the six things we want to know when patients phone the office to give a status report and request further instructions.
Several weeks went by, and we didn’t hear from her. I believe we tried to contact her several months later, but our voicemail did not elicit a return call. Two years later, she reappeared on my schedule. After exchanging initial greetings, I said, “I notice that we have no information about your response to the first medication you tried, amitriptyline. Did your cough go away?”
No,” she said, “The amitriptyline did nothing, and I stopped it. The cough has been as bad as ever these past two years, and I’m ready to try your second medicine.”
“Why,” I asked, “didn’t you try it two years ago?”
She said, “Well doctor, I had already seen so many doctors, and tried so many things that when your first medicine didn’t work… I just blew you off.” She still seemed to me war-weary and uninspired about my diagnosis. Happily, the second medication, gabapentin, worked extremely well for her. I was struck to think that she had coughed aggressively, almost to the point of debilitation, needlessly, for two years.
Patient 2: Hostile and even contemptuous
Out of the flow of hundreds of patients across many years, one encounter stands out vividly. I entered the examination room to meet a new patient, a nurse in her 40s. The instant I entered the room, I sensed remarkably tangible hostility. I remember thinking for a moment that I must be two hours late, though I knew I was actually running nearly on time. Through the frost, I reviewed the story of her classic but as-yet undiagnosed sensory neuropathic cough. I spent more time than usual with her, trying to find common ground and thaw the ice. I spent more time that was necessary for my benefit on the details of prior evaluations, tests, and unsuccessful treatments.
Well into the consultation and after examination, I introduced her to the diagnosis. Sensing her skepticism, I explained with analogy after analogy the concept of sensory neuropathy causing not pain, but instead, the tickling sensation that initiated each of her coughing attacks. I suggested beginning with amitriptyline. She accepted the prescription and departed. I felt drained, thinking the entire encounter was a failure and that it would likely be my last with her.
The encounter had been so unpleasant that I remembered the name when it appeared on my schedule two weeks later. I strapped on a figurative suit of armor and consciously decided that I would be cordial but not work as hard this time around. I entered the room with my guard up. To my surprise, the atmosphere in the room was dramatically different. It was as though the sun was shining; the ice was melted. The patient’s face was strikingly transformed.
Even so, I sat down tentatively. “You were just here two weeks ago,” I said. “Is there something else we need to discuss?”
“Dr. Bastian,” she said, smiling, “I am not here for any medical reason. I made this appointment purely to apologize to you.” She went on, “You have to understand that when I saw you, I had been everywhere and done everything. I had gone to major national centers. Then I came here and you gave me this new diagnosis and I said to myself, ‘Right, another bright idea that will go nowhere.’”
She went on to say that her response to amitriptyline hadn’t yet abolished her cough, but it had been reduced to an amazing degree. She was simply thrilled.
The physician must bear the brunt
It is completely understandable for patients with sensory neuropathic cough to become cynical and feel that the medical profession has failed them. We can know that collectively the many prior physicians have worked very hard within existing paradigms, and we can also explain to ourselves and to the patient that physicians cannot diagnose what they do not know about. Nevertheless, it is up to us to compensate for the patients’ medical jadedness.
Here are a few ways that we as physicians can help the patient:
- Acknowledge the patient’s prior experience. I can imagine that you are exhausted, and skeptical by now of each new idea. But I want you to bear with me while I explain something you may not have heard of before.
- Stress that you want the patient to join you in a process that may take some weeks or months to complete. I really want to start you on a path that I believe can bring you some considerable relief. You might see some benefit from the first medicine, and within the first few days. But many who eventually get wonderful benefit don’t see that benefit until they try medication 2 or 3. Trying two or three different medications in sequence can take some weeks, and a lot of patience. Please do not give up. We sometimes say around here that you can’t give up unless I give up (and I never give up).
- Show good faith by your generosity of effort. It can take some back and forth communication between you and me to get to the best medication for you. We have prepared a sheet to help you do your part. We have listed voicemail instructions and also the six things we want to know from you, every time you call the office. We do it this way to spare you trips back and forth to the office.
- Set up a careful protocol with office staff to get messages back and forth, and prescriptions filled and refilled expeditiously. This conveys to patients the importance with which you take their dreadful problem.
The rewards are great
Patients with sensory neuropathic cough do not die. But, especially if the disorder is severe, their lives can be practically ruined. Until recently sensory neuropathic cough has been an orphan disorder, and patients with it, orphans in the medical community. Although it can be labor-intensive to work through the process of finding best treatment, going through numerous calls back and forth between patient and physician, with office staff as the hard-working go-between—working with this group of patients is extraordinarily gratifying.
Bastian ZJ, Bastian RW. (2015) The use of neuralgia medications to treat sensory neuropathic cough: our experience in a retrospective cohort of thirty-two patients. PeerJ 3:e816 https://dx.doi.org/10.7717/peerj.816