Anyone have Laryngeal Sensory Neuropathy?

Yeah I wish I was something with a diagnosis. I also wish I could find a doctor willing to sit down and think through my case. I know there is a lot that we don't understand about the nervous system but it seems if you don't fit a diagnosis quickly then doctors dismiss you.

I have had lsn for over 6 years . Nothing seems to really stop the cough. I am seeing a latyncologist now but have little relief. Do neurologists treat this condition?

Ohio State docs diagnosed my coughing condition as Laryngeal Sensory Neuropathy. I was prescribed Lyrica and Tramadol (meds to calm my over sensitive throat nerves.) It helped with 85% of my spasmodic coughing but I am still plagued with the remaining 15% of symptoms. I then rely on over-the-counter cough medicine and cough drops.... sometimes they help. I've lived with this problem for over 20 years. Hopefully, one day, the medical community will have a solution.

Welcome Texanna. I just found this article that I think you and other members in this discussion group may appreciate. It is written by Dr. Christopher Chang an otolaryngologist.

- Chronic cough from laryngeal sensory neuropathy (LSN) https://www.kevinmd.com/blog/2010/09/chronic-cough-laryngeal-sensory-neuropathy-lsn.html

At Mayo Clinic, there is actually a Cough Clinic (https://www.mayoclinic.org/departments-centers/cough-clinic/overview/ovc-20399029) to help people frustrated by an unexplained or difficult-to-treat chronic cough find the specialized care. Pulmonary medicine specialists use a multispecialty practice model that consistently yields effective, coordinated, high-value care. Your pulmonologist may work with experts in ear, nose and throat conditions; speech pathology; allergic diseases; digestive disorders (gastroenterology) or others as needed so that you get exactly the care you need.

What has your laryngologist suggested?

I have had my chronic cough for the past 11 years since recovering from a bad case of strep throat. I've been tested for everything under the sun and keep having the same result...that I'm in "perfect health."
Since then I've acquired more health issues and the cough has gotten so bad that I've separated tendons from my ribs from it. I am currently taking Pregabalin for another condition (which is said to be a treatment for LSN) however I have not had any success relieving my cough. I wish I could have some answers.

Welcome @shaeprincess, 11 years is a really long time to deal with a chronic cough. I'm hoping @tkubby, @jnttaz, @lmayo and others may have some suggestions or information that will help you.

Did you see the link in the previous post by @colleenyoung that mentions the Cough Clinic to help people frustrated by an unexplained or difficult-to-treat chronic cough find the specialized care?

Here is the link for more information - https://www.mayoclinic.org/departments-centers/cough-clinic/overview/ovc-20399029

Just found this site. I’ve been suffering with a cough since 2017 when I had bronchitis and the doctor would not give me codeine cough syrup. Previously, I had always been treated with codeine cough syrup for my once a year bronchitis. The cough would not go away. I went to multiple doctors, including a pulmonary doctor and 4 ENTs, with no diagnosis. My RN daughter in law was the one who finally diagnosed me with laryngeal neuropathy. So I found another ENT that had actually heard of it, and he said it was brought on my silent GERD. So went on different proton pump inhibitors with no results. Not one doctor has offered any treatment other than that. So now it’s February 2022, and the cough has gotten some better, I can go days without a cough, but then I catch RSV from my grand child. The cough is horrible, choking and weird gagging. I tell the NP that the cough has to be treated since I have LN and don’t want it to get worse. Well, she will only give me non codeine cough syrup. Of course, the cough gets worse, and now I’m sometimes coughing every 3 minutes. This cough is different from the original cough and really violent. So now it’s 3 months after the RSV and I go to 2 other ENTs, same story. It’s GERD, it’s nasal drip , just take allergy medicine and nasal spray. So next I go to an ENT at UCLA. Nice doctor, says there’s not much I can do. I mention tramadol treatment and the lidocaine and steroid shot into the nerve. He doesn’t know much about the shot or the tramadol. Mentions GERD again. And then he does admit that the virus is the cause. So if the nerve damage is caused by a virus, why are they blaming GERD????But he does give me a prescription for codeine cough syrup so I can occasionally take it so I finally sleep at night ( I haven’t slept in months). None of the doctors listen. It’s the NERVE, the GERD, etc just irritate the injured nerve. Without those irritants, the nerve is still injured and I still cough. Every person’s comments I’ve read all say the same thing, absence of GERD doesn’t stop the cough. So why don’t these doctors listen to their patients? I’m so frustrated. This cough has changed my life. I can’t go to a theater or concert comfortably. The only thing I can do is take the pain pill I take for my migraines before going, and that seems to lessen the coughing. Sorry that there are so many of you suffering, too.

I feel your pain! I've had LSN for 6 long frustrating years. Same with the cough med with codeine. I finally found a doc who would prescribe a small bottle that I take a sip of only at night when I simply MUST get some sleep. But all is not lost. I have found an over the counter cough syrup that actually works for me. It is ZARBEE's cough syrup. Walgreens, CVS, all major drugstores carry it. And it's fairly cheep. All natural, no alcohol, no drugs. I get the neck shot about every 2 months but I'm considering quitting as it doesn't do much. My ENT tried all the neuro drugs on me, each worked for about a month, some none at all. Right now all I talk is Zarbee's. The GERD stuff didn't work for me either, altho every doctor said it would. This started for me right after I contracted Type A flu. It's a very frustrating condition!!

I've had this horrible problem since 2007 following a severe sinus infection. It took doctors 2 years to diagnose it. I was tested for GERD, asthma, allergy, all negative. I have had mild success with Gabapentin (300mg/3 per day) combined with Amitriptyline (10mg/2 per day) but I still cough a great deal, especially in the mornings and after I eat a meal. I will definitely be trying ZARBEE's cough syrup as suggested by texanna in the previous post. I too have pulled muscles and made myself sick by coughing so hard. I'm tempted to increase the dosage on the Gabapetin if the doctor is willing. I always get the feeling that the doctors just wish you would go away. I'm seeing a PA in an ENT office and he is the first person I've seen that has taken an interest and listens to me.
It remains to be seen if he has any suggestions other than what I've heard for the past 11 years.
This condition changes your life. I'm afraid to go to movies, church, concerts as well as a host of other things. During COVID, people in stores would glare at me as I coughed my way up and down the aisles. I'm sure if I hadn't been wearing a mask, I would have been kicked out of the store.

I should have mentioned that Fisherman's Friend Cough Lozenges help when I start coughing in an inappropriate place. I use the original Menthol flavor which has a very strong menthol taste. They usually stop my cough within a minute or two. They can be hard to find as not all stores carry them but they can be purchased on Amazon.-