Anyone have Laryngeal Sensory Neuropathy?

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.-

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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.

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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.-

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Hello. I feel your pain. Same thing here for over a decade, worsened during Covid. It’s definitely a quality of life issue. Am seeing an ENT next month who deals with larynx and will see where that goes, followed by allergist because I have bad allergies. Have you seen an allergist? Is it worth taking Gabapentin (side effects?) and Amitriptyline if they don’t really help? Or do they reduce your severe cough somewhat? I think there’s a lot more of us out there. Hoping medical community comes up with a solution.

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I just tried going off the Gabapentin and Amitriptyline to see what would happen. My cough definitely got worse so apparently they are working. I did see an allergist and took allergy shots for 2 years but that didn't help at all. I'm seeing a new ENT now because I have developed severe mucous in my throat which increases my coughing. He recommended a sinus rinse which I hate using but it definitely helps so will continue with that. I'm waiting for a miracle cure. LOL..

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I have LSN and have for all my life (72 years). It has gotten progressively worse over the years and is very bad by now. Following every possible treatment (including a tonsillectomy) years ago, and test after test (at National Jewish Health (Denver) for seven days straight, it was concluded that I have LSN....an "over sensitive larynx".
At this time, the only POSSIBLE medication for LSN that I have found through research only that does help is called Gefapixant (LYFNUA). Studies showed that it helped 85 % of the patients (subjects in the study).
Unfortunately, it is ONLY available in Japan at this time. Merck Pharmaceuticals did a study on it and the FDA did not approve it (March 2022) due to a side effect of a metallic taste left in some "subjects" mouths. I have been in contact with Merck and two different people there have told me that there are "documents" saying that they will revisit their request. Hopefully, this will happen soon!
My triggers are any odors (good or bad) and cold drafts. I ALWAYS carry a thermos with hot, hot water, and Ricola cough drops. I wear knit scarves a lot. When I go into a store and cough, of course I wear a mask, and I just tell people who give me mean looks, "I'm fine. I have asthma" ....which I do not really have! Lakarol lozenges, (order on Amazon) under my tongue, helps to keep my throat moist. A voice therapist told me to exhale slowly through the nose.
Those are my suggestions. I have researched this for many years (before the doctors or anyone knew what LSN was). Now that the doctors have labeled this, we need to hope that Gefapixant or another medication or procedure will one day be available in other countries.
Perhaps we can all telephone Merck Pharmaceuticals and pressure them to revisit their study in hopes that the FDA will soon approve that medication!
Ronda

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I have LSN and have for all my life (72 years). It has gotten progressively worse over the years and is very bad by now. Following every possible treatment (including a tonsillectomy) years ago, and test after test (at National Jewish Health (Denver) for seven days straight, it was concluded that I have LSN....an "over sensitive larynx".
At this time, the only POSSIBLE medication for LSN that I have found through research only that does help is called Gefapixant (LYFNUA). Studies showed that it helped 85 % of the patients (subjects in the study).
Unfortunately, it is ONLY available in Japan at this time. Merck Pharmaceuticals did a study on it and the FDA did not approve it (March 2022) due to a side effect of a metallic taste left in some "subjects" mouths. I have been in contact with Merck and two different people there have told me that there are "documents" saying that they will revisit their request. Hopefully, this will happen soon!
My triggers are any odors (good or bad) and cold drafts. I ALWAYS carry a thermos with hot, hot water, and Ricola cough drops. I wear knit scarves a lot. When I go into a store and cough, of course I wear a mask, and I just tell people who give me mean looks, "I'm fine. I have asthma" ....which I do not really have! Lakarol lozenges, (order on Amazon) under my tongue, helps to keep my throat moist. A voice therapist told me to exhale slowly through the nose.
Those are my suggestions. I have researched this for many years (before the doctors or anyone knew what LSN was). Now that the doctors have labeled this, we need to hope that Gefapixant or another medication or procedure will one day be available in other countries.
Perhaps we can all telephone Merck Pharmaceuticals and pressure them to revisit their study in hopes that the FDA will soon approve that medication!
Ronda

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Hi
I’ve had LSN for several years and like you I was getting worse whilst going through multiple tests to finally get a diagnosis from a neurologist and respiratory physician. At one stage I was ventilated because of a severe intractable laryngeal spasm.
I take gabapentin which does work to some extent however I’ve got the greatest benefit from CPAP normally used for sleep apnoea. The theory is that it splints the larynx whilst you sleep and over time retrains it.
I also have several
Other neurological conditions being treated by an immunologist, neurologist and ENT and am looking at a complete change of therapies.
I hope you get some relief

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