Anyone have Laryngeal Sensory Neuropathy?

Hi. I have been on several courses of prednisone over the years, maybe once every year, for sinus infections and severe throat inflammation. While it is all the things you say, it unfortunately is not a solution long-term, even for getting rid of that frustratingly annoying quality-of-life destroying cough. My doc would put me on it reluctantly each time because of long-term side effects. See what your doc says about it.

I can second that. Coming off of prednisone was awful, I just led in bad and shook, skin so sore I couldnt wear underwear! I have always had chromic sinus infections and coughs leading to mechanical laryngitis. I have found acupuncture to work incredibly well for the life long reflexive sniff habit I had formed as a result. After two sessions, I suddenly realised I’d stopped every few seconds. I still go regularly for my idiopathic neuropathy but the sniff usually stays gone apart from really hot, polluted days like today. I know which Id prefer, but sadly like most medical things, acupuncture doesn't work for everyone, and had no effect on my husbands hay fever.

Yes acupuncture works great for some and not for others. Having said what I did above about steroids, I still will always turn to them for my sinus/throat infections as they are the only thing that clears the inflammation. At least until something better is discovered.

Obviously I spoke with my doctor, she prescribed it for my back. The unexpected benefit was, here I am day 15 off the prednisone, and still haven't coughed. I'm not saying it's a solution, prednisone has horrible side effects. I'm simply saying that, in lieu of the horrible 'treatments' used for this condition; steroid neck shots, epileptic drugs, anti-depression meds (none of which help) it is a godsend to not have to cough for so many days. Maybe, just maybe, some researcher somewhere, somehow, may start to wonder how/why prednisone stopped the cough and come up with a better treatment. Lord knows there's very little research for this condition. And at my age, it's a little bit more than an 'annoying' condition.

Oh I totally understand how tremendous the relief would be after years of coughing. Mine’s been decades long. Of course it’s more than annoying. I also described it as “quality-of-life destroying”. Good luck.

My coughing started in 2011 and only intensified in severity. Cough syrup is not a relief. I've withdraw from social activities.

Welcome @olbarnard, It must be difficult to have had the chronic cough along with your Laryngeal Sensory Neuropathy diagnosis for over 11 years. I know you mentioned the over the counter stuff for coughs has not been helpful. I did see some information from the American Laryngological Association that lists different things that might help with the associated cough.

-- Chronic Cough, Irritable Larynx, and Sensory Neuropathy:
https://alahns.org/wp-content/uploads/CLC/39-CLC-Chronic-cough.pdf

Have you tried Respiratory retraining therapy which the above document says is an effective treatment for irritable larynx and chronic cough?

Dr. Michael Johns at KECK Medical (USC).

@tkubby
Make that 3. I have been suffering terribly from this condition for over ten years now. Everything you describe is exactly what Ive experienced. I also have chronic Intractable migraine, fibromyalgia (so they think), three herniated disc in my lumbar spine. This unbearable daily coughing is, I believe, taking years off my life. I am currently under the care of Cleveland Clinics Cough Clinic and ENT. I live in Michigan, its not a short hike, but Ive exhausted all specialist here. They have had me taking 150mg of Tramadol/per day. Which helped minimally, but does provide some relief, maybe 30 to 40%. Now the ENT has started throat injections with steroid & lidocaine. They want to do a set of 3, 3 months apart. However, the first set last month Feb, I was absolutely miserable for 3 days post. My cough worsened, I cough all day, the severe sensitivity to air passing through my throat returned with avengence and still has only lessened very little. Now theyre weaning me off Tramadol, which Im completely baffled by since the injections are not helping at all yet. Im beyond frustrated, depressed, hopeless! I go for second set this month, 14th. Im nervous! Doctors said they will probably omit the lidocaine this time, they think it may have created more of a problem, I dont understand why, but hey, theyre the experts, right? My life is distressing, I dont socialize out of a home anymore, going to stores is stressful, going anywhere is stressful. Everything makes me cough, right down to the Nutella I spread on my daughters toast. Im 53, to look at me you'd say I was a picture of health, but literally everyday of my life I feel 80. The only time in this past 10 plus years Ive had any break from this coughing was during my recovery from a double mastectomy in 2016(stg 1 breast CA). I was on Percocet or Oxycodone. Then thereafter for 3 other related surgeries. Sucks... I surely cant stay on strong Opiates. But believe me, Ive been so desperate that I have considered it. I just need help. I cant imagine living out the rest of my life this way. They tell me they have 3 meds in the works, waiting for FDA approval, specifically for LSN. Im holding onto hope they'll be available those of us who suffer with this soon. I dream of what it would be like to not cough anymore, but refrain from that thought too much, as its very painful. My best to you all. Would be nice to converse more with you who suffer from this. The support is so welcomed. Thank you for this post. Ive been searching for other.

In 2016 I woke up one morning with the worst sore throat I’ve ever had. It was so painful to swallow, I tried every which way I could to prevent swallowing. I saw a physician who said it was probably strep. She gave me a round of antibiotics. Two weeks later, 14 lbs lighter and with extreme fatigue went to the ER and found out I had mono. Several weeks later I was almost back to normal except for the cough. I coughed all day long . The only time I had relief was upon awakening in the morning. It was good until I had the first bite of food. Upon swallowing it would trigger a tickle as the food passed a certain location down my throat. I learned pretty quickly that drinking ice water alleviated it quite a bit. Months past I still had this cough. Every time I saw a physician about it they would prescribe me a new kind of cough suppressant. One day three or four months later, I happened on a blog about someone who described all the same symptoms I was experiencing, and that for years she was classified as having “ a mystery cough”. After several years someone finally diagnosed her with having “ laryngeal sensory neuropathy”. She mentioned she cried tears of joy upon making this discovery. Like her, my symptoms include a cough triggered by swallowing my first bit of food. Once the coughing jag stops, I can usually finish my meal in relative silence. I always have ice water when I eat. I also noticed that foods lime crackers were the worst offenders, Triscuits winning the all time offender. Other things like inhaling cold brisk air, smoke, changing sleep positions from the right to the left, post nasal drip, singing, talking on the phone too long all can trigger a coughing jag. What follows the cough is about 30 minutes of throat clearing, which is far more annoying than the cough.

I’m going to fast forward to today and summarize where I landed 6 years later. I’ve talked to several doctors, 3 ENTs and one neurologist. The ENTs all indicate the cough is one of two things; reflux or allergies. I’ve done a barium swallow, a chest X-ray, a scope down my throat (twice) and all show no anomalies. The one ENT who ordered the barium swallow was so convinced I had reflux that upon obtaining the results exclaimed “so why do you think you cough?” Another was so excited to show me my post nasal drip on the monitor as the culprit. No matter that I had these symptoms for years before I got sick, and never had a problem coughing.
Only one nurse practitioner was willing to give me the benefit of doubt and prescribed me Gabapentin to try. It took care of about 75 % of the problem but the effects started to wear off in about 90 days. I stopped it.
So today I still cough. Certain days are worse than others. I maximize my efforts to try to keep it at bay. I use a netty-pot regularly to keep the post nasal drip to a minimum. Chewing gum seems to help to keep the acid neutralized in my system that seems to prevent the tickle trigger. Spivey V8 juice swallowed before the first bite of food was another trick I learned, (probably not so good with reflux) but effective to a degree.
I’ve heard of Botox injections , but that doesn’t seem like anything I want to try.