Anyone have Laryngeal Sensory Neuropathy?

Posted by tkubby @tkubby, Jan 23, 2019

I am looking to talk with anyone that has been told they have larynx sensory neuropathy. In other words, over active nerves in the larynx.

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@texanna

Well here is an interesting update. I have a severe back problem too, and am usually in a lot of pain. My doctor put me on a 9 day course of a steroid to reduce inflammation and lesson paid. 3x daily for 3 days, 2x daily for 3 days, 1x daily for 3 days. The first day took away ALL pain. After about 2 days I noticed I WAS NOT COUGHING ANYMORE. I did not cough for the rest of the treatment! Day 10 and I'm through with the medication and STILL NOT COUGHING. Even if this is a short respite from the cough, why in God's name, after SIX YEARS OF COUGHING, did not ONE SINGLE DOCTOR ever try this? I begged for 6 years for something, ANYTHING, to stop the cough, even if for a day or less, a night, so I could sleep. Not one doctor ever mentioned it. The steroid was prednisone, 20 mg. Not great side effects, but you feel fantastic for the first 4 or 5 days. Coming down is 'shakey.' Oh, and you're hungry…really hungry. Have celery, nuts, seeds, fruit on hand. Not oreos.

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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.

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@wendymb

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.

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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.

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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.

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@wendymb

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.

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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.

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@texanna

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.

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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.

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

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@olbarnard

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

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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?

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@jaygats

I was diagnosed with LSN 3 years ago, basically did it myself since docs seem useless. I just had another viral infection and the coughing has gotten very bad again. Does anyone know of any LSN medical experts in southern California? I am tired of going to ENT docs who seem to know little about it.

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Dr. Michael Johns at KECK Medical (USC).

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