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.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

@johnbishop

Hello @tkubby, welcome to Mayo Clinic Connect. — I'm tagging @alaskaann, @jeffrow, @steeldove, @2011panc who have all discussed autonomic neuropathy in a previous post. Hopefully they can share their thought and suggestions with you.

Mayo Clinic has information on the diagnosis and treatment for autonomic neuropathy here:
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

I did find a couple of sites that may be helpful.

What LPR Has to Do with Laryngeal Sensory Neuropathy & Chronic Cough
-- https://www.refluxgate.com/laryngeal-sensory-neuropathy

Pregabalin Shows Promise as Treatment Option for Laryngeal Sensory Neuropathy
-- https://www.enttoday.org/article/pregabalin-shows-promise-as-treatment-option-for-laryngeal-sensory-neuropathy/

Have you been recently diagnosed with larynx sensory neuropathy?

John

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Yes. I've suffered from the 'chronic cough' that went undiagnosed by a number of specialist for 6-7 years. I am now being treated for laryngeal neuropathy. I'd like to learn more about what is in my future?

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@mrspgee1948

Yes. I've suffered from the 'chronic cough' that went undiagnosed by a number of specialist for 6-7 years. I am now being treated for laryngeal neuropathy. I'd like to learn more about what is in my future?

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Welcome @mrspgee1948, There is another discussion that you might find helpful for meeting others with chronic cough associated with laryngeal sensory neuropathy.
--- Laryngeal Hypersensitivity and Nerve Pain: What helps?: https://connect.mayoclinic.org/discussion/laryngeal-hypersensitivity-and-nerve-pain/

It can be difficult not knowing what the future holds after receiving a new diagnosis. Your wanting to learn more about the condition is one of the best things you can do to help yourself. I think this article may answer a few questions you might have and members here on Connect are a valuable resource for asking questions and sharing experiences.
--- Laryngeal sensory neuropathy: All you need to know: https://www.medicalnewstoday.com/articles/laryngeal-sensory-neuropathy

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I'm on my eighth year with was was diagnosed as chronic cough. After many specialist and meds I never got better. Recently I visited an ENT who has narrowed down the symptoms over the years and diagnosed the condition as laryngeal neuropathy. I've been recently diagnosed and haven't found very much online other than a description of the symptoms. I have a second appointment with my ENT and will have plenty to ask. I'd like hear if anyone reading this has any experience with laryngeal neuropathy. I'm alway tired (due to lack of sleep), have headaches, often out of breath etc. Thank you kindly for any response from this group.

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I have suffered from increasing instances of throat clearing for the past 5-6 years which is definitely affecting the quality of my life! I have not been formally diagnosed with Laryngeal Sensory Neuropathy but I am feeling rather desperate and would appreciate any help you can suggest.
My GP recently prescribed Elavil after visits to an ENT specialist (including endoscopy) and a Gastroenterologist (including allergy testing and reflux medications) however the Elavil as well as all other efforts such as dietary changes have had little affect. Many thanks for any help you can suggest!

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I've had your condition going on 8 years. Initially diagnosed by ENT as LSN and spent 2 yrs taking different meds from him. Nothing worked so went on to Pulmonologist. Again 3 different meds and this doc said I had been misdiagnosed with LSN and what I really had was COPD. None of the meds he prescribed did anything but make me worse. Then went to Gastroenterologist who prescribed PPI's that also didn't work but made me sick. Currently just putting up with it and watching for triggers that start the cough...heat, smells, stress. I'd like to be more positive but the truth is, doctors just don't know in many cases what this is, why we have it, or how to fix it. If you find anything that helps please post. Good luck.

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@texanna

I've had your condition going on 8 years. Initially diagnosed by ENT as LSN and spent 2 yrs taking different meds from him. Nothing worked so went on to Pulmonologist. Again 3 different meds and this doc said I had been misdiagnosed with LSN and what I really had was COPD. None of the meds he prescribed did anything but make me worse. Then went to Gastroenterologist who prescribed PPI's that also didn't work but made me sick. Currently just putting up with it and watching for triggers that start the cough...heat, smells, stress. I'd like to be more positive but the truth is, doctors just don't know in many cases what this is, why we have it, or how to fix it. If you find anything that helps please post. Good luck.

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It seems like there are many of us with this mysterious chronic cough/throat clearing condition. Have had it for decades, originally thought it a bout of bronchitis. And then it continued. Saw multiple ENTs, GI docs, allergists, a pulmonologist, speech therapist. They call it multifactorial and so I take PPI, allergy meds, none of which address the issues. I wish I had answers for all of you for this (thank goodness) not serious but nonetheless quality of life issue. It would be interesting as a group to find out if we have any common denominators, i.e. medications, illnesses, that might make things clearer. Anyway good luck to all.

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Thanks for the commiserating! You are right….not life threatening but definitely a life-altering symptom. And you are right about physicians not having any idea what to do. The ENT MD asked me if I thought it could be psychosomatic. Not helpful! I searched online for some answers which is where I came up with studies that showed promising results with Elavil and Pregabalin. Elavil has helped a little (very little actually) but I haven’t tried the other one. Has anyone on these posts taken pregabalin for LSN?

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@johnbishop

Welcome @mrspgee1948, There is another discussion that you might find helpful for meeting others with chronic cough associated with laryngeal sensory neuropathy.
--- Laryngeal Hypersensitivity and Nerve Pain: What helps?: https://connect.mayoclinic.org/discussion/laryngeal-hypersensitivity-and-nerve-pain/

It can be difficult not knowing what the future holds after receiving a new diagnosis. Your wanting to learn more about the condition is one of the best things you can do to help yourself. I think this article may answer a few questions you might have and members here on Connect are a valuable resource for asking questions and sharing experiences.
--- Laryngeal sensory neuropathy: All you need to know: https://www.medicalnewstoday.com/articles/laryngeal-sensory-neuropathy

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Thank you, John. The article is excellent and I may see if my MD will prescribe gabapentin. It’s rather awkward when you feel you know more about the condition that your doctor!

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I have a chronic cough as well. One ENT said that it was habit cough. My pulmonologist gave me gabapentin to see if it helps. I've been on it for a week and have seen no changes.
I read an article that said it could be a result of low vitamin b12 and/or low vitamin d. So I've started taking supplements for that. Don't know what else to do.
When the cough gets bad I start with cold sweats. Very life changing.

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I've had the cough for 5 years.

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