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.

@erikas

@joanna48 Welcome to Mayo Clinic Connect, a place to give and get support.

We are happy you found Connect too.

You'll notice I moved your question to an existing discussion on larynx sensory neuropathy. I did this so you could connect with members like @avmcbellar @arlinebringhurst @tkubby @kimduncan1211 in a central location.

You may wish to scroll through the previous posts in search of information and connection.

May I ask how you are managing larynx sensory neuropathy and MAC lung disease?

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Hi Erika. I only recently self diagnosed with larynx sensory neuropathy. The specialists who have seen me so far have yet to catch up! I research health issues in depth reading a variety of material including medical journals . I did this with MAC which was identified in 2016. Fortunately have been stable for 2 years. I refused treatment in 2017 after I learned about some of the side effects caused by prolonged use of the 3 antibiotics that are the standard treatment. I am now interested in the different medications that might relieve my LSN. I have a good speech pathologist and a general practitioner (regular Doctor). I am adapting to small meals of soft food and no talking while eating. My health could be a lot worse …I'm aware of this. I would like to know whether LSN is an uncommon complaint?? Most of the posts on the discussion of this date back to 2019.

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@joanna48

Hi Erika. I only recently self diagnosed with larynx sensory neuropathy. The specialists who have seen me so far have yet to catch up! I research health issues in depth reading a variety of material including medical journals . I did this with MAC which was identified in 2016. Fortunately have been stable for 2 years. I refused treatment in 2017 after I learned about some of the side effects caused by prolonged use of the 3 antibiotics that are the standard treatment. I am now interested in the different medications that might relieve my LSN. I have a good speech pathologist and a general practitioner (regular Doctor). I am adapting to small meals of soft food and no talking while eating. My health could be a lot worse …I'm aware of this. I would like to know whether LSN is an uncommon complaint?? Most of the posts on the discussion of this date back to 2019.

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@joanna48, you may also be interested in following the MAC group here on Mayo Clinic Connect:
– MAC & Bronchiectasis https://connect.mayoclinic.org/group/mac-bronchiectasis/

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@2011panc

@tkubby I have not been told that I have larynx sensory neuropathy. I have noticed changes in my voice and throat that I associate with reflux and many intubations. My throat is sensitive (mildly achy) most of the time and my voice is scratchy. I almost always have a buildup of phlegm in my throat. I do not talk as much as I once did and no longer attempt to sing. I used to talk quite a lot and sang in choirs since my youth. I can no longer do phone work because after 1/2 day I lose my voice. Are these symptoms similar to yours?

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I have recently self diagnosed with LSN after having various tests done including manometry and videofluroscopy. I trace my cough back to years of untreated reflux. I often cough over food and have to really limit my diet fo soft foods. There don't seem to be many folk on this blog with LSN…I wonder if it is an uncommon complaint. Do you know? I am getting some swalloing and cough speech therapy which so far has not made any difference. I wonder if you are still on this blog. If so I would appreciate hearing from you.

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@tkubby

I have tried Gabapentin, amitriptyline and currently taking tramadol but cough is not getting any better. In fact, it is getting progressively worse. I also received a nerve block but no response to that. I am being treated at a cough clinic and they said they are out of suggestions for me. I don’t know where else to turn. It is affecting me daily and is very depressing.

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Hello… I am Janet and have been diagnosed with laryngeal Sensory Neuropathy x20yrs. with chronic spasmatic cough. Years ago it was so severe waking me in the middle of night producing loads of phlegm which constricted my breathing. So off to the ER where I was given Prednisone and I finally would get peace from my coughing. Now I always keep Prednisone tablets as a rescue medicine I first saw an allergist who started me on inhalers thinking I had asthma because I would have trouble breathing during a coughing fit. The inhalers did not help. Finally was tested for asthma and told I did not have it. So off to Ohio State and the doctors started me on Tramadol 2x a day and Lyrica 2 a day
with about 80% improvement. But the 20% does cause havoc with my daily life. Ohio State diagnosed my coughing cause of overactive laryngeal throat nerves. I never know when the coughing fit will hit me. The cough will produce lots of clear phlegm. When attending any function I always take Robitussin. Sometimes my cough is so strong the Robitussin doesn't work. The doctor gave me Phenergan/codeine to use when all else fails and it definitely stops my coughing but who wants to be sleepy during the day. But I have to resort to taking it if I've had a bad coughing day and have to be around people. My enjoyment is working outside tending my flowers and plants. I invariably will have a coughing fit so added Zyrtec daily even though I took allergy shots x 2 yrs and was told I was allergy free! I've tried everything I could think of to completely banish my cough. But using Tramadol and Lyrica have helped immensely. Hope this helps.

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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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I've had chronic throat clearing for nearly 40 years. resulting as best as I can recall from a flu or cold back then. It is nearly debilitating at times and affects my ability to teach, lecture, public speaking, etc. I've tried reflux and post-nasal meds as well as gabapentin and other meds to no avail. It sometimes seems to come out of nowhere. It has also become psychosomatically induced (if that's the right term) – even thinking about it causes the need to clear my throat to start.

Some foods can affect it: ice cream sometimes, coffee sometimes (which I usually limit to less than a cup or so a day). But I've tried a low-acid diet, eliminating citrus, caffeine, vinegar, etc., which didn't substantially help.

When it gets really bad, I resort to prednisone. But obviously I can't do that on a regular basis.

My ENT says Botox is not recommended for this because it can affect the vocal chords. (I brought up Botox after my own research.)

I really need suggestions. I'm also interested in trying hypnosis to address the psychosomatic aspect.

Thanks!

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@greenbergman

I've had chronic throat clearing for nearly 40 years. resulting as best as I can recall from a flu or cold back then. It is nearly debilitating at times and affects my ability to teach, lecture, public speaking, etc. I've tried reflux and post-nasal meds as well as gabapentin and other meds to no avail. It sometimes seems to come out of nowhere. It has also become psychosomatically induced (if that's the right term) – even thinking about it causes the need to clear my throat to start.

Some foods can affect it: ice cream sometimes, coffee sometimes (which I usually limit to less than a cup or so a day). But I've tried a low-acid diet, eliminating citrus, caffeine, vinegar, etc., which didn't substantially help.

When it gets really bad, I resort to prednisone. But obviously I can't do that on a regular basis.

My ENT says Botox is not recommended for this because it can affect the vocal chords. (I brought up Botox after my own research.)

I really need suggestions. I'm also interested in trying hypnosis to address the psychosomatic aspect.

Thanks!

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@jaygats, welcome back. @bakergirl talks about getting good care at Mayo Clinic in Arizona with both a doctor and vocal therapist. See the exercises and recommendations she posted here: https://connect.mayoclinic.org/comment/241178/
Might traveling to AZ be a possibility for you?

I'm also tagging @tkubby @mjahall @kimduncan1211 @cbcbasket @wlesikar @arlinebringhurst @sj1950 @jnttaz @joanna48 to see if they have LSN physician recommendations for California.

Welcome @greenbergman. In an earlier message, @johnbishop shared this link.
– Laryngeal Sensory Neuropathy How to Diagnose & Treat and its Relation to LPR https://www.wipeoutreflux.com/laryngeal-sensory-neuropathy/

Has the root cause of your chronic throat clearing been determined?

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@colleenyoung

@jaygats, welcome back. @bakergirl talks about getting good care at Mayo Clinic in Arizona with both a doctor and vocal therapist. See the exercises and recommendations she posted here: https://connect.mayoclinic.org/comment/241178/
Might traveling to AZ be a possibility for you?

I'm also tagging @tkubby @mjahall @kimduncan1211 @cbcbasket @wlesikar @arlinebringhurst @sj1950 @jnttaz @joanna48 to see if they have LSN physician recommendations for California.

Welcome @greenbergman. In an earlier message, @johnbishop shared this link.
– Laryngeal Sensory Neuropathy How to Diagnose & Treat and its Relation to LPR https://www.wipeoutreflux.com/laryngeal-sensory-neuropathy/

Has the root cause of your chronic throat clearing been determined?

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thanks, @colleenyoung, yes AZ is possible, ideally of course if those tagged can recommend someone between San Diego and Los Angeles that would be ideal.

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@colleenyoung

@jaygats, welcome back. @bakergirl talks about getting good care at Mayo Clinic in Arizona with both a doctor and vocal therapist. See the exercises and recommendations she posted here: https://connect.mayoclinic.org/comment/241178/
Might traveling to AZ be a possibility for you?

I'm also tagging @tkubby @mjahall @kimduncan1211 @cbcbasket @wlesikar @arlinebringhurst @sj1950 @jnttaz @joanna48 to see if they have LSN physician recommendations for California.

Welcome @greenbergman. In an earlier message, @johnbishop shared this link.
– Laryngeal Sensory Neuropathy How to Diagnose & Treat and its Relation to LPR https://www.wipeoutreflux.com/laryngeal-sensory-neuropathy/

Has the root cause of your chronic throat clearing been determined?

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Thanks @colleenyoung . A theory (just a theory) is a damaged nerve caused by that flu/cold years ago. The ENT is insisting it's reflux or post-nasal drip or both. But meds don't bear this out. A neurologist diagnosed it as a vocal motor tic. (But doctors tend to diagnose what they know.) Neither Gabapentin nor Klonopin helped, though.

And the psychosomatic aspect complicates it.

(I've also noticed that wearing masks can bring it on.)

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@colleenyoung

@jaygats, welcome back. @bakergirl talks about getting good care at Mayo Clinic in Arizona with both a doctor and vocal therapist. See the exercises and recommendations she posted here: https://connect.mayoclinic.org/comment/241178/
Might traveling to AZ be a possibility for you?

I'm also tagging @tkubby @mjahall @kimduncan1211 @cbcbasket @wlesikar @arlinebringhurst @sj1950 @jnttaz @joanna48 to see if they have LSN physician recommendations for California.

Welcome @greenbergman. In an earlier message, @johnbishop shared this link.
– Laryngeal Sensory Neuropathy How to Diagnose & Treat and its Relation to LPR https://www.wipeoutreflux.com/laryngeal-sensory-neuropathy/

Has the root cause of your chronic throat clearing been determined?

Jump to this post

Sorry I can't be of help since I live in Ohio. Ohio State gave me the most help by prescribing Tramadol and Lyrica to help control my chronic spasmodic cough. Then after testing diagnosed my problem as Laryngeal Sensory Neuropathy. I'm about 80% cured but the remaining percent can still wreck havoc with my life. I wish you luck in finding a doctor in California who can help.

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