Larynx 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.

Liked by thomsong, Dee, cathylc58

@jenniferhunter I'm sorry for the delay in responding. To answer a couple questions, my chronic cough does not get better when I am up north. I'm with you on the question of, if there is something dripping down my throat and a nerve is cut, how would I know to clear it so it doesn't end up in my lungs causing pneumonia. It just doesn't seem like an ideal option. @johnbishop one thing to consider about the study "Altering cough reflex sensitivity with aerosolized capsaicin paired with behavioral cough suppression" is that my chronic cough can make my throat so raw that I can taste blood. Salsa will burn my throat badly enough it caused tears to fall, so I'm not sure how eager I'd be to try the sprayed capsaicin. Has anyone tried Lyrica successfully? I came off the gabapentin and am back on the amitriptyline, have been for months now. Still coughing. It's not touching it. So far the only thing that quiets this down is Tramadol, which I'm blowing through now a lot fast than when I just used it for my RLS – but when you're exhausted and your throat is raw, you just break down and take it just to get it to stop. It's crazy how something works for one person but not for someone else. On top of everything, the Amitriptyline has caused a 20 lb weight gain after I had just lost all of that. I read one person said they no longer try to sing. I, too, absolutely loved to sing and was going to audition for a band once upon a time. Now, I don't even try anymore because it will trigger coughing fits. I find I don't really want to talk to anyone who calls my office phone because I can't NOT cough while I'm on the call. When I leave work, I don't want to talk at all, just sit quietly so I can try to get it to settle down. There's no quality of life when you're exhausted by the time you get home because of it. I just wish DOCTOR'S and people who don't suffer from this could really grasp that it's not "just a cough". @tkubby I'm with you on the "I can't imagine living the rest of my life like this." I'm 49 years old.

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@kimduncan1211

@jenniferhunter I'm sorry for the delay in responding. To answer a couple questions, my chronic cough does not get better when I am up north. I'm with you on the question of, if there is something dripping down my throat and a nerve is cut, how would I know to clear it so it doesn't end up in my lungs causing pneumonia. It just doesn't seem like an ideal option. @johnbishop one thing to consider about the study "Altering cough reflex sensitivity with aerosolized capsaicin paired with behavioral cough suppression" is that my chronic cough can make my throat so raw that I can taste blood. Salsa will burn my throat badly enough it caused tears to fall, so I'm not sure how eager I'd be to try the sprayed capsaicin. Has anyone tried Lyrica successfully? I came off the gabapentin and am back on the amitriptyline, have been for months now. Still coughing. It's not touching it. So far the only thing that quiets this down is Tramadol, which I'm blowing through now a lot fast than when I just used it for my RLS – but when you're exhausted and your throat is raw, you just break down and take it just to get it to stop. It's crazy how something works for one person but not for someone else. On top of everything, the Amitriptyline has caused a 20 lb weight gain after I had just lost all of that. I read one person said they no longer try to sing. I, too, absolutely loved to sing and was going to audition for a band once upon a time. Now, I don't even try anymore because it will trigger coughing fits. I find I don't really want to talk to anyone who calls my office phone because I can't NOT cough while I'm on the call. When I leave work, I don't want to talk at all, just sit quietly so I can try to get it to settle down. There's no quality of life when you're exhausted by the time you get home because of it. I just wish DOCTOR'S and people who don't suffer from this could really grasp that it's not "just a cough". @tkubby I'm with you on the "I can't imagine living the rest of my life like this." I'm 49 years old.

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I’ve had great success with the medical marijuana. It’s worth a try.

Liked by kimduncan1211

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I have had a chronic cough for going on 5 years now following a bout with mono. It all started with a very bad sore throat which was concentrated on the left side of my throat. Months after my episode and many consults with doctors, I went on line one day and ran across someone suffering from Laryngeal Sensory Neuropathy and am convinced this is what I have. I have done chest X-rays, barium swallow and a scope in my throat – all normal ranges. One health care provider prescribed Gabapentin and it worked for about 3 months but eventually quit working. My cough starts with a tickle when I swallow my first bite of food. The tickle is in the very spot where the sore throat was. Crumby things like cookies and crackers are the worst. Once I have my coughing jag, it is followed by constant throat clearing and phlegmy throat for a half an hour or so. I can never eat without having a glass of ice water on hand which seems to calm it down. Post nasal drip or anything that affects that area such as inhaling smoke, cold air after being in a war room can trigger the tickle. I’ve heard about the Borox I he toons but I’m a little freaked about that. The biggest frustration is not being heard by my doctors.

Liked by thomsong

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@arlinebringhurst

I have had a chronic cough for going on 5 years now following a bout with mono. It all started with a very bad sore throat which was concentrated on the left side of my throat. Months after my episode and many consults with doctors, I went on line one day and ran across someone suffering from Laryngeal Sensory Neuropathy and am convinced this is what I have. I have done chest X-rays, barium swallow and a scope in my throat – all normal ranges. One health care provider prescribed Gabapentin and it worked for about 3 months but eventually quit working. My cough starts with a tickle when I swallow my first bite of food. The tickle is in the very spot where the sore throat was. Crumby things like cookies and crackers are the worst. Once I have my coughing jag, it is followed by constant throat clearing and phlegmy throat for a half an hour or so. I can never eat without having a glass of ice water on hand which seems to calm it down. Post nasal drip or anything that affects that area such as inhaling smoke, cold air after being in a war room can trigger the tickle. I’ve heard about the Borox I he toons but I’m a little freaked about that. The biggest frustration is not being heard by my doctors.

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Hello @arlinebringhurst, Welcome to Connect. It must be frustrating not being heard by your doctors. Have you thought about trying to get a second opinion to find a treatment? Here are some links from earlier in this discussion that may offer some help.

Use of Botulinum Toxin Type A for Chronic Cough
https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/496294

Botox may quiet chronic cough
https://www.reuters.com/article/us-botox-cough/botox-may-quiet-chronic-cough-idUSTRE64Q5GQ20100527

Treatment of chronic neurogenic cough with in-office superior laryngeal nerve block.
https://www.ncbi.nlm.nih.gov/pubmed/29668037

@tkubby @mjahall and @kimduncan1211 may have some suggestions for you.

Liked by thomsong

REPLY
@johnbishop

Hello @arlinebringhurst, Welcome to Connect. It must be frustrating not being heard by your doctors. Have you thought about trying to get a second opinion to find a treatment? Here are some links from earlier in this discussion that may offer some help.

Use of Botulinum Toxin Type A for Chronic Cough
https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/496294

Botox may quiet chronic cough
https://www.reuters.com/article/us-botox-cough/botox-may-quiet-chronic-cough-idUSTRE64Q5GQ20100527

Treatment of chronic neurogenic cough with in-office superior laryngeal nerve block.
https://www.ncbi.nlm.nih.gov/pubmed/29668037

@tkubby @mjahall and @kimduncan1211 may have some suggestions for you.

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I have to say Botox injections were not high on my list of cures but I may be rethinking it since I have nowhere left to go. The coughing has definitely affected the quality of my life. Talking for any length of time, singing, eating all contribute to coughing episodes. The most normal I feel is upon awakening in the morning. It seems not using my voice box all night seems to quiet that nerve down. Of course it all starts up the minute I swallow the first bite of food. My friends all know if I talk on the phone long enough that I will at some point start coughing. I cannot sing either. On occasion I have tried Tabasco on my food. Though it could also be a trigger for a coughing spell, I have noticed it numbs the area and quiets it down pretty quick.

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@arlinebringhurst

I have to say Botox injections were not high on my list of cures but I may be rethinking it since I have nowhere left to go. The coughing has definitely affected the quality of my life. Talking for any length of time, singing, eating all contribute to coughing episodes. The most normal I feel is upon awakening in the morning. It seems not using my voice box all night seems to quiet that nerve down. Of course it all starts up the minute I swallow the first bite of food. My friends all know if I talk on the phone long enough that I will at some point start coughing. I cannot sing either. On occasion I have tried Tabasco on my food. Though it could also be a trigger for a coughing spell, I have noticed it numbs the area and quiets it down pretty quick.

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@arlinebringhurst have you seen the following discussion? I was wondering if it might be something else to consider. One of the symptoms is chronic cough.

> Groups > Lung Health > Breathing problem: Silent Reflux a hidden epidemic
https://connect.mayoclinic.org/discussion/breathing-problem-silent-reflux-a-hidden-epidemic/

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@arlinebringhurst

I have had a chronic cough for going on 5 years now following a bout with mono. It all started with a very bad sore throat which was concentrated on the left side of my throat. Months after my episode and many consults with doctors, I went on line one day and ran across someone suffering from Laryngeal Sensory Neuropathy and am convinced this is what I have. I have done chest X-rays, barium swallow and a scope in my throat – all normal ranges. One health care provider prescribed Gabapentin and it worked for about 3 months but eventually quit working. My cough starts with a tickle when I swallow my first bite of food. The tickle is in the very spot where the sore throat was. Crumby things like cookies and crackers are the worst. Once I have my coughing jag, it is followed by constant throat clearing and phlegmy throat for a half an hour or so. I can never eat without having a glass of ice water on hand which seems to calm it down. Post nasal drip or anything that affects that area such as inhaling smoke, cold air after being in a war room can trigger the tickle. I’ve heard about the Borox I he toons but I’m a little freaked about that. The biggest frustration is not being heard by my doctors.

Jump to this post

Hi, @arlinebringhurst – just a thought, since I've also dealt with chronic cough and went through a lot of testing for reflux, sinus issues, allergy, asthma, etc., plus various medications. What finally seems to have helped me is taking mometasone and formoterol (Dulera). It may have also helped me to move from a 70-year-old home to a 20-year-old one.

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Hi @arlinebringhurst, @johnbishop. Regarding the chronic cough, take a look at the current medications being taken. Some medications list cough as a side effect. My mother had a cough for years and would tell me at first it was allergies to pollen, then g-acid-reflux disease. Lastly it was poison ivy. She made no sense so I looked up each and every medication and sure enough several had a cough side effect.

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@wlesikar

I’ve had a a chronic cough for 3-4 years now and was diagnosed with LSN about 6 months ago. My cough was mostly after eating and when waking up in the mornings. Amitriptyline was working well until I got the flu and now it has come back. I’m just curious if you all are taking other medication with whatever you may taking now to help with what caused the nerve damage originally if it were due asthma or reflux? If the underlying condition is not being treated the nerve medication you are taking may not be strong enough to get rid of the cough alone. I take a pretty strong dose of reflux medication which is believed to be the cause of LSN to begin with or contributed to it being irritated. Just a thought, you may need to be treated for more than one issue here. Whatever it is I hope everyone here gets some relief, this cough is an embarrassing life changing cough that makes it hard to function sometimes.

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I am told that because the nerve has become hypersensitive , reflux or allergies that normally wouldn’t affect you causes the irritation that triggers the cough. I did the barium swallow and know that I have a very mild case of reflux as well as allergies. Acid seems to be a trigger as well. When both the reflux and allergies are managed well, it does reduce my cough but not eliminate it. I ALWAYS cough with my first bite of food. It is the exact location of a sore throat I had at the onset of mono. It is on my left side of my throat and the food causes an immediate tickle. It is definitely life altering. I even fear going to the dentist now for fear I have a coughing jag.

Liked by Lisa Lucier

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@lisalucier

Hi, @arlinebringhurst – just a thought, since I've also dealt with chronic cough and went through a lot of testing for reflux, sinus issues, allergy, asthma, etc., plus various medications. What finally seems to have helped me is taking mometasone and formoterol (Dulera). It may have also helped me to move from a 70-year-old home to a 20-year-old one.

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Not familiar with either of those meds but I will investigate.

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I developed a cough when I was in college – it got worse quickly. I noticed that it was worst when I was studying Algebra – no kidding! In Algebra class, I started coughing convulsively until I got muscle cramps in my abdomen – I had to step out so the other students could hear the professor. My algebra book was brand new … I figured out that micro-particles from the ink were floating into the air as I read, it was printed in soy ink, I'm allergic to soy beans. I started wiping each page with a slightly humid cloth before I read it to keep the particles down. I coughed less, I muddled through that class and escaped with a B. Peggy

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@arlinebringhurst

I am told that because the nerve has become hypersensitive , reflux or allergies that normally wouldn’t affect you causes the irritation that triggers the cough. I did the barium swallow and know that I have a very mild case of reflux as well as allergies. Acid seems to be a trigger as well. When both the reflux and allergies are managed well, it does reduce my cough but not eliminate it. I ALWAYS cough with my first bite of food. It is the exact location of a sore throat I had at the onset of mono. It is on my left side of my throat and the food causes an immediate tickle. It is definitely life altering. I even fear going to the dentist now for fear I have a coughing jag.

Jump to this post

Those are my exact conditions, I was on gabapentin for a bit had improvement but had side effects ; so went on Lyrica last 2 months. Its helped make it more manageable but first bit of food triggers it for 1-2 hours. Lyrica causing me to gain +15 pounds in 8 weeks so going to get off and try something else I hope. I have been suffering since I had bronchitis in Feb 2019. Cough was chronic before the drugs but just maintainable now but no cure and side effects from drugs not helping

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@jaygats

Those are my exact conditions, I was on gabapentin for a bit had improvement but had side effects ; so went on Lyrica last 2 months. Its helped make it more manageable but first bit of food triggers it for 1-2 hours. Lyrica causing me to gain +15 pounds in 8 weeks so going to get off and try something else I hope. I have been suffering since I had bronchitis in Feb 2019. Cough was chronic before the drugs but just maintainable now but no cure and side effects from drugs not helping

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Hi @jaygats, Welcome to Connect. I ran across this blog that seems like it might be helpful.

Laryngeal Sensory Neuropathy How to Diagnose & Treat and its Relation to LPR
https://www.wipeoutreflux.com/laryngeal-sensory-neuropathy/

Did your doctor diagnose you with Laryngeal Sensory Neuropathy?

Liked by Lisa Lucier, lola17

REPLY
@jaygats

Those are my exact conditions, I was on gabapentin for a bit had improvement but had side effects ; so went on Lyrica last 2 months. Its helped make it more manageable but first bit of food triggers it for 1-2 hours. Lyrica causing me to gain +15 pounds in 8 weeks so going to get off and try something else I hope. I have been suffering since I had bronchitis in Feb 2019. Cough was chronic before the drugs but just maintainable now but no cure and side effects from drugs not helping

Jump to this post

I tried putting hot sauce on my first bite of food, and it does coat the area and gives it a numbing effect. I read in another blog about capsaicin spray. Not sure it wouldn’t aggravate reflux symptoms.

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@arlinebringhurst

I tried putting hot sauce on my first bite of food, and it does coat the area and gives it a numbing effect. I read in another blog about capsaicin spray. Not sure it wouldn’t aggravate reflux symptoms.

Jump to this post

I tried the pepper capsule supplements at each meal. Most of the time the “heartburn” sensation got eliminated. I eat spicy foods too which I think help.

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