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.

@tkubby

I have LSN so bad and I have found nothing to help me. Have tried everything the doctor has given me. Can you please let me know more about the kazoo breathing techniques or anything else that gives you a little relief. I can’t live like this. I don’t know what to do. Thank you.

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Also ice chips. Had I don’t know how many on a flight from Maui. But worked

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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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Hello @wlesikar, welcome to Connect. Thank you for sharing your symptoms. It must be difficult to deal with a chronic cough that you can't get rid of. @bakergirl, @tkubby, @budmeister, @cbcbasket, @jmjlove, and @lois6524 may be able to offer some suggestions or share their experience with you.

Has your doctor offered any suggestions to try?

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I recently was certified for medical marijuana. I have tried several different kinds and finally have had great success with CBD drops. They are a 10:1 ratio of CBD to THC. I was told that CBD works best when it is kept in your system constantly. It has helped tremendously with my sensory neuropathy cough. After many many years I have found some relief. I am still currently taking tramadol but would like to see if I can wean off of that and just continue with the CBD drops.

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@tkubby

I recently was certified for medical marijuana. I have tried several different kinds and finally have had great success with CBD drops. They are a 10:1 ratio of CBD to THC. I was told that CBD works best when it is kept in your system constantly. It has helped tremendously with my sensory neuropathy cough. After many many years I have found some relief. I am still currently taking tramadol but would like to see if I can wean off of that and just continue with the CBD drops.

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Hoping that maybe this information can help somebody else that’s suffering with the cough.

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@tkubby

I recently was certified for medical marijuana. I have tried several different kinds and finally have had great success with CBD drops. They are a 10:1 ratio of CBD to THC. I was told that CBD works best when it is kept in your system constantly. It has helped tremendously with my sensory neuropathy cough. After many many years I have found some relief. I am still currently taking tramadol but would like to see if I can wean off of that and just continue with the CBD drops.

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Glad to hear you are experiencing relief, @tkubby.

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@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.

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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.

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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.

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@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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