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.

Thank you. I have not discussed the surgery in detail but I'm so afraid of needles, I'm thinking of it over botox. My fear with the surgery is doing something permanent that might be a temporary (wishful thinking?) issue.

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@kimduncan1211

I moved to Texas in 2001. Soon after, whenever I got a cold, I ended up coughing horribly for 5 weeks after the cold ended. This usually happened at least twice a year. Fast forward to 2019 and I'd take that 5 weeks. I have now been coughing continuously for maybe 4 years. I have tried every cold and allergy medicine over the counter, have been given inhalers, all kinds of prescription drugs for a cough, steroids, antibiotics (which were probably unneeded), reflux meds, etc… I have seen at least 10 different doctors, not counting the walk-in clinics, as well as an allergist (showed zero allergies on the scratch test) and 3 ENTs. I then found information online from Dr. Bastian about Laryngeal Sensory Neuropathy (and the variety of ways they refer to this online) and finally felt like someone finally got what I was going through. I found other patients mortified by the coughing, gagging spells they went through as well; patients so tired of having to explain to good samaritans trying to help that the water, cough drop, honey, whatever holistic thing they offer, won't help (because you've tried everything) and then explaining what you have; patients who feel the need to tell everyone they are not contagious when you see people move away from you. It's difficult to work in an office of cubicles with this. I walked into a barbershop with my husband and, once some powder wafted over to me, I was sent into an embarrassing coughing fit, with tears streaming down my face, whole face turning red, and about 10 minutes before I could get it to calm down. People don't understand how a smell can trigger it, a laugh, talking, eating, drinking, BREATHING, anything. I just tell people it's a part of me now. Anyway, I am currently trying to work through Dr. Bastian's treatment. I tried the Amitryptiline, which appeared to help last fall, but didn't help after my last cold at max dose. I've been on the Gabapentin for a bit now, stepping it up as instructed. I'm at about 1800-2400 mg a day now. It's not touching the cough AND it's keeping me dizzy and nauseated all day (at work, it has me feeling like when I had a concussion – concentrating harder to type what I'm trying to say or do). I am weaning off of that right now. My ENT and I are regrouping at this point. The last 2 options I've been told (if meds don't work) are Botox shots to the throat and then surgery to cut that nerve. Neither of which are high on my list of things I want to do. One thing I have found… I take Tramadol for RLS flareups. When I take it, it stops my cough. I think it's working by killing the sensitivity of the nerve. It also dries up any sinus dripping, which we all know doesn't require much for us to start hacking. Anyway, there's my 2 (or 60) cents. I'm just hoping that this helps someone.

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@kimduncan1211 Your symptoms sound like a progression of allergies getting worse over time. I do have allergies and was told by my environmental medicine doctor that the best way to test allergies is with the maximum tolerated dose method. They test individual strengths of allergy extracts One by one to get the highest does that does not provoke growth of a wheal. they time it for 5 minutes and measure, and make a customized extract with a specific combination of things for my allergy shots. he told me that a lot of allergy tests are "one size fits all" and that they are not accurate. I have trouble with allergies in Texas as there is so much dust, pollen and it doesn't freeze putting plants into hibernation. I do use a HEPA filter with activated carbon filtration and wear a surgical mask sometimes that has the same filtration capability. They are 3M Procedure masks # 1820 with >99% efficiency @ 0.1 Micron particles. It sounds like your lungs are sensitive to every bit of allergen or dust that is inhaled. Mine are too, but not if I am in clean air. I use a HEPA filter running in my house and bedroom at night and have found relief. Allergy shots, inhalers, & antihistamines do help me, but they only go so far depending on how much exposure there is. Do you feel better if you are up north and away from Texas? I found that I'm allergic to my cats and that was enough to keep my lungs irritated so everything bothered me. I tried wearing the masks at night (when we are most vulnerable) and it made a huge difference. You certainly could test that or use a HEPA filter in a closed room and see if it makes a difference. I know that I wouldn't do well living in TX. My question is about the phlegm that builds up causing the coughing, and what happens to that if you cut the nerve? Coughing is your body's defense to clear stuff out. If the phlegm stays in the lungs (which has happened to me for some physical reasons & asthma), it's a breeding ground for germs to grow, like pneumonia. I've had a repeating pattern of chest infections until I recently figured this out.If you try some prevention with breathing purified air, you might get an answer.

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@mjahall

I have had laryngeal Sensory Neuropathy for 38 years. It started when I was a teenager just after I started healing from a horrible case of Mono. My case is very bad whereas I am chocking 40-50 times a day and night. I once traveled the country including the university of Michigan, University of Wisconsin Hospitals, Mayo Clinic, and many ENTs, etc., etc.. It wasnt until a local doctor told me what I had after two days of testing. Ive been on Gabapentin/amitriiptyine for years but this has only helped minimally. The only medication that gives me any type quality of life is Norco. I know this is not ideal, but given the alternative, it is a no brainer. Like I mentioned, I once days of testing at the Mayo clinic in Rochester Minnesota. After four days and a huge bill, they told me they couldn't find anything wrong and told me to learn how to control this choking. Obviously, if you have LSN, you know there is no controlling this. As an example, I was once awoken from general anesthesia and the doctor said we couldn't get you to stop choking and got worried. So again, there is no way of stopping these attacks. Im wondering if the Mayo ever realized this disease exists and can help some of us with this now.

I occasionally do my research to see if there are any advances toward this disease. It seems there isn't much. However, I heard of one doctor that has had some success with Botox injections. Has anyone heard of this? I think I'm going to get this done to see if it helps.

In addition to LSN, I have another disease that I have been fighting with. When this specialist looked at my medical records he was telling me that I shouldn't be taking all this Norco. (He did not know the reason). When I explained to him why I did, I knew he didn't believe me and I know what he was thinking. If I was not getting a prescription for the Norco, I would most likely find it another way. That is how bad this LSN is for me. Without Norco, I am choking 2-3 times an hour. In public, people think I'm choking on food. sometimes I have difficulty catching my breath.

My hope is that someday there will be a cure. I would love not having to take the meds. Until then, I dont see me stopping these meds. Im wondering if anyone has heard of anything safer than Norco.

Thanks,
Joe

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Hi Joe. I have had a chronic cough for 20 years. It started out with a mild cough and clearing of the throat but has continuously got worse and is a constant daily thing from the time I get up in the morning till I go to bed. I am also bothered with the cough during the night. Over the years I have had so many test (some of them repeated) and nothing was ever discovered to be causing the cough which was a good thing but yet I still was coughing. I’ve trued every thing I could think of or heard to try and no relief. I have had doctors tell me I was crazy and making myself cough. Nobody could ever make theirselves cough like I do. I cough so bad at times I gag and throw up. I pull muscles in my neck, chest and stomach. My heart beats so fast and pounds at times. It’s so very frightening. I finally went to a cough clinic at Cleveland Clinic. My process of elimination I was told I had LSN. I was put on Gabapentin, amitriptyline and currently taking tramadol several times a day. I still cough daily but if I stop the tramadol I cough non stop all day and night. I recently had a nerve block down in my neck but absolute no relief from that. I was told my only other option is Botox but there isn’t good results with the Botox so I do not want to try that. I don’t know where else to turn. I can’t imagine living the rest of my life like this.

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Joe, do you also have chronic sinus drainage? If you do, does it come out with the cough or does it go down your throat

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@tkubby

Hi Joe. I have had a chronic cough for 20 years. It started out with a mild cough and clearing of the throat but has continuously got worse and is a constant daily thing from the time I get up in the morning till I go to bed. I am also bothered with the cough during the night. Over the years I have had so many test (some of them repeated) and nothing was ever discovered to be causing the cough which was a good thing but yet I still was coughing. I’ve trued every thing I could think of or heard to try and no relief. I have had doctors tell me I was crazy and making myself cough. Nobody could ever make theirselves cough like I do. I cough so bad at times I gag and throw up. I pull muscles in my neck, chest and stomach. My heart beats so fast and pounds at times. It’s so very frightening. I finally went to a cough clinic at Cleveland Clinic. My process of elimination I was told I had LSN. I was put on Gabapentin, amitriptyline and currently taking tramadol several times a day. I still cough daily but if I stop the tramadol I cough non stop all day and night. I recently had a nerve block down in my neck but absolute no relief from that. I was told my only other option is Botox but there isn’t good results with the Botox so I do not want to try that. I don’t know where else to turn. I can’t imagine living the rest of my life like this.

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I've heard tramadol is very useful treating cough. No cure, but does help coughs that nothing else does. Not what it's for, but a nice side effect. Mild opiate like med. Might be worth a try. Prescription needed. Blessings!

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@tkubby

Hi Joe. I have had a chronic cough for 20 years. It started out with a mild cough and clearing of the throat but has continuously got worse and is a constant daily thing from the time I get up in the morning till I go to bed. I am also bothered with the cough during the night. Over the years I have had so many test (some of them repeated) and nothing was ever discovered to be causing the cough which was a good thing but yet I still was coughing. I’ve trued every thing I could think of or heard to try and no relief. I have had doctors tell me I was crazy and making myself cough. Nobody could ever make theirselves cough like I do. I cough so bad at times I gag and throw up. I pull muscles in my neck, chest and stomach. My heart beats so fast and pounds at times. It’s so very frightening. I finally went to a cough clinic at Cleveland Clinic. My process of elimination I was told I had LSN. I was put on Gabapentin, amitriptyline and currently taking tramadol several times a day. I still cough daily but if I stop the tramadol I cough non stop all day and night. I recently had a nerve block down in my neck but absolute no relief from that. I was told my only other option is Botox but there isn’t good results with the Botox so I do not want to try that. I don’t know where else to turn. I can’t imagine living the rest of my life like this.

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@tkubby, gosh, that's what I get for not reading your entire post. Sorry. You already tried trams.

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Hi. I have suffered from a nasty cough for over 38 years. The last episode lasted over 8 months. I then went to the Mayo clinic in Scottsdale and in one day learned that I had a hypersensitive larynx. I was told that the causes for the cough I had been told before (acid reflux, nasal drip and even sleep apnea) were not the cause of it and first step was to eliminate all the inhalers I was prescribed as they weren’t beneficial and were actually irritating it

I’m now on Gabapentin (which some people here are saying it hasn’t worked for them) and between a low acid diet , Gabapentin and voice therapy (surprising that playing the kazoo helps) my cough is almost gone. Now trying to reduce the dosage of Gabapentin.

I think you have to find what works for you and it might be trial and error. I originally was drinking apple juice and consuming enough cough drops that I should have been buying them in wholesale. Now I limit normal cough drops due to the menthol (try Hall breezers they have fruit pectin instead of menthol) and watch for which foods trigger coughing fits (fresh citrus love it but have to be aware I could end up coughing and without a voice)

My voice therapist told me. Just try and reduce if you can’t eliminate the high acid foods (hint. Thick skinned fruits are ok. Thin skinned ones not so much). And do breathing exercises and the kazoo. Try it for 30 days. I will be honest I saw a dramatic improvement. Went from someone who was coughing so much I got dizzy, would fall down, vomit, pop blood vessels in my eyes, pull muscles, and generally have an issue with strong smells (open kitchen restaurants didn’t work well for me). To the point where I stopped baking and cooking. I’m now able to live a normal life without people staring or friends and family members worrying about me.

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I have had a chronic cough and congestion for a couple of years. It's a vicious cycle. Apparently, the radiation caused damage to my esophagus muscles, so I have trouble swallowing, and when things get stuck I cough. that in turn aggravates the sinuses, and so it goes. I had the balloon surgery and botox injections which did not help much. I just have to eat smaller bites, eat slowly, and learn how to swallow better with a speech therapist. My is so bad sometimes that it aggravates the vagus nerve. I have actually passed out from it.

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@kimduncan1211

I moved to Texas in 2001. Soon after, whenever I got a cold, I ended up coughing horribly for 5 weeks after the cold ended. This usually happened at least twice a year. Fast forward to 2019 and I'd take that 5 weeks. I have now been coughing continuously for maybe 4 years. I have tried every cold and allergy medicine over the counter, have been given inhalers, all kinds of prescription drugs for a cough, steroids, antibiotics (which were probably unneeded), reflux meds, etc… I have seen at least 10 different doctors, not counting the walk-in clinics, as well as an allergist (showed zero allergies on the scratch test) and 3 ENTs. I then found information online from Dr. Bastian about Laryngeal Sensory Neuropathy (and the variety of ways they refer to this online) and finally felt like someone finally got what I was going through. I found other patients mortified by the coughing, gagging spells they went through as well; patients so tired of having to explain to good samaritans trying to help that the water, cough drop, honey, whatever holistic thing they offer, won't help (because you've tried everything) and then explaining what you have; patients who feel the need to tell everyone they are not contagious when you see people move away from you. It's difficult to work in an office of cubicles with this. I walked into a barbershop with my husband and, once some powder wafted over to me, I was sent into an embarrassing coughing fit, with tears streaming down my face, whole face turning red, and about 10 minutes before I could get it to calm down. People don't understand how a smell can trigger it, a laugh, talking, eating, drinking, BREATHING, anything. I just tell people it's a part of me now. Anyway, I am currently trying to work through Dr. Bastian's treatment. I tried the Amitryptiline, which appeared to help last fall, but didn't help after my last cold at max dose. I've been on the Gabapentin for a bit now, stepping it up as instructed. I'm at about 1800-2400 mg a day now. It's not touching the cough AND it's keeping me dizzy and nauseated all day (at work, it has me feeling like when I had a concussion – concentrating harder to type what I'm trying to say or do). I am weaning off of that right now. My ENT and I are regrouping at this point. The last 2 options I've been told (if meds don't work) are Botox shots to the throat and then surgery to cut that nerve. Neither of which are high on my list of things I want to do. One thing I have found… I take Tramadol for RLS flareups. When I take it, it stops my cough. I think it's working by killing the sensitivity of the nerve. It also dries up any sinus dripping, which we all know doesn't require much for us to start hacking. Anyway, there's my 2 (or 60) cents. I'm just hoping that this helps someone.

Jump to this post

I take tramadol twice a day for my LSN. It does not stop my cough but calms it down some. When I say some, I still cough several time a day but without the tramadol it’s non stop. I recently had two nerve blocks in the neck but no relief after that. My doctor said I could try Botox but I really don’t want to do that. I recently got certified for medical marijuana since it is used with other neuropathies. Has anyone given the marijuana a try with LSN?

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@lisalucier

Hi, @tkubby – having a chronic cough for many years has got to be frustrating. I've had a chronic cough personally, and was constantly using cough drops, stepping out of public concerts or church services, and having trouble talking on the phone for a long time without going into a coughing fit. In my case, after much testing, this turned out to be the major symptom of my asthma, and is treated with asthma inhalers.

Sounds like your cough is prompting a lot of pain. What treatment is your doctor prescribing for your chronic cough due to your larynx sensory neuropathy?

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I don't know how readily this product is available in the US, but I can tell you that it is the most wonderful remedy for a persistent cough that I have ever come across. I take 2 tablespoons per day, one in the morning and one before bed. Please see if you can order it or a similar product. https://suro.ca/product-items/adult-syrup/

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@bakergirl

Hi. I have suffered from a nasty cough for over 38 years. The last episode lasted over 8 months. I then went to the Mayo clinic in Scottsdale and in one day learned that I had a hypersensitive larynx. I was told that the causes for the cough I had been told before (acid reflux, nasal drip and even sleep apnea) were not the cause of it and first step was to eliminate all the inhalers I was prescribed as they weren’t beneficial and were actually irritating it

I’m now on Gabapentin (which some people here are saying it hasn’t worked for them) and between a low acid diet , Gabapentin and voice therapy (surprising that playing the kazoo helps) my cough is almost gone. Now trying to reduce the dosage of Gabapentin.

I think you have to find what works for you and it might be trial and error. I originally was drinking apple juice and consuming enough cough drops that I should have been buying them in wholesale. Now I limit normal cough drops due to the menthol (try Hall breezers they have fruit pectin instead of menthol) and watch for which foods trigger coughing fits (fresh citrus love it but have to be aware I could end up coughing and without a voice)

My voice therapist told me. Just try and reduce if you can’t eliminate the high acid foods (hint. Thick skinned fruits are ok. Thin skinned ones not so much). And do breathing exercises and the kazoo. Try it for 30 days. I will be honest I saw a dramatic improvement. Went from someone who was coughing so much I got dizzy, would fall down, vomit, pop blood vessels in my eyes, pull muscles, and generally have an issue with strong smells (open kitchen restaurants didn’t work well for me). To the point where I stopped baking and cooking. I’m now able to live a normal life without people staring or friends and family members worrying about me.

Jump to this post

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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Hi I’ve attached the breathing exercises and the kazoo excercises. I hope this helps. Having a low acid diet really helps. I have found that chocolate 😢 and ice cream trigger my cough now. I also recommend if you can go to the Arizona mayo clinic and see Dr Peyton Hines. I was impressed with him and Wenli Chen Wenli was the voice therapist and really helped

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