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) group.

@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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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.

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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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@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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