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.

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onmayo | @onmayo | Apr 26, 2025

I have also been through many treatments and specialists. As a last resort, I had both left and right side laryngeal nerve blocks last year, but unfortunately they were ineffective. I wish you luck.

onmayo | @onmayo | Apr 26, 2025

In reply to @wendymb "There is a spot behind the earlobe and above the jaw which when pressure is applied..." + (show)

Thanks!

bubbie2 | @bubbie2 | Apr 27, 2025

In reply to @wendymb "There is a spot behind the earlobe and above the jaw which when pressure is applied..." + (show)

Google Larson's Maneuver. The points are behind the ear lobes. Hope this helps.

onmayo | @onmayo | Apr 27, 2025

In reply to @bubbie2 "Google Larson's Maneuver. The points are behind the ear lobes. Hope this helps." + (show)

Thank you!

sellen | @sellen | Apr 27, 2025

In reply to @onmayo "I have also been through many treatments and specialists. As a last resort, I had both..." + (show)

Thank you very much. I do hope you find relief as well.

bmward | @bmward | May 7, 2025

Hello. I found this post because I have had some laryngeal spasms that scared me to death. If you've ever had one of these, you cannot breathe or talk for many seconds, even minutes. There is so much helpful information here that I am copying and pasting into my research, and I thank you all for sharing your experiences, successes, and warnings.

I have had issues with throat clearning, lump in throat, and the spasms for over 20 years, but I am fortunate in that they are extremely annoying, at times absolutely terrifying, but not completely intolerable as you all describe. I currently get the cough with phlegm and layngeal spasms some nights where I can't breath and tears stream down my face, and I get a cough/ raspy voice, throat clearing/ lump in throat in the mornings.

Anyway, I am writing here to say that, for me, I believe it is a part of Vagus Nerve Malfunction. You can find articles about the symptoms that can be caused, and often they include issues with the Larynx, Esophagus, Reflux, and Chronic Cough.

I don't know what to do with this information exactly, but for those of you that are incredibly desparate, there may be some treatment involving your Vagus Nerve function that could help. Especially if you have any of the other symptoms associated with the Vagus Nerve Dysfunction. I am holding you guys all in the light and hoping that you don't lose your will to keep pushing to get help, and hoping the same for me as well.

dani1972lsn | @dani1972lsn | May 17, 2025

In reply to @johnbishop "Hello @arlinebringhurst, Welcome to Connect. It must be frustrating not being heard by your doctors. Have..." + (show)

I did the nerve blocks, still coughing. Been everywhere, Otolaryngologist, pulmonologist, chiropractor, Neurologist, Naturopaths, endocrinologist… and I cannot take a lot of the meds because of my genetic mutations.

John, Volunteer Mentor | @johnbishop | May 17, 2025

In reply to @dani1972lsn "I did the nerve blocks, still coughing. Been everywhere, Otolaryngologist, pulmonologist, chiropractor, Neurologist, Naturopaths, endocrinologist… and..." + (show)

Welcome @dani1972lsn, Sorry to hear that you haven't found any relief after all the testing and treatments you have been through. Mayo Clinic has a special cough clinic if you haven't already tried something similar - https://www.mayoclinic.org/departments-centers/cough-clinic/overview/ovc-20399029. Have you thought about seeking help at a cough clinic?

dani1972lsn | @dani1972lsn | May 17, 2025

In reply to @johnbishop "Welcome @dani1972lsn, Sorry to hear that you haven't found any relief after all the testing and..." + (show)

I’ve tried it all… including a bronchoscopy twice. My lungs are great.

jojo1963 | @jojo1963 | May 20, 2025

In reply to @kimduncan1211 "I moved to Texas in 2001. Soon after, whenever I got a cold, I ended up..." + (show)

@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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Tramadol also works for me! You're not alone! It's tough to find a doctor who will continuously prescribe it though because of class of drug it is. I have been to Dr. Bastian years ago. I have also been to Mayo Clinic. It has been a few years ago though. I didn't do botox but I did do a nerve block. I haven't heard about cutting the nerve though. I'll have to research this. The Tramadol is becoming less effective. I started with one a day at 50mg. I'm now up to 6x a day at 50mg. Hopefully they will find something soon for those of us that the neuropathy drugs aren't working. Hang in there!