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.

Hello @tkubby, welcome to Mayo Clinic Connect. — I'm tagging @alaskaann, @jeffrow, @steeldove, @2011panc who have all discussed autonomic neuropathy in a previous post. Hopefully they can share their thought and suggestions with you.

Mayo Clinic has information on the diagnosis and treatment for autonomic neuropathy here:
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

I did find a couple of sites that may be helpful.

What LPR Has to Do with Laryngeal Sensory Neuropathy & Chronic Cough
https://www.refluxgate.com/laryngeal-sensory-neuropathy

Pregabalin Shows Promise as Treatment Option for Laryngeal Sensory Neuropathy
https://www.enttoday.org/article/pregabalin-shows-promise-as-treatment-option-for-laryngeal-sensory-neuropathy/

Have you been recently diagnosed with larynx sensory neuropathy?

John

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@johnbishop

Hello @tkubby, welcome to Mayo Clinic Connect. — I'm tagging @alaskaann, @jeffrow, @steeldove, @2011panc who have all discussed autonomic neuropathy in a previous post. Hopefully they can share their thought and suggestions with you.

Mayo Clinic has information on the diagnosis and treatment for autonomic neuropathy here:
https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

I did find a couple of sites that may be helpful.

What LPR Has to Do with Laryngeal Sensory Neuropathy & Chronic Cough
https://www.refluxgate.com/laryngeal-sensory-neuropathy

Pregabalin Shows Promise as Treatment Option for Laryngeal Sensory Neuropathy
https://www.enttoday.org/article/pregabalin-shows-promise-as-treatment-option-for-laryngeal-sensory-neuropathy/

Have you been recently diagnosed with larynx sensory neuropathy?

John

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It was a few years back but I have had a chronic cough for 15 plus years. I really would like to talk with others that are going through the same thing as me but can not find anyone.

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@tkubby I have not been told that I have larynx sensory neuropathy. I have noticed changes in my voice and throat that I associate with reflux and many intubations. My throat is sensitive (mildly achy) most of the time and my voice is scratchy. I almost always have a buildup of phlegm in my throat. I do not talk as much as I once did and no longer attempt to sing. I used to talk quite a lot and sang in choirs since my youth. I can no longer do phone work because after 1/2 day I lose my voice. Are these symptoms similar to yours?

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@2011panc

@tkubby I have not been told that I have larynx sensory neuropathy. I have noticed changes in my voice and throat that I associate with reflux and many intubations. My throat is sensitive (mildly achy) most of the time and my voice is scratchy. I almost always have a buildup of phlegm in my throat. I do not talk as much as I once did and no longer attempt to sing. I used to talk quite a lot and sang in choirs since my youth. I can no longer do phone work because after 1/2 day I lose my voice. Are these symptoms similar to yours?

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No. Nothing like my symptoms.

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@tkubby

It was a few years back but I have had a chronic cough for 15 plus years. I really would like to talk with others that are going through the same thing as me but can not find anyone.

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Hi, @tkubby – you mentioned larynx sensory neuropathy and that you've had a chronic cough for 15 years. Is the cough your major symptom, or do you have other symptoms from this condition, as well?

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@lisalucier

Hi, @tkubby – you mentioned larynx sensory neuropathy and that you've had a chronic cough for 15 years. Is the cough your major symptom, or do you have other symptoms from this condition, as well?

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Cough is the major symptom but from the cough I have pain in my throat, pulled muscles all over from coughing so bad.

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@tkubby

Cough is the major symptom but from the cough I have pain in my throat, pulled muscles all over from coughing so bad.

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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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@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 have tried Gabapentin, amitriptyline and currently taking tramadol but cough is not getting any better. In fact, it is getting progressively worse. I also received a nerve block but no response to that. I am being treated at a cough clinic and they said they are out of suggestions for me. I don’t know where else to turn. It is affecting me daily and is very depressing.

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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 @mjahall, welcome to Mayo Clinic Connect. I can't help but think there are others with the same or similar symptoms that you have. I also hope that someday they will come up with some better treatments for the different neuropathies. I have idiopathic small fiber peripheral neuropathy but don't have any pain, just the numbness. Have you used Google Scholar before? (http://scholar.google.com/). I use it a lot when searching for new treatments and research. Here's an article I found from Jan 2019.

Altering cough reflex sensitivity with aerosolized capsaicin paired with behavioral cough suppression: a proof-of-concept study
http://atm.amegroups.com/article/view/23201/html

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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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Hello @kimduncan1211, welcome to Connect and thank you for sharing your story and what helps you the Laryngeal Sensory Neuropathy. I'm hoping it helps others also. Here is some information that may be helpful if you are thinking about taking Botox shots:

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

Have you discussed the surgery option or thought about it?

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