Mayo Clinic Connect
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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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:
I did find a couple of sites that may be helpful.
What LPR Has to Do with Laryngeal Sensory Neuropathy & Chronic Cough
Pregabalin Shows Promise as Treatment Option for Laryngeal Sensory Neuropathy
Have you been recently diagnosed with larynx sensory neuropathy?
Liked by Dee, Lisa Lucier, Connect Moderator
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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.
Liked by thomsong, John, Volunteer Mentor, Dee
@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?
No. Nothing like my symptoms.
Liked by Dee
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?
Cough is the major symptom but from the cough I have pain in my throat, pulled muscles all over from coughing so bad.
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.
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.
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
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.
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
Botox may quiet chronic cough
Treatment of chronic neurogenic cough with in-office superior laryngeal nerve block.
Have you discussed the surgery option or thought about it?
Liked by thomsong, Dee, Lisa Lucier, Connect Moderator
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.
@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.
Liked by John, Volunteer Mentor, Dee, Chris Trout, Volunteer Mentor
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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