Is anyone else dealing with a neurogenic cough?

Posted by camayeron @camayeron, Feb 18 10:24am

I have been a patient at Mayo for about two years. After meeting with a pulmonologist , allergist, gastroenterologist, and ENT specialists; and trying a variety of treatments, I am still coughing. I have had three laryngeal blocks. It helps somewhat, but I’m still coughing. The diagnosis is “neurogenic” cough. It’s not a simple cough. It’s a body wracking, continuous, harsh cough that can take away my ability to speak or have any volume to my voice. It severely limits my ability to socialize; the cough is irritating to other people and makes others very uncomfortable. They can even get angry listening to it, although I usually don’t have any control over it. Ricola cough drops with honey and herbs help. I I know this is a rare problem, but I would love to know if there are others out there and how they are faring.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

Profile picture for danielleo @danielleo

Yes, I would for sure! What info do you need? Just email?

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Please look at earlier Connect messages. Please send me a message there with your info.

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Profile picture for danielleo @danielleo

I’m so glad to find this space. I’ve been dealing with a chronic cough for over a year. Like others have mentioned I have tried cough suppressant, inhalers, allergy medicine, acid, reflex meds and none work. I’ve seen a pulmonologist done breathing test and chest CT. I’ve tried different types of inhalers because they thought it was asthma. Nothing seems to work. Finally, my pulmonologist referred me to ENT. I saw them last week and after speaking with them about what I’ve been dealing with for the last year, and all the things that I’ve done and tried, he diagnosed me with neurogenic cough. He said that it goes undiagnosed quite a bit. He put me on amitriptyline 10 mg that I increase every five days until I get to 80 mg but can stop at the dose that seems to lessen my cough by 80%. Praying this works, it has disrupted my life quite a bit. People I work with constantly think that I’m sick and I have to explain that I feel fine and it’s just a chronic cough. Being in public and coughing people stare at you like you must have Covid. It’s disrupt to sleep and daily activities. For those of you that have been dealing with this for 20 years, I’m so sorry. I cannot imagine looking back 20 years from now still dealing with the same cough. Hoping we all find something that works.

By chance have any of you been diagnosed with an autoimmune disorder? I have been and I’m wondering if this cough has anything to do with it.

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Es, I have autoimmune disease

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Are you taking the amitriptyline at night? I'm on 35 mg. I tried 50 and it was too much! Sounds like you have a great ENT that's willing to work on dosage to see if it helps. When I worked with my ENT the goal was an 80% improvement. My cough is not totally gone but I have a major improvement versus no medication.

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Yes ! It’s horrendous and also makes it difficult for me to socialize as well. The coughing fits have been so bad that I literally have lost my voice for days. I have found that the only thing that calms it is Slippery Elm Lozenges !! My pulmonologist recommended to use them.

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Profile picture for dmfl314 @dmfl314

Yes ! It’s horrendous and also makes it difficult for me to socialize as well. The coughing fits have been so bad that I literally have lost my voice for days. I have found that the only thing that calms it is Slippery Elm Lozenges !! My pulmonologist recommended to use them.

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To all those fighting a chronic cough, I can finally offer some hope. As you have seen in past writings, I have dealt with this problem according to my doctor for 25 years. I now have a new diagnosis from Mayo that has made the difference. I have persistent severe asthma, and I started using a nebulizer and inhaler twice a day prescribed by my pulmonologist. I AM NOT COUGHING! It feels like a miracle. I don’t know why it took so long to get to this point, but the fact is my quality of life has changed dramatically. I share this info just in case it can help direct anyone else to a more healthful existence. I have done it all-sinus surgery, neck injections, ….. None of that worked but for a short period of time. I hope this lasts!!!!

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Profile picture for onmayo @onmayo

My situation is extraordinarily similar to yours. I have been dealing with a chronic cough for 25 years, despite being treated by pulmonologists, allergists, gastroenterologists, and ENTs. I think I have had every test, prescription, and treatment imaginable, including behavioral cough suppression therapy. Yet I am still suffering with a chronic cough. I would love to know if anyone has found any relief.

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I as well being dealing with chronic cough for years. Gone to all specialist and no trouble found. The latest.. my allergist wants me to try is Trezpire injections. Reading side effects I’m terrified! Has anyone tried it and did it helped? Thank you much!

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I was diagnosed with neurogenic cough in 2018 when it wasn't that well known. I had been struggling with the cough for probably like 20 years before that. It got to the point where I was almost passing out from coughing fits set off by changes in environment like allergies, humidity and simply taking a shower. I was treated traditionally each time for allergies and acid reflux until after yet another unsuccessful treatment regimen, an ENT doctor said he read about neurogenic cough. I found a specialist in Boston who had done research on it and have been seeing him ever since then. He confirmed the diagnosis and initially treated me with 40mg of Amitriptyline. It was a miracle in that my coughing settled down significantly. Over the years, the Amitriptyline seemed to be less effective where I was switched to 100mg of Gabepentin which has been more effective. I still have a mild cough but it's more of an annoying cough than one that was life changing as it had been before my treatment. Hope this helps all of you suffering from this!

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Profile picture for tf6217 @tf6217

I was diagnosed with neurogenic cough in 2018 when it wasn't that well known. I had been struggling with the cough for probably like 20 years before that. It got to the point where I was almost passing out from coughing fits set off by changes in environment like allergies, humidity and simply taking a shower. I was treated traditionally each time for allergies and acid reflux until after yet another unsuccessful treatment regimen, an ENT doctor said he read about neurogenic cough. I found a specialist in Boston who had done research on it and have been seeing him ever since then. He confirmed the diagnosis and initially treated me with 40mg of Amitriptyline. It was a miracle in that my coughing settled down significantly. Over the years, the Amitriptyline seemed to be less effective where I was switched to 100mg of Gabepentin which has been more effective. I still have a mild cough but it's more of an annoying cough than one that was life changing as it had been before my treatment. Hope this helps all of you suffering from this!

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Hello @tf6217 and welcome to the ENT support group on Mayo Connect. I appreciate you sharing about your neurogenic cough and the help you have found with medications. It is always a relief when you find an answer to a chronic health issue.

Do you feel allergies are the prime cause of the cough? Do you take any allergy medication now, or do you only take Gabapentin?

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I just found this group and Im so glad I did. I have been dealing with a chronic cough for 2 years but probably much longer. My triggers are talking, cold air, brushing my teeth and apparently sitting and doing nothing. It’s a hard barking/croupy caught that starts with trickle in my throat and the cough takes over. At least once a week it causes me to throw up. It’s painful, I sometimes sleep with a muccinex cough drop in my mouth. Things I have tried; inhalers, promethazine dm, tessalon perles, Gabapentin, Pregabalin. I was just tested for allergies and dust is the only thing that came up. My lung function is good, ct of my chest is good. I’m going back to my pulmonologist this week and I will ask for a referral to an ENT, and ask to be started on amitriptyline to see if it helps. I usually wake up 3 to 4 times a night coughing. I’m exhausted and really want to feel normal again.

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Profile picture for hamilde @hamilde

I just found this group and Im so glad I did. I have been dealing with a chronic cough for 2 years but probably much longer. My triggers are talking, cold air, brushing my teeth and apparently sitting and doing nothing. It’s a hard barking/croupy caught that starts with trickle in my throat and the cough takes over. At least once a week it causes me to throw up. It’s painful, I sometimes sleep with a muccinex cough drop in my mouth. Things I have tried; inhalers, promethazine dm, tessalon perles, Gabapentin, Pregabalin. I was just tested for allergies and dust is the only thing that came up. My lung function is good, ct of my chest is good. I’m going back to my pulmonologist this week and I will ask for a referral to an ENT, and ask to be started on amitriptyline to see if it helps. I usually wake up 3 to 4 times a night coughing. I’m exhausted and really want to feel normal again.

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@hamilde Dust can be a huge allergy. You can do a lot to mitigate it; things like allergy covers for bedding and mattresses, HEPA filters in your home, frequent vacuuming with a HEPA filtered vacuum. I spray fabric furniture with a very light mist of Hydrogen peroxide (from the grocery store) on fabric covered furniture only. Dust is a bit of everything from dirty air particulate to pet dander. Pet dander is saliva dried and hydrogen peroxide neutralizes that. Caution, it will eat holes in leather and react with soap residues on your hands if you recently washed them (burns), and must be kept in the dark which is why it comes in a brown opaque bottle. You also don't want to inhale it. It is very reactive and turns to water. Make sure furniture is dry before sitting on it, and use a very light mist in a hair salon type mister bottle so it barely gets damp. That helps me. I have found that the couch will accumulate a lot of dust and sitting on it seems to puff that into the air when I sit down no matter how clean it looks. I guess I can always take coverings off the cushions and wash them and try to clean the foam of the cushion itself. I am also very allergic to molds and I can miss things in the kitchen that start to become moldy which triggers an allergic response. It would be worth looking for other possible sources of mold in basements, etc or if there are any roof leaks or failure of grout or calking around bathroom tile. Drains can harbor mold that you can't see. I will use a brush to scrub inside the garbage disposal. I also spray hydrogen peroxide in the sink to sanitize it. Carpeting harbors a lot of dust and dirt. I don't have it in my house, only hardwood and tile floors.

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