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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.

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camayeron | @camayeron | 18 hours ago
In reply to @danielleo "Yes, I would for sure! What info do you need? Just email?" + (show)
@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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renm | @renm | 17 hours ago
In reply to @danielleo "I’m so glad to find this space. I’ve been dealing with a chronic cough for over..." + (show)
@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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mexikaren | @mexikaren | 1 hour ago

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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