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Is anyone else dealing with a neurogenic cough?
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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Oh my goodness. I just found this support group and I can't wait to hear what others have gone through and things they have tried and what works. I just found out I have this disorder after about 20 years and 8 specialists who could find nothing wrong to cause this horrible cough. It has not been diagnosed yet, but there is a good chance I have a laryngeal cough based on my symptoms. There are 2 neurology groups where I live and I can see a PA at one group in November and a neurologist at another group in April, 26. I live on water, cough drops, carbonated beverages and my asthma inhaler. I wake up coughing every 2-3 hours every single night. I'm tired and worn out.
I have seen all the specialists you have seen with no luck at all. However after buying the book The Chronic Cough Enigma by Dr. Jamie Koufman I started to put the pieces together. Plus my asthma doctor came up with the same possible diagnosis...laryngeal cough or sensory neuropathic cough (both are the same thing I think). So I have been referred to a neurologist. We have a doctor shortage so I made an appointment with a PA in November and the neurologist in April, 2026. I have no idea how they will treat this horrible cough I have had for 20+ years. I understand there is a nerve block and there is also medication.
What I do to help is keep cough drops with me at all times. I use the Fisherman's Friend brand and also Manuka cough drops. It helps to drink carbonated beverages too. My rescue inhaler for asthma helps too, but I have to use it multiple times a day. I dread going places because a coughing fit could happen at any time.
What didn't work for me is speech therapy. I went through that twice and it didn't help at all. I must have gone through multiple scans, tests, etc. with not one bit of luck.
Last fall I got a really bad chest cold and then got bronchitis. The cough seemed to get quite a bit worse after that and never got any better.
Yes! I have severe asthma that was diagnosed last year and I started on Tezspire soon after. I have not had any adverse reactions to it. However, they have to be given every 27-29 days for the rest of your life. AND you have to use a maintenance inhaler. I use Breyna. The two work together. It has helped me so much, but the cough lingers which is a whole separate issue not related to asthma.
Reading all of the posts relating to: neurogenic cough, larengeal spasm, chronic neuropathic cough, chronic cough syndrome and the various other names given to it, and realising how many people suffer (and it is truly debilitating) makes it hard to understand why it is not better known and diagnosed and why there doesn't seem to be an effective treatment. One of the saddest things is the number of years and tests and examinations and sometimes treatments people go through - directed by different medical departments, before they finally get an explanation about what is happening in their bodies.
Re. treatments. I went down the pregabalin route and had 6 weeks of total remission then a gradual decline in effectiveness until I gave it up and the cough won, a year later. I've not tried nerve blocks as I've not found anyone who says they are really effective - if you can recomend any treatment I would love to hear about it. I know there are new drug trials happening now for dedicated treatments for neuropathic cough - but it will be a while before they hit the market. As of now, I have found the best way to cope is using the management strategies that work for me - everyone will have different triggers and different calming strategies. For me it is staying on my feet for an hour after eating or drinking, not bending forward, avoiding certain smells, not lying on my left side when sleeping, chewing gum when driving, keeping moving, being exhausted when I lie down to sleep and listening to audio books if I wake up (yes, the cough has a physical cause but distraction helps avoid it) Doing all of the above and more is the way to NOT opening the door to that first cough that will then trigger a totally uncontrollable coughing fit. After 10 years I have managed to stop the upward spiralling of symptoms and can 'manage' the cough to a degree that makes life liveable.