Is anyone else dealing with a neurogenic cough?

The laryngeal block helped twice, but has not worked this time. Most other people think, “Oh, she has a cough.” But it’s NOT JUST a cough. It causes back pain and major headaches. It can feel like I am breaking blood vessels in my head. Sometimes I can’t inhale a good breath and think I’m going to pass out from lack of oxygen. And I can’t talk or socialize because talking can easily lead into a coughing frenzy. So without family, it can be a very lonely existence.

I live in Minneapolis. I just tested at Mayo again and the pulmonologist said I now have persistent severe asthma according to my chest scan and blood work. So now I’m using a nebulizer, inhaler, and another round of prednisone. We’ll see how this all works because the cough now can get totally out of control and I go into panic because I can’t breathe when it won’t stop. I pray this works.

I'm also dealing with a chronic cough for 4 years without a definitive diagnosis. The allergist thinks it's asthma, but my breathing is fine other than the cough. Gastro doctor thinks it's early stages of reflux. Wish the cough could be figured out. It's wearing me down.

Mexikaren, Jojo1963,catsmom5, @onmayo,@dlr62, and @libitsmom: I would love to form a support group and meet up to share our experiences. It has been heartbreaking to hear how so much of our problem with chronic cough overlaps and how long we have been dealing with it. If this interests you, you can write me through this portal. I live in a first ring suburb of Minneapolis. Thanks for sharing your past experiences already.

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

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.

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!!!!

Your description of your nighttime experiences and any sensation in the respiratory tract causing a cough reflux is Exactly what I’ve had for years now. You put it all into words for me. I’m sorry you’re not finding answers, me neither. But I’m hoping one day there’ll be more research done. There are apparently a lot of us. Take care.

Yes! I have suffered from this cough since I was in my 20’s, I’m currently 64. I first heard the words Neurogenic Throat about 10 years ago in a book, when I read the part about taking Neuro drugs to diagnose it, I basically dropped the idea. I had never really had a medical work up about it. Fast forward to 4 years ago, I got some good insurance and started in to try to figure it out. My pulmonologist diagnosed me with asthma, which is my “other” cough. He also sent me to GI and to ENT. Again, I was told the only way to diagnose it was to take amytroptoline, I focused on the other parts of my new diagnosis. About 2 years ago, when explaining this to my pulmonologist, he said you can try gabapentin 300mg twice a day in the same way. I did, and it worked. Like overnight my cough was gone. Wow. Over time, maybe 5 months, it crept back, but never as bad as before. So we doubled it. That also lasted months, maybe a year, and then we decided to add more for a total of 1800mg per day. Recently I heard about a study that gabapentin use has a strong link to dementia and cognitive decline. FULL STOP! So, I have now weened myself off of it, and my cough seems worse than ever. Peeing my pants again, can’t sleep, and many other problems. I’m a massage therapist for crying out loud. It’s interesting how sad I am. So, Im so grateful to talk to you all. I’ve never met anyone who’s even heard of it! I will be reading ever post and trying to find some hope.

I’m new to this forum, and I went to your profile but didn’t see a way to contact you. Thank you so much for this!