Is anyone else dealing with a neurogenic cough?

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.

I just read your letter and found it interesting that lying on your left side when sleeping triggers your cough. The same thing happens to me too...within 15 minutes. Do you know why? Also, I constantly produce phlegm (don't know why) so I started raising the head of my bed to about 45 degrees and it seems to help lessen the cough. Otherwise the cough wakes me up every 2-3 hours and I go through the routine of using the rescue inhaler, blowing my nose and drinking a little water. Then I fall back to sleep only to awaken in 2-3 hours and go through the routine all over again. I also have reflux and severe asthma. One affects the other and then the cough gets mixed in and it goes downhill from there. I have not tried anything yet to help the cough, but I do see a neurologist PA in November. I don't know if she will recommend the shots or drugs. Seems like everything I have tried works for about a week or 2 and then stops working. Have you read the book The Chronic Cough Enigma by Jamie Kaufman?

Hi Babs. I'm not sure why turning onto my left side triggers coughing. It could be reflux related but I think it is also relevant that I almost always start the night on my right side and that a shift in position is enough to cause irritation within the respiratory tract. I cough if I bend forward during the day for the same reason. Initially I concentrated a lot on 'reflux' as a cause but now I see it as an early contibutory factor ... but I believe now that curing the reflux would not cure the cough. My personal understanding is that any number of things (reflux, asthma, virus - mix of all) can start a process of 'hyper sensitising" receptors and nerves in the respiratory tract and once hyper sensitised they start triggering the cough reflex for all and any reason you can imagine.... physical positions, smells, heat, cold, taste..... basically it seems your body is willing to interpret any sensation experienced in the respiratory area as something that needs to make you cough.... well that's how it works for me anyway! I also produce lots of mucus as the second step in the cough cycle. So, like you I wake up, dry cough repeatedly, then produce mucous, prop myself up in bed, wet cough, which subsides into throat clearing and then finally back to sleep... then repeat!!! I've not read the book but may try to get hold of it but I feel I know what is happening in my case. What I can't find is anyone with a sure fire way to reverse the process and DE sensitise all those nerves and receptors long term. Pregabalin worked for 6 weeks but that wasn't long enough to 'cure' it.

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.

Your story sounds so similar to mine. However, I have not tried anything to help the cough even short term. My PCP gave me a prescription of hydrocodone/chlorphen ER cough syrup to get some sleep when I am dragging badly. It also comes in handy for having MRI's, dental work, eye exam, hair cut, CT scans, church, but it does give me a hangover the next day if I take a full dose of 5 ML. I try not to use this medicine unless I absolutely have to because it is a controlled substance. I have my physical tomorrow so I am going to ask him if he would give me a refill every 6 months or even once a year. I understand that a neurologist is the specialist I need to see abou the cough so the soonest I could get in is Nov. 18 and that is with a PA in one group and in another group (Duke) I can't get in to see a doctor/neurologist until April '26. We have a terrible shortage of doctors in this area...maybe everywhere. So I just keep doing what I am doing to try and control the cough...rescue inhaler, water, cough drops and carbonated beverages. Best of luck to you.

Hello.

I was so happy to find this group. I have been suffering with a chronic cough for over 20 years. Also going to multiple ENTs, allergists, gastroenterologists, and pulmonologists. Finally this year an otolaryngologist diagnosed me with a neurogenic cough. First she gave me two injections in my neck with did not help at all. Then she put me on the Tramadol, which worked, but she told me it wasn't a long term solution, and her diagnosis was proven by it working. Then she but me on 25 mg of Amitritiptyline, worked some, then she raised it to 50 mg, and the cough was almost gone! We were both so excited, and she said I didn't have to see her for 6 months. It was live changing! Well, less than a month later, my cough is coming back. I am so upset and frustrated to say the least. Cough drops do help a bit, but sometimes, not so much. It is so anxiety producing when you are in public. Especially during COVID! Do you think I'm better off seeing a neurologist? I feel that the treatment is the same anyway. Going to have to make a follow up appointment with the Otolaryngologist.

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.