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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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I have had this cough for about 25 years or so. Been tested for everything under the sun, tried all the treatments with no positive results, except botox injections. I've had allergy testing, sinus surgery, acid reflux surgery, pulmonary testing and treatments, nerve blocks, gabapentin, amitriptyline, capsaicin spray, you name it, I've tried it. And nothing helps...except Tramadol. I've started with a very small one dose daily and progressively gone up to 1 pill every 4 hours over the years. I have found that Chloroseptic spray helps calm the tickle down most of the time so I can stop coughing during an attack. I've broken blood vessels in my eye after coughing so hard. I bronchial spasms where I can't get enough air in and have to force myself to relax to be able to breath. My cough is triggered by spicy food, pepper, cold air, being too hot, q-tips in my ears, dry air, talking, singing, spicy scents like Old Spice, brushing my teeth (toothbrush touching certain areas of my gums) and just because it wants to. When I cough my nose starts to run and drains into my throat which makes the cough worse. I now have a phlegm sensation in my throat and clear my throat a lot. I actually do cough up mucus now where I didn't previously. Halls cough drops seem to help now but they didn't at the beginning. Tic Tacs would help at the beginning and now don't. Citrus can make me cough but not always. If I press on certain areas of my throat when coughing it will calm it somewhat at times. I used lidocaine lollipops for awhile and they did help sometimes. I have been to Mayo Clinic in Rochester and Bastian Clinic in Illinois. Still waiting for my miracle! I haven't given up yet. I can't. My life would be hell without the Tramadol but the doctors aren't too excited about prescribing it. But they do, for now. I have heard in the UK they prescribe morphine and other similar drugs but not in the US. We aren't alone! There's lots of us! Don't give up!
Tramadol works for me also.
What area are you in? Tramadol is the only thing that has worked for me.
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.
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1 ReactionFunny how that hasn't turned up before now? I do hope it is your answer though. It really sucks...the struggle is real!!
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.
I would be interested if even by Zoom or some other form of video conferencing. I live in Northwest Iowa in a small town called Hawarden, right on the South Dakota/Iowa border. This cough is something that is relatively new to most doctors unless they are specialists. I am fortunate enough to have a doctor that allows me to take the Tramadol but it is extremely monitored. They will only fill the prescription after 30 days, no sooner. But, I wouldn't survive without it. I cough enough with it but I would be absolutely suicidal without it. If she were to ever refuse my request to refill I would instantly change Dr's. I'm not addicted to it, although I would have to titrate off it to stop it. I was forced to stop it for a week cold turkey and it was the worst coming off a drug that I've ever experienced. So yes, it is addictive. And I can see their point but sometimes there's no other options.
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.
Yes, I would be interested in a support group, although I live in New Jersey. I have been suffering with a chronic cough for 25 years. Like some other people, I have tried Tramadol, but found that it was not that effective in controlling my cough and the side effects from Tramadol bothered me way too much to continue using it. I will be meeting with a Speech-Language Pathologist beginning next week, so I am hopeful that I will learn some techniques to help control my cough.
It sounds like a zoom meeting would be the best way to connect those dealing with chronic cough considering people are spread out. Those interested should contact me privately to share their email addresses and phone numbers to set this up. We could then try to find a good time for all to be on.