... amitriptyline, gabapentin, topomax and currently protriptyline. The amintriptyline and protriptyline both have calmed the cough some what, but I'm still coughing. Any other suggestions
I have been diagonsed with a neurogenic cough. I have been coughing for 2 years. I have taken?
Question posted by candrews on 16 Nov 2011
Last updated on 8 February 2022 by purehealth12
11 Answers
purehealth12
8 Feb 2022
I really have to thank NoMoreCough for his post. Similarly, I had a nagging dry cough for many months and it seemed to be triggered in the winter and when I talked, but it did not bother me when I slept and I had no other symptoms. I went to numerous doctors and specialists for allergies, acid reflux, etc., however there was no luck in a diagnosis, let alone treatment. Not to mention a lot of expensive medical bills for a problem that was not resolved.
I decided to complete my own research online, and it seems to be a neurogenic cough. I figured my vagus nerve was damaged due to the flu which I had a few years ago, and the colder weather was a trigger. I then came across this post and decided to see the same doctor, Dr. Jonathan Aviv who had his own unique tools for diagnosis, and best of all his treatment was simple and natural. Dr. Aviv is well known for being the few medical professionals who figured this out.
I then met with Andie Schneider who is a Speech Pathologist, and her treatment was very simple speech and breathing exercises for respiratory retraining for PVFMD (Paradoxical Vocal Fold Motion Disorder).
I completed the exercises for a few weeks and now I am gratefully cough free, and this is 2 years now. On rare occasions , cold weather is a trigger for me and the cough sometimes comes back, but if it does, I just complete the breathing exercise and it goes away.
I am grateful for this post as it has lead to a completely simple and natural solution to a long standing problem. Hopefully it will help others as well.
Jan0312
14 Dec 2021
Hi Fellow Chronic Cough Sufferers, Just writing to see if anyone has come across any miracles to help neurogenic coughing. After taking all the usual medicines and botox without success, I am not using anything but a bronchial inhaler for shortness of breath which is getting worse. Anything new?
Also, if you have discovered any "brilliant" doctors out there, please share their info. I am in the NYC area but will go anywhere.
Thank you.
lksupercooper
21 Nov 2019
I know this original question was specific to neurogenic cough but I would like to reply. I have had a chronic cough for over 10 years and it has progressively gotten worse. I have been to every kind of specialist. GERD was suggested to me by several of them but since I did not have the typical symptoms, and I did not want to take a PPI, like Nexium, due to long term side effects I did not act on the diagnosis. I have a very wet cough (lots of mucus in my throat), but I also have a dry cough that seems to be triggered, not by food, but by temperature changes and chemicals to name a few. Finding Dr. Jamie Koufman's book "Chronic Cough" was a huge eye opener for me. She gives you some simple tests to help you to determine if you have Silent or respiratory reflux, neurogenic or a voice disorder. I tested high on the scale for reflux and moderate for neurogenic. The first thing she recommends is a diet change.
I have always felt that diet was the most important element in most ALL chronic disease , and I thought I was a healthier than average eater, but within two days of being on her low acid diet plan my cough was better by 50%. If you eat a lot of fast food or processed food this diet would be very difficult but if you are a basic healthy eater there are plenty of foods you can still eat, and ultimately you can go back to some of the banned foods once you get your symptoms under control and figure out which foods are making you cough. Also, years ago I had allergy testing for foods and many of the foods I showed an immune reaction to are the very same foods that are high in acid. For people who have tried many drugs with no luck I suggest getting her book and following her program. I will be forever grateful. Good luck and good to see I am not alone.
NoMoreCough
28 Oct 2019
I am 41yo, male, and I have had a neurogenic cough and throat clearing for 3 years now, following a bad virus that damaged a nerve. I am finally making real progress, so I wanted to share this with folks who may be suffering. I am posting this because I know how distressing the cough can be. For years I have experienced people literally getting up and finding a seat far away from me on the train or in closed spaces.
I have been through the misdiagnoses (asthma, allergies, tuburculosis, etc.) I was finally diagnosed by the late Barry Shapiro, ENT (Westchester, NY). He prescribed low levels of Amitriptyline and Gabapentin, both of which helped me to control the situation over a year. I constantly tinkered with dosing. However, these drugs had side effects and didn't get rid of the problem. Amitriptyline worked but put me to sleep.
Recently I went to see Dr. Jonathan Aviv (an ENT in Manhattan). He did an endoscopy and recommended voice therapy with a specialized therapist at his office named Andie Schneider. She gave me some ridiculously simple voice exercises to do every day (e.g. breathing in through the nose and then making an extended 'shhhhh' sound as long as possible). Needless to say I was very, very skeptical.
The crazy thing is that these exercises are working. They are retraining my vocal cords to not spasm and slam shut. I have not taken any of the drugs for several months now, and my cough/ throat clearing is maybe 75% improved. Today the therapist gave me some more exercises. I am doing them as I type these (some are also calming, like meditation).
Hope this helps someone to get better. Best of luck.
Jan0312
2 Oct 2020
Hi "NoMoreCough", I am writing to you to see how the voice therapy went and if you feel it was successful so many years later? I have already posted on this site all the drug therapies I have tried including multiple botox injections but I am still suffering so I am wondering if I should give voice/breathing therapy a go.
Thanks
nomedeguerre
2 March 2019
I was on a cruise and a fellow passenger heard my coughing. His wife had a chronic cough for 15 years, heard about Dr. Jamie Koufman, (I'm not kidding--that's her name), in NY who wrote the book, "The Chronic Cough Enigma". She read the book, went to the doctor and was finally cured of her cough.
I just bought the book. I'm going to try some of the suggestions. My cough has been with me for almost 40 years. I just started referring to it as my "plus one." ;-)
sns1108
8 June 2018
I am so glad I found this on the internet. I am a relative "newbie" to neurogenic cough. I have had a cough for 2-1/2 years. Was diagnosed about a year ago and was so relieved to finally have a name for it. I knew I wasn't going crazy! :) I started out on 10mg amitriptyline once at bedtime and he has now increased it to two 10mg at bedtime. It was a lot better, but now it doesn't seem to be as effective. I've noticed I've been coughing a lot more lately. It's more than frustrating. Thank you, everyone, for the information you've shared, above. I'm going to make another appointment with my ENT and see if some of those other prescriptions may be more helpful to me.
jenima
13 May 2018
Amitriptyline helped me a lot but I did not want to stay on it long term. I have had a noticeable cough for about 15 years, but it got really bad about 5 years ago. Finally was diagnosed I think it was in 2014 with neurogenic cough after many, many tests. I have continued to explore different possibilities for treatment. I would like to know if anyone else has noticed an increase in their coughing after consuming things like coffee and/or chocolate? Thanks.
Annie B14
13 May 2018
Hi
Anything with caffeine is a trigger for me including coffee, tea, chocolate, soda. Also ice water, vinegar, sugary foods, literally anything that irritates that nerve.
I have been on 100 mg of Tramadol per day and it has helped quite a bit. I believe after three months, though, that I have built up a tolerance. Rather than increase the dosage I plan to wean myself and then restart.
I cannot take amitriptyline or any in that family due to dangerous side effects. I was asked to participate in the Mayo study for chronic refractory cough but my schedule wouldn’t allow it. They are studying orvipetant. Perhaps this will be available for us soon.
It’s such a tough condition. I wish everyone good luck. I’ve had this for 23 years and it just gets worse over time.
Ann
rvandenheuvel
13 May 2018
Yes, absolutely. Coffee, wine, and chocolate are some of my worst triggers as they are high in acid which irritates the laryneagel nerve. Some are things I find make my couch worse are things with yeast such as beer, bread, pizza etc. I try my best to reduce my consumption of these things but it’s almost impossible to (especially coffee since i still drink it everyday).
Carriesteck
29 Aug 2017
Did you have your nerve clipped? If so who did it? I am in wi and having my 4th Botox inj. They have been unsuccessful. Still trying but I want something permanent. Thank you
PBSTL
10 Nov 2017
No, I did not do the nerve clipping. My neurologist (MD PhD) had not heard of the procedure. The ENT had only clipped 12 people's nerves. I wanted to wait for some evidence based medicine that showed it work & without side effects- nothing has been published yet. I've seen a new ENT ' did speech therapy for vocal cord dysfunction & a psychologist. Neither of these had any impact on my cough. I'm currently on max dose of amitriptyline ' keeping my own cough log. He is thinking of sending me to another pulmonologist but I've already seen 2! I'm interested in Botox but haven't found anyone In St Louis that does it for neurogenic cough. Any recommendations?
jumper25
10 Nov 2017
I can't believe you haven't tried tramadol.
Carriesteck
11 Nov 2017
Doc won’t give tramadol... only drug not tried. Mayo in Rochester minn and uw Madison hosp Dr Daley does Botox. The doc at mayo will come out of retirement and do it but that didn’t work for me so went to dr Daley and he does Botox at uw madison wi. Someone in St. Louis had got to do it try calling around to major clinic systems near you
jumper25
11 Nov 2017
Carriesteck, if your doctor won't try tramadol, find a new doctor. Check the literature yourself. Tramadol is one of the "go to" drugs for this condition. Should be one of the first things to try, not the last.
PBSTL
22 Dec 2017
The amitriptyline 75mg at bedtime has helped. I've been on it for 6 weeks & instead of coughing 39x in 12hrs, I was down to 16x in 12hrs. I'm really pleased with this. Like most conditions, there typically isn't 100% resolution of symptoms & after 18+ years of coughing, a 55% reduction in coughing is wonderful & I'm thankful. With some more time, it could get even better w/ the amitriptyline. The diagnosis is Sensory Neuropathic Cough (SNC). I recommend reviewing Laryngopedia.com. So many great video's & information on this site. I also have idiopathic polyneuropathy & my esophagus only functions about 50% or less of normal esophageal function, so SNC makes complete sense. I'm not interested in taking opioids (Tramadol) at this point since the amitriptyline is helping. Good luck!
Cloia
1 Feb 2018
I am also looking for relief from my sensory neuropathic cough diagnosis. I've been coughing for two years. I've tried Amitriptyline (helps a small amount) and Lyrica (didn't help at all). I most recently tried botox injection. It helped a small amount for about two weeks and I had side effects of loosing my voice and difficulty swallowing. My doctor won't prescribe opioids either. Not sure what the next step will be for me. Anyone, please let me know if you've had success with nerve clippings.
Nikkip73
7 April 2018
I too have been suffering with chronic cough for about 17+ years and have been dignosed with Sensory Neurogenic/neuropathic Cough by my ENT. I have already tried Amitriptyline and Gabapentin with no success and hated the side effects. I was put on Tramadol,50mg in AM and 25mg PM, for about the past almost 2 years and have recently taken myself off them. Tramadol seemed to be the only treatment that posed even partial relief but I started to see side effects and didn't want to be on opiods any longer. I'm at a loss for what kind of dr to see next. I have spoken to my acupuncturist about "desensitizing" the nerve and he said that it may also diminish the function of the nerve as well. I may end up with tingling or numbness in my arm or hand. At this rate I figure at least I can be out in public with a tingly arm or hand and won't be completely embarrassed by going into coughing fits everywhere. I'm at the end of my rope. IDK where to turn next.
I am literally afraid to even talk because it sets me off into a coughing fit. Smells, temperature changes, talking/laughing/crying, air blowing in my face and position changes (usually when lying down) are all triggers for me. What kind of quality of life is it when you can't even talk or laugh anymore??? I was researching the botox injections but after reading the above messages am starting to sway away from them since many people didn't have great results. I'm just so frustrated and am losing hope. Not that I wish this on anyone, but it is nice to see that I'm not alone. I'm so scared to consider the nerve clipping. For those who have had it done, what have been the side effects from it? Any help would be greatly appreciated.
Sharon725
20 April 2018
I also have had this chronic cough for 35 years! Like everyone, I have been to every doctor, tests, etc. Also had the Nissan fundoplication at the Mayo Clinic in Jacksonville. No help. I have been on gabapentin for a few years now. I guess it helps somewhat, but not enough. Never have been prescribed Tramadol. What DID help was hydrocodone. Yes, I know it's for pain, but it actually did the trick. I took it depending what my day was like. Dentist, yep. Movies, yep. But of course I now am unable to get anymore prescriptions for this drug. I'm interested in this "clipping" method. Can someone give me some info? Thanks!
PBSTL
20 April 2018
Dr Randal Paniello is an ENT in St Louis, MO who does the nerve clipping. His number is 314-362-7509. I did not have the procedure. He had only performed it a total of 12x & I wanted to read clinical outcome studies first. There weren’t any published in 2017 when I saw him.
Sharon725
21 April 2018
Thank you PBSTL for your comment regarding nerve clipping. Don't think I'll be going to St Louis anytime soon, but will try to research here in Venice, Florida.
AB73
8 Jan 2017
Jeff61st-was your wife part of the chronic cough study at the Mayo Clinic? My doctor recommended I contact them. She thought it involved botox injections, but I was worried about vocal cord paralysis. I'm at my wits end too. I was considering contacting the Mayo Clinic, but it sounds like the botox may not help.
Jan0312
22 Jan 2017
AB73: I already had both restalyne and botox injections into my vocal chords and neither worked but no damage to the vocal chords. I just had a bad head cold and cough and am now suffering from ulcers on my vocal chords from all the coughing and have had laryngitis for 3 weeks. Interestingly, my typical chronic cough lightened up while I was sick. I mentioned this to my ENT and he thought it made some sense since when you are sick, the area in your throat swells leaving less room for vibration and therefore coughing. He would like to try the restalyne on me himself since this produces the same effect. I may go for it again once my ulcers are gone.
Also starting on a weekly slow release bultrans patch tomorrow so I can be off the hydrocodeine.
I have found that I can no longer take deep breaths without coughing and therefore have trouble running now. Anyone else experience this? This condition is running my life.
PBSTL
27 March 2017
I have had chronic cough for 18 years. Even had Nissen Fundoplication in November 2016 b/c they thought the reflux was an issue. Well, wasn't reflux isn't the primary cause of my cough & coughed about 24 hours after surgery. Boy that was a painful shock. Now I have side effects from the fundoplication. I met with an ENT at Washington University School of Medicine, Dr Randy Paniello & he confirmed my neurogenic cough. He also has been performing procedures wherein he clips the nerve that is responsible for the hypersensitivity leading to the cough. He has had great success. I would recommend you google him & try to see him. He will numb the nerve first & see if you are able to swallow, speak, etc before he considers you a good candidate for the surgery.
Annie B14
30 April 2017
I'm really interested in the clipping of the nerve and will look into that. It's a drastic procedure, but at some point, it is worth the gamble. I've had the cough for 22 years. It was diagnosed at Mayo. So grateful to them! I did one botox injection three months ago with a local doctor. I live in Oklahoma. For two weeks afterward my cough was out of control and I had difficulty swallowing. I believe I was aspirating food and I was on the verge of bronchitis, I think. I had read on this forum about Tramadol and went to my GP. I've been on it since. 112 mg spread out over the day in 3 doses.
Since I messed up the 'pure science experiment' of the Botox injection by taking Tramadol during the 3-month span the injection is supposed to last, it's not clear to me quite yet whether it was the Botox or the Tramadol that has given me relief. I estimate about a 70% improvement. It's fabulous! This week marks three months since the Botox, so I will see. I suspect it is the Tramadol that is helping.
Whatever relief I can find I will gladly take.
Ann
Fstephenson
7 July 2017
I too have been coughing for at least 20 years. I have been evaluated numerous times for the big 3... Asthma, Reflux, and Allergies. Even though I did not show to have abnormal Reflux I did have an 80% correlation between my reflux and cough so I had a Nissen Fundiplication in November of 2015. I have seen an improvement, but still have the cough. I found about about Neuropathic Cough on the internet. None of my doctors have ever heard of it, but they agreed to giving me the Amitriptyline. It seems to help. I estimate that I am about 70% better, but I want 100%. I am frustrated because I cannot find a doctor locally that knows anything about it. I am in North Carolina. If anyone out there knows of a doctor in NC that treats this please let me know!
jenseb
17 July 2017
I am very glad to stumble on this forum. I have had what has been diagnosed as a neurogenic cough for 4 years. I also have been to see an allergist (no allergies), pulmonologist (asthma diag, but don't have it), gastroenterologist (reflux diagnosis) and have taken a large variety of meds. Currently I only take 30 mgs Amitriptyline at night which does help (I've tried to discontinue twice and the cough got much worse). I am also trying an herbal remedy, but it's only been a couple of months and no change so far.
Has anyone tried hypnosis? I saw on the news recently it really helped someone for another condition.
Thanks!
PBSTL
18 July 2017
I just started treating with a different ENT firmly 18yr cough. I've been going to speech therapy to treat vocal cord dysfunction (VCD) with my neurogenic cough. So many things I wasn't aware were habits that contributed to my cough; things I can control to either suppress the cough somewhat or to not trigger a cough. After 2 visits I'd say I'm 10% better. ENT said it was great & to continue with speech therapy & I will continue to see improvement. Sure, pills are "easier" but I don't want more pills for the rest of my life. They also recommended psychotherapy with someone who is familiar with VCD. We do not have a psychological diagnosis but psychotherapy can also help with some triggers, esp for Somewhar Type A people like me. We nurses are some of the toughest to treat. I'm going to stick with it for a while- beats clipping a nerve
rvandenheuvel
10 Nov 2017
Hey PBSTL,
I was just wondering why you decided not to get the nerve clipped (risky procedure, high cost, etc)? I have tried various treatments for my neurogenic cough of 12 yrs and I feel like this might be my last option.
I would very much appreciate your response. :)
Thanks,
Robert
jumper25
18 Dec 2016
Same symptoms, but to make a long story short, after about 15 years as conditions worsened and no success with family doc, ENTs, lung specialists, gastrointestinal specialists, allergists, etc., I self diagnosed using Google and was confirmed with neurogenic cough by 2 different ENTs. That led to gabapentin (massive doses) and then tried amitriptyline. Finally in desperation Dr suggested low doses of tramadol (up to 4 25mg per day). Virtually instant relief!!! After all these years, a miracle. Thank you, Dr L! She's the best!
Jan0312
19 Dec 2016
Jumper,
Did you take the tramadol all at once or spread our throughout the day. I took up to 6 50mg pills all at one time but it was unsuccessful. I am wondering if spreading throughout the day would work.
Next month I will be doing an MRI over a a couple of hours to see what my brain does when I cough.
Thank you.
jumper25
19 Dec 2016
That's a huge amount of tramadol! I took one of the 50 mg tablets I sometimes use for arthritis, and that stopped my cough. Then followed with the prescription for up to four 25 mg tablets spread through the day. I find I don't need that much. No other meds needed at this time
sophiekunatg
10 Jan 2017
Do you continue to take the tramadol? My 9 year-old daughter has been diagnosed with neuropathic cough. She did several weeks of amitriptyline and now she's tapering off in order to switch to gabapentin. My heart is breaking for her as this has been so very difficult. I'm glad we finally have a diagnosis, but no resolution as of yet. Any advice is greatly appreciated!
Ricmad03
19 Jan 2017
thank you for your input - my condition is due to an epiglottitis episode I suffered last year but none of the drugs mentioned have worked - now I see you mentioned tramadol - will see my Dr with that suggestion and revert with comments later on. tks!!!
rvandenheuvel
10 Nov 2017
Hi there,
I've also had neurogenic cough for about 12 years now, and have tried both amitriptyline and gabapentin with little success. Did you find any side affects with tramadol? Also, has it taken away your cough completely?
I would very much appreciate your reply. :)
Thanks,
Robert
Carriesteck
20 April 2018
Can’t get a dr to give tramadol I do not have a history of drug use
LaurieShay
16 Nov 2011
After reviewing some literature about neurogenic cough, I found the following:
"Treatment of neurogenic chronic cough is somewhat different than other neuropathic conditions. For isolated cough (no-LPR), I usually start treatment with tramadol 25 mg q.i.d. p.r.n. or amitriptyline 10 mg q.h.s. If LPR is also present or there are other symptoms, then I tend to start with gabapentin 100 mg q.i.d. and then escalate the dose as needed (usually to 300-500 mg q.i.d.) depending on the side-effects and results. Those medications may be used alone or in combination, and the most common combination is gabapentin with a small dose of amitriptyline at bedtime. In my practice, pregabalin and baclofen are second-line choices for special situations."
Since you have tried the amitriptyline and gabapentin, you might want to try the tramadol with the protriptyline, or investigate the pregabalin (Lyrica) in place of the gabapentin and the baclofen which is a muscle relaxant.
Just some suggestions,
Laurie
Jan0312
23 Aug 2016
I have tried all the medicines noted as well as Botox and restalyne injections into
my larynx with no relief. I have been coughing for 20 years. Any other suggestions? Also tried asthma and reflux medicine before the nerve ones. Acupuncture doesn't seem to be helping either.
Annie B14
29 Sep 2016
Jan,
My experience mirrors yours. After 20 years of coughing I was diagnosed two years ago with neurogenic cough. At least now I have a diagnosis. Amitriptyline really helped but dropped my blood pressure to the point of almost passing out. I've tried about 5 of these tricyclic antidepressants, all with varying results but all with side effects that I can't tolerate. Gabapentin and Lyrica might have had some benefit but they really messed with my brain and body. Strong drugs! I am about to pursue Botox injections. I also am exploring medical marijuana since as I understand this condition, it is the Vagus nerve that has been damaged and cannabis can help with nerve damage. Good luck! I feel your pain! Annie
Jan0312
1 Oct 2016
Anna, please keep me informed as to how the Botox works for you and more importantly, the medical marijuana since I believe that's what is left for me
Good luck,
Janice
Jeff61st
25 Oct 2016
My wife has this diagnosis. Tried two Botox injections so far with very little result other that losing her voice for a few weeks each time. Gabapentin really was not tolerable. Tramadol helps but makes her sleepy.
We are aT our Wits end. Went to Mayo Clinic for the injections. Her quality of life sucks and our family is frustrated.
Jan0312
19 Dec 2016
Laurie,
I have tried all the medicines you have mentioned but nothing has worked for me. However I have. It tried baclofen at all. Do you think that either the gabapentin or
Lyrics would work if I add the baclofen and at what dosages?
Also, i believe you are a doctor. Can you provide your contact information so that I may be able to see you?
Thank you, Jan
LaurieShay
20 Dec 2016
Jan, I am not a doctor. Just know how to do research. I can't tell you what combination might work, but if you haven't tried the addition of baclofen, I would discuss with your doctor. Sorry I can't help you any further.
Annie B14
15 Feb 2017
Just exhausted and depressed. Had my first botox injection almost two weeks ago. Lost my voice but it is slowly coming back. Had no effect on my cough but did make swallowing a problem so the first week I aspirated some and ended up feeling like I had bronchitis.
Friday I head to my GP's office to ask for Tramadol. I am at the end of options.
Annie
Bubbadawg
8 March 2017
I tried the different medications and had bad side effects except for the gabapentin. I had coughed constantly for 10-12 years or longer. My asthma/allergy specialist diagnosed me with Laryngeal Sensory Neuropahy and told me I must treat the underlying cause of the cough (reflux, allergies with post nasal drip, mild asthma. and he prescribed Gabapentin which helped a little for a short period of time. When Gabapentin no longer worked he sent me to an ENT who prescribed Lyrica and Amitriptyline but was unable to take because of the side effects. He then suggested Botox Injections as a lady resort and what the allergy doctor had suggested might help. After several injections to determine the right dosage, my cough stopped and I can now go about three months between injections. I no longer cough and am very thankful that these two doctors were able to diagnose and solve my problem. It has been a blessing for sure.
Bubbadawg
8 March 2017
Curious as to whether any others have had the same luck as I have had with the Botox injections and become free if the chronic, almost debilitating cough.
Carriesteck
10 Nov 2017
My doctor won’t gve me tramadol.
DDDB
28 Feb 2018
Did the med grade Marijuana help? I am in the same boat after 3+ yrs. At times its very scary to try and catch your breath during cough spasm. Would love to hear more updates?
Carriesteck
21 Nov 2019
Doctors won’t prescribe it!
Jan0312
2 Oct 2020
@Bubbadawg Can you please report in on how you are doing now after your Botox injections? Are you still doing them and are they still working? How's the cough?
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