Anyone have Laryngeal Sensory Neuropathy?

@tkubby
Make that 3. I have been suffering terribly from this condition for over ten years now. Everything you describe is exactly what Ive experienced. I also have chronic Intractable migraine, fibromyalgia (so they think), three herniated disc in my lumbar spine. This unbearable daily coughing is, I believe, taking years off my life. I am currently under the care of Cleveland Clinics Cough Clinic and ENT. I live in Michigan, its not a short hike, but Ive exhausted all specialist here. They have had me taking 150mg of Tramadol/per day. Which helped minimally, but does provide some relief, maybe 30 to 40%. Now the ENT has started throat injections with steroid & lidocaine. They want to do a set of 3, 3 months apart. However, the first set last month Feb, I was absolutely miserable for 3 days post. My cough worsened, I cough all day, the severe sensitivity to air passing through my throat returned with avengence and still has only lessened very little. Now theyre weaning me off Tramadol, which Im completely baffled by since the injections are not helping at all yet. Im beyond frustrated, depressed, hopeless! I go for second set this month, 14th. Im nervous! Doctors said they will probably omit the lidocaine this time, they think it may have created more of a problem, I dont understand why, but hey, theyre the experts, right? My life is distressing, I dont socialize out of a home anymore, going to stores is stressful, going anywhere is stressful. Everything makes me cough, right down to the Nutella I spread on my daughters toast. Im 53, to look at me you'd say I was a picture of health, but literally everyday of my life I feel 80. The only time in this past 10 plus years Ive had any break from this coughing was during my recovery from a double mastectomy in 2016(stg 1 breast CA). I was on Percocet or Oxycodone. Then thereafter for 3 other related surgeries. Sucks... I surely cant stay on strong Opiates. But believe me, Ive been so desperate that I have considered it. I just need help. I cant imagine living out the rest of my life this way. They tell me they have 3 meds in the works, waiting for FDA approval, specifically for LSN. Im holding onto hope they'll be available those of us who suffer with this soon. I dream of what it would be like to not cough anymore, but refrain from that thought too much, as its very painful. My best to you all. Would be nice to converse more with you who suffer from this. The support is so welcomed. Thank you for this post. Ive been searching for other.

Wanted to give an update on my second set of nerve block injections given by ENT at Cleveland Clinic on 3/14/23. They omitted the Lidocaine this round. I did not have the terrible increase in cough/sensitivity as first round, so that was a big relief. However, Im sad to report they have not touched these symptoms one bit. Still coughing frequently throughout my days, mornings are still particularly brutal. Havent gotten a response from my doctors yet. Not sure I'll be traveling the 3.5 hrs back to Ohio and spending another $100 in gas, for zero relief.
Beyond disappointed, once again. Last hope is for the FDA to move their a**es and approve the meds developed for specifically for this condition.

I am interested in treatment with Tramadol and voice therapy. I spent the last 2 years being tested at National Jewish Health in Denver. Believe me National Jewish doesn't leave any stone unturned! Everything has been ruled out for my chronic cough. No GERD, pulmonary problems, or sinus problems. My pulmonologist at National Jewish will not admit I have a nuerogenic cough, she says there is always something underlying a neurogenic cough. After all of my pleading she agreed for me to try amitritypline and later gabapentin. The gabapentin worked for about 3 months, then the cough was back. I'm taking amitritypline now but it's not helping much. I've yet to find a doctor that will work with dosage of these drugs. They prescribe 10mg of amitritypline even though I've heard it could be anything from 10 to 80 mg to help. I've been coughing for 20 years...the last 5 have been the worst. I read about Tramadol in this conversation and I would like to know if anyone is successfully treating a neurogenic cough with it.

I am a self diagnosed sensory neurogenic coughed. I am 53 yrs old and I e been coughing since I was a kid. It comes and goes for no apparent reason. It’s worse at night. I do not cough when I’m sleeping. Triggers are talking, singing, eating, change of position, activity, laughing. Right now I’m taking 400 mg gabapentin split into two doses a day. So far no relief. I’ve seen cardiologists, pulmonologists, ent, allergy docs, was in the hospital for a week with nonstop coughing and no doctor has been able to diagnose me. My cough has taken over my life. Any advice would be greatly appreciated.

Welcome @kmbraze, Sorry you haven't been able to find any relief for the coughing. Here are a couple of reference articles that discuss treatments that might be helpful.

--- The use of neuralgia medications to treat sensory neuropathic cough: our experience in a retrospective cohort of thirty-two patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4358635/
--- A Potential Innovation in Treatment for Neurogenic Cough: Superior Laryngeal Nerve Block:
https://www.hopkinsmedicine.org/news/articles/a-potential-innovation-in-treatment-for-neurogenic-cough-superior-laryngeal-nerve-block.
It sounds like you've seen a lot of different doctors and specialists. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

Welcome @kmbraze, Sorry you haven't been able to find any relief for the coughing. Here are a couple of reference articles that discuss treatments that might be helpful.

--- The use of neuralgia medications to treat sensory neuropathic cough: our experience in a retrospective cohort of thirty-two patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4358635/
--- A Potential Innovation in Treatment for Neurogenic Cough: Superior Laryngeal Nerve Block:
https://www.hopkinsmedicine.org/news/articles/a-potential-innovation-in-treatment-for-neurogenic-cough-superior-laryngeal-nerve-block.
It sounds like you've seen a lot of different doctors and specialists. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

I am interested in treatment with Tramadol and voice therapy. I spent the last 2 years being tested at National Jewish Health in Denver. Believe me National Jewish doesn't leave any stone unturned! Everything has been ruled out for my chronic cough. No GERD, pulmonary problems, or sinus problems. My pulmonologist at National Jewish will not admit I have a nuerogenic cough, she says there is always something underlying a neurogenic cough. After all of my pleading she agreed for me to try amitritypline and later gabapentin. The gabapentin worked for about 3 months, then the cough was back. I'm taking amitritypline now but it's not helping much. I've yet to find a doctor that will work with dosage of these drugs. They prescribe 10mg of amitritypline even though I've heard it could be anything from 10 to 80 mg to help. I've been coughing for 20 years...the last 5 have been the worst. I read about Tramadol in this conversation and I would like to know if anyone is successfully treating a neurogenic cough with it.