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Anyone have Laryngeal Sensory Neuropathy?

Ear, Nose & Throat (ENT) | Last Active: Feb 17 4:40pm | Replies (186)

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@ameli9906

@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.

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Replies to "@tkubby Make that 3. I have been suffering terribly from this condition for over ten years..."

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.