Laryngeal Hypersensitivity and Nerve Pain: What helps?

I was just told I had this sensory issue too by the ENT who in Oct 2021 put me on PPIs and said I had LPR/silent reflux - which did not provide relief and I just completed a Bravo pH study in May to confirm no reflux events. I was searching for information on what this is and how others are being treated too as I was given a label and told there’s nothing to be done other than visit with my PCP for a possible Mayo referral. I don’t have pain though. My throat feels swollen and I go hoarse if I have lengthy conversations. So it seems I have the same label but completely different symptoms. I’ve experienced this since July 2021 when I was on a cocktail of Carbamazepine, Gabapentin, and Baclofen for facial pain experienced after a tooth extraction/dental implant. The good news is I’m off those meds and managing pain with acupuncture. Neurology says my throat issues are not related to my facial pain nor a side effect of the prescriptions. They had mentioned a viral possibility too but if that was the case I would gradually improve in a year’s time. Hoping someone else who’s further along with the diagnosis can shed some light.

I have taken the nerve shots in my neck for about 2 years and have recently stopped bc they didn't really help. My symptom is chronic cough, diagnosed with laryngeal sensory neuropathy. I am scheduled to see a neurologist and a pulmonologist to see if they have any treatments. I have had this since 2017 and the cough is 24//7. The only thing that stops the cough completely is codeine cough syrup which doctors won't give prescriptions for. I have found that Zarbee's cough (etc) syrup made with elderberry helps some. As Thomas Edison said, "I haven't failed, I've found 10,000 ways that don't work." I'm on the trail of anything that can help. Good luck to you and your own search.

@uwmichelle @aniseday @texanna, you may also be interested in this related discussion:
- Anyone have Laryngeal Sensory Neuropathy? https://connect.mayoclinic.org/discussion/larynx-sensory-neuropathy/

Michelle, how long ago were you intubated? Have some of your symptoms improved over time?

Hello @texanna

I'm sorry to hear of the chronic cough you are experiencing. It sounds as if you have tried many different treatments and are still without a good plan for dealing with this problem.

As you say in your post that you are "on the trail of anything that can help," I wanted to let you know about Mayo Clinic's Cough Clinic. You might it helpful to give Mayo a call and see if they think they could help you. Here is a link to information about Mayo's Cough Clinic, https://www.mayoclinic.org/departments-centers/cough-clinic/overview/ovc-20399029.

If you would like to get an appointment (either in person or virtual) here is info on the way to set up an appointment, https://www.mayoclinic.org/appointments.

I would like to hear how you are doing with this health issue. Will you post an update as you are able?

Thank you so much for this suggestion. I went to the link you provided and filled out all the paperwork and was told I would receive a call within 3 business days. I got a call that same afternoon! Needless to say I was very impressed.
Then I was told there are, again, no appointments available in the cough clinic. When I questioned why, I was then told some departments had been discontinued. The reason was due to covid and shortages of staff. I was unable to ascertain whether the cough clinic was discontinue, or whether they just didn't have any available appointments.
I have gone to another thread of people unable to get appointments in neurology, and other departments. I was told last year that I should call for an appointment during the summer when all the snowbirds leave. I was unable to get an appt. last year too.
I am sorry to hear that Mayo is so overwhelmed and understaffed, as its reputation has always been stellar.
I will try to have my doctor send in a referral, as was stated in another thread.
Thank you again, for your cough clinic tip.

There are medication‘s for LSN. But the one that has tested as 85% effective is available only in Japan. It is called LYFNUA (Gefapixant). It is manufactured in Merck Pharmaceuticals, New Jersey. Our FDA has not approved it because it has a side effect in some people of a metallic taste.
They are going to revisit the test for this but they said they did not know when.
The medication that some people are using are the following: Amitriptyline, pre-Gabalin, Gabapentin, etc. I had LSN literally all my life. And I went through all kinds of tests and doctors did not know what this was so they said: allergy or maybe asthma or a maybe reflux. But it wasn’t.
Now doctors are learning about LSN. Hopefully, Merck pharmaceuticals will pursue their second testing of the medication that is currently used and legal in Japan.

I have the same throat pain constantly that has forced me to stop talking completely. But even without talking it still hurts. I’ve also been diagnosed with LSN and I’ve just started the nerve blocks. I’m also on amitryptilin but it’s not working. Did you find something that works for you?

Wow. This new drug sounds encouraging but so sad it’s not available. I am taking Amitriptyline
and it seems to help slightly. Have you taken Gabapentin?

I have had extreme nerve pain in my throat for years. Strangely, it only occurs in the early fall. I have pain swallowing, drinking anything cooler than room temperature, talking, etc. I have had attacks that were so severe that I am afraid to drive on a bad day. I have had the runaround with doctors. My ENT implied it was psychosomatic and then sent me on. I am waiting to get to neurology at our local medical school. Anyone with similar symptoms?