Anyone have Laryngeal Sensory Neuropathy?

I have many test done and some of them twice and by process of elimination and all the test coming back fine the doctor diagnosed me with LSN.

As of 2019, I was diagnosed with Hypersensitive Laryngeal Disorder/Irritable Larynx Syndrome/Vocal Cord Dysfunction/Paradoxical Vocal Fold Motion, Sensory Neuropathy, etc. and I experience sever symptoms, nearly every day.

Are you still the same way today? You sound like me!!

@tkubby, I apologize for not responding sooner. My throat and voice are slightly worse as far as sensitivity and a raspy voice. I am bothered less by phlegm in my throat and I still limit my talking. I now often have to use speaker on my phone, as my voice is so weak that it cannot be heard when I use my normal talking effort. I want to learn simple signing, not spell signing, to communicate easier when my voice is bad. However, I am somewhat lazy and have not put enough effort into that.

I have asked Mayo connect, and would form it without their help, if people are interested in meeting together at Mayo for a support group. I am not suggesting repeated meetings there because I live in Minneapolis, not Rochester. But I would drive there for a chance to compare notes with others who are struggling also. I am supposed to start anew at Mayo in April and May because I am no better today than I was 2 years ago. They were supposed to get me into the cough clinic way back, but are just doing so now with my insistence and another Doctor referral.

After three years and 10 different ENT’s I finally got Summer. Please read below my doctors email to me:

Nice to meet you today, the receptor I was thinking of is P2RX3. It is receptor involved in pain detection. The medication is called gefapixant. I have to amend what I was saying earlier today - the study was for refractory chronic cough not laryngeal hypersensitivity of the type we suspect you have. Generally speaking refractory chronic cough aka neurogenic cough is thought to be on the same spectrum of laryngeal hypersensitivity conditions so maybe there is some role for this kind of medication in treating your symptoms as well. I do not have experience prescribing it since it is approved only in the EU.

Please see my ENTs note to me:

Nice to meet you today, the receptor I was thinking of is P2RX3. It is receptor involved in pain detection. The medication is called gefapixant. I have to amend what I was saying earlier today - the study was for refractory chronic cough not laryngeal hypersensitivity of the type we suspect you have. Generally speaking refractory chronic cough aka neurogenic cough is thought to be on the same spectrum of laryngeal hypersensitivity conditions so maybe there is some role for this kind of medication in treating your symptoms as well. I do not have experience prescribing it since it is approved only in the EU.

I have coughing out of the blue which is really hard when its during the night. It can be frightening. I'm trying the pressure points to stop the spasm and breathing through a straw but looking for more help. Waiting for a referral to an ENT.
This has been going on since 2013 after I had emergency surgery but getting worse as I age.

What are the pressure points that could help the coughing spasms? I would like to see if that could help me, too.

There is a spot behind the earlobe and above the jaw which when pressure is applied with your index finger can ease a laryngospasm (when it feels like you can’t breathe). Not sure if that’s what you mean when talking about a coughing spasm?