Anyone have Laryngeal Sensory Neuropathy?

what dosage of Amitriptyline where you on? i just got a script for 25mg i think doc submitted for me to try for my lsn

I had been suffering from a debilitating cough and paradoxical vocal fold motion for around 3 years til I finally got the diagnosis. I was even on life support at one stage because my larynx was malfunctioning so badly. I’ve tried nortryptilline, amitryptilline but am now on gabapentin which until recently was working well. I also have seasonal hayfever and Ménière’s disease. My immunologist says the larynx and menieres is related. I’m an ugly mess when they play up at the same time. I have just got my voice back after a week of complete aphonia due to a relapse. When I have an acute attack the only thing that works is CPAP so I’m
Hoping to get a machine soon to have at home to avoid the dash to ED. It’s completely changed my life. I’ve had to retire early and it is socially isolating. But it could be worse.

I should have mentioned, I do take 2 Tramadol and 2 Lyrica daily for my severe coughing. It has helped roughly 80% but the 20% continues causing daily problems. After 20 years, still searching for a total cure of Laryngeal Sensory Neuropathy. Very discouraging!

Welcome, @rgbaker. Am I understanding correctly that at this time you only use the CPAP machine when you have an acute attack? And you don't yet have a CPAP machine at home but use it at the hospital? Has it been recommended to get a home CPAP machine and use it nightly?

Yes. CPAP in hospital. I am seeing a resp physician soon and hoping to get a machine at home. I won’t need it every night, only when I have an acute attack. My episodes are quite extreme unfortunately and CPAP/BIPAP seems to be the only thing that will stop the spasm.

I had one tonic clonic seizure in 2000. Over a period of three years, I gradually lost my upper rangeccx to the point that people have trouble hearing me. Have been scoped an.v d the U of M says only vocal therapy and even with that I could regain 20%. I loved singing, could give speech, modulate my voice. Now I carry a whistle because I cannot scream and feel such a deep loss for my old voice. No one has given me the reason.

You may want to ask your Dr about Hyperbaric oxygen therapy (HBO) I did it and I have stopped coughing - it cleared up sinus drainage also it’s permanent improvement- it changed my life.

Jane, I'd like to bring @hopeful33250 into this discussion. She, too, does vocal therapy and loves to sing.

Have singing exercises ever been suggested to help with vocal rehab? Is that a thing?

The last of the three speech pathologists I worked with, and they all used a keyboard, did get me to a higher pitch and tears sprouted forth. That said, we reviewed the images of my superior laryngeal nerve and was told max improvement after a year would be 20% forever. Have been thinking of getting a keyboard and doing exercises on my own as I cannot afford a specialist more than four times a year. Is there any online resource or manual that you would recommend? I have glottal fry. Thanks! Jane

My only karaoke song is People are Strange brought down.