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Anyone have Laryngeal Sensory Neuropathy?

Posted by tkubby @tkubby, Jan 23, 2019

I am looking to talk with anyone that has been told they have larynx sensory neuropathy. In other words, over active nerves in the larynx.

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jojo1963 | @jojo1963 | 1 day ago
In reply to @tkubby "Hi Joe. I have had a chronic cough for 20 years. It started out with a..." + (show)
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Hi Joe. I have had a chronic cough for 20 years. It started out with a mild cough and clearing of the throat but has continuously got worse and is a constant daily thing from the time I get up in the morning till I go to bed. I am also bothered with the cough during the night. Over the years I have had so many test (some of them repeated) and nothing was ever discovered to be causing the cough which was a good thing but yet I still was coughing. I’ve trued every thing I could think of or heard to try and no relief. I have had doctors tell me I was crazy and making myself cough. Nobody could ever make theirselves cough like I do. I cough so bad at times I gag and throw up. I pull muscles in my neck, chest and stomach. My heart beats so fast and pounds at times. It’s so very frightening. I finally went to a cough clinic at Cleveland Clinic. My process of elimination I was told I had LSN. I was put on Gabapentin, amitriptyline and currently taking tramadol several times a day. I still cough daily but if I stop the tramadol I cough non stop all day and night. I recently had a nerve block down in my neck but absolute no relief from that. I was told my only other option is Botox but there isn’t good results with the Botox so I do not want to try that. I don’t know where else to turn. I can’t imagine living the rest of my life like this.

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@tkubby This could just about be my story! I was reading through and kept going back to the beginning to see if I had originally written this. The only difference is I went to Bastian's clinic and Mayo instead of Cleveland. Tramadol has been my savior for about 25 years. Haven't tried the Botox or the the cutting of the nerve but have done nerve blocks done with little improvement. I hope something new comes along soon! We've been waiting for the "miracle drug" to be approved for years now but it keeps getting rejected by the FDA. Maybe some day...

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isfa | @isfa | 1 day ago
In reply to @bpske "Hello. I've had chronic throat clearing for 50 years. I was diagnosed with Reflux 20 years..." + (show)
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Hello. I've had chronic throat clearing for 50 years. I was diagnosed with Reflux 20 years ago and prescribed, at the time, aciphex. I took it and found no relief. I was switched to Omeprazole about 15 years ago. No relief. My new GP, suggested laryngeal geal hypersensitivity. He prescribed me Pregabalin, 75 mg, twice a day. The difference is night and day. I still have triggers, tomato, tomato sauce, chocolate, caffeine, onions and garlic. It's not a "cure", bit it is a great treatment. I've been taking it for over a year now and I'm very pleased.

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@bpske do you take Pregabalin all the time, everyday? Are there times when your LSN subsides and you stop the Pregabalin? My LSN usually lasts for 2-3 months, then subsides until the next cold, and starts up again. I’d like to try using Pregabalin during an acute phase only, but unsure if you can use it this way?

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bpske | @bpske | 1 day ago
In reply to @isfa "@bpske do you take Pregabalin all the time, everyday? Are there times when your LSN subsides..." + (show)
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@bpske do you take Pregabalin all the time, everyday? Are there times when your LSN subsides and you stop the Pregabalin? My LSN usually lasts for 2-3 months, then subsides until the next cold, and starts up again. I’d like to try using Pregabalin during an acute phase only, but unsure if you can use it this way?

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@isfa I take pregabalin twice a day, everyday. My reflux does subside, but I continue taking the pregabalin. Without taking it, my constant throat clearing will start again. It "calms" the nerves in my throat, because, according to my doctor, the nerve that goes down the throat, in my case is fried and hyper sensitive. Hence, the constant throat clearing, which started 50 years ago because of laryngeal/pharyngeal reflux. I'm not sure in your case if starting and stopping would be beneficial. That's something you need to discuss with your doctor. Good luck!

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