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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@jaygats

thanks, @colleenyoung, yes AZ is possible, ideally of course if those tagged can recommend someone between San Diego and Los Angeles that would be ideal.

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Jay, here is the contact information to request an appointment at Mayo Clinic in Arizona http://mayocl.in/1mtmR63

@greenbergman, have you looked into Cognitive Behavior Therapy (CBT) to manage the psychosomatic reaction? CBT teaches new ways to cope and to gain a deeper understanding of the condition or circumstances that lead to the symptoms.

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@colleenyoung

Jay, here is the contact information to request an appointment at Mayo Clinic in Arizona http://mayocl.in/1mtmR63

@greenbergman, have you looked into Cognitive Behavior Therapy (CBT) to manage the psychosomatic reaction? CBT teaches new ways to cope and to gain a deeper understanding of the condition or circumstances that lead to the symptoms.

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Yes, I had forgotten to mention CBT so I'm glad you brought it up. I believe it was the neurologist who suggested it. The problem was that I couldn't find one who worked with this type of condition (let alone one who takes insurance).

I think I'll also look for a kazoo!

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@greenbergman

Yes, I had forgotten to mention CBT so I'm glad you brought it up. I believe it was the neurologist who suggested it. The problem was that I couldn't find one who worked with this type of condition (let alone one who takes insurance).

I think I'll also look for a kazoo!

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Greenbergman, I found this resource of self-guided CBT exercises.
- 25 CBT Techniques and Worksheets for Cognitive Behavioral Therapy https://positivepsychology.com/cbt-cognitive-behavioral-therapy-techniques-worksheets/

Maybe a good place to start? I love the kazoo idea.

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@joanna48

I have recently self diagnosed with LSN after having various tests done including manometry and videofluroscopy. I trace my cough back to years of untreated reflux. I often cough over food and have to really limit my diet fo soft foods. There don't seem to be many folk on this blog with LSN...I wonder if it is an uncommon complaint. Do you know? I am getting some swalloing and cough speech therapy which so far has not made any difference. I wonder if you are still on this blog. If so I would appreciate hearing from you.

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Hello. I do check this site from time to time. I am still bothered daily with LSN. As of now I take 3 tramadol daily and also take medical marijuana CBD drops to help lessen my cough. I also know what foods I should avoid to trigger it ( crackers, pretzels, nuts, chips, anything dry and crunchy) I have just got to the point that I accept that I have to live like this the rest of my life. I have tried a few times to cut back on my tramadol but within a week I start coughing worse and need to go back to 3 a day. I am now at the point that I do still cough daily but there are some days that it is not that often. Some days I do have attacks still that cause me to gag, pull muscles and can feel my heart racing. It’s terrible to have to live with LSN. It seems to be rare and unfortunately we are two of the unlucky ones that seem to have it. 😢

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@colleenyoung

@jaygats, welcome back. @bakergirl talks about getting good care at Mayo Clinic in Arizona with both a doctor and vocal therapist. See the exercises and recommendations she posted here: https://connect.mayoclinic.org/comment/241178/
Might traveling to AZ be a possibility for you?

I'm also tagging @tkubby @mjahall @kimduncan1211 @cbcbasket @wlesikar @arlinebringhurst @sj1950 @jnttaz @joanna48 to see if they have LSN physician recommendations for California.

Welcome @greenbergman. In an earlier message, @johnbishop shared this link.
- Laryngeal Sensory Neuropathy How to Diagnose & Treat and its Relation to LPR https://www.wipeoutreflux.com/laryngeal-sensory-neuropathy/

Has the root cause of your chronic throat clearing been determined?

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@colleenyoung, thanks for tagging me. I'm in TX though so no CA recommendations. A quick update on me though (in case anyone else has noticed this)... I take Tramadol every day for something else AND I've worked from home for 16 months and haven't had one cold the whole time. My throat issues are about 95% better. Not sure if it's the Tramadol drying up drainage and reducing sensitivity along with no colds but I have to wonder if this has given my throat time to heal.

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Has any one tried Amitriptyline to treat LSN and had any success? any adverse side effects? I have tried Tramadol and Lyrica both had no effect. I have tried Gabapentin and it helped but has side effects. Amitriptyline seems to be another option I may ask my doctor about.

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@jaygats

Has any one tried Amitriptyline to treat LSN and had any success? any adverse side effects? I have tried Tramadol and Lyrica both had no effect. I have tried Gabapentin and it helped but has side effects. Amitriptyline seems to be another option I may ask my doctor about.

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π™±πšŽπšŽπš— πšπšŠπš”πš’πš—πš πšŠπš–πš’πšπš›πš’πš™πšπš’πš•πš’πš—πšŽ πšπš˜πš› πšœπšŽπšŸπšŽπš›πšŠπš• πš’πšŽπšŠπš›πšœ πšπš˜πš› πšŒπš‘πš›πš˜πš—πš’πšŒ πš–πš’πšπš›πšŠπš’πš—πšŽπšœ. π™½πš˜ πšœπš’πšπšŽ 𝚎𝚏𝚏𝚎𝚌𝚝𝚜

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@sanway

π™±πšŽπšŽπš— πšπšŠπš”πš’πš—πš πšŠπš–πš’πšπš›πš’πš™πšπš’πš•πš’πš—πšŽ πšπš˜πš› πšœπšŽπšŸπšŽπš›πšŠπš• πš’πšŽπšŠπš›πšœ πšπš˜πš› πšŒπš‘πš›πš˜πš—πš’πšŒ πš–πš’πšπš›πšŠπš’πš—πšŽπšœ. π™½πš˜ πšœπš’πšπšŽ 𝚎𝚏𝚏𝚎𝚌𝚝𝚜

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I took one pill of Amitriptyline years ago and next day woke up to cotton mouth and felt really odd so didn't finish prescription, however, as with Wayne and many others, they can take it without adverse side effects. I did have my DNA checked against meds and under "Psychiatry" is listed for my DNA: AMITRIPTYLINE as having "Major gene-drug interaction"but this was after the above occurrence....... had the swab of cheek and sent away for the Oneome brand DNA test but was expensive; this was done after the above reaction. However, doctors don't have the time to look at my pages of test results so have realized a bit late that its up to me to take report with me to dr, especially if new dr or specialist, and show them and get their feedback. Best of luck, J.

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@lacy2

I took one pill of Amitriptyline years ago and next day woke up to cotton mouth and felt really odd so didn't finish prescription, however, as with Wayne and many others, they can take it without adverse side effects. I did have my DNA checked against meds and under "Psychiatry" is listed for my DNA: AMITRIPTYLINE as having "Major gene-drug interaction"but this was after the above occurrence....... had the swab of cheek and sent away for the Oneome brand DNA test but was expensive; this was done after the above reaction. However, doctors don't have the time to look at my pages of test results so have realized a bit late that its up to me to take report with me to dr, especially if new dr or specialist, and show them and get their feedback. Best of luck, J.

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Hello Lacy,
Thanks for sharing your story. Very interesting how things that we take for granted, such as a particular medication, can have such varying affects between individuals.

Very best wishes to you.

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@lacy2

I took one pill of Amitriptyline years ago and next day woke up to cotton mouth and felt really odd so didn't finish prescription, however, as with Wayne and many others, they can take it without adverse side effects. I did have my DNA checked against meds and under "Psychiatry" is listed for my DNA: AMITRIPTYLINE as having "Major gene-drug interaction"but this was after the above occurrence....... had the swab of cheek and sent away for the Oneome brand DNA test but was expensive; this was done after the above reaction. However, doctors don't have the time to look at my pages of test results so have realized a bit late that its up to me to take report with me to dr, especially if new dr or specialist, and show them and get their feedback. Best of luck, J.

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Lacy, Amitriptyline gave me similar symptoms but I was unable to function. All I felt like doing was sitting and staring but thank goodness I only took it for one day! The good news is it stopped my coughing. I've thought about trying a lower dose of Amitriptyline but at that time I never wanted to take it again. I have taken a small amount of Phenergan with Codeine, which does work, but I only take it when I have to because it will cause some sleepiness but it is mild compared to Amitriptyline.

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