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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@tkubby

I recently was certified for medical marijuana. I have tried several different kinds and finally have had great success with CBD drops. They are a 10:1 ratio of CBD to THC. I was told that CBD works best when it is kept in your system constantly. It has helped tremendously with my sensory neuropathy cough. After many many years I have found some relief. I am still currently taking tramadol but would like to see if I can wean off of that and just continue with the CBD drops.

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What brand are you taking?

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@tkubby

I recently was certified for medical marijuana. I have tried several different kinds and finally have had great success with CBD drops. They are a 10:1 ratio of CBD to THC. I was told that CBD works best when it is kept in your system constantly. It has helped tremendously with my sensory neuropathy cough. After many many years I have found some relief. I am still currently taking tramadol but would like to see if I can wean off of that and just continue with the CBD drops.

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How much do you take daily?

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@mexikaren

How much do you take daily?

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I've been researching CBD/THC today. There's a lot to choose from. Can you tell us how many mg CBD and how many mg of THC in the drops.

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I had covid in 2020 without knowing it until my yearly physical in January 2021. After receiving the vaccination in March 2021, all was good until around the end of October. I started experience voice issues, whispery voice, difficulty speaking. My physician referred me to an ENT specialist. I have had voice therapy treatments numerous sessions. They began botox injections last year. I am still to this day struggling speaking; still whispery voice. I am an instructor in a youth outreach, worship leader in church. This has hindered my going forward in these areas. I am wondering if I should go to the Mayo Clinic for evaluation. I am scheduled for another botox injection, July 27th.....this will be 3rd one since 2021....can only receive every 3 months. They are trying to determine the correct dosage of the injection as well as the correct muscles to inject. Please advise

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@2011panc

@tkubby I have not been told that I have larynx sensory neuropathy. I have noticed changes in my voice and throat that I associate with reflux and many intubations. My throat is sensitive (mildly achy) most of the time and my voice is scratchy. I almost always have a buildup of phlegm in my throat. I do not talk as much as I once did and no longer attempt to sing. I used to talk quite a lot and sang in choirs since my youth. I can no longer do phone work because after 1/2 day I lose my voice. Are these symptoms similar to yours?

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I have had all of those symptoms since I had stage 4 cancer.. no one ever tried to help me .. good luck

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@maggiemayl

I've had this horrible problem since 2007 following a severe sinus infection. It took doctors 2 years to diagnose it. I was tested for GERD, asthma, allergy, all negative. I have had mild success with Gabapentin (300mg/3 per day) combined with Amitriptyline (10mg/2 per day) but I still cough a great deal, especially in the mornings and after I eat a meal. I will definitely be trying ZARBEE's cough syrup as suggested by texanna in the previous post. I too have pulled muscles and made myself sick by coughing so hard. I'm tempted to increase the dosage on the Gabapetin if the doctor is willing. I always get the feeling that the doctors just wish you would go away. I'm seeing a PA in an ENT office and he is the first person I've seen that has taken an interest and listens to me.
It remains to be seen if he has any suggestions other than what I've heard for the past 11 years.
This condition changes your life. I'm afraid to go to movies, church, concerts as well as a host of other things. During COVID, people in stores would glare at me as I coughed my way up and down the aisles. I'm sure if I hadn't been wearing a mask, I would have been kicked out of the store.

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I have the same problem since 2007 after uri and stress time. After that everything cures but throat clearing and cough never went away. Every day every day every day. Been taking amitriptyline and gabapentin since 2016 it helped a lot but not 100%. I would say some time 80% some time 60% and some time 40% depending on how bad or good and how much i eat and stay away from anxiety and stress but its hard these days So many things triggers that stress and anxiety and way you eat and what you eat. Cutting alcohol is also helpful. When i have cold it feels more problematic.

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Has Laryngopharyngeal reflux (LPR) also known as “silent reflux” been considered in your case? It can be managed with diet not medication.
Check it out with a reputable ENT. It may be worth your while!
All the best!

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This is my first post. So excited to find a group of people struggling with my same condition.
I have had my cough for 26+ years. Been diagnosed with all of the above (reflux, asthma, etc) and then my allergist said he’d been reading and doing research on LSN with vocal cord dysfunction. So I tried amitriptyline with speech therapy.
Worked for a while then I started having short term memory loss. I will say the speech therapy was helpful because I recognized after this length of time I not only had a chronic cough I had a “habit”. That’s where the speech therapy helped. She had me puff when I needed to cough. At first I puffed non stop because that was the only way I could control my cough.
Stopped amitriptyline, tried gabapentin, now I’m on 50mg of tramadol. It helps. I can sleep thru the night but may need to increase so I can make it thru the day and need to be “puffing” as well.
Im 76 years of age and am now incontinent, have A-fib and have lost the hearing in my left ear. (I think this cough has caused some of this damage to my body). I also can only sleep on my right side otherwise I start coughing.
Mayo in Jacksonville ruled out, thru testing, asthma, reflux, and have also given me a diagnosis of exclusion.

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I have had a constant chronic cough for over 20 years. I have been to numerous specialists, had numerous tests, but every cause has been ruled out. Why do you think you have Laryngeal Sensory Neuropathy? Is it just a diagnosis of exclusion?

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@onmayo

I have had a constant chronic cough for over 20 years. I have been to numerous specialists, had numerous tests, but every cause has been ruled out. Why do you think you have Laryngeal Sensory Neuropathy? Is it just a diagnosis of exclusion?

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My allergist is the one who gave me the diagnosis of laryngeal sensory neuropathy with vocal chord dysfunction (also laryngeal spasm with vocal chord dysfunction). He had been looking into it because he was seeing mostly women my age with long term undiagnosed cough. He has been very supportive of me going other places to try and solve this cough. I went to Mayo when I was being treated for asthma. That’s where I heard the term “diagnosis of exclusion”. Which makes sense after very thorough testing thru the ENT department and they were able to rule out asthma, reflux, etc and all the things I was have been diagnosed with before, but still could not identify the cause. Mayo was a wonderful experience.
I’ve also had three episodes in the past of bronchospasm in the middle of the night where I felt as if I could not breathe. (Almost like a child with croup). Lasted a few seconds, feels like minutes, only able to get the tiniest bit of air. Panic. Years ago I had a partial thyroidectomy due to a nodule on my thyroid. This could be the cause of my hypersensitive larynx.
I have tried amitriptyline, gabapentin, (I think lyrica) and am now trying Tramadol.
Definitely have had to do gradual increases in dosage of each. Right now I’m on tramadol (50mg). Has helped but not long term, calms my cough thru the night and morning. But by the end of the day I’m coughing like crazy.
It’s been a difficult thing to live with. You become anxious any time you have to be around a group or quiet (funeral, wedding, concert). And the anxiety makes it worse.
Maybe an anti anxiety medication would be a helpful thing to take in combination with meds for the spasm.
I don’t know. And for now it stumps the doctors, mine at least.
Mine has been working with me for years. Last time I saw him, his PT and a homeopathic. I ask “do you think I’m a hypochondriac, that I’m making this up”. Both my doctor and the PT said ABSOLUTELY NOT. What you have is very real. We just can’t figure it out. He’s hoping to be approved for new drug trials. I’m definitely a candidate if he does.

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