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.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

I have not been diagnosed with LSN but one of the ENT docs suggested this possibly .. after negative work ups on all gastroenterologist, speech therapy , endoscopy , pulmonary , ct scan etc.. started 6 years ago after an ear infection I had this phlegm cough and clearing my throat daily and constantly . It’s like 15 min wet cough with phlem attacks I’m 60 and in great health other than this . Tried every ent post nasal drip treatments , rinses decongestants , steroid sprays .. nothing has helped me . Trying to pin point triggers doesn’t work like ya read about either . there is no rhyme or reason it seems it’s a mystery to get the right diagnoses . It does as well become very depressing and hard not to be running to new docs as like the gastroenterologist I saw acted like there isn’t any proof of reflux to be causing this so just take flonase and ya be good .. that’s hard when ya feel like your loosing your mind and no one gets it 😢 especially when someone tells you it’s in your head .

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I'm sorry to hear you have been having these difficulties.
And the medical profession needs to stop making people feel like it's in their head.
You know your body. Trust your instincts.

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@deez61

I have not been diagnosed with LSN but one of the ENT docs suggested this possibly .. after negative work ups on all gastroenterologist, speech therapy , endoscopy , pulmonary , ct scan etc.. started 6 years ago after an ear infection I had this phlegm cough and clearing my throat daily and constantly . It’s like 15 min wet cough with phlem attacks I’m 60 and in great health other than this . Tried every ent post nasal drip treatments , rinses decongestants , steroid sprays .. nothing has helped me . Trying to pin point triggers doesn’t work like ya read about either . there is no rhyme or reason it seems it’s a mystery to get the right diagnoses . It does as well become very depressing and hard not to be running to new docs as like the gastroenterologist I saw acted like there isn’t any proof of reflux to be causing this so just take flonase and ya be good .. that’s hard when ya feel like your loosing your mind and no one gets it 😢 especially when someone tells you it’s in your head .

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@deez61, It sounds like you've been through the wringer when it comes to trying to figure what is going on that is causing the wet cough and flem attacks. I know you have tried a lot of stuff and seen a lot of doctors who don't seem interested. I think you know your body and symptoms and it's too bad non of the doctors are in tune with what you are telling them.

I'm not sure where you have been seen but have you thought about seeking help or a second opinion at a major teaching hospital or health facility like Mayo Clinic? I think what is key in a difficult situation like yours is a health system with multidisciplinary teamwork and patient centered healthcare where a team of doctors work together to help the patient.

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@deez61

I have not been diagnosed with LSN but one of the ENT docs suggested this possibly .. after negative work ups on all gastroenterologist, speech therapy , endoscopy , pulmonary , ct scan etc.. started 6 years ago after an ear infection I had this phlegm cough and clearing my throat daily and constantly . It’s like 15 min wet cough with phlem attacks I’m 60 and in great health other than this . Tried every ent post nasal drip treatments , rinses decongestants , steroid sprays .. nothing has helped me . Trying to pin point triggers doesn’t work like ya read about either . there is no rhyme or reason it seems it’s a mystery to get the right diagnoses . It does as well become very depressing and hard not to be running to new docs as like the gastroenterologist I saw acted like there isn’t any proof of reflux to be causing this so just take flonase and ya be good .. that’s hard when ya feel like your loosing your mind and no one gets it 😢 especially when someone tells you it’s in your head .

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I hear you. Took me 4 yrs to find a diagnosis from an ENT. Since then took low level antidepressants, gabapentin, steroid shots in the vagus nerve in my neck, nothing really helped. I have found an over the counter cough syrup with Elderberry called Zarbee's which helps the cough...I take mostly at night so I can sleep a little. For the phlegm attacks I don't have any suggestions, thankfully I don't have that symptom. Acupunture? I've tried a little and it gave me back some energy, but it's 6 hrs away and I only had 2 treatments. If you have a chinese doc close by, you might try that. I've kinda given up on regular docs!!
Good luck!

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@texanna

I hear you. Took me 4 yrs to find a diagnosis from an ENT. Since then took low level antidepressants, gabapentin, steroid shots in the vagus nerve in my neck, nothing really helped. I have found an over the counter cough syrup with Elderberry called Zarbee's which helps the cough...I take mostly at night so I can sleep a little. For the phlegm attacks I don't have any suggestions, thankfully I don't have that symptom. Acupunture? I've tried a little and it gave me back some energy, but it's 6 hrs away and I only had 2 treatments. If you have a chinese doc close by, you might try that. I've kinda given up on regular docs!!
Good luck!

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hah, indeed .. I had those steroid shots in my neck as well .. other than the freaky feeling of not swallowing for a bit didn’t help .. who knows really, Does feel good when I’ve had a cocktail tho, takes my mind off it ! It’s not a fun gig for sure . thanks for your reply too

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@deez61

I have not been diagnosed with LSN but one of the ENT docs suggested this possibly .. after negative work ups on all gastroenterologist, speech therapy , endoscopy , pulmonary , ct scan etc.. started 6 years ago after an ear infection I had this phlegm cough and clearing my throat daily and constantly . It’s like 15 min wet cough with phlem attacks I’m 60 and in great health other than this . Tried every ent post nasal drip treatments , rinses decongestants , steroid sprays .. nothing has helped me . Trying to pin point triggers doesn’t work like ya read about either . there is no rhyme or reason it seems it’s a mystery to get the right diagnoses . It does as well become very depressing and hard not to be running to new docs as like the gastroenterologist I saw acted like there isn’t any proof of reflux to be causing this so just take flonase and ya be good .. that’s hard when ya feel like your loosing your mind and no one gets it 😢 especially when someone tells you it’s in your head .

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A lot of us get it, unfortunately not the docs because there seems to be no solution. I’m on PPIs and allergy meds and still have coughing episodes throughout the day. Someone did post about gabapentin and a potential treatment called BLUE-5937 which sounds helpful.

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@wendymb

A lot of us get it, unfortunately not the docs because there seems to be no solution. I’m on PPIs and allergy meds and still have coughing episodes throughout the day. Someone did post about gabapentin and a potential treatment called BLUE-5937 which sounds helpful.

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Wendy , I hope you did just trial on those ppls? took my issue of them trying to push those on me that I never knew my poor mother at 81 had been on that crap for many years !! pisses me off sooooo bad her docs didn’t even see meds and ask why this was going on ?! no or ever should be on those for more than three months trial .. it’s a bandaid for something else - you tube “causes of constant phlegmy throat mucus .. gives a run down on 4 reasons .. there is such a divide on ENTs about reflux and LPR .. it’s a crab shoot . But the video is interesting

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Interesting. I think I get this sometimes. I have Wartenbergs Migratory Sensory Neuropathy, so can get any SN/SFN symptoms anywhere without notice for however long it feels like taking! I found gabapentin awful, as it screwed up my speech centres. I was on opiates and other painkillers and amitriptyline and citalopram, but have now almost cut out the opiates and paracetamol with medical cannabis. I have found 5 elements style acupuncture extremely good for acute attacks though, and can feel a a massive reduction (50-80% by area) the next day after a treatment. I sometimes literally draw lines round the affected areas to make my therapists life easier 🤣

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@deez61

Wendy , I hope you did just trial on those ppls? took my issue of them trying to push those on me that I never knew my poor mother at 81 had been on that crap for many years !! pisses me off sooooo bad her docs didn’t even see meds and ask why this was going on ?! no or ever should be on those for more than three months trial .. it’s a bandaid for something else - you tube “causes of constant phlegmy throat mucus .. gives a run down on 4 reasons .. there is such a divide on ENTs about reflux and LPR .. it’s a crab shoot . But the video is interesting

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Thanks. I’ve been concerned about PPI use but have been on them for many years. How did they affect your mom?
I’m still looking forward to the BLU.5937 for those of us with chronic cough.

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@wendymb

Thanks. I’ve been concerned about PPI use but have been on them for many years. How did they affect your mom?
I’m still looking forward to the BLU.5937 for those of us with chronic cough.

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can I ask why ? have u done the research on then ? all I can tell you is to get off them honey .. do your research 🧐 have you had the endoscopy? the ph test with impedance? They deplete the bodies ability to absorb B vitamins as well as ruin the gut microbial needed acid for digestion .. I’m no way a doc but have researched much on those bandaids lol .. my mother has dementia now , can’t say it was from that tho honey .. sometimes us kids have to be our parents advocate! Just the only thing good out of my issue early on . I told her to stop as she did and she actually said “ I don’t think I have reflux “ weird huh 🤔

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