1. < Ear, Nose & Throat (ENT)

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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Mentor
John, Volunteer Mentor | @johnbishop | Jul 2, 2022
In reply to @nitsirk "Interesting. I think I get this sometimes. I have Wartenbergs Migratory Sensory Neuropathy, so can get..." + (show)
@nitsirk

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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Welcome @nitsirk, It must be really difficult having such a rare form of neuropathy. For others who might not know what it is...

"What is Wartenberg's migratory sensory neuropathy?
Migrant sensory neuropathy (Wartenberg's migrant sensory neuritis) is characterized by sudden numbness in the distribution of one or multiple cutaneous nerves. The limited number of published clinical studies seems to suggest that it is a rare disorder. Most studies included few patients and were retrospective."
---Wartenberg’s migrant sensory neuritis: a prospective follow-up study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/

It's good that you found something that helps provide relief for acute attacks. Have you done any research on the condition?

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1 reply
nitsirk | @nitsirk | Jul 2, 2022

It’s even more annoying since the Wikipedia editors deleted my 10 year old page on it for lack of some inverted commas 🤦‍♀️

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nitsirk | @nitsirk | Jul 2, 2022
In reply to @johnbishop "Welcome @nitsirk, It must be really difficult having such a rare form of neuropathy. For others..." + (show)
@johnbishop

Welcome @nitsirk, It must be really difficult having such a rare form of neuropathy. For others who might not know what it is...

"What is Wartenberg's migratory sensory neuropathy?
Migrant sensory neuropathy (Wartenberg's migrant sensory neuritis) is characterized by sudden numbness in the distribution of one or multiple cutaneous nerves. The limited number of published clinical studies seems to suggest that it is a rare disorder. Most studies included few patients and were retrospective."
---Wartenberg’s migrant sensory neuritis: a prospective follow-up study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/

It's good that you found something that helps provide relief for acute attacks. Have you done any research on the condition?

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But yes, I’ve been monitoring and researching this and my other weird disabilities since about 2005 with daily Google alerts of new stuff. When you’ve seen people at the highest level in the country and left them bemused, you’ve got to be your own expert! That and the NHS and a good GP and life is good, if limited mobility wise.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 2, 2022
In reply to @nitsirk "But yes, I’ve been monitoring and researching this and my other weird disabilities since about 2005..." + (show)
@nitsirk

But yes, I’ve been monitoring and researching this and my other weird disabilities since about 2005 with daily Google alerts of new stuff. When you’ve seen people at the highest level in the country and left them bemused, you’ve got to be your own expert! That and the NHS and a good GP and life is good, if limited mobility wise.

Jump to this post

Have you tried searching using Google Scholar? -- https://scholar.google.com/
I like that you can sort the search results by year to see the most current links.

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1 reply
deez61 | @deez61 | Jul 2, 2022
In reply to @nitsirk "Interesting. I think I get this sometimes. I have Wartenbergs Migratory Sensory Neuropathy, so can get..." + (show)
@nitsirk

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 🤣

Jump to this post

wow, I’ve never heard of that . Hope you find peace with treatment ! I think natural treatment like cannibas is a good idea .. I’m not a fan of script drugs if at all possible for sure . Hope that helps you

REPLY
1 reply
nitsirk | @nitsirk | Jul 3, 2022
In reply to @johnbishop "Have you tried searching using Google Scholar? -- https://scholar.google.com/ I like that you can sort the..." + (show)
@johnbishop

Have you tried searching using Google Scholar? -- https://scholar.google.com/
I like that you can sort the search results by year to see the most current links.

Jump to this post

Yes thank you, I also joined the British library so I could buy access to a couple of papers that were otherwise beyond big paywalls. Thanks for the tip though 🙂

REPLY
nitsirk | @nitsirk | Jul 3, 2022
In reply to @deez61 "wow, I’ve never heard of that . Hope you find peace with treatment ! I think..." + (show)
@deez61

wow, I’ve never heard of that . Hope you find peace with treatment ! I think natural treatment like cannibas is a good idea .. I’m not a fan of script drugs if at all possible for sure . Hope that helps you

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Nor me in big quantities, but I was going mad with pain and lack of sleep! I have always stuck with complementary treatments though like acupuncture and chiropractic to minimise the drug cocktail!

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strawboy12 | @strawboy12 | Jul 3, 2022
In reply to @deez61 "I have not been diagnosed with LSN but one of the ENT docs suggested this possibly..." + (show)
@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 hav had the same problem as you for a time and i find vitamin c very good for this complaint 2000 mg a day .
Also what is great is organic Rosehip powder organic . Stay away from gluten and cows milk change your air conditioner filters every 3 months. It works .

REPLY
1 reply
deez61 | @deez61 | Jul 3, 2022
In reply to @strawboy12 "I hav had the same problem as you for a time and i find vitamin c..." + (show)
@strawboy12

I hav had the same problem as you for a time and i find vitamin c very good for this complaint 2000 mg a day .
Also what is great is organic Rosehip powder organic . Stay away from gluten and cows milk change your air conditioner filters every 3 months. It works .

Jump to this post

have to check into the Rosehip powder . I do organic coconut milk for protein shakes , no dairy here 🙂 as well as vit C not 200 mg thigh so I can bump that up with the other vitamins . Did by a nice air purifier . 🙂 keep pushing along . thanks

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texanna | @texanna | Jul 9, 2022

Well here is an interesting update. I have a severe back problem too, and am usually in a lot of pain. My doctor put me on a 9 day course of a steroid to reduce inflammation and lesson paid. 3x daily for 3 days, 2x daily for 3 days, 1x daily for 3 days. The first day took away ALL pain. After about 2 days I noticed I WAS NOT COUGHING ANYMORE. I did not cough for the rest of the treatment! Day 10 and I'm through with the medication and STILL NOT COUGHING. Even if this is a short respite from the cough, why in God's name, after SIX YEARS OF COUGHING, did not ONE SINGLE DOCTOR ever try this? I begged for 6 years for something, ANYTHING, to stop the cough, even if for a day or less, a night, so I could sleep. Not one doctor ever mentioned it. The steroid was prednisone, 20 mg. Not great side effects, but you feel fantastic for the first 4 or 5 days. Coming down is 'shakey.' Oh, and you're hungry...really hungry. Have celery, nuts, seeds, fruit on hand. Not oreos.

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