Anyone have Laryngeal Sensory Neuropathy?

My chronic cough started after two severe colds in a row. I just kept coughing. For 30 years. I was treated for asthma (the inhalers made me cough), and allergies (oral meds and weekly shots) without relief. The only thing that worked was antihistamine. I would take up to 10 a day to avoid coughing at work. I was finally diagnosed with laryngeal sensitivity neuropathy by an ENT, who prescribed 5 mg amitriptyline daily. It worked like a charm for a few months until it didnt. I still take allergy meds daily, but i dont think they help. I'm still dependent on antihistamines - every few hours day and night.

I have peripheral neuropathy and was hospitalised in 2022 due to being unable to walk as I could not feel my legs/feet at all.

One symptom that wasn’t connected at that time was an extremely hoarse voice. That went away whilst I was in hospital but as I was being treated with both vitamin IV (banana bag) and Pregabalin I am unsure which treated the hoarse voice.

It’s only through my own research that I found Laryngeal Sensory Neuropathy as a cause for my vanishing voice.

I still have numbness in my legs and feet but have not had a reoccurrence of the voice disappearing. I have been on Pregabalin and a multivitamin (Dolovent) since 2022.

I mention Pregabalin due to finding a study from the National Institute of Health (new members can’t post links) that suggests Pregabalin as a treatment for Laryngeal Sensory Neuropathy.

I’m not a doctor or any flavour healthcare expert. I just like to read up on things that might help me.

Welcome @nickimacme, Thank you for sharing your experience. I'm not sure if these are the references you found but thought I would share them for you since new members are not able to post links for a short period of time to prevent spammers from posting links in our community.
-- An update and systematic review on drug therapies for the treatment of refractory chronic cough: https://pmc.ncbi.nlm.nih.gov/articles/PMC5935050/
-- A new treatment option for laryngeal sensory neuropathy: https://pubmed.ncbi.nlm.nih.gov/19554633/

How is your neuropathy now? Are you managing the symptoms with treatments/therapies?

Hiya, thanks for the reply!!

Those are the references, thanks so much and I totally get the policy, spam links are the worst!!

Also, yes, I haven’t had a flare up of Laryngeal Sensory Neuropathy Since 2022 and I luckily got some feeling back in my legs, enough to walk. The treatment I received in hospital was a mixture of Pregabalin and vitamins, specifically the B’s but also L-Carnitine. I stopped that soon after getting out but still take the multivitamin Dolovent and Pregabalin.

Luckily I’m in Scotland so all the tests (two muscle biopsies and a spinal tap) didn’t bankrupt me.

I’m not sure how much help my input is given the length of time I’ve been free of it but hopefully there can be something familiar that might give someone an answer or avenue to look down. Unfortunately it is an area that is misdiagnosed given the other things it could be and even the loss of my voice wasn’t taken as a symptom despite the peripheral connection. Nobody wants to be Dr Google but sometimes we find our own connections.

An example is my finding a possible cause of the neuropathy, Itraconozole, to treat Aspergillosis, I was on that for years for my lungs. We stopped the meds(me and my lung Dr). I was fine for about a year and my lungs flared up. I’m back on it but at a lower dose and am being monitored by both my Respiratory Specialist and my Neurologist.

Hope this helps!!! Xx

@cougher

I actually joined to share my experience with Laryngeal Sensory Neuropathy to maybe help the OP but I think your post might massively help me.

I had an episode of LSP in 2022 that seemed to subside with my hospitalisation due to extreme Peripheral Neuropathy symptoms in my legs, I couldn’t feel to walk. I wasn’t even treated for the hoarseness but for the legs and the voice came back after Pregabalin and 3 days of IV vitamins 3 times daily.

But, for at least six years I have suffered a constant, non-productive cough. Now I’m wondering if that is also connected. My issue is that I also have lung problems so the cough has been linked to that. I haven’t even mentioned it yet because I didn’t think it was relevant.

Thank you, you’ve given me a lot to think about!!

Let me preface by stating that it all started after pertussis and that my white blood count is low. Thought I had my regular one month cold and did not go to doctor until 8 wks. I was finally diagnosed with a laryngeal sensory neuropathic chronic cough after 8 months of chronic couhing, vomiting, lack of sleep and going to 3 pulmonalogist, 1 infectious disease specialist, 1 gastrologist, and 3 ENT doctors. Had a series of scopes, bloodwork and a Barium Swallow tests. Was told that I have GERD, and that my mild asthma is triggered after a series of violent coughs. Started taking Amitriptyline, Refluxraft (amazon) at night, nexium(am), Trelegy and lots of sugar free Ricola cough drops. Cough calmed down after 12 months. Unfortunately, got the flu in December and cycle started again. Continued taking meds, etc. and caught two more colds which triggered cycle again. I feel like a little mouse on a reel, going around in circles. Try to remain as active/social as possible despite my physical/mental exhaustion. Triggers are cold air, hot flashes, spicy foods, red sauces, onions, perfumes, fumes, etc. Soothe with herbal teas, humidifier, Ricola drops. Topic of injections to throat have surfaced. Yikes. What is happening ?

Hello, I have had LSN for 14 years. I Have tried injections at Mayo which did not work. Now I just started Pregabalin but am hesitant since it’s very restricting. I find it has too many side effects. I was taking BENZONATATE every 4 hours before and am going to go back to that and concentrate harder on speech Therapy & yoga.
Initially I had gone to 7 doctors testing for allergies, asthma, etc.
I also have choking episodes.
Have not tried Botox, but was told that is a final step if nothing else works.