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Anyone have Laryngeal Sensory Neuropathy?
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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Welcome @cookieinaz, I know it has to be difficult to live with LSN and a chronic cough and not get much relief if any. I did see a small study saying that Lyrica may be helpful but it was a 2009 paper --- A new treatment option for laryngeal sensory neuropathy: https://pubmed.ncbi.nlm.nih.gov/19554633/
You mentioned years of treatment and different meds. I'm wondering if they may have been similar to this information from Mayo Clinic -- Cough Clinic employs novel pharmacologics to address unexplained or refractory chronic cough: https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/cough-clinic-employs-novel-pharmacologics-to-address-unexplained-or-refractory-chronic-cough/mac-20510246
It sounds like you have a really good doctor who is willing to work with you. Have they offered any other suggestions for treatment to try?
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1 ReactionThank you for your helpful information. I have applied for an appointment at Mayo in Scottsdale.
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1 ReactionWhat side effects did your doctor specify if taking Amitriptyline? Thank you.
Drugs.com has a list of side effects for Amitriptyline here https://www.drugs.com/amitriptyline.html. I think you might want to discuss with your doctor if you are having any side effect.
He didn't say, and because I have a fear of adverse side effects, I didn't ask specifically.
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1 ReactionI was diagnosed with LSN a few years ago and have tried amytriptylline, nortryptilline, another that I can’t remember but have settled on gabapentin which works for me. I still have triggers (candles, diffusers, dust etc etc) and episodes but have found that CPAP or BIPAP works for me to splint my larynx open during an acute attack and on one occasion was on a ventilator for 24 hrs. I’ve also recently been diagnosed with sleep apnoea so have acquired a CPAP machine for that use but also for the laryngeal problem. I’m somewhat complex in that my soft palate closes when I blow my nose making it difficult and when I lay flat on my back without a pillow my soft palate closes whilst still awake. So I have a neurological/functional issue.
I also have Ménière’s disease which is thought to be related because the superior laryngeal nerve, vagus nerve and vestibular nerve have close origins. So my life has changed a lot in recent years but it could be a lot worse.
I have had a cough for over 5 years and my ENT diagnosed me Neurogenic cough reflex. Is this the same as LSN? I have tried amitriptyline and gabapentin with nothing but side effects. He recently started doing injections to block the nerve with minimal results. I am at the point of willing to try anything. I was researching CBD and came across this blog. I'm willing to try CBD but can't use the type with THC because I work.
@bechtlerd, welcome to Connect. I am glad your research brought you to this forum. Our mission is to help every member have a better quality of life as well as a place to get feedback from other members who share our experiences. Somewhere along this journey, I had a similar cough. My companion and life partner was very worried that I was developing something contagious. To learn more about Neurogenic cough reflex, I researched like you and on a public med site found the recommendation for amitriptyline and gabapentin.
So....it is not working as well for you because of side effects. What are they? Is there any way to get around them? The reason I asked is that if you choose CBD without the entourage effect of some THC, you may not have the best response. CBD can be calming especially if you use a high-quality medical cannabis source. If you are doing research you might try the Leafy site. I find it the most reliable at this juncture. If you must omit the THC then try the Papa and Barkley all CBD site. I have been using their products for five or six years and they are consistently
reliable. You can also ask questions and get answers promptly. Perhaps there is a ratio, e.g. 30:1 CBD/THC that will work without getting noticed. I truly don't know.
What I do know is that you cannot trust the consistency of unregulated products that are sold on the street. Let me know if I can help in any way.......I can cheer well.
May you be free of suffering and the causes of suffering.
Chris
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2 ReactionsThanks, my side effects were:
Amitriptyline, severe sleepiness to the point of falling asleep while driving, brain fog that affected the ability to do my job etc.
Gabapentin, over time I developed muscle soreness/fatigue that affected day to day, even repeated pulled back muscles which all went away after stopping. Both drugs were tried at low to high strength.
My Dr recommended a break from the injections so I'm searching for another avenue of relief. I'm looking at a store in my area called Your CBD Store, their product is Sunmed which is 3rd party tested.
I had a severe cough that came on slowly over time and eventually became severe and debilitating for years. I have been diagnosed with acid reflux, and every time I complain about anything concerning my voice, swallowing, throat, etc it is always blamed on that. One day at work, I was coughing to the point that I was doubled over with it, and a customer asked if I take blood pressure meds. They said they had the same cough and it turned out to be their med. I asked my doc to change my ace inhibitor blood pressure med, and sure enough, within a month my cough was gone. That was several.years ago and the discovery was life changing for me. I am not saying that is your problem, but it is something to look into for many people facing this problem. Sometimes the answer is so simple.
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