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Anyone have Laryngeal Sensory Neuropathy?
Ear, Nose & Throat (ENT) | Last Active: Nov 26 4:47pm | Replies (191)Comment receiving replies
I moved to Texas in 2001. Soon after, whenever I got a cold, I ended up coughing horribly for 5 weeks after the cold ended. This usually happened at least twice a year. Fast forward to 2019 and I'd take that 5 weeks. I have now been coughing continuously for maybe 4 years. I have tried every cold and allergy medicine over the counter, have been given inhalers, all kinds of prescription drugs for a cough, steroids, antibiotics (which were probably unneeded), reflux meds, etc... I have seen at least 10 different doctors, not counting the walk-in clinics, as well as an allergist (showed zero allergies on the scratch test) and 3 ENTs. I then found information online from Dr. Bastian about Laryngeal Sensory Neuropathy (and the variety of ways they refer to this online) and finally felt like someone finally got what I was going through. I found other patients mortified by the coughing, gagging spells they went through as well; patients so tired of having to explain to good samaritans trying to help that the water, cough drop, honey, whatever holistic thing they offer, won't help (because you've tried everything) and then explaining what you have; patients who feel the need to tell everyone they are not contagious when you see people move away from you. It's difficult to work in an office of cubicles with this. I walked into a barbershop with my husband and, once some powder wafted over to me, I was sent into an embarrassing coughing fit, with tears streaming down my face, whole face turning red, and about 10 minutes before I could get it to calm down. People don't understand how a smell can trigger it, a laugh, talking, eating, drinking, BREATHING, anything. I just tell people it's a part of me now. Anyway, I am currently trying to work through Dr. Bastian's treatment. I tried the Amitryptiline, which appeared to help last fall, but didn't help after my last cold at max dose. I've been on the Gabapentin for a bit now, stepping it up as instructed. I'm at about 1800-2400 mg a day now. It's not touching the cough AND it's keeping me dizzy and nauseated all day (at work, it has me feeling like when I had a concussion - concentrating harder to type what I'm trying to say or do). I am weaning off of that right now. My ENT and I are regrouping at this point. The last 2 options I've been told (if meds don't work) are Botox shots to the throat and then surgery to cut that nerve. Neither of which are high on my list of things I want to do. One thing I have found... I take Tramadol for RLS flareups. When I take it, it stops my cough. I think it's working by killing the sensitivity of the nerve. It also dries up any sinus dripping, which we all know doesn't require much for us to start hacking. Anyway, there's my 2 (or 60) cents. I'm just hoping that this helps someone.
Replies to "I moved to Texas in 2001. Soon after, whenever I got a cold, I ended up..."
I take tramadol twice a day for my LSN. It does not stop my cough but calms it down some. When I say some, I still cough several time a day but without the tramadol it’s non stop. I recently had two nerve blocks in the neck but no relief after that. My doctor said I could try Botox but I really don’t want to do that. I recently got certified for medical marijuana since it is used with other neuropathies. Has anyone given the marijuana a try with LSN?
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@kimduncan1211 Your symptoms sound like a progression of allergies getting worse over time. I do have allergies and was told by my environmental medicine doctor that the best way to test allergies is with the maximum tolerated dose method. They test individual strengths of allergy extracts One by one to get the highest does that does not provoke growth of a wheal. they time it for 5 minutes and measure, and make a customized extract with a specific combination of things for my allergy shots. he told me that a lot of allergy tests are "one size fits all" and that they are not accurate. I have trouble with allergies in Texas as there is so much dust, pollen and it doesn't freeze putting plants into hibernation. I do use a HEPA filter with activated carbon filtration and wear a surgical mask sometimes that has the same filtration capability. They are 3M Procedure masks # 1820 with >99% efficiency @ 0.1 Micron particles. It sounds like your lungs are sensitive to every bit of allergen or dust that is inhaled. Mine are too, but not if I am in clean air. I use a HEPA filter running in my house and bedroom at night and have found relief. Allergy shots, inhalers, & antihistamines do help me, but they only go so far depending on how much exposure there is. Do you feel better if you are up north and away from Texas? I found that I'm allergic to my cats and that was enough to keep my lungs irritated so everything bothered me. I tried wearing the masks at night (when we are most vulnerable) and it made a huge difference. You certainly could test that or use a HEPA filter in a closed room and see if it makes a difference. I know that I wouldn't do well living in TX. My question is about the phlegm that builds up causing the coughing, and what happens to that if you cut the nerve? Coughing is your body's defense to clear stuff out. If the phlegm stays in the lungs (which has happened to me for some physical reasons & asthma), it's a breeding ground for germs to grow, like pneumonia. I've had a repeating pattern of chest infections until I recently figured this out.If you try some prevention with breathing purified air, you might get an answer.