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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 have had laryngeal Sensory Neuropathy for 38 years. It started when I was a teenager just after I started healing from a horrible case of Mono. My case is very bad whereas I am chocking 40-50 times a day and night. I once traveled the country including the university of Michigan, University of Wisconsin Hospitals, Mayo Clinic, and many ENTs, etc., etc.. It wasnt until a local doctor told me what I had after two days of testing. Ive been on Gabapentin/amitriiptyine for years but this has only helped minimally. The only medication that gives me any type quality of life is Norco. I know this is not ideal, but given the alternative, it is a no brainer. Like I mentioned, I once days of testing at the Mayo clinic in Rochester Minnesota. After four days and a huge bill, they told me they couldn't find anything wrong and told me to learn how to control this choking. Obviously, if you have LSN, you know there is no controlling this. As an example, I was once awoken from general anesthesia and the doctor said we couldn't get you to stop choking and got worried. So again, there is no way of stopping these attacks. Im wondering if the Mayo ever realized this disease exists and can help some of us with this now.
I occasionally do my research to see if there are any advances toward this disease. It seems there isn't much. However, I heard of one doctor that has had some success with Botox injections. Has anyone heard of this? I think I'm going to get this done to see if it helps.
In addition to LSN, I have another disease that I have been fighting with. When this specialist looked at my medical records he was telling me that I shouldn't be taking all this Norco. (He did not know the reason). When I explained to him why I did, I knew he didn't believe me and I know what he was thinking. If I was not getting a prescription for the Norco, I would most likely find it another way. That is how bad this LSN is for me. Without Norco, I am choking 2-3 times an hour. In public, people think I'm choking on food. sometimes I have difficulty catching my breath.
My hope is that someday there will be a cure. I would love not having to take the meds. Until then, I dont see me stopping these meds. Im wondering if anyone has heard of anything safer than Norco.
Thanks,
Joe
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Hi Joe. I have had a chronic cough for 20 years. It started out with a mild cough and clearing of the throat but has continuously got worse and is a constant daily thing from the time I get up in the morning till I go to bed. I am also bothered with the cough during the night. Over the years I have had so many test (some of them repeated) and nothing was ever discovered to be causing the cough which was a good thing but yet I still was coughing. I’ve trued every thing I could think of or heard to try and no relief. I have had doctors tell me I was crazy and making myself cough. Nobody could ever make theirselves cough like I do. I cough so bad at times I gag and throw up. I pull muscles in my neck, chest and stomach. My heart beats so fast and pounds at times. It’s so very frightening. I finally went to a cough clinic at Cleveland Clinic. My process of elimination I was told I had LSN. I was put on Gabapentin, amitriptyline and currently taking tramadol several times a day. I still cough daily but if I stop the tramadol I cough non stop all day and night. I recently had a nerve block down in my neck but absolute no relief from that. I was told my only other option is Botox but there isn’t good results with the Botox so I do not want to try that. I don’t know where else to turn. I can’t imagine living the rest of my life like this.