Holla if you have vagal neuropathy
June 11, 2015 6:00 PM Subscribe
For nearly a year, I've been coughing. A lot. It wakes me up at night, it used to make me throw up, it has resisted all diagnosis at primary care, pulmonology, and digestive health. Finally, an ear, nose and throat doctor has suggested damage to my vagus nerve. I'm hoping to find others who've gone through this and can give me tips on coping. More inside.
I'm going to be starting Lyrica and also voice therapy. (The dr's first choice was Elavil, but there was concern about me already being on an antidepressant.) A speech pathologist gave me a couple breathing tips during my voice eval to use when I have coughing fits, but I'm still figuring out how deeply to breathe, etc. during them.
One problem is that because I also have severe sleep apnea, there isn't much I can take to suppress the cough that helps. I used to take tessalon, but Medicare no longer covers it. I do like Delsym or its generic equivalent. However, you can only take it every 12 hours (and it wears off sooner), plus you don't get very many doses in a bottle. Other OTC stuff hasn't helped at all. Honey helps very short-term.
I am trying to figure out what factors make it worse. So far, cold air, a lot of fragrances, eating, laughing, and cigarette smoke all bring on bad fits. Today it rained and I think that made it worse. I had to be outside in it a bit and didn't have a mask or anything to protect my mouth--not sure if that would help. Sometimes I think dry air hurts, and sometimes it seems moist air does too. I take Benadryl and sometimes Sudafed for allergies, and those help a little bit.
I am also taking 80 mg/day omeprazole for reflux, but the tests don't show enough damage to cause this much of a problem by reflux alone. Also, increasing the omeprazole dose never helped.
Kindly please limit your comments to those related to chronic cough caused by vagus nerve damage or very similar things. I've been tested for an awful lot of things already, and everything I've read on this sounds like what I've experienced. Therefore, advice relevant to chronic bronchitis or asthma may not be helpful. What would be most helpful to me is to get ideas on things I can do in my daily life to cough less, feel less scratchy. I am game for tips involving diet, environment, etc. Thank you.
I'm going to be starting Lyrica and also voice therapy. (The dr's first choice was Elavil, but there was concern about me already being on an antidepressant.) A speech pathologist gave me a couple breathing tips during my voice eval to use when I have coughing fits, but I'm still figuring out how deeply to breathe, etc. during them.
One problem is that because I also have severe sleep apnea, there isn't much I can take to suppress the cough that helps. I used to take tessalon, but Medicare no longer covers it. I do like Delsym or its generic equivalent. However, you can only take it every 12 hours (and it wears off sooner), plus you don't get very many doses in a bottle. Other OTC stuff hasn't helped at all. Honey helps very short-term.
I am trying to figure out what factors make it worse. So far, cold air, a lot of fragrances, eating, laughing, and cigarette smoke all bring on bad fits. Today it rained and I think that made it worse. I had to be outside in it a bit and didn't have a mask or anything to protect my mouth--not sure if that would help. Sometimes I think dry air hurts, and sometimes it seems moist air does too. I take Benadryl and sometimes Sudafed for allergies, and those help a little bit.
I am also taking 80 mg/day omeprazole for reflux, but the tests don't show enough damage to cause this much of a problem by reflux alone. Also, increasing the omeprazole dose never helped.
Kindly please limit your comments to those related to chronic cough caused by vagus nerve damage or very similar things. I've been tested for an awful lot of things already, and everything I've read on this sounds like what I've experienced. Therefore, advice relevant to chronic bronchitis or asthma may not be helpful. What would be most helpful to me is to get ideas on things I can do in my daily life to cough less, feel less scratchy. I am game for tips involving diet, environment, etc. Thank you.
I'm sorry you're going through this!
I don't have solutions for the coughing, and I can't tell whether you've actually been diagnosed with neuropathy, but if you haven't had your B12 checked, do so. It can be hard to pin down the cause of neuropathy, but B12 deficiency is a common one. (It's far from being the only possibility, so really, have yours checked before popping supplements.)
When my neuropathy (not vagal) was diagnosed, my B12 was abysmally low. Injections and supplements didn't reverse the damage, but when I got lazy about taking supplements and my levels dropped again, I realized my symptoms hadn't been quite as bad when my levels were in the normal range. What's more, if such a deficiency is the cause, supplements are a relatively easy way to keep the nerve damage from getting worse.
I hope you find some relief, and soon.
posted by whoiam at 7:46 PM on June 11, 2015 [1 favorite]
I don't have solutions for the coughing, and I can't tell whether you've actually been diagnosed with neuropathy, but if you haven't had your B12 checked, do so. It can be hard to pin down the cause of neuropathy, but B12 deficiency is a common one. (It's far from being the only possibility, so really, have yours checked before popping supplements.)
When my neuropathy (not vagal) was diagnosed, my B12 was abysmally low. Injections and supplements didn't reverse the damage, but when I got lazy about taking supplements and my levels dropped again, I realized my symptoms hadn't been quite as bad when my levels were in the normal range. What's more, if such a deficiency is the cause, supplements are a relatively easy way to keep the nerve damage from getting worse.
I hope you find some relief, and soon.
posted by whoiam at 7:46 PM on June 11, 2015 [1 favorite]
If Tessalon works for you, there is a Pfizer program to provide it for free to people who can't afford it.
posted by Jahaza at 7:54 PM on June 11, 2015
posted by Jahaza at 7:54 PM on June 11, 2015
Do you by any chance take medicine for high blood pressure? Mine did that to me until the doctor switched it.
posted by tamitang at 10:38 PM on June 11, 2015
posted by tamitang at 10:38 PM on June 11, 2015
There was an article linked on HackerNews today where in the comments a number of people report on their experience with vagus nerve damage & the treatments they’d tried. Might be worth a look.
posted by pharm at 4:00 AM on June 12, 2015 [1 favorite]
posted by pharm at 4:00 AM on June 12, 2015 [1 favorite]
IANAD, but I think that Delsym, as long as it contains only dextromethorphan, is safe to take more frequently than 12hrs. I don't think their are major safety concerns with taking it, say, every 8 hours.
posted by Adamsmasher at 5:12 PM on June 13, 2015
posted by Adamsmasher at 5:12 PM on June 13, 2015
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I know CPAPs and the accompanying sleep studies can be expensive, but perhaps there are ways to help with that.
posted by St. Hubbins at 7:46 PM on June 11, 2015