Hi blahfoo101. I'm sorry to hear that you're suffering. This is such a miserable thing, isn't it?
Well, let me first go back to my initial post which was from last year. So the Cleveland Clinic (supposedly the "number one hospital in Ohio") diagnosed me with a laryngeal neuropathy (or nerve damage) and ruled out reflux. They gave me a drug called neurontin, which was initially developed to treat epilepsy but now is used more often for nerve damage. (There are essentially two kinds of pain, and if you have a neuropathy, chances are that pain relief medicines won't alleviate it.)
The problem was that neurontin didn't work. So I went back overseas (where I work 9 months of the year) and stopped taking all the medicine. Well, on September 26, 2013 (the EXACT one year anniversary of first having symptoms), I had terrible, terrible pain in the morning and I couldn't imagine how I would get to work. I really think I was on the verge of a breakdown.
As one ENT told me, if the medicine didn't work, either the patient had a wrong dosage or a stronger regimen is required.
So I flew back home to see an expert. They did five tests--one was an EMT, which gets a neurogenic reading of the throat, another to detect if there was pepsin (the enzyme that flows back up with acid and does the damage) in my saliva (there was), a transnasal videoscope, which showed several signs of reflux ("How could they miss this?" she said, referring to the Clinic), another to see if both esophageal sphincters were malfunctioning (they were) and an overnight tube that went through my nose and rested in my throat, to get records of acid exposure. All tests led the doctor to conclude that there was "no question" I was refluxing. My diagnoses: gastroesophageal reflux disease, laryngropharyngeal reflux, bilateral vold ford paresis and post-viral vagal neuropathy.
So how did this all happen and what does it mean? Well, the week of teaching last year was a very stressful one. I was teaching eight hours straight with no break and had one class with 40 students. I was exhausted, sick and my voice was gone. It turns out I had an upper respiratory infection, and it was so potent that it damaged my vagus nerve. The vagus nerve "runs the show." So, not only have I suffered from odynophonia (painful speaking) but also disphagia (discomfort when swallowing) and reflux (both heartburn and LPR), among other things (I've had about a dozen symptoms over the past two years). The neuropathy causes wrong signals to be sent to my vocal cords, causing them have a paresis.
So I was told to take more neurontin, to keep going until the pain went away, and was also proscribed elavil, which supposedly gives neurontin a boost. But I have gone to the max levels of neurontin and its cousin, lyrica, and have tried other kinds of narcotics like tramadol and klonopin. But nothing really seems to have helped with the pain. In addition, while the reflux is severally reduced, it has all done some damage to my system. My tongue became white and cracked, I suffered from irregular bowel movements, and I wasn't digesting nutrients properly.
My advice? First, if a GI says he's going to do a Bravo test, that may be fine to identify GERD but it is completely pointless when diagnosing LPR, so tell him he's an idiot if he says that's not true. You must get the test where the tube goes through your nose, down to your larynx, and stays there for a night. Second, don't be too afraid of treating the condition more seriously, but beware of taking these drugs long-term. PPIs can fundamentally change your system and they decalcify you. That being said, typically treating GERD involves 40 mg of PPI but treating LPR requires 80, anywhere from 1-6 months. I actually started at 40, then 80, then back to 40. I took Zantac as well, but now am off all of those drugs and haven't had too much of a rebound. Gaviscon and Gaviscon Advance can help, but also be careful about taking that for too long.
Additionally, you're doctor's not kidding: You need to fundamentally change the way you do things. You need to avoid eating and possibly drinking 3-4 hours before lying down. No heaving lifting/bending over right after a meal. Limit acidic foods (there are several reflux cookbooks out there), especially processed ones. Lozenges and chewing gum help, but they also have sugar and/or possibly dangerous chemicals. I prefer Arabic gum (which is pretty flavorless and non-toxic) and traditional Chinese lozenges (which taste disgusting at first but they've grown on me). Walking helps digestion (but running might make things worse).
Okay, now about the neurogenic pain. I'm currently seeing a holistic doctor in my hometown. He's given me probiotics and other supplements to help clean out my gut and given me another strict diet (that doesn't even include bananas or oatmeal). Some people say a vegan diet will help, but he insists that animal-based protein is essential for digestion. I'm not sure who exactly to believe. Because I hunch over, he thinks that it might be causing the bones to press against my vagus nerve and that could be why I haven't eliminated the pain. So the treatment involves decompression, back stretches, lidocaine injections in the neck, chiropractic adjustments, all three times a week. And yesterday I met with a personal trainer to see about getting some upper back strength.
Who to see? I'd say avoid the Cleveland Clinic. If you live in Virginia, the best is probably Dr. Chiang, although he only sees patients in Virginia (but you can email him for a fee). If you're in or near NYC, the best is obviously Dr. Koufman, but it will cost you. Or just see if there's a doc near you who has access to the tools these doctors have. And while the Affordable Care Act has rightfully banned the practice of denying patients coverage based on so-called pre-existing conditions, short term health plans (like the one I have) are exempt from this). There is a special place in hell for those insurance companies.
Sorry this is quite long. I've written about my experience a bit more in my blog: http://www.chrisandthemovies.com/2014/06/bigger-than-life-movie-that-speaks-to-me.html
Finally, if you're feeling down, my best advice is this: do a kindness, smile (even if you're not happy) and surround yourself with the people who make you happy. You'd be surprised just how effective these three elements can be.
If I can answer any other question, don't be afraid to ask. Feel better!