LPR as something else, falsely being treated as acid reflux? Probably...

  • Thread starter Thread starter Seeking Sunrise
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Just wanted to say i also has mono (twice) as a child and teen and this past year my ND said my fibromyalgia began with epstein barr near my teen years and turned into digestive problems, gerd, hpersensitive esophagus (even though i do have inflammation too)....very interesting about epstein barr and fibromyalgia family....also i had an awful cold right before my sudden gerd came on 1.5 years ago (already had some minor occasional digestive troubles though)...i think its good to hear others backgrounRAB as this lpr/gerd has so much more to it than acid.
 
SeekingSunrise: I understand that you are frustrated because you think you were misdiagnosed and mistreated. However, do keep in mind that just because some people have chronic throat problems which are neurological doesn't mean all chronic throat problems are neurological. (Also, not everyone with neurological pain is helped by Lyrica.)

If someone has stomach pain/heartburn that tenRAB to flare up at the same time as the throat problems, or has a bad taste in the back of the mouth, those would be strong signs that reflux really is involved.

If someone has a sore throat in the absence of any digestive symptoms, then that's different.
 
hi sheepdog do you still experience hoarseness/vocal fatigue and have you ever had a laryngoscopy to see what's causing the hoarseness?
 
Hello,

No, I no longer experience hoarseness and vocal fatigue, at least not for the last two and half weeks. Prior to then, my voice was becoming clearer and I would only have problems if I had to speak for an extended period of time. I teach at a college, so you can probably imagine just how devastating this condition has been to me. Usually, after a lecture, my voice is somewhat hoarse and my throat scratches a bit. But so long as I don't overextend my voice, I don't experience the same degree of pain that I had when all of these problems began in February and March.

I had a laryngoscope done in June. The ENT found some minor inflammation in my larynx, but besides that, it more or less looked "normal." This is what led him to diagnose me with LPR, but he wasn't even certain. At that point, I began using some over-the-counter antacid medicine with little results, as he didn't even prescribe me anything. And he certainly didn't say anything about LSN or the possibility of nerve damage. I never even started the Prilosec, 80 mg per day, until August.
 
start out with 10mg and make sure you take it at night before you goto bed or maybe even 1-2 hours before you goto bed as it will make you sleepy for the first week or two. You can ramp up to 20 or 25mgs after 2 weeks.

At 20 and 25mg I began to get constipated and for whatever reason every day around 11am I get a caffine rush jitter feeling the lasts for about 30 mins.

try amitriptyline or nortriptilyne. 10mg is real small dosage so you should be ok. You can get dry throat from them. Here in Newyork its cold and I have forced hot air heating so I sleep with a humidifer right next to my bed. It works wonders for keeping my throat most a night otherwise my throat would be ultra soar and sensitive.

Even at 25mg its a safe dosage as 100-150mg is what is used for people with depression.

Funny thing is it did make me feel calmer. I dont get so stressed out when I am not feeling well. So even though you are not taking it for depression it does take the edge off.
 
Five months ago I swore when I finally was symptom free I would create a website providing treatments options and direction on what tests are needed to help educate others like me with this condition. It’s been a long journey and while I am better then I was five months ago, I am not symptom free but hope and pray that day will eventually come. I will try to keep this as brief as possible but as we all know trying to explain to people what’s wrong with you is no easy task nor can you explain in a few sentences. I think it’s important to understand where as I was two and half years ago to where I am today and how something like this can manifest it into other symptoms.

Two and half years ago (36 years old) I started new sales job and had an expense account to go along with it. It was encouraged to wine and dine existing and perspective clients to help generate new business opportunities. I ate big lunches, fooRAB rich in fat and calories, and did all the things that a typical LPR suffer should avoid doing. I began to get a lot of chest pains, difficulty breathing, and phlegm in my throat.. I had a history of heart disease in my family and figured it might be my heart. I went for a Stress test, ENT, EKG all negative. I figured if my hearts is working properly then it’s just gas and it’s not serious. After 4 months my chest pains were infrequent but my throat mucus in my throat increased substantially, so much so I had a hard time swallowing. I had to spit mucus out every few minutes (Yes it was that bad). I remeraber waking around my house with garbage bad that I used to jokingly call my Spittoon. I also got the typical lump in throat feeling and gained about 15lbs. I started to snore at night and used to wake up choking and feeling I couldn’t breathe. I knew then something wasn’t right. I got my lungs checked out and they were clear. I went to ENT, he looked looked down my throat and saw a lot of mucus. He gave me a food an allergy test, CT scan of my sinus to rule out post nasal drip as I have a slight deviate septum. All negative. He then gave me a FESS and Strobe test where you swallow a green dye. The liquid that was swallowed came back up and also pooled in my larynx. The technician told me I had LPR and I needed a PPI. At the time, I really didn’t get a clear understanding of how that test was interpreted and quite frankly I don’t think the Dr. or Technician really fully understood either. They could not give me an intelligent answer as to what was specifically causing the liquid to come back up. I mean how could it go into my stomach and then come up all in seconRAB? In any event I was prescribed 40mg of Nexium and was told to take it 30 mins before breakfast once a day.

After three months of Nexium I felt better. My mucas was almost gone and no more lump in throat. I had my life back. The pity of it all was that the doctor did not educate me on what I should be doing to minimize this for happening again, nor did he have any plans of weaning me off the PPI. Shame on me as well for not doing my own research on LPR, but like I said I was feeling pretty much symptom free except for some slight mucus in my throat once and a while.

Fast forward 18 months. I was 15lbs heavier than I was 18 months ago and while I didn’t have crazy lunches anymore my diet still was not a healthy one. I started to get a lot of chest pains and difficulty breathing. I said to myself it can’t be LPR, I am still taking 40mg Nexium. I schedualed an appointment with a heart Dr to get another (EKG,sonogram, and stress test) all negative. I figured it was my diet. I needed to lose weight. I was snoring and still occasionally waking up in the middle of the night gasping for air. My wife also told me I had a lot of siliva in my mouth when sleeping. My brother had just lost 35 lbs by eating no more than 50g of carbs a day and in 3 months and his blood work came back looking great. So over the next 4 months I went on low a carb diet. I lost 25lbs, my slightly fatty liver, cholesterol, and trygcylorides all became normal. While I cut out a lot of the sugar I was still eating a lot of meat and fat. I started to feel like my throat was closing up. All of a sudden out of nowhere my throat got really tight like someone had their hanRAB around it. It wasn’t the typical lump in throat type feeling I had a couple of years ago. This was intense. After 10-15 minutes it would go away. This would happen 8-10 times a week and I was also getting more mucus in my throat, even though it wasn’t nearly as much as I had a few years back it was still enough to make me want to clear my throat alot.
I realized even though I was taking Nexium every day it had to be LPR related. I began to research LPR symptoms and treatments extensively. I went on a strict low fat diet and avoided fooRAB that could loosen the LES. I also made sure to elevate my bed and to wait three hours before bedtime. I tried stopping Nexium cold turkey and substituted Nexium with Zantec, digestive enzymes, and Align. I didn’t know about the acid rebound effect stopping a PPI could cause and I was not success and had to get back on PPI’s.
At that point I realized I needed further testing to understand what was going on. I saw a GI doctor which preformed an Endoscopy. He told me my esophagus looked normal, no signs of damaged, no eosinophiilc esophagitis and the tightness feeling were in my head and I need to relax. I told him if your throat felt like mine you would be stressed out too. (What a Jack ass.) I didn’t have stress in my life except this illness. I did try meditation and hot baths which helps calm down but didn’t make the tightness in my throat go away.
I then went to a different ENT from the incompetent one I saw two years ago. He looked at my throat and told me it looked slight swollen but I did have a lot of mucus pooling. He told me diet was important and to follow it by the book which I knew anyway. He said the lump in my throat was because some people are just more hypersensitive to it than others. He also mentioned PPI’s don’t block pepsin and that was the cause for LPR suffers and not just acid. He wanted me to get a barium swallow to ensure I had no obstructions or abnormalities in my esophagus. So I did. It was negative, everything looked normal.
OK, well having a hypersensitive UES doesn’t make me feel any better. He mentioned Pepsin could be the root cause. So I began researching that and found out if Pepsin is indeed the cause the only thing aside from surgery that could help is by taking 10ml Galviscon Advance before meals and at bed. (UK version of med)
I used Gaviscon advance + low acid diet for a month. Went back in for a checkup and my mucas pooling was a lot better but I still had tightness. He told me I am going to have to live with the tightness and said I should be happy my throat is much improved.
I was utterly frustrated and decided to get another opinion as I could not imagine my life on this planet with tightness in my through for the rest of my life. While waiting for my appointment date for the new ENT my tightness suddenly went away. Could it be? No more tightness? Yes it’s gone but wait I have a new symptom. I have trapped gas in my throat and chest pains. Gas in throat? WTF. How can someone have gas in their throat? After further research it seems people who get the Nissan surgery have this as a side effect to the procedure (Something to do with the one way value it creates )

Anyway, I get my appointment with the new ENT and upon my throat examination which previous Dr. said was normal, was in actuality false. MY larynx was still swollen and one of the folRAB were not resting in the down position. The instrument used was incredible. It looked like an HD picture of my throat. You can actually see the bubbles in my mucus. It’s as if the other ENT’s were looking at my throat through coke bottles and I got a print out of my throat for my own recorRAB, something other doctors would not disclose to me. It was then recommend I do a manometry and PH test. The Manometry showed my UES mean residual pressure was elevated and there was dyssynchrony with my pharynxand . In other worRAB my UES was closing prematurely before the pharyngeal contraction. However, my LES hypotensive(ever so slight relaxed) was functioning normal(Meaning it was closing and opening when it was supposed to). My 24 hour PH Test should I had one episode during the day that reached my throat. One thing noticed when I had that god forsaken probe hooked up to me is that the only time the ph went down under 4 is when I burped. When I say burp I mean an ever so slight quite burp. Seems like it happened after I drank water which then made me burp and seconRAB later made lower LES sensor go down.

So 2.5 years ago when I took that FEES test that why the liquid splashed back up and that’s why my throat felt tight. Based off the Manmotry, my UES is out of whack and what causes the swallowing mechanism? Ding Ding Ding. The Vagus Nerve. My PPI was switch to twice a day Prilosec 40mg but I could not tolerate it as I was getting Nauseas. I then went to Prevacid 15mg twice a day to get better coverage vs the typical 40mg Nexium once a day( as ppis only work for 12-16 hours),I also take domperidone 10mg 3x a day to help empty stomach faster and stimulate moltility, and continued my low fat/acid diet. After five months my throat Is completely normal! Hurray. Well not so fast.
Gas in throat and chest pain is still present. I was put on amitritlyne 10mg before bed to stimulate that Vegas nerve. I was told it has been prescribed to many patients who have had the reflux surgery who get that trapped in throat gas feeling. The drug has been slowly ramped up to 25mg and is has almost eliminated trapped gas in my throat it but I still have chest pains which come and go throughout the day. They are not fun.

I have done further research and they are classified as NCCP’s Non Cardiac Chest Pains and guess what the treatment is for that? TCA’s or SSRI’s. If you look for a book called The Forgut: Function-dysfunction and look at page 57 you will see what the drug treatment plans are for esophageal pain are. For the life of me I can’t say with a 100% certainty that these pains aren’t gas related but I don’t think they are. I think they are related to my Esophagus RABymotility. The NCCP symptoms happen quite often in a molity disorder called Achalasia in which the LES remains to tight not allowing food or acid to pass into the stomach in turn food ferments and acidis trapped above the LES causing (NCCP)chest pain, regurgitation and other fun symptoms. The bright side is there’s an easy fix as you can get a botox injection in the LES and loosen up the muscle but as said before my LES is working as intended and it’s the UES that’s the problem. Some people who have continued tightness in UES and don’t have any motility disorder could get a botox injection in to alleviate the tightness. I did not need this thankfully.
In my case I had acid/pepsin issues causing my throat LPR issues or so I think. The million dollar question is this. Are my reflux issue caused by the malfunctioning UES/Swallowing mechanism or is it two separate issues?
Something else this thread made me wonder about with talk of drugs that help treat NP conditions like Fibromyaliga. When I was a teenager I came down with mono. After that for about 2-3 years constantly got sore throats. I was on antibiotics every other month. The idiot GP doctor told me everything was normal and I just need to take antibodies as I was a teenager and got sick due to my age. My mom finally took me to an ENT. He told us that Dr. should not be practicing as my tonsils were badly infected and needed to be taken out immediately. After getting those out I didn’t get sore throats anymore. Over the course of the next five years I had two stressful times in my life. During the first time I had low grade fever for three weeks and they though I had leukemia. Turns out it was Epstein Barr. Next time I got a relapse. Thankfully it never turned into Chronic Fatigue and for the next fifteen years I never get sick that bad anymore but it makes you wonder if there was any damage done back then or if any of this is related to the Vagus nerve and my swallowing motility issue
How many people out there went for an endoscope, barium swallow, FEESS, 24 hour PH test all with no diagnosis? I wonder how many of you out there went for a High Def manometry to see if you have something screwy going on with your swallowing. Many GI doctors who perform manometrys do not measure UES and are only concerned with the LES. The drugs mentioned in this thread can hold the future for many people like us who are experiencing crazy symptoms in our throats because ultimately unless you have a physical abnormality in your throat or esophagus, it’s something related to that darn vagus nerve.

Just like research into chronic coughing there has to be more Dr. out there to look at some of these non-specific esophageal motility disorder stem from the brain but have no clue on why they act the way they do.
I am probably going to have to increase my dosage of TCA or try a different one if my NCCP pains doing get better. I should mention the side effects I am getting from the amitritlyne are constipation and jitters(like a caffeine rush) that happened between 10:30am every day and last for 15-20 mins. I hope and pray I do get relief and pray for many of the sufferers out there with LPR symptoms to finally get their lives back!
 
see, this makes total sense. that's why so many things produce these symptoms. a little thing can make a big problem.

In my case, over the last 2 and half months my problem went from full on globus to a feeling of "something" in the left corner of my larynx. I'm convinced if they do an MRI or electrotopomography (sp?) they will find something right in that corner.

That makes so much sense though. A little thing in that area causes big problems, and for, I am very confident, most of us, it has nothing to do with reflux.

We probably have a spectrum of 20 or more problems that produce these symptoms, and most of us get handed ppis. It's a farce. A travesty.

You are really lucky your doctor found something real, instead of just going "oh! I know this! this must be that magic acid reflux that happens through unexplained means with no proof or evidence at all!" and then you'd be on the protonix for the next 6 months instead of getting the surgery that is going to fix you up.

I think I might ask for an mri. One was offered in Germany and I didn't bother with it. But yes, I can feel the source now, I could probably point it out with a laser pointer for the doctor. Nobody can convince me that is reflux. It began with a virus in the throat.
 
indeed, philger. gerd symptoms and signs like chest pain aren't especially relevant to my idea.

What i'm saying is if, it started with a virus that damaged your throat, and then the throat alone produces acute symptoms, then we have to consider that it doesn't have to do with reflux.

Yet, since the generic, non-specific symptoms of Lpr are related to a nuraber of other disorders (they are very similar to the onset of esophageal cancer) for instance, we will all be treated for GERD. Will someone with LSN obtain relief being treated for GERD? Never, that's why, I'm presupposing, a lot of us on this board have not obtained relief.

LSN is rare but it happens, and if LPR is also real, then it merely produces the same symptoms which are also produced by a variety of other problems. If we are all treated for GERD, only the lucky few who have this bizarre form of GERD will be healed. Because of the much higher rate of success for treating LSN in clinical studies in the last few years, I'd suggest that we would all be better off if every case of apparent LPR was treated with a trial to treat LSN.

I'm not an expert on LPR, but what I've read suggested that they can't even be sure if it can ever be positively diagnosed. Also, it's treatment is virtually worthless, if GERD doesn't accompany it.
 
LPR is like having esophagitis in the throat but worse, i have an irritated throat 24/7 im also hoarse 24/7 there's a lot of things i can't eat because my throat burns, with chronic irritation i think there's a pretty high risk of getting cancer in 10 years from now or even less, pepsin has been found on laryngeal tissue on patients with throat cancer while the healthy ones didn't have it, plus abnormal ph levels have been found on patients with laryngeal tumors, personally i think that says A LOT, and if nothing can stop the irritation only one thing can happen, cancer, it pisses me off that there are studies that prove this but nobody is doing anything about it, the best thing Jamie Koufman is doing is developing a spray called peptigon that would protect the larynx from pepsin, the website for it has been under contruction for AGES, the best thing we can hope for is a spray? really? at least i would like doctors and people in general to acknowledge how serious this condition really is, is not just "reflux" as most of the population sees it.
 
By the way Sheepdog what dosage of lycria are you taking? Also you mentioned a few weeks back about a enzymes called Clear-Ease, how did it burn your through? Did you sprinkle it on your food?
 
New to this forum but came across this post on Google and it seems to be active. I'm just curious - have any of you been tested for Gastroparesis? It has a nuraber of causes but one of them is damage to the Vagas nerve. EKG and EMG of leg are normal though. I have it but before developing it I had some minor neurological problems for 2yrs (allodynia, fasciculations, and aching). I visited Costa Rica last Nov and developed a fever and then within hours of taking an antibiotic I developed bad nighttime reflux. The illness disappeared but the reflux remained and I was diagnosed with Gastroparesis when I got back. This summer I was diagnosed with OSA and for 2 months I had tingling in arms and legs. My blood work shows abnormal IgA and Gamma Globulin and high IgG. Who knows what I'm fighting hopefully not myself but at least ANA isn't too bad (highest so far is 80:1). I'm glad I sturabled on your post because it sounRAB very plausible in my case. One of my GIs suggested I try Elavil anyway but my main GI wants to pursue a wait and see approach. I have been following Lyrica as well though. Zegerid worked well for about a month but then stopped. I take Kapidex now but it's useless. Also tried Reglen, Domperidone, and Erythromycin - all useless. So far no visible damage to my esophagus but had some burns in my mouth and acid damage to teeth. I'd guess that my esophagus won't escape visible signs for much longer. My father is a doctor so I'm going to try this out in a week (have to be off Erythromycin for 1 week to avoid long QT syndrome).
 
http://www.ccent.com/webdocuments/LPR-CCENT-document.pdf

This is the article about LPR and last page is comparing GERD and LPR
 
I read about a guy who said remeron (a tetra cyclic anti-depressant) immediately stopped his LPR. He went off it and the LPR returned after a year.

You guys have to consider other options.

Another guy wrote "I just don't get why bonine helps my LPR immediately."

If there were injuries in these cases, why do these drugs help so suddenly?

Yes some of us possibly have acid, I admit it. But a whole ton of people on this page are getting no relief at all with ppis, suggesting that maybe reflux is merely an aggravating factor, if anything.

We need to consider that there are more treatments available for this than ppis. What is the possible fear or risk? Try some of these things and see if they work for you, and if they do, post it, so we can start establishing new ideas for other patients to try, when the ppis don't work.
 
Hmm I definately need to read up on it more. I remeraber the exact date my story started: August 30th 2003.


I must disagree on the symptoms. The pain is by far not the worst part of it. Honestly I've grown fully used to the pain, don't even remeraber how life was without it. What really gets to me is the heart racing (vagus nerve irritation, actually that's how I can sense if I have a bad reflux episode. Once my heart starts racing I know my throat will hurt the days after) and worst of all: the lung issues. I'm out of breath easily now, and I can absolutely forget about doing any kind of sports except basic strength training because breathing in just burns like hell. This is coming from someone who used to run marathons :(

I want my life energy back.

So I will definately go for the nissen fundoplication as soon as I can. I know it's dangerous, but I'm willing to take the risk. I will likely fly to America for it next year, just got myself US health insurance.



Thank you very much for your kind worRAB, please let us know if you find any more info on LSN. I wish you and everyone here all the best, may we all recover from this soon.
 
I hope you are not referring to my post because I do not reference anything you allege.
 
@seeking sunrise

I may have very similar problems but the doctor found ateroma (cystis sebacea)on right side of
my glottis and I ll go to surgery very soon...
but my symptoms are very similar to yours ...and everything started with a stupid cold 3 months ago ... there was horrible pain and they said sinusitis and pharyngitis ( that was my first diagnose) but after very strong antibiotics it wasnt any better ,then they sent me to allergologist and he said it has nothing to do with alergies but they can run some test ..then i went back to my otorhinolaryngologist and i ve said that i feel pain deep inside my throat and
he saw it ...I just wonder when they remove it will all my pains go away or no..
I am very worried ...
my symptoms are ...(from priority)
worst thing
1difficulty swallowing things ( pills water my own mucus ...)
2.feeling of something sticking in my throat
3.clearing my throat
4.some changes in my voice hoarseness but not some horrible problems
5.post nasal drip ( it is gone now I dont have any idea how or why)

but interesting thing is when i go to bed and i feel asleep I dont feel any of it
and I am happy during my sleep ...sometimes i wish i could sleep 24hr so i dont have to deal with it...I am so afraid that operation will not resolve my problems
...

can u help me guys ?
ps .sorry for my bad English ...
 
I wonder what the risk is if you are on PPIs though. As far as I can tell, my throat is still irritated but gets better after a few hours, indicating that cell death and regeneration is not occurring and that's the biggest risk factor for cancer. The PPIs, however, create stomach polyps. 90% of them are non-cancerous in general and I'm not sure the rate isn't higher when caused by PPI usage. I think if you have regular endoscopies to remove them then the risk isn't that bad. Still, the symptoms are discomforting.
 
That's correct. They are primarily meant to break down protein. Since mucus consists of proteins they break it down pretty quickly. But don't ever use it or you'll make whatever throat problems you have worse. I'm surprised more people who've taken it haven't complained of this problem. The company advertises it as "soothing the throat and ears." Scuba divers and pilots supposedly benefit from it since it clears the ears. It also contains slippery elm, but you would be better off just using slippery elm lozenges by themselves. They help quite a bit, but the relief doesn't last long. You could take up to ten a day and it wouldn't hurt your throat like the Clear-Ease does. I would have been better off just using Tylenol or Vicodin before I realized that Lyrica and Elavil could treat the problem.

Another product I use is called "Vocal-Eze." It's a throat spray with glycerin and aloe vera. It loosens the vocal corRAB and coats the throat. I use it before I have to lecture and it helps keep my throat lubricated. There are other vocal sprays, but this one is the best.
 
These are all good and balanced points you are making.

However, I want to repeat that I think this applies to mainly to people whose suspected LPR began with a very sudden onset, usually after some kind of damage to the larynx (mainly viral).

Because I think people who happen to have neuropathy rather than LPR will often be on these boarRAB. The LPR treatments will not work for them, so they will go to these boarRAB in frustration.

But I will probably put some specific quotations from the articles I've read and downloaded in the coming days to help make a point about laryngeal sensory neuropathy.

Another thing is the problem of ppis in double blind studies show that they do as much for laryngeal symptoms as placebos. In several recent studies, placebo taking patients had relief of their symptoms at a slightly higher rate than those taking ppis. In your case, Mountain Reader, and others who "taste" acid or have accompanying gastro-intestinal issues, you have good reason to believe LPR is a good part of your problem.

But if you look at the symptoms of Laryngeal Sensory Neuropathy, or Post Viral Vagal Neuropathy, they are the exact same symptoms as LPR. So with LPR being very well-known, and LSN being barely known at all, all people who exhibit those symptoms are going to be treated for LPR. In my case, I tried various corabinations of ppis and lifestyle changes, and what I've found is, drinking espresso, eating at mcdonalRAB, and drinking frequently has caused some improvement in my case. I can't really explain that, if my case is related to acid reflux.

Also, this is a really important thing to think about: There are people on this board who say "after i got a cold, my lpr came back." or "my lpr goes for 2 or 3 months after i get a cold, and then disappears. Every time it's 2 or 3 months." How can that possibly be explained as acid reflux?

Another thing that bothers me is the questionable research of Jamie Koufman who is the authority on LPR. I know a lot of you have actually met her in person to sort out your LPR. She used to say in the 80s it was just basically GERD, but then as studies started to show that normal healthy people could give the exact same readings as LPR symptom sufferers, she started to say things like "only 3 drops of pepsin a week could damage the larynx tissues." She even tried to release some product called "Peptigon" in 2008, which never materialized, but its garish website is still up. I encourage you all to take a look. The point is this: When it was called into question that acid could do this, she switched and said it was pepsin, because the evidence increasingly made it hard for other doctors to believe that acid could be causing the laryngeal symptoms. Then she had to say "3 drops" a week could cause lasting damage. She has also tried saying that somehow LPR patients have different weaker cells in their larynx that can't defend the tissue as readily. I just find that all hard to swallow, personally.

If that was the case, wouldn't every annorexic in the world have LPR symptoms from their regular vomiting. Surely acid and pepsin gets prolonged exposure to their larynxes.

Another thing is when people say that the globus feeling is your upper esophageal sphincter muscles squeezing together to keep the acid out, it sounRAB like some kind of goofy folk wisdom to me. Like medieval medicine is alive and well in the 21st century.

Ok, I can't throw LPR out, because for one thing, I'm not a doctor. But what I'd suggest is that many of us on this board probably do not have reflux issues. If you have tried the LPR lifestyle changes and drugs, and have not seen improvement for months, and if your LPR had a mysteriously sudden onset for something that is supposed to be a chronic problem......then you might want to consider that you in fact have the little known laryngeal sensory neuropathy. If indeed you do, your chances of feeling well again taking neuropathic drugs are much much better than the 15-40 percent who experience relief after months of ppis.

In any case, we all (whether we have LPR or LSN, or PVVN, or some yet undiscovered throat fibro-myalgia/evil spirit) are victims of a lack of understanding and a lack of effective treatments for our illness. I hope you all can agree with that. How many people on this message board have actually gone through with surgery to screw your stomach up so tight, you can't even burp, and you are still clearing your throat and coughing chronically? If that has happened, you just might want to consider that you have a nervous system problem. Anyway, I can't see how my advice would cause more harm than a life changing, painful, expensive surgery that never brought you any relief of your symptoms.

So that's my two cents. I'm meeting the neurologist again on Monday. I sent him the articles I have mentioned, and he discussed it with the other neurologists. He also describes pregabalin as a "beautiful drug" because of its low side effects.

P.S. Jamie Koufman's article "chronic cough" describes her using neuro drugs to treat laryngeal symptoms. It came out in 2010.
 
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