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

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.

can you please give me the links of the studies/trials you mention