LPR for 7 months

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refluxmcgee
Regular Member


Date Joined Jul 2014
Total Posts : 20
   Posted 9/11/2014 2:37 PM (GMT -6)   
Hi,

Just wondering if anyone else has similar symptoms to me, and if they have any insight on how to better manage these symptoms...

I've had LPR now for 7 months. Prior to this, I was quite healthy. Only some mild allergies, rhinitis, and asthma. But that's it. Absolutely no GI problems.

It started with intermittent heartburn for a few weeks. I also had an overwhelming feeling of nausea and fullness--even if I ate small meals. A few weeks later, the throat symptoms started--and the heartburn disappeared completely. Now only the throat symptoms have failed to go away, and they are extremely distressing. I have a constant irritated and burning throat and tongue. I can taste either a sour or bitter liquid at the back of my throat all the time. Many times in the day, I can actually feel the liquid refluxing into my mouth. Almost like it shoots or crawls up my throat into my mouth. As this happens, I feel a greater sense of burning in my throat. This burning is more pronounced after my meals, no matter what I eat. Nothing relieves the burning except when I'm eating. However, after I eat, within a few seconds, I can feel my throat burn, and it takes about 15 minutes for it to settle down. The only other time I get symptom relief is when I go to sleep. But I think it's because I'm unconscious. lol . The moment I wake up, I can feel the stomach juice crawling up my throat again, and into my mouth.

I have visited both an ENT and GI specialist at a large university teaching hospital. I had a gastroscopy done, which only received mild redness and inflammation in my esophagus. Nothing else. I had a mannometry study done, which was normal. I had a barium swallow study done which was normal. My ENT doctor looked at my vocal chords and said he didn't see much. Only a bit of redness besides the vocal chords--and so said he couldn't do much for me. My GI doctor also said he couldn't do anything--that's why I was referred to the ENT doctor.

I was put a trial of PPIs BID for 7 weeks. It did nothing to help my symptoms, so the doctors took me off it. I have tried all the lifestyle/diet changes you can think of. I follow the Jamie Koufman low acid, low fat diet. I avoid all usual GERD triggers (coffee, citrus, mint, chocolate, tomatoes, etc etc). I eat small frequent meals about 6-7 times a day, and do not eat 3 hours before bed. I sleep on a great incline. And exercise daily. I am a healthy weight. I took probiotics in the morning and manuka honey throughout the day--and really haven't noticed a difference. I'm really not stressed at this point in my life..the only stress I get is from these symptoms..which I have tried to minimize.

My symptoms are better than when they first started. But they are still quite bad. Bad enough, that they often get me down and a little depressed. I also notice they are wayy worse close to the time of my period. Literally my throat is on fire and burns for a week and a half before my period. And starts to settle down a week after my period.

Basically...I am out of options. The doctors dont want to prescribe meds for me, because based on their tests they don't see much abnormalities except a bit of redness and inflammation. I am definitely not a candidate for surgery according to them. However lifestyle/diet changes are really not helping. Just wondering...do you think I"ll just have to get used to this burning for the rest of my life? Or do you think in a few years it will settle down a bit. I'm 26 years old. I want to move to the West coast, and do a lot of great things with my life..but it's just hard to concentrate and be my old cheerful self, when I'm dealing with this chronic pain and discomfort day in and day out.

QiDoc
Regular Member


Date Joined Jul 2014
Total Posts : 56
   Posted 9/11/2014 9:51 PM (GMT -6)   
Hi Refluxmcgee.

Sorry to hear of your suffering. Which ppi did you try 2x/ day?

I've had a diagnosis of LPR since July 2014. I'm still learning how to control my symptoms. I am in the care of Jamie Koufman, MD in NYC. It is really difficult for me to maintain body weight.

I take pantoprazole 40 mg 1x/ day in AM. Seems to help reduce brain fog I had previously. I follow Dr. koufman's reflux diet and cook 95% of all my meals. I eat mostly boiled organic chicken (skin removed), vegetables and rice. I tolerate brewed coffee ok- it's one of my few dietary pleasures.

Something that has been helpful for my throat is to increase my water intake to 2+ Liters/ day, throughout the day. You might try drinking more water after meals if you have not already. You might also try ph 8.88 spring water or higher.

Gaviscon Advance from U.K. (Available in 500 mL peppermint from Amazon or EBay) really seems to help heal my throat. I read a research article on LPR that suggested taking 10 mL Gaviscon Advance 1-4 x/ Day, but most importantly at night prior to sleep. Do not drink anything or eat for 1-2 hours post Gaviscon so it can block stomach contents and Pepsin from irritating your throat.

Hope you feel better.

refluxmcgee
Regular Member


Date Joined Jul 2014
Total Posts : 20
   Posted 9/11/2014 10:47 PM (GMT -6)   
Thanks for the advice QiDoc.

Can I ask what your LPR symptoms are specifically? I tried prevacid BID, for awhile, but felt really fatigued and nauseous, so switched to pantaloc magnesium once a day. Both PPIs did not work for me, since I was still getting a really raw, irritated, sore throat 24/7.

That's great you are in the care of dr. koufman. I wish I could afford flying to NYC and getting all those tests done. Perhaps in the future I could save up to do this.

I also find that when I follow her low acid diet, I am having difficulty maintaining my body weight. I currently weigh 105 lbs, and am 5' 4''. I also exercise quite a bit..so maintaining weight is def a challenge.

I like your advice about gaviscon advance UK and alkaline water. Especially since its working for you. I was skeptical about whether these things really worked. Especially since this might meant paying more money for yet another desperate 'cure'. A case of evamor water (just 12 bottles) that dr. koufman recommended is sooo expensive, since it would have to be shipped through amazon. I currently just drink tap water (about 2 L/day) and take gaviscon extra strength at bedtime.

QiDoc
Regular Member


Date Joined Jul 2014
Total Posts : 56
   Posted 9/11/2014 11:04 PM (GMT -6)   
Hi Refluxmcgee.

My LPR symptoms are cough, shortness of breath, wheezing, bronchial and throat mucous, swollen throat, difficulty swallowing, globus sensation, gurgling in esophagus, voice disturbances. Usually I do not experience burning or stomach pain.

Mammometry tests indicated "normal" LES. EMG indicated nerve damage to pharyngeal branch of vagus nerve, bilateral. Z line upon endoscopy, biopsy negative. Stomach lining appeared normal. Mucous present in vocal cords, no redness detected. Pepsin present in oral cavity in salvia.

I live in NJ. Walgreens pharmacy stocks 1 L bottles of pH 8.88 Iceland spring water. Walmart and Whole Foods also carry alkaline Iceland water.

Key ingredient in liquid UK Gavsicon advance is Alginic acid, derived from seaweed, which has been found to selectively bind Pepsin. I'll see if I can dig up research link for you. I found research paper reading on this forum. Try searching Gaviscon Advance in search bar. US Gaviscon prepared by GSK does not have 1000mg Alginic acid per serving, but a lesser amount.

How do you maintain body weight? Any tips? I'm 5'10" 124 lbs. scary! Previously I was 165 muscular as of May 2014.

refluxmcgee
Regular Member


Date Joined Jul 2014
Total Posts : 20
   Posted 9/12/2014 9:37 AM (GMT -6)   
Oh, cool. I will look into getting some alkaline iceland water from wholefoods, and purchasing the gaviscon advance.

I really don't have any tips for maintaining weight, as I'm trying to figure this out myself..But since I eat 6 small meals everyday, approx 2-3 hours apart..I try to make sure I pack the most calories into each meal as I can. And basically I am eating small meals to make sure I don't distend my stomach, and put pressure on esophageal sphincter. Also...don't want to create so much acid.

Each meal, although small, is extremely important and jam-packed with stuff so I can try and maintain weight. For instance, if I eat a salad for lunch, I make sure its not void of calories with solely a handful of greens and dressing. Instead i'll top it with chicken, beans/legumes, squash, carrots, beets, etc. For breakfast, if I make oatmeal, I make sure I sprinkle on chia/flax seeds, and a small handful of nuts and dried fruits (mix it in with almond milk to make sure pH balanced). All of the meals are about equal size spread out throughout the day. And each mini-meal is very balanced and full of nutrients.

It's so weird why we are still having symptoms, even though our manometry tests reveal our sphincters are functioning 'normally'. I read somewhere that this test is just a 'snapshot' of our esophageal function. During that one moment in time when they are performing the test...yes, our esophageal sphincters are functioning normally..but the rest of the time..when we didn't do the test..perhaps our sphincters are relaxing abnormally, leading to reflux? I think this is the case for me at least...because during random periods of the day, my symptoms will be significantly worse...and it has nothing to do with food. It just feels like my sphincter has suddenly and randomly 'opened' up and let a flood of acid and chyme into my throat. Then an hour later it'll 'close' up and I'll feel a little better. Another thing is...perhaps it's just nerve damage?? Like we're having 'normal' amounts of reflux, but because our nerves and throat have been damaged by the initial hyperacid event..we are hypersensitive to stimuli, and normal amounts of reflux and acid are causing us distress...The same amount of acid being refluxed into a person with an intact, healthy throat will feel totally fine...

I've thought about this a lot clearly. More than is healthy lol.

QiDoc
Regular Member


Date Joined Jul 2014
Total Posts : 56
   Posted 9/12/2014 5:07 PM (GMT -6)   
Refluxmcgee,

Aside from having symptoms of LPR, being unable to gain/ maintain weight is seriously disturbing to myself. I read elsewhere on Healingwell that others with a diagnosis of gastritis/ duodenitis have posted regarding difficulty maintaining weight. Like yourself, being ill for a while has provided numerous opportunities for thought regarding personal circumstances.

I eat every 3-4 hours and try to include a significant portion of lean animal protein (chicken), in addition to white rice/ potato and green vegetable. The only thing noteworthy is that my diet is low fat, but not low carb. I wonder if eating low fat contributes to difficulty gaining weight for my case?

It makes sense regarding what you said about the LES opening during the day/ night. Stress/ certain foods of course can contribute to a reduction in LES tonicity. Then, as you mentioned- nerve damage in throat. This is probably a key factor in why we have LPR and others who are asymptomatic do not suffer the same symptoms. Heal nerves, be healed! :D . By the way, I also take 100 mg Gabapentin (Plus Gaviscon Advance afterwards, not before) prior to bed for this purpose on advice of Dr. Koufman, though I suspect time and less acid reflux to the throat would do just as well...

georgi303
Regular Member


Date Joined Apr 2012
Total Posts : 61
   Posted 9/12/2014 9:20 PM (GMT -6)   
Hi
Qidoc, what is the EMG test? What kind of doctor administered it? I am on 3 years with LPR symptoms. I am thinking it may be nerve related because all my tests are normal. Even my peptest. My symptoms are shortness of breath, strangling tight feeling in throat, chest pains, sore throat at times but not burning, occasional acid but not in my mouth, esophageal spasms, globus, trouble swallowing at times, pain in my esophagus, the breathing problems really get to me!

QiDoc
Regular Member


Date Joined Jul 2014
Total Posts : 56
   Posted 9/14/2014 12:00 AM (GMT -6)   
Hi georgi303,

An EMG is an Electromyogram. My ENT Doctor, Jamie Koufman, MD performed the EMG to assess nerve function in the throat.

Since you still have symptoms of LPR, you probably would benefit from medication. Are you following a low acid diet/ Koufman diet?

georgi303
Regular Member


Date Joined Apr 2012
Total Posts : 61
   Posted 9/14/2014 9:30 PM (GMT -6)   
I am following a low acid diet for a while now. Not always 100%, but definitely nothing over the top. I I am very thin and try to exercise when I can breathe. Do you find the Gabapentin helps?

QiDoc
Regular Member


Date Joined Jul 2014
Total Posts : 56
   Posted 9/14/2014 10:59 PM (GMT -6)   
Georgi303,

I keep a journal and record my diet, meds and symptoms.

Yes, I feel Gabapentin is helpful for my throat. I take 100 mg prior to bed. My doctor recommended up to 4x/ Day but I find it dulls my mental clarity, so I take it once at night.

cutupqueen
New Member


Date Joined May 2014
Total Posts : 7
   Posted 9/15/2014 5:38 PM (GMT -6)   
I've had LPR for 2-1/2 years. Mine started after taking Fosamax for a couple of months for osteoporosis (bad genes). I coughed 24-7, full of mucus and had a leukoplakia removed from my vocal chords. I'm still hoarse even now.

Right now, Naturopath has me on an AIP diet (vegan with meat! LOL) which helps some. Food allergies may be part of the problem. I take prescribed Chinese herbs, probiotics, drink bone broth, and have just started Kambucha tea. I take 80 mg of Omeprazole a day, have taken meditation classes, yoga classes and see massage therapist when I can afford it.

Have any of you had a 24 hour PH test? That was where they saw how badly my LES worked. It was shooting up my throat many times a day.

I have failed to get approved by my insurance company, including outside appeals, for LINX, and now am trying to find out more about the Hill Procedure which sounds like it has less side effects that a NISSEN fundoplication. Not sure if anyone has heard of it, or had the surgery. I'd be very interested if anyone has more info on it

QiDoc
Regular Member


Date Joined Jul 2014
Total Posts : 56
   Posted 9/17/2014 10:21 PM (GMT -6)   
Hi Cutupqueen,

Sorry to hear that you have been living with LPR for 2.5 years. Hopefully your suffering ends in the near term with healing.

Regarding your inquiry into surgery for LPR, please refer to the following document published in the International Journal of Otolaryngology from 2012:

http://www.hindawi.com/journals/ijoto/2012/646901/

Note that according to the above journal article, unlike in GERD, "There are as yet no specific selection criteria with which to identify those with EER (Extra Esophageal Reflux/ LPR) who are likely to benefit from surgery."

You have noted that you take "Kambucha tea." Is "kambucha(sic) tea " acidic and thus potentially damaging to LPR conditions?

I have personally done the 24 hour pH probe. Really irritated my esophagus and hated it while it was in, but it did demonstrate multiple EER events to my pharynx. :(.

cutupqueen
New Member


Date Joined May 2014
Total Posts : 7
   Posted 9/17/2014 11:55 PM (GMT -6)   
I realize that the Kambucha tea is fairly acidic, but I only drink small amounts at a time, using it for the probiotic benefit. My stomach is unhappy most of the time from taking the max amount of Omeprazole, and the Kambucha is actually very soothing.

CAGU
Regular Member


Date Joined Apr 2014
Total Posts : 315
   Posted Today 11:13 PM (GMT -6)   
It could possibly be delayed gastric emptying. symptoms include: abdominal fullness, nausea, acid reflux (in worse cases vomiting) bloating, burping, stomach pain, possible sore throat from all the reflux and food coming up to back of throat. LPR can be one of the symptoms of delayed gastric emptying.

With delayed gastric emptying food is not being broken down quickly enough in your stomach which is causing acid and food to come back up the esophagus.

There is a test you can have done at your local hospital called a delayed gastric emptying test. It is a simple out patient procedure. This test is not always consistent. So keep in mind if you are having a good day it might not show up on the test.

CAGU
Regular Member


Date Joined Apr 2014
Total Posts : 315
   Posted Today 11:19 PM (GMT -6)   
Here is a link for delayed gastric emptying also known as gastroparesis. You might take a look at it
http://www.healthhype.com/slow-stomach-causes-of-delayed-gastric-emptying.html

cutupqueen
New Member


Date Joined May 2014
Total Posts : 7
   Posted 11/11/2014 1:22 AM (GMT -6)   
Hi QiDoc~

I had a gastric emptying test 10 days ago, and got the final results today. After 4 hours I still had 20% of my wonderful eggs, a side of radiation with toast and jam. I believe <10% is normal. I was sick for almost a week afterwards. Had to go on a liquid diet for a couple of days to calm my stomach down. I have not eaten eggs or bread for 6 months, so don't know if food allergies played a role or not. My surgeon is still tying to figure out how this could effect being included in a post-approval FDA study.

Cutupqueen
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