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Recently diagnosed with LPR...Please help!!
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Recently diagnosed with LPR...Please help!!

I'm 19 years old and was recently diagnosed...I have a few questions regarding LPR and would be very grateful if anyone could answer them...

1. I have been on twice a day Zegerid 40mg for almost two months, but still feel acid coming up into my throat, mostly at night, several hours after dinner...is this normal for LPR or should I be having total acid suppression?

2. Will I ever be 100% better?

3. Will my symptoms ever alleviate? Will I ever be able to drink a cup of coffee again!? lol

4. I am a singer, does anyone have any experience with LPR and singing?

Thanks you so much
Tags: Reflux
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14 Comments Post a Comment
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Avatar_n_tn
Also, my main symptom is feeling as if food is getting caught in my throat...will this sensation ever go away? I had a modified Barium swallow and everything is actually going down, but it is uncomfortable.
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Avatar_n_tn
my daughter had acid reflux since she was 2 she is now 8 with out any problems and we are now doing things naturally and it is the little things that nature has provided us with that people forget about.
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Avatar_n_tn
hi
I was diagnosed with lpr 3 months ago. I am 28 years old. I must say this lpr thing is just awful : I always feel like I am going to choke because I too feel like food is getting caught in my throat. I am taking prevacid 2x30mg and it seems to help but I am still pretty depressed from all this.
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Avatar_n_tn
Hey, I'm so sorry and definetly feel your pain.  Over the past two months, along with religiously taking my meds, I am constantly telling myself nothing is getting caught in my throat, I take a big gulp of water and a deep breath, and you know what? most of the time, it works. Now, I am not eating nearly what I would call a normal diet. I eat soup almost every day for dinner, but I think mind over matter is an important thing. I am trying to expand my horizons and eat some energy and protein bars just so I can remain well nourished. I just wish I could eat like a normal college kid and have a piece of pizza! It's killing me to think I may never be able to eat any of the foods I love again! I am going back to college in three weeks and am pretty worried about the eating situation there- I mean, eating at college is probably what caused me to have this raging LPR in the first place. But I think the main thing to remember is LPR is an aweful illness, but hopefully we will start to feel better soon.
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Avatar_n_tn
hi
well I think lpr can be totally cured. It is a chronic condition in many people but it is usually there for a reason. In my case it was stress so I guess that if I take care of that anxiety problem the lpr will go away. In your case it may have been "college food". From what I read on the internet some people have chronic LPR but for others it is just a thing that come and goes in their life so I just hope we dont stay like that forever or have to take medication all our life. After all we are pretty young to have a chronic disorder like this!
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Avatar_n_tn
at least you got diagnosed!  i've gone through almost a year of Hell before it was finally diagnosed in me...and diagnosed BY ME.  the doctors could never figure it out for some reason.  anyway, common symptoms are: tightness in the throat, hoarseness, frequent throat clearing and coughing, Asthma-like symptoms, a feeling of swelling in the throat, and post nasal drip.  It's a type of reflux but it goes up to the back of your throat.  People don't experience heartburn with this.  You have a 50% chance that it will go away by itself; for some it is a lifelong event but controllable in most cases. The treatment includes things like Prilosec and/or Protonix, coupled with Zantac or the equivalent and, as you've seen, a change in diet.  The process involved higher doses of meds than regular reflux (GERD) and there is a surgical option if you aren't getting much better in a year or so. Make sure you're getting HIGHER doses of meds than with regular GERD.  that is because the lining in the throat area is much more susceptible to damage than the esophagus.  And, yes, it can affect the higher range of your singing.    here's an article from Columbia University: www.entcolumbia.org/lprd.htm   I am waiting for my doc to call me as we speak so I can get into the higher doses of meds I found suggested on the Internet at the American Medical Association website.  Another comment, this constant feeling can lead to anxiety so sometimes and anit-anxiety medicine can help you from feeling even worse.  I'm happy to continue corresponding with you to see how the treatement is going to both of us.  i'm at ***@****.  Good LUCK!!!
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Avatar_n_tn
oh, I forgot to mention...try sleeping with the top part of your body elevated a good eight inches and don't eat anything for three hours before going to bed.   Fred
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Avatar_n_tn
i see the site won't let you put your email so i'll do it this way:  it's fredcary AT yahoo DOT com.
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Avatar_n_tn
fredc, i agree that it is very difficult to get diagnosed. I was diagnosed with asthma, panic attacks (I had panic attacks BECAUSE of the choking sensation), allergies and "nothing wrong,  its all in your head" and I have seen 10 doctors before an ENT doctor told me this was reflux!!! and gave me the appropriate treatment.
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Avatar_f_tn
Hi:

I have been reading posts on here since October 07 so I am new and decided to tell my story of LPR.  It all started in September 07, I got a really bad sinus infection that started in my nasal sinuses.  I live on the West Coast and traveled back east to see family and then to North Carolina.  I was having stomach problems prior but did not think it was anything serious.  So airline travel and swimming in the ocean are all part of this.

Here is the timeline.  I turned 41 in May.  June - I had a sore throat for 6 weeks, went to my primary doc in early July.  She asked if I had stomach problems I said no.  I was prescribed a Z-Pak (5 day antibiotic) for the sore throat.  My stomach did not feel right, I did eat yogurt and all that.  So now this is mid - July.  I was watching tv about a week after finishing the Z-Pak and my throat started spasm, cinching up is the best way to describe it.  I was really scared had no idea, went back to a different doctor in the practice, he gave me Aciphex.  I tried it for 1 week and had a worse sore throat.  Granted the doctor at this time did not say I had lpr, or communicate anything to me, I described my systems, gave me Aciphex and went on my way.  So the then this is Mid-August and we started traveling.  I had the Aciphex but did not like it, because I did not know and took Pepcid AC.  Came home, mid September got the bad sinus infection, could not breath, taste, smell horrible, worst ever.  Perscibed Cefuxime Axitel (antibiotic), 6 days into that my throat and ears swelled up, bad ear infection both ears, a childhood illness.

I did not mess around went to a young and new ENT was on Augmentin 875mg for 24 days tried Nasocort AQ and Afrin, actually I could not breath on these, seemed to make it worse.  I do not like either one of these and did not find them effective, tried these for 4 weeks, no results.  Finished that my stomach was on edge, I had lunch out, came home that evening and acid welled up into my throat. My ears have been popping and clicking everytime I swallow since mid-September, by the way.

Now this is early October, went back to ENT - had the nasal endoscopy and she said my laynx, red and swollen, she said the PPI would help my ears, but it would take a couple of months.  I was shocked, never heard of this before she told me to take 1 Prevacid - in the morning, well my insurance would not pay for this so I struggled on the samples and then went to Prilosec for 1 week this was during the month of November.  

Last week of November finally got into to see my Internist.  He started a new approach 2 Protonix a day with or without food, and Allegra D 24 hour.  The Allegra D worked great but not with my stomach, I became dizzy, nausea, headache.  So I am staying with Protonix only 2 times a day  and I just keep eating food, I did loose 10 pounds with all this.  I have gained about 2 back, I am a small person and did not want to loose weight.

So it has only been 6 weeks on double Protonix.  I am not sure if November on 1 PPI a day counts for anything in all this.  I have also been working out at a club to reduce stress and keep my immune system up.

Every morning I wake up and hope to be better - not yet.

My symptoms today: Swollen larynx, popping and clicking in my ears, feeling of swollen under my chin.  I have had blood tests chest, sinus x-ray and a CT sinus scan, they all normal, I get more results from the CT scan tomorrow.

When does the swollen larynx and ears go away? I feel like a loser and that I am the only one with this horrible feeling.  I see my internist tomorrow, so if anyone has any advice and hope please do share, thank you...m41
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Avatar_f_tn
After being diagnoised with LPR, it took a good year or two before my voice finally was completely back. Besides taking medication, I had to take speech therapy to help wth talking and reading outloud to my class. I have yet to find any new information on this condition. My doctor never said it would go away or if I will have it for life. My physican's office is with theAdvanced Medicine,of Barnes- Jewish of Hospital St.Louis, Mo.
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Avatar_f_tn
After being diagnoised with LPR, it took a good year or two before my voice finally was completely back. Besides taking medication, I had to take speech therapy to help wth talking and reading outloud to my class. I have yet to find any new information on this condition. My doctor never said it would go away or if I will have it for life. My physican's office is with theAdvanced Medicine,of Barnes- Jewish of Hospital St.Louis, Mo.
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Avatar_n_tn
Well, I am 63, and was just sort of cursorily dx with LPR, only I think it's a sinus infection-- or both. My GI doc disagrees with allergy asthma doc; finally, GP (PC) called and left antibiotic at pharmacy. I am on my 2nd day... cautiously optimistic. I am also a choir singer, and am waiting until I can sing again. As for the other symptoms, I do have GERD, but don't seem to have some of the other issues, such as lump in my throat, etc. It really seems more like a sinus infection, with a lot of mucus and post nasal drip, sore throat, swollen glands, and coughing! What gets me, is that there is a lot of controversy in the medical community over this dx, esp. between some ENTs and GI docs. It may even be inappropriate that I resorted to antibiotics in the end, but I have been sick on and off for 4 months... sometimes, it's all I can do to get a doctor to even listen to me! Not only this, but I seem to have severe reactions both to H2 blockers and to PPIs . I gained 4 lbs. the first day I was on Protonix, and also had an akisthinic reaction (intense restlessness). Pepcid makes me feel dopey and lethargic, but also restless; now I'm on Levaquin, and worried about my Achilles Tendon! I don't think there are any really good answers to these problems... hoping and praying we all miraculously get better! BTW, does anyone know how to get Vit. C if we're not supposed to eat anything acidic (other than taking a vitamin, of course). Has anyone tried lemon/ginger, and did it help or hurt? Thanks!
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Avatar_m_tn
For all those people supposedly suffering from LPR, I wanted to throw out something for consideration.

A year ago, after a very difficult and painful surgery which taxed my immune system, I suddenly suffered from a chronically tight throat with a feeling of suffocation at nighttime. I kept clearing my throat, hacking, coughing; I could feel spasming in my throat, difficulty breathing, and there was a constant feeling of something being stuck in there. I went to a gastro doctor who scoped me, and he discovered a rash all over my esophagus and inner stomach, as well as a very enlarged larynx and swollen vocal cords. He promptly diagnosed it as LPR/ acid reflux/ GERD and gave me a PPI prescription.

I never had acid reflux in my life; in fact, I used to always joke that I had a "stomach of steel." It was a shock. Dutifully, I took my PPI meds, enduring terrible side effects with very little reduction of my tight throat/ suffocating feeling. Something didn't seem right, so I started questioning the diagnosis and doing my own investigation. I noticed that, curiously, my throat got worse after eating certain foods. So I was starting to wonder if it was a food allergy of some kind. Yet, the scoping doctor had taken samples of my stomach and esophagus and sent them to the lab for allergy testing and all the tests came back negative for allergies.

Still, the acid reflux/ LPR diagnosis seemed odd. And the symptoms wouldn't really get much better with the PPIs. I started doing elimination diets only to discover that I got severe stomach and abdominal pain, and an extremely tight throat, within a day after consuming CANOLA oil--a man-made, genetically modified, highly processed oil that is in virtually all processed food and restaurant fare in the USA.

So I eliminated all foods made with canola oil. Miraculously, my “LPR” cleared up within a week after this change in diet. I was literally symptom-free and could breathe normally and sleep again. I also learned that the reason this allergy doesn't show up in lab tests is because canola oil doesn't have any protein in it--which is what allergy tests are sensitive to.

I offer this information to all of you who have suffered from chronic LPR symptoms and throat tightness, without any recourse. Friends, this country’s food supply is killing us. (Even the vast majority of olive oil is adulterated with other oils--just Google “fake olive oil”). By being very careful about what we eat, I think we can heal ourselves better than any doctors or PPI meds can do.
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