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LPR/Silent Reflux - desperately in need of a miracle. Has anyone recovered from this?

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Anxious_Alex
Anxious_Alex

Hi - I'll be as brief as possible. For almost a year I have had symptoms which have worsened, starting with throat clearing and progressing to regular spiting out of white, frothy stuff, post nasal drip, lump in throat or sharp sensation, streaming or blocked nose and hoarseness. These are all unpleasant and irritating but because I talk for a living my work is becoming badly affected so it is now making me depressed and anxious as well. I was referred to ENT, had the camera up the nose and down the throat to rule out anything sinister and was given Omeprazole and Gaviscon Advance. No advice, no explanation. I had to find it all out myself. (and I'm not confident/assertive with docs, either).

The drugs haven't helped, I'd go so far as to say the reflux significantly worsened. I had faith in the Gaviscon Advance having read how it works but that hasn't made any difference either. I have monitored everything I eat and drink and can't find anything that triggers it with the possible exception of bread, and I may be grasping at straws there. Certainly coffee, alcohol, spicy food etc don't trigger it and ginger, acidophillus, apple cider vinegar don't help. It does seem to be cyclical - I'll have a week or so of decreased symptoms then it gradally works up again to two or 3 weeks of hell. No heartburn, and the reflux is almost always upright, no problems sleeping...just the other 17 hours a day! The ENT was brusque on my return visit and said that, aside from speech therapy, there was nothing more he could do for me. This can't go on, though. At it's worst it makes me tearful and desperate at work and speech therapy isn't going to stop me spitting up into a whole toilet roll each day, or reduce the other symptoms. I'm also worried my teeth will rot and I fear for my job. Has anyone experienced this with the same pattern/lack of triggers etc? I would love to hear any positive experiences that don't just repeat the same old same old, ie, raise the bed 6 inches, dos and donts with food etc.

28 likes, 899 replies

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  • john77945
    john77945 Anxious_Alex

    Posted

    hi there. i have almost the same issues but i also have severe abdominal pain and gas and bloating. the throat swelling, try to burp and cant, no feeling of acid creeping up at all. wake up and feel fine but as soon as i stand up, throat swells and i feel crappy. i can lay flat and my guts squish around and make lots of noise. also have serious mucous in my ears and sinus.... I take licorice root and it helps me burp. also supposed to heal linings that are damaged. alkaline water doesnt do anything for me
  • Deneeze99
    Deneeze99 Anxious_Alex

    Posted

    Ok where do I start just over 2yrs ago my husband had a stroke. Then about 2 months later I had a month long episode of what was eventually thought to be asthma. Never had it in my life I am 64 yrs old. I had a brown inhaler but 3 weeks later my voice went croaky and I struggled to talk. 

    To cut a long story short I have had a camera up my nose and down my throat 4 times each time they say nothing wrong except acid reflux but I don't feel any symptoms. 

    I have been attending voice therapy but my voice gets worse. 

    I am now on anti depressants because I feel so low. I hate not being able to talk properly but that's my only symptom. 

    My husband said it's stress related but I am retired and don't feel stressed. Don't know what to do am at my witts end with worry. 

    Can anyone relate.  

    • phil16820
      phil16820 Deneeze99

      Posted

      I had the same symptoms at your age. It turned out to be Laryngopharyngeal reflux disease (LPR). Your symptoms sound like LPR as well. LPR is sometimes referred to as silent GERD because there is no pain. LPR causes mucus to accumulate in the throat to protect the throat from acid reflux. That mucus gets into the windpipe and chest and causes adult onset asthma. LPR can be fatal if not treated. The good news is that LPR is very treatable.  Find my posts on this site to get some advice on how I effectively treated my LPR.
    • phil16820
      phil16820 susan79492

      Posted

      I'm very familiar with Dr. Kaufman and the book. There are some useful insights there. I even tried to develop a throat spay based on her/his formula.

      My experience is that an alkaline diet made no difference at all after reaching my correct weight..My symptoms are exclusively related to my weight. If I gain significant weight I get symptoms. When I take the weight off all symptoms go away no matter what I eat, but that's just me. If it works for you that's great. Nevertheless if you still have any symptoms at all I hope you will consider my advice.

      BTW do you ever use Maalox or PPI"s?

       

    • carmel83758
      carmel83758 susan79492

      Posted

      Hi Susan. If it is ok with you would like to stay in touch with you on here. I have tried most of the ppis and it alwsays ends with the side effects being horrendous and worse than the problem. Now am taking b icarbonate of soda but if I take too much the side effects are bad too. Would like to talk to you about the alkaline water and diet if that is ok.
    • Katnis
      Katnis phil16820

      Posted

      Hi Phil,

      Please adivise how I can effectivley treat my LPR,  I admit I have really changed my diet, still drink coffee and Tea, mostly just one cup each a day, trying to cut back on soda's, rarely have alcohol, quit smoking several years ago. I read some people talk about eliminating bread, it bread a problem, also read about alkaline water, is this something one can purchase at a pharmacy or grocery store.  Then you mentioned maalox or PPI S ? Ar these good products... I new to the sight but have been suffering for at least 3 plus years.  I have many of the symptoms described above  tried Dexilant but stopped using it, never truley felt any relief.   Constantly feel like mucus or something is in my throat around the voice box, dont have typical heart burn that gerd patients have, have to clear my throat throughout the day. Feel like my throats constricted, can choke easliy on saliva, feel the stress is also a trigger for me.  Any advise im over wieght as well.

    • donclaudio
      donclaudio Deneeze99

      Posted

      Hi Deneeze,

      a few questiions: (and I must assume you have no other diagnosed

      conditons right?)

      1. what anti depressants?

      2. do you have often throat mucus/throat clearngs etc.?

      3. what is your BP?

      4. did the upper endoscopy report any indication of "inflammation"?

      I have a few other questions that might follow the above..."maybe?"

      Your husband may have a good point....I assume he is nearest you, and has keen observations...perhaps "anxiety" due to his "stroke"..and related conditon and treatment/s? Your initial symptom began only 2 months post his stroke.

  • donclaudio
    donclaudio Anxious_Alex

    Posted

    sodium may increase BP, for those who may be increasing intake consider monitoring your BP..I use a wrist Omron..$30 to $40..have compared results in dr office...from identical to almost identical. take readings am and pm..always same time and position...Claudio
  • abc1234
    abc1234 Anxious_Alex

    Posted

    Hi I am new to this forum and Alex's question came up automatically for me. I was curious how Alex is doing?
  • carmel83758
    carmel83758 Anxious_Alex

    Posted

    Have you lookedinto the possibility that if you stop eatintg bread altogether it helps and the reason the doctor cannot help is beause he is not educated in allergies and intolerances with food?
    • abc1234
      abc1234 carmel83758

      Posted

      I like this idea and would be very willing to find a medical professional to help me with this idea, but finding the right person is the difficult part. It's difficult to determine what's fact versus fiction and there are plenty of medical people willing to accept your money.
    • carmel83758
      carmel83758 abc1234

      Posted

      Would have thought you can do it alone. Stop eating bread altogether and make a note of how you are. Then when you start again make notes of how you are etc. If you go to a professional they will ask you to make notes and then examine them for you - big deal. Why cant you work them out yourself?
    • abc1234
      abc1234 carmel83758

      Posted

      Ah I see. Yes I would agree this is a DIY. I have no issue with bread myself. As mentioned there are some alternative theories on what causes AR with gluten being one. I thought you were hinting towards all the alternatives. It would be great to find a doc who looks for the cause then fix rather than just fix.
  • kyle32337
    kyle32337 Anxious_Alex

    Posted

    I just found this forum. I am a 54 year old man. Diagnosed with this issue by my Otolaryngologist in mid Sept. Symptoms began for me on 09/07/14. He looked down my throat all the way to my voice box, did not see any signs of throat cancer. I have swollen lymph glands in my neck, mostly the submandibular (just under the jaw). I also feel like I have the flu somedays and other days I feel decent but still mild tenderness in the glands. Lump in the throat, scratchy sound in my voice, throat clearing,  ears stopped up with mild pain that comes and goes. I also have mild swelling in the front of my neck on each side of my wind-pipe. No heartburn whatsoever. He recommended Prilosec and he said diet in his opinion does not cause it. He stated that it was the loosening of the sphincter in the esophagus in some people as they age. It's still hard for me to accept this diagnosis. I feel that something else must be wrong. I've drank beer some nights and wake up feeling fine, then I go to bed sober and early and wake up feeling terrible. It's very unpredictable. I am trying the recommendation of adding PH drops to my water to see if this will help. I'm losing my mind with this. I exercise a lot and previously ate healthy. But I also ate a lot of raw vegatables, brocolli, onions, cauliflower, you name it.
    • donclaudio
      donclaudio kyle32337

      Posted

      Hi Kyle,

      if it were only older folks who have LPR...then we could kinda accept your dr's notion...there are some potential reasons for the LES to "become" impaired...some say:

      constant pressure can cause it to weaken...abdominal pressure...

      reflux...a mini might be a burp...the mother of all reflux's "vomit"....

      intense...constant ..vomit...cough...etc...

      medications,..and

      some nutritional deficiencies...

      even some foods

      The valve has two parts...one skeletal muscle and the other smooth muscle.

      LPR without surgery is not an easy fix....evaluate the proposed causes...hopefully you can garner enough info to be helpful.

      In the meantime...anti gravity should help.....during sleep we don't always know our position...so raise your head and shoulders a tad..won't hurt...bedtime...the big deal? we don't always know what's in our stomach at any given time..could be a bacteria...open

    • kyle32337
      kyle32337 donclaudio

      Posted

      Thanks donclaudio. I have made some changes along with taking the Prilosec. I make sure that I eat 3 hours before bedtime. i have purchased firmer pillows. I have changed my diet eliminating onions and peppers and I take a big swallow of antacid before bedtime. I'm different from most 54 year olds as I have always exercised a lot and look like I might be 40. Since January, I changed my diet to more natural foods with plenty of fresh vegatables (brocolli, cauliflower, carrots, onions, peppers, etc.) A very sensible diet with chicken and turkey and as a result I have lost 20 lbs since January. I'm not at all overweight. This started in September. I still have trouble believing that LPR is actually my problem. Like I said, I don't have heartburn at all. I do have a scratchy throat, pain and stopped up ears. Swollen glands under the jaw. General tenderness in the neck mostly around the hyoid bone and the thyrohoid membrane below it. The pain shifts around, somedays it's not there and other days it's in different places. Some days my neck feels hot to the touch. I clear my throat a lot. I have become very conscious of burps and I usually try to drink water afterwards. I have also been adding the ph drops to my drinking water. I have gotten better, much better, but it's still there. Do my symptoms sound like LPR to you? Have I possibly created it or worsened it with my diet? Because my food is bland, I often eat pico de gallo on everything for flavor. Your advice is appreciated.
    • carmel83758
      carmel83758 kyle32337

      Posted

      Why dont you try the bicarbonate of soda? It is so much simpler than changing your lifestyle and diet. Many people swear by it. No side effects (yes they say too much salt is bad for you but I never put salt in my food so cannot get too much from it). Changing your diet to natural foods and more vegetables is great for any preventative or curing practice but all this stuff about drinking special water, not eating before bed etc is often over doing it with unnecfessary things and if you are not careful your persona becomes your illness where it is all you think about, which is unhealthy mentally.
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