1. Community
  2. Gut, bowel and stomach
  3. Reflux Oesophagitis

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

Posted , 270 users are following.

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

899 Replies

Prev Next
  • susan26882
    susan26882 Anxious_Alex

    Posted

    Hi Alex,

    I was wondering how things are for year down the line.

    I have been trying to get to grips with what was diagnosed as GERD yet without the symptoms that go with it. I was sent to a consultant because of a persistently severe cough of 12 weeks. He said it was probably GERD. Had tests and found I had gastritis and a hiatus hernia in me oesophagus also removed polyps and tissue for biopsy0 and now awaiting results. I have found if I don't eat after 2pm my night cough goes away.

    My daughter in law came across LPR and your post. I feel that I have found the re8ason for my coughing as my symptoms mat9ch LPR more than GERD but not hopeful of anything from consultant. I am going to start the low acid diet today to see if that helps. Like you I feel it is interfering with my quality of life and no longer want to go out and eat as hate the coughing that starts within minutes of eating. Hope you have found something to help you and maybe pass on. Regards Sue

  • L2326
    L2326 Anxious_Alex

    Posted

    I usually never do this but I had to respond.  I have been battling this same thing, word for words.  Sometimes I can describe that it feels like there is a blockage between my nose and my throat that no amount of snorting will relieve.  I went to the ENT and they said LPR.  Went to the GI and they basically said, GERD.  They gave me the nexium, Prilosec, etc, which I took for over a year with no relief.  Finally went to the regular family doctor and he told me to take Zantac twice a day.  I took it for about 6 months and it was the only thing that really brought me significant relief.  I am currently suffering again cause I am scared to take it for so long, but I will probably take it again soon.  I know what you are going through and I hope this helps. 
    • gwen45436
      gwen45436 L2326

      Posted

      Hi, I too have all these symptoms.  I got rid for a few months and then it came back.  I don't think it helped that I started having a squeeze of lemon in my warm water in the morning as read how it was very alkalizing.  But my chest and throat came back and looking into it, I have read a post on here from a year back that said you can have the lemon with GERD but not with LPR as it irritates and inflames the throat!! 

      I was prescribed PPI (nexium) but have not taken it.  So the doc gave me Zantac twice a day.  It defo does help.  Also I have read that  you can take it for decades as it is very safe, just thought would let you know.

  • tamerascal
    tamerascal Anxious_Alex

    Posted

    Sorry its been a year since u posted but I just read it. After making myself a lab rat, I concluded that my LES was weak--cause of prob. I take 10mg baclofen 3x for the LES and omeprazole for acid in case some sneaks by. Doesnt fix it completely by way better than before...there are trial of baclofen going up to o 20 mg,  but 10 worked and fewer sides.  Hope this helps.
  • bic24773
    bic24773 Anxious_Alex

    Posted

    I've been diagnosed with it just over a week ago as I had symptoms of neck cancer, to be honest ibdint think my symptoms match LPR perhaps GERD I don't know the difference. I'd already diagnosed myself with mild crohns and I avoid triggers that work. Hard to digest lettuce, corn etc I've been worse since my diagnosis but in think the camera gave me an infection as he nasal cokd sores and a hacking cough with a feelingvof tightness. Look up GERD and crohns and I wish us both good luck. I also have MS and arthritis. 🌹🌈

  • silvia83479
    silvia83479 Anxious_Alex

    Posted

    Hello everyone. I want to thank everyone, I have read every post and they have been very useful to me. I want to make my story short. My symptoms began with balloon sensation, loss of voice, pain in one side of my throat that spread to the ears and palate, a feeling of acidity in my throat and a lot of funny stuff happening in my throat, ears and palate. No mucus. I must say that at that time I was under a lot of stress. My symptoms were also greater when I found myself with more stress.

    I went with the ENT inspected me with his camera and told me that I had LPR. There were no more exams, only the camera. He put me on a diet and left me prescribing PPI.

    After two weeks of treatment and without any positive results I read in a post that this could be of neurological origin. I went to visit a neurologist and after telling him my story, he looked at me and told me that he had no idea what it could be.

    Two weeks later I visited another neurologist, told him my story, asked me to open my mouth and with a wooden palette pointed towards a part of my throat, he asked me, does it hurt here? I answered yes, then pointed a point on the palate and said, does it hurt here? I replied yes, then did other tests sat at his desk and said, "You have glossopharyngeal neuropathy." "In all the years of practice I have you are the third or fourth case that I look at." The doctor is about 50 years old.  In addition the doctor said, the treatment lasts from 1 to 2 years.

    This happened about 18 months ago. Today I am 98% recovered.

    The treatment has been Carbamezapine, increasing it in small doses in the course of these months. I have investigated other sources and for cases that Carbamezapine is not a solution there is a surgical intervention, unfortunately this last option is not available in my country.

    Other things that have helped me are not drinking very cold or very hot beverages or foods, not eating spicy, avoid menthol, nerves are very sensitive and are very irritated by this.

    From what I read in this post, I suspect that many of you suffer from glossopharyngeal neuropathy or something similar and not from LPR.

    I hope this helps. Anxious Alex thanks for starting this post.

    • bic24773
      bic24773 silvia83479

      Posted

      Omg Sylvia I have ms and though that was causing some of my problems I've had exactly same consult as you, camera medicine tabs he even said it's not ms but is neurological. can I cut and copy Your reply please? I have a neuro appt in Feb and I have servere anxiety. Thank you it makes sense. 😃

    • silvia83479
      silvia83479 bic24773

      Posted

      Hi bic24773, english is not my first language, i don´t know what "ms" means. Of course you can copy my reply, as I said, I hope I can help some one else.

    • bic24773
      bic24773 silvia83479

      Posted

      You write English very well. It's multiple sclerosis a neurological disease. Are you in uk or abroad Sylvia? Than you again. Kindest regards

    • silvia83479
      silvia83479 bic24773

      Posted

      I´m in Central America. Try to collect all the information that you can find about Glossopharyngeal Neuropathy to show to your doctor, very few doctor knows about this condition.

    • tammy57327
      tammy57327 silvia83479

      Posted

      I think you might be right! That's scary.....did you have throat pain and swelling after talking etc....I've had the pain in the throat since last october.  Did you have to go for an MRI ?

       

    • silvia83479
      silvia83479 tammy57327

      Posted

      Hi, no, I did not have throat pain and swelling after talking and no, I did not go for an MRI.
  • tt59
    tt59 Anxious_Alex

    Posted

    I got my LPR under controlled. I am no doctor so I can just offer my experience.

     

    I notice you say medication makes it worse. Than you are taking too much.  I had the same problem at first, the doctors would give me stronger and stronger medication and it would get a lot worse. Actually I needed less. 

     

    I just use half a zantac 75mg when I feel like.  It’s all about reading yourself.  Find your proper dosage and go with the flow.

     

    Also I noticed that a good night sleep is very important and stomach health as well. 

     

    Here is my routine for the last 2 months:

     

    1 - I cut down any food that make my symptoms worse like spicy food and dairy products (find yours)

     

    2 – I have one probiotic in the morning and one at night.  I got the cheaper one at my pharmacy

     

    3- I take one 10mg of zinc every day or every other day. I heard its good for the healing of the stomach

     

    4 – I started with one zantac (75mg) before bed and one in the morning since my symptoms were worse in the morning. But I realised that it was a bit strong so I changed to half a pill after meals. (yes I split it in half even if they say not to do that).  Now I am down to half a pill in the morning and half a pill before bed.  It’s getting better and better.  I think in a week or two I will reduce a little.

     

    5 - As I said earlier I have the feeling a good night of sleep is good so I take a sleeping pill once in a while. (try to find natural ones)

     

     

    So in conclusion: Heal your stomach by eating well and probiotics, neutralise the acid with anti acid (find the right dose for you) and sleep well.

     

    I have been doing that for about two months and I feel 85% better than before. My coughing and throat clearing are almost gone. 

     

    Good luck.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.