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

Posted , 268 users are following.

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, 898 replies

Report / Delete

898 Replies

Next
  • Posted

    I stated suffering with this condition during my pregnancy and I was told it was going to stop once I had delivered the baby. My baby turned 2 on 23 February and I am still suffering. I have been on Lansoprazole, ranitidine and gaviscone. None of these have worked. I had a nasal spray which did not work. I have had thyroid tests, chest xrays, liver function tests you name it. When I last saw the ENT he told me it was a difficult condition to treat I may have to get used to living with it and my heart sank. I have one more specialist to see who is going to put a camera into my stomach I am waiting for the appointment. In the mean time I have been asked to stop all medication and I spend the day spitting mucus. I will inform you if anything useful happens but it seems there is quite a lot of us suffering from this condition. I also stopped taking dairy products that seemed to reduce the mucus. It seems that we really do need a miracle.
    Report / Delete Reply
    • Posted

      Dear Mandi4: 

       I am not sure if you are still active here. your post resonates with me almost 100%. I am currently expecting and has started to suffer from this condition during pregnancy as well. normally I never had any issue with my digestion. everyone says it will go away during pregnancy, but hearing your experience, I am skeptical. my pregnancy has been more difficult than anyone I know aorund me.  the constant nausea/spittng/mucus clearing has been really tough on me.  I read you said you become very depressed, and as have I. I have to stop all my activities including writing/reading(nausea makes it hard to concentrate)/exercising.   I walk around with a spit cup constantly, and also wake up multiple times a night to clear throat.  It wears me off and energy wise it is also very debilitating. 

      I would love to hear if you have eventually gotten rid of this problem. soemtimes I feel maybe I am being a baby, nausea/acid reflux a lot of people have, they don't seem to be debilitate by it. but I really feel I couldn't do anything that remotely uses my brain except maybe for an hour or two after I just wake up when the acid reflux and nausea is the slightest.  If I wasn't pregnant I would definitely eat less, but as it is, I still have to eat regularly and multiple meals, and avoiding everything I know that is not good. still even at its minimum, I can hardly say I feel myself. 

      I would like to hear your update and give me some guidance and hope.  thank you.   

      Report / Delete Reply
    • Posted

      Are you sure you don't have hyperemisis gravidarum. It was undiagnosed in my pregnancy and only stopped the second the baby was delivered. It's what princess Kate had....but hers was diagnosed and treated which means it can be !

      Report / Delete Reply
    • Posted

      Hi Cecilia. I just read what you're going through with your pregnancy and felt so bad for you. What you've described is exactly how my pregnancies go. It's the most miserable experience and I swear no one understands it unless they've had the exact symptoms. This might sound nuts but this is the only thing that helped me. Acupuncture. I didn't believe in it until I did it. My acupuncturist used to put these pressure points behind my ear and I could squeeze it when I felt sick. It gave me relief. You will also need to start drinking water that's more alkaline. Start researching this so you understand the different ph levels with each brand of water. I purchased all my water at Sprouts. It got expensive but it worked!! Stay away from sugar....it makes you sicker. Avoid red based foods, onions, spicy, carbonated.....all the basics I'm sure you know about. I ate things like pancakes, potatoes, eggs, vegetable soups, turkey. But seriously....the acupuncture and the water are what saved me!! At the end of the pregnancy I coughed so much I did nothing but pee 24/7 and my ribs hurt. But after I gave birth.....cough stopped and life went back to normal. It's 3 years later and I'm spitting in towels again.....but my diet has been awful with the holidays. Hang in there!!

      Report / Delete Reply
    • Posted

      Hi Cecilia,

      I was just diagnosed with silent reflux from an allergist. He told me to stay away from certain foods. I did and then slowly added them back. I have to say the drink that makes me cough the most and hardest are dark sodas like pepsi and coke. 

      I was sick for 2 weeks with this and remembered I drank a lot of pop. I have been better and then had a pepsi today and now I am coughing to the point of dry heaves and my throat hurts.

      I wish you good luck in finding out what causes yours so you can avoid it. 

      Elly

      Report / Delete Reply
  • Posted

    Mandi4, thanks for your reply. I, too, have had the tests you mention. I have also taken dessiccated adrenal gland in the hope my adrenals might be underfunctioning and that would be the answer. Sadly that didn't help either. I have spent fortunes on this - every pill, supplement, diet that's been suggested. Please let me know how you get on.

    JPT, thank you, also for your reply. Being in the UK there are no brands of alkaline water (8.5 or above) available to buy so before investing in anything too seriously expensive I bought an Alkapod (from a reputable site, double filter). I am now down another £58 and, sadly, it hasn't made any difference yet. I read the article by Dr Koufman (I've been to that site before and read other articles there) and the science/evidence seemed convincing but after 2 days I haven't noticed any improvement. I will continue for at least a couple of weeks and have gone back on a strict low-acid diet at the same time because I desperately want it to work. I no longer have even a few days of limited symptoms - it's full on, all day, every day. I can't tell when I'm refluxing and when I'm not any more. I am now so stressed at work and in tears several times a day that I have seriously contemplated suicide more than once. I struggle to cope with even the slightest upset or problem because this one seems so all consuming and simply getting through my job (which is a speaking job) takes all the strength I have. My tooth enamel is damaged and my teeth are horribly sensitive now. My breath always smells terrible. My nose is very bloody every morning. I wheeze sometimes when talking. My tongue feels too big and my mouth feels sticky, causing clicking and slurring when I talk. I had never even heard of this until last year. Just feeling so awful is bad enough and I sympathise wth anyone who suffers severely with this. But my desperation comes from the fear of losing my job and the terrible situation that will put me in. It's said often that stress makes it worse but I am constantly in a state of stress because of it, so it all feels hopeless. Relaxation techniques don't help my speech so the stress can't be managed.

    I will continue with the alkaline water and hope for a positive result in a week or so. Thank you JPT. Mandi4, have you tried it?

    Report / Delete Reply
    • Posted

      Hi Alex,

      Just reading your post about PLR you wrote over a year ago and wondering if you ever found a solution for it. My heart goes out to you because I am just now going through this crap with no idea as to where to begin to fix it. I feel so much like you did in your post. So depressed and stressed and frustrated and doctors do not help any. Just pills, pills and more pills. Please write back to me and tell me how you are doing. I feel so alone in this....like in a box, slowly sufficating.

      Report / Delete Reply
    • Posted

      Hi Allie, not sure if this is still active, but am new to here.  I am not sure if I dont know if I have LPR but it is possible.  Had gastritis five years ago, but got it again with different symptoms of pain and burning right up through my chest and into my throat.  It's gross and can last hours.  Some food one day sets it off and even warm water.  Now it seems cleaning my teeth sets it off!!!!!!  Waiting to see gp next week. 

      I hope someone comes back to us.

      Yes know what you are feeling  - people don't understand who have not had it or just say - oh its a bit of heartburn or indigestion - no it aint.

      x

      Report / Delete Reply
    • Posted

      have you found the information you were looking for? are you feeling better?

      I had the same symptoms, how ever I'm feeling a little better. I'm still working on getting better. I know what to do...i just need to continue the process.

      This is what I did. I learn this process because I am going to a holistic person who is helping me.

      -Do a stomach cleanse

      -Protect & heal your throat , esophagus, and stomach lining with marshmallow root tea or powder, DGL deglycyrrhizinated licorice root extract chewables, Slippery elm pill, fenugreek & thyme pills . (nature's sunshine brand)

      -Proper nutrition, with BEE POLLEN pills, b complex, magnesium complex

      -avoid- mint tooth paste, use baking soda instead. buy a tongue brush & brush after meals to remove the stomach acid from you mouth, tongue, avoid oily food, spicy food, process food, don't use microwave, no sodas, no sugar, no fried food, no onion, no tomatoes,.

      -blow your nose often, & possibly use saline to get the stomach acid from your nose, do deep breaths, exercise, drink lots of water, reduce stress, get some sun, drink green /veggie shakes

      LAST STEP I'M TRYING TO DO IS . FIND YOUR AGGRESSOR FOOD. If you can find your aggressor food you will complete your treatment. what I am currently doing is (I bought a glutometor like the diabetic people use) and I will test my self in the morning when I wake up, then after breakfast and check how high my glucose is. until I find the food that shoots my glucose to the roof. that will tell me WHICH FOOD IS MY AGRESSOR FOOD. Once I find my agressor food I can stop eating it and my treatment will be complete.

      Report / Delete Reply
  • Posted

    Oh, and yes, I agree about aspiration and affecting ears etc. I have earache all the time and am sure the bloody nose is acid damage.
    Report / Delete Reply
    • Posted

      have you found the information you were looking for? are you feeling better?

      I had the same symptoms, how ever I'm feeling a little better. I'm still working on getting better. I know what to do...i just need to continue the process.

      This is what I did. I learn this process because I am going to a holistic person who is helping me.

      -Do a stomach cleanse

      -Protect & heal your throat , esophagus, and stomach lining with marshmallow root tea or powder, DGL deglycyrrhizinated licorice root extract chewables, Slippery elm pill, fenugreek & thyme pills . (nature's sunshine brand)

      -Proper nutrition, with BEE POLLEN pills, b complex, magnesium complex

      -avoid- mint tooth paste, use baking soda instead. buy a tongue brush & brush after meals to remove the stomach acid from you mouth, tongue, avoid oily food, spicy food, process food, don't use microwave, no sodas, no sugar, no fried food, no onion, no tomatoes,.

      -blow your nose often, & possibly use saline to get the stomach acid from your nose, do deep breaths, exercise, drink lots of water, reduce stress, get some sun, drink green /veggie shakes

      LAST STEP I'M TRYING TO DO IS . FIND YOUR AGGRESSOR FOOD. If you can find your aggressor food you will complete your treatment. what I am currently doing is (I bought a glutometor like the diabetic people use) and I will test my self in the morning when I wake up, then after breakfast and check how high my glucose is. until I find the food that shoots my glucose to the roof. that will tell me WHICH FOOD IS MY AGRESSOR FOOD. Once I find my agressor food I can stop eating it and my treatment will be complete.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up