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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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  • susan79492
    susan79492

    Posted

    Moonbuggy,

    Re: breathing in problems, I knew this rang a bell & found a Dr. Koufman article where she discusses it. Her is an excerpt:

    "Did you know that asthma is one of the most common misdiagnoses, because silent reflux mimics asthma? Here’s a big tipoff: When you have trouble breathing, do you have more difficulty getting air IN or OUT? People with reflux have trouble getting air IN during inspiration (not out during expiration). People with asthma have difficulty getting air OUT of the lungs. In truth, many people with “asthma” may not actually have it, and, consequently, asthma medication doesn’t really help much if at all. The fact is that once the correct diagnosis is made, effective anti-reflux treatment can permanently cure this asthma-like breathing problem."

    Hope this helps.

    Susan

    • jill16793
      jill16793 susan79492

      Posted

      My first post but I've been following this discussion since February when my GP suspected LPR, since confirmed by ENT probe and my gastroscopy yesterday found a hiatus hernia.  But as I understand it, this may or may not be the cause of my LPR.

      This forum has been extremely useful tho has sometimes made me v depressed as I slowly realised this is a long-haul thing. 

      But re asthma, I'm finding this is my single worst symptom.  The other symptoms - cough, throat clearing, mucus, aren't too bad at the moment, or at least I can put up with them.  Lanzoprazole seems to be helping tho I'm not convinced this is a long term solution.  But with the slightest extertion, I find I'm breathing heavily,or at worst, struggling to breathe and my heart beats heavily.  The consultant I've seen doesn't recognise asthma-like symptoms as part of LPR and suggests I get them treated separately.  But I have never had asthma in my life, and this started exactly when my LPR started (Christmas 2013) - too much of a coincidence I think.  This is a problem for me as I am very keen on sport and like to keep very active.  I think I need to find a more enlightened doctor as even a casual perusal of the internet reveals numerous cases of LPR sufferers with breathing problems.  My doc also dismissed the idea of a Peptest (so I will probably order online myself) and wouldn't listen when I tried to describe Thomas Lee's helpful book and this forum. 

    • debra27175
      debra27175 jill16793

      Posted

      My main symptom of LPR is the breathing problem.  I have it everyday and am sick of it, yet I still do things that agravate it, such as drinking coffee and eating chocolate while telling myself everyday i am going to stop.  My symptoms started about a week after i stopped a 10 day water fast.  Here I thought I was doing something good for my health and it turned out just the oppisite. I take prilosec 20mg. for almost 1 year now. for awhile I took 40mg but that seemed to give me more symptoms taht I don't normaly have like burping up food.  I do seem to burp a lot though.  I just wish I knew what happened during that fast to cause this so i could fix it.  I have had mild asthma my whole life, I know what that feels like and this ain't it. there is definately a difference.
    • suzeq1972
      suzeq1972 debra27175

      Posted

      There are two occasions during the day that I feel I need to take deep breaths in.  The first is after eating when I feel the air coming up through my airways (like a burp) is fighting with the air trying to come down my airways.  Secondly is when I'm starting to feel hungry.  That could be due to low blood sugar levels and your body starts craving oxygen a little more.  

      When I think back, I have not exercised since having reflux and I'm not eating as much (hence, maybe, the low blood sugar levels). 

      Does this sound familiar to anyone?

    • meunier58121
      meunier58121 SAKG

      Posted

      Also key to ANYONE's recovery is to put the brakes on reading TOO much of forums such as this that can build up anxiety in the nervous to a point that is truly damaging to overall health.  (For example, while trying to ween off Nexium do you try to ween of reading such forums as this?)  Do try to relax and BEFRIEND yourself.  If you don't it will be much more of a struggle for others to do so ...including medical professionals.  They are, themselves, but human as well after all ... with all the fragility (and strength) that therein is implied.
    • carmel83758
      carmel83758 meunier58121

      Posted

      The trouble is that most are too lazy to research properly. The amount of times I have read a quedstion such as IS SUCH AND SUCH FOOD ACID OR ALKALINE when they could have googled it quicker or looked it up on a good book. It actually takes longer to ask everyone else and you are less likely to get the correct answer

      I use two sites - this and another - and the other one lists all of the cures for acid reflux, along with the histories of hundreds of people who insist that particular thing helped them or cured them. I read it and take in wshat I read. I have found it far more informative and helpful and accurate than many of the posts here.

      A lot of people here also make the mistake of assuming that all of the users on here are at the same level of them knowledgewise, this is not so, there are some therapists and doctors who come here too who know more. It is not just those who want help and are needy.

      Get hold of the book by NORMAN COUSINS - he was a professor of medicine, a very educated and intelligent, capable and accomplished man. He became very ill with a back and was warned that it would get worse and worse and more painful where he would eventually be frozen to the spot locked into one position unable to move at all.

      He didnt get upset or reach out for sympathy. He demanded that the doctors gave him 25,000 of vitamin c every day and watched lots of comedies all day to laugh off the pain. He got better despite dozens of doctors insisting this was not possible.

      He is someone I admire because he did not just follow what the others told him like a brainless zombie. Anyway he had nothing to lose. His wife used to visit him in the hospital and moan and insist they change his diet because despite him being rich and paying for the best they gave him white bread and other non nutritious foods So she took over and brought his food in.

      Our doctors do not tell us that we will get cancer or other disease if we follow a bad diet. We find this out afer we followed the bad diet but then many run to the doctor for help.

      He knows nothing about diet so what is the point of this? Many supplementsl say to dicuss with your doctor4 if you take it. Totally pointless because he knows nothing about supplements.It is like asking a window cleaner how to fix your car.

      Another thing to take into account - which is just common sense. If you are of normal build and weight and it says take one take one. But if you are huge and weigh twice as much as the average person you need to take two. You shoukld not need to have it all spelt out for you.

      I totally agree that going on forums can build up anxiety. It an also lead to totally inaccurate diagnosis and ridiculous advice. But that is what happens when you throw something into a crowd of people and hope for the best.

  • aubreybear
    aubreybear

    Posted

    susan79492, I take the NOW Foods version that in the description states it is 5000mg potency but on the back of the bottle, the serving size is 3 capsules at 75mg (200:1 potency). I take 3 of them in the morning. I still sometimes have small pangs of pain in my ears, but it is 90% better.

    I don't take the vinegar often since I've had so much success with the aloe vera.

  • musicchick581
    musicchick581

    Posted

    Well...I have been on Nexium every other day for 3 weeks and doing a bit better but today was the day I skip 2 days and try to wean off. It didn't work. I had cricopharyngeal spasms again, coughing, indigestion and LPR symptoms. But, maybe because I ate lunch so fast? I had to scarf it down in 3 minutes. I came home, ate watermelon and an apple and feel a bit better. Sigh. Go AWAY Nexium and reflux! FOREVER! I miss my chocolate!
  • jon08211
    jon08211

    Posted

    musicchick581 - I too choke at night, and I find your comments very interesting. I wonder if you are a singer? I am and I have opera singing friends who have problems with reflux, which usually means that they swallow large amounts of Gaviscon.

    I have found this site incredibly useful, especially the advice from JPT. I have been drinking alkaline water for some time, and it definitely helps - far more than PPIs!

    Waking up choking, especially just after I first go to sleep is still my main trouble. I would be very grateful for any further help with this. Thanks

  • Purdie01
    Purdie01

    Posted

    Are there good acids and bad acids? Working on the principle that the major damage is being down with acids activating the pepsin on the way down the throat, I have been trying to stick to a fairly non-acidic diet following Dr Koufman's reflux book and drinking loads of alkaline water. Been on it a few weeks now and nowhere near cured but finding reflux more manageable. Now trying to re-introduce foods gradually. Finding it difficult though to know what acids to avoid when looking at products on supermarket shelves. I mean amino acids are in all green vegetables but they are presumably OK, I know lactic acid is bad but what other acid types should I be avoiding the most? Any help on the terminology appreciated.

    It's difficult finding the balance between dealing with pain and having a life. I've been finding the diet is very strict and prevents me going out socializing for meals and drinks with friends and it can't go on indefinately like this. I therefore intend to try and stick to low acid 5 days a week and have 2 days off and see how I go.

    I have already had to give up my biggest hobby for 2 years now - hiking as often find I can't breathe when walking particulary on inclines and nothing helps when it happens. I have found other forms of exercise now like tai chi and Pilates & swimming which enable me to keep fit without muscles going into spasm but it's still causes discomfort. I'd love to get back to walking and have recently started doing shorter flat walks again at weekends.

    I sleep OK and find a wedge pillow just makes things worse. When I first wake up, my throat is a little phlegmy but otherwise OK but it gets progressively worse as day goes on and by evening it is usually quite sore.

    I also talk a lot at my job as I'm an administrator but 60% of the job involves answering phones from clients and I too swallow large amounts of Gaviscon Advance which helps a little but not enough. Thursdays tend to be a little easier as I'm not on phone duty.

    Finding this forum really helpful for ideas and sharing experiences. Used to say I couldn't cope unless I got a cure for this. Now I'd be happy with a couple of hours of relief a day rather than the 24/7 discomfort/pain I get during waking hours.

    Lisa

  • musicchick581
    musicchick581

    Posted

    Jon-I'm a music teacher. I primarily play band instruments but have been teaching chorus the last two years.
  • ryan32010
    ryan32010

    Posted

    Susan79492 & Moonbuggy, many thanks for the info, will definitely look into this.

    Lurkspur74, was your symptoms better in the Philippines?

  • lurkspur74
    lurkspur74

    Posted

    ryan 32010, I'm working here in Qatar...just had this problem only recently like 2 months now. I look forward to going home in the next 2 week, as there are lots of tropical green veges and fruits that I used to eat 8 years ago and aren't always available here in Middle East. I want to add them on my food intake even for a month to see the difference.
  • jon08211
    jon08211

    Posted

    musicchick - Thanks - so do you find your symptoms are worse after using your voice a lot?

    I definitely suffer after evening concerts, but I guess that could be other variables. I am also asthmatic. Apart from the alkaline water, I have statred juicing vegetables - mainly carrot and kale, and I think it is helping.

    I have a hoarse voice at the moment though, and two concerts this weekend!

    • skinnygirl11
      skinnygirl11 jon08211

      Posted

      Hi Jon08211,

      I have been following this forum with interest as I was recently diagnosed with LPR. I sing in a choir and have had to give up singing as I had a constant sore and dry throat and was hoarse. I also have problems when I talk a lot and have a constant lump in my throat.

      I am trying to follow a strict diet, but finding it impossible as it really affects my social life.

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