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

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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.

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    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?

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    • 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.

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    • 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

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  • 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.
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    Alex hi I have been waiting for you update. I have had a blood test unfortunately I have forgotten the name its been a while now but there was no indication of anything. On 23rd of April I am having a Gastroscopy which I was promised last year and is now being purchased for me in a private hospital and it has become clear to me why it took so long. If they had just told me I would have paid for it myself if it will reduce my suffering. I will update you with the results in the meantime I will share with you the things that I have found helpful through trial and error over the past 2 years. I am still off all medication as advised.

    Getting any form of relief is hard work but achievable with serious sacrifice. My problem now is not being able to follow the strict routine all the time because I have a young toddler. Bending down causes the acid to come up but I often have to do it to pick up my son. If you need to bend down use your knees don't bend your waist. There is a marked difference during the weekend when my husband is around to pick him up for me.

    Getting a lot of rest is necessary as it seem like tiredness makes it worse. I understand you when you say you felt suicidal. That's how I felt especially when I was pregnant I used to sit there wishing someone would come and kill me. I have felt very depressed at times but my beautiful son has kept me going. I used to hack on my throat so much my son learned the behaviour and started doing it every morning. I started paying for my son to go to a childminder twice a week and that helped as I could concentrate on myself those two days. I have now stopped this because of the money situation but it gave me time to come out of the depression and re-energize to fight the condition.

    Being unhappy seems to make it worse as well because my marriage was on the rocks during the time and every-time there was an issue my symptoms would spiral so if you feel low please look at getting that sorted.

    Eating in time is also very important because an empty stomach also gives the same symptoms with a very full stomach. Try not to over fill your stomach eat only small portions at a time. Initially I could not take any coffee or tea without really bad symptoms but lately I have improved and a week cup of tea or coffee is alright

    For you to get any hours of relief from this condition you have to abstain from many food items at the same time all the time. Some of the foods worsen reflux some increase the mucus so you have to to do it all at once.

    Fat in any form is an enemy of this condition. Avoid anything fatty including nuts and fruits like avocados. All forms of sugar must be kept to the bare minimum. Dairy is a definite no no and so are soya products they increase the mucus production. I understand meat also increases the mucus production but I am not a vegan I am anaemic and I have chosen to eat the best source of iron red meat. If you can go vegan its best for you because you will reduce the thick sticky mucus production. Do not eat and fruits or drink fruit juice on an empty stomach.

    If you eat bread go for the farmhouse loaves which have no added vitamins because some of those vitamins aggravate the condition. Before a dietician told me this I had realised because I take suplements and it was always worse after taking my supplement.

    Spices may also make you feel a heat in your chest but if you can take black pepper or chillies they help thin the thick mucus stuck on your throut and you can spit it out and get relief for few hour.

    Before going to bed take a hot shower and spit out the mucus in the shower as it gets thinned. If you listen to the advise not to deep throat it in the morning you have such a buid up in the morning which makes you unable to cope at work.

    Try to keep a tooth brush, toothpaste and mouthwash with you all the time. When you go to the toilet give your mouth a quick brush and rinse with the mouth wash it will get rid of the bad smell and taste and give you confidence. You need a mint free toothpaste and mouth wash because mint aggravates the condition.

    The best results for me have been going to bed empty. I eat my dinner by 6 pm and drink only water and in morning the build up is manageable I can remove it during brushing my teeth and have breakfast and be free of symptoms until mid afternoon.

    After speaking to my GP I have chosen not to try the alkaline water. I feel that I am already suffering from a horrible condition I do not want to start nasty side effects with solutions that are not scientifically proven and may not work and end up worse off.

    Lets keep communicating and updating each other. If anything seems to be helping me I will always tell you and you can try it out for yourself. I have found one person who suffered with this for 5 years then one day it disappeared just like the way it had started so lets not loose hope yet.

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