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

Digestive health
1

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.

2

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.

3

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?

4

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.

5

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.

6

Hi Mandi

It certainly sounds like you’re having a rough time with it as well.

As you can imagine, many of the things you talk about I have already tried and/or am doing. I’m a great believer in ‘research and empower’, always looking for information and knowledge and willing to try almost anything. I find that not all the things that apply to some people are relevant for everyone and I also suspect that many people have this as a symptom of something else that has not yet been diagnosed. It’s cited as a symptom of many things, as you obviously know – from adrenal glands under-functioning, to thyroid problems, menopause, liver problems and many others. It’s also significant that drugs seem to work for some people but not many and I’m constantly scratching my head when I read forums and people are talking about managing it ok, being on PPIs for years but obviously still not well. Some of the things that you say are triggers for you don’t have any effect on me. It’s interesting that you mention spicy food because if I eat curry or chilli I do feel better. Certainly they aid breathing and I have never noticed a worsening of symptoms that I could attribute to eating those things, yet on every information page/site you look at, they are no-nos.

I am on strict instructions from my dentist to stop brushing my teeth so frequently but to rinse the acid from my mouth with water only through the day and brush only twice a day. I also have to use repair and protect toothpaste as a cream, applied to my teeth and gums morning and night

I also understand what you mean about stress and unhappiness. I’ve had a very difficult couple of years but have no way of knowing if that’s contributed as the reflux began a year ago.

Rest is probably an issue for me. I don’t sleep well. If I do manage to sleep early for a change, I’ll wake up in the middle of the night. But I think the lack of sleep & reflux are self-perpetuating problems and a chicken/egg situation.

I’m curious that you say you benefit from not eating after 6pm yet during the day you can’t have an empty stomach. Why do you think that is? I have tried alternate day fasting (well, 2 days out of 5) and am giving it another go now. Sometimes I find it causes bad reflux but today, for example, I haven’t eaten since 10.30am and that was just 2 peaches. The reflux has been less severe today and I drank milk last night, too. However, out of desperation I started taking Ranitidine (Zantac) two days ago so it’s possible that it might be having some effect. I’m taking at a dosage a doctor would prescribe and it may be of some benefit. It’s certainly not having the negative effect that Omeprazole did. PPIs are supposed to be the bees knees in drug treatment for this but I decided it was worth trying the Ranitidine. At least when I return to the GP I can ensure I don’t waste time being prescribed a long course of something I’ve already tried.

I’m trying the alkaline water, too. If nothing else, the science about the pepsin seems plausible so if it stops the pepsin causing any more tissue damage and maybe protects my mouth and teeth as well, it’s worth a try.

You sound like you’ve had some very low moments and I really do feel for you. As you say, let’s keep in touch here. I am about to try something called D-limonene as well. Probably more expense with no outcome but if I don’t try I won’t know.

7

Re fasting - I meant 2 days out 7, not 2 out of 5 - not as full on as the actual alternate day fasting. It's not a weight loss diet but weight loss seems to be a benefit for many people. I'm not very overweight but dropping a few pounds can't hurt. I've stopped all exercise since this began because it makes it worse (as you know from problems simply picking your son up) and some days I feel so ill I can't even walk the dog so I have put a bit of weight on.

8

Hi Alex good to see an update from you I have just been to the dentist and my teeth are still fine. You are right about the foods just being trial and error. There is no one solution and sometimes what works for another person may not work. I would appreciate any solutions that you find so that I can try them out to see if they will work. I am still patient with medical science and everything they are trying out.

You asked a question about the night time empty stomach. The symptoms for an empty stomach are the same for both night and day but at night I don't feel it because I will be asleep. If I have disturbed sleep and I wake up its usually just the same. The difference is if my stomach is empty the re-flux is not so bad when I lie down so I don't wake up in the night coughing with a tickle in my throat I wake up in the morning with a bitter taste and bit of congestion which I clean out whilst brushing my teeth and get on. When I used to sleep with a fuller stomach coughing an spluttering woke me up and in the morning I had so much mucus stuck in my throat I would need an hour to clear it out.

Its nearly 3 years now since this problem started and now I am managing to get some normal hours in between. The strict eating regime had enabled me to loose a stone even though that was not the intention I think it is helping to make things slightly better.

Ranitidine for me only worked for two weeks and then after that it was ineffective.

JPT my doctor did not scare me he just told me that he had no information on that in his medical journals and I should ask the specialist when I see him if he knows anything about it. As personal advice he said that whatever I choose to do I must always let him know and we discuss it because some things may interfere with prescribed treatments and if there are any side effect he would not be able to detect them in a treatment which is not in medical journals

9

I read this with interest as my grandson 2.5yrs suffers from silent aspiration. He is on

Losec once daily but the biggest thing with him is that we do not let him drink until

20minutes after he has eaten because as he enhales small amounts of liquids go back into his lungs.. He does not have milk because of the reflux action sending the milk in dribs

and drabs into his lungs. His appetite is VERY good and he is very active.

I am not sure if this will help with your condition but it is what we do and seems to be very

successful.

10

Alex,

I have been suffering from reflux for many years. It improved after I got treated for the hechilobacter infection. However lately I needed to take nexiun as the reflux come back. I got very sick with my lungs last week. I am still sick. I had a CT my lungs have been affected by the silent aspiration. I was lucky enough To be seen by a respiratory especialist today. He diagnosed the reflux was due to loose muscles in the stomach. Esophagus and the hiatus hernia which is only mild. He said is the menopause. Lack of hormones. The stomach is distended. I am having high amounts of different anti acids today. The only solution to prevent further silent aspiration is surgery. Other wise my lung will get more damage. Ill keep you post about the outcome.

11

Hi Folks.

I came across this newspaper article which has surprised me. If this is a cure to this problem why has the NHS not taken this on board. Cost probably.

I have also done some research and found some Private Hospitals that do the operation for around £9000.

Anyway take a look: http://www.dailymail.co.uk/health/article-1382934/Acid-reflux-cure-My-heartburn-cured-magnetic-bracelet-stomach.html

12

I don't know if any of you are still on here, but I've been reading these and it sounds like I've been dealing with some of the same problems that you guys have. I've been dealing with what my doctor thinks is acid reflux, but I've never had heartburn, but have so much mucus in the back of my throat that I feel like I could cough it all out, which by the way I can't get rid of. I've been dealing with this for three years now and my doctor has finally prescribed me Omeprazole. It hasn't been working though and I had lost hope for finding out anything until I last week figured out that dairy has made the acid much worse. The weird part is that just by taking one bite of ice cream I completely lose my voice or squeak out words. I just recently got over a two month period of not being able to talk.

I was sent to the ENT but the doctor there didn't find anything wrong with my vocal cords, but did say that they were red. I don't know if he just thought I was faking, which might have something to do with me being fourteen.

Do any 0f you think that this could be LPR?

13

Hi Everyone,

I was recently diagnosed with LPR. For months I had a constant cough, the feeling of post nasal drip, coughing a lot when I woke up and after I ate, constant throat clearing. Then one day I had trouble swallowing and felt a lump sensation in my throat and that’s when I went to an ENT and got diagnosed. He used a camera and determined that my vocal cords were red and swollen. I have started taking omeprazole in the morning and zantac at night. However after researching online it does not seem to help a lot of people, so i have decided on using my own regime to cure this ailment, along with the medication. I just went to the vitamin store and got marshmallow root, slippery elm, gentian root, aloe vera juice, and DGL licorice. This are all recommended for LPR. I am hope that the gentian root will tone the sphincter muscle which it claims to do and where the problem seems to begin. I also did some more research and am going to get gaviscon which creates a barrier raft in the stomach so the acid does not seep out. And after reading this page I am immediately going to try the alkaline water, they sell it in walgreens with an 8.8 ph. I will keep everyone posted and let you know if any of these treatments work. I also purchased a wedge pillow to sleep with.

14

Thanks JPT,

This is helpful information that I can use to get better and make sure that none of that happens. With this information I'm sure that all of this will go way faster than it would have to just figure it out on my own. I will bring this up to my doctor to see what he can do. :D

15

JPT I sent you a direct message hope you get it I need some of your notes

16

JPT - what do you think about the UK Gaviscon? Have you tried this?

17

Hi Jamie

Gaviscon Advance forms an alginate raft on top of food contents and in theory sieves out Pepsin and stops stomach content rising out of the stmach.

I have used it a lot and find it only partially effective. It is also quite expensive.

Alkaline water above pH 8.0pH kills pepsin and acid and is cheap.

Best Regards JPT

18

Dear All,

I am new to the forum and I have read all of the posts above. Thus, I clearly see that you have been here on the forum for some time already and this gives me a hope and anticipation that you must be quite experienced in this subject.

I would like to tell my story briefly and will be happy to listen to your comments then.

I was diagnosed with a gastritis 2 years ago and back then I went under a strict diet and PPI medications. After 6-7 months I was feeling much better and the symptoms disappeared.

It was until this May, I have not had any problems with my stomach until I got a cold 2 times in May. This is when all the nightmare started.

After recovering from cold, I realised that a cheeky feeling stayed in my throat. It was like a soar throat and coughhing after the meals.

I have first checked this with my brother who is a surgeon, he checked my throat and told that I had a thick post nasal drip which seemed like sinisutis. He prescribed me 2 weeks of antibiotics and sinus rinse. Having done that, nothing was changed, so I went to an ENT, she checked my throat and nose and stated that I had sinusitis. She also prescribed me another type of antibiotics and sinus rinse for 2 weeks. After that the symptoms did not vanish either. I still had post nasal drip, caughing after the meals and stick mucus in my throat which stuck on my throat and affected my voice and caused caughing.

Nevertheless, I went to another ENT who I have found through a deep research. He checked my throat, sinus and the vocal cords with endoscopic camera and stated that I have sypmtoms of LPR. In fact I had researched about LPR before going to him because ever since I started to have these sypmtoms I was searching on the internet anyway. Also considering that I had gastritis 2 years ago, I always had in mind that something related to my stomach could be causing these symptoms.

Anyways, he prescribed me Nexium (twice a day), nasal sprey, sinus rinse and Gaviscon syrup after meals and before going to bed, for a month of threatment, then I will see him again.

Today is my sixth day and my soar throat already improved. Almost no soar throat. However same amount of mucus in my throat especially after meals, phlegm caughing but this phlegm is really difficult to spit out as it gets stuck to my throat and affects my voice. This happens especially after eating.

However, I have never felt a heartburn or any other symptoms of GERD people describe here. In fact I feel much better when I am laying down or sleeping. Symptoms start with eating mostly.

I care about my diet, less carb, dairy and meat., more vegs. and water. I also read a book about alkalizing diet. I also read about J. Kaufman's studies. However I so far realise that the type of food does not affect my symptoms as adversely as they say.

I would like to know if you have already recovered or still fighting with this disease, if so what self-made cures and technics you have found?

I look forward to hearing from you

all the best

Greetings from Istanbul-Turkey

19

Of course you can recover. Many do, but typically things get better, and then care is needed to continue in good health. These questions and so many others - and my own experience with LPR led me to write my new ebook about LPR. It is a comprehensive explanation of all aspects of LPR based on a thorough review of the medical literature. As research advances I blog about new info at allaboutlpr.tumblr.com. Best of luck.

20

Dear Mcson,

I have had a lot of what you have been saying done to me and have changed my diet which has been helping a lot. I loved dairy and have gone through what it seems like you have been. I stopped eating dairy for about three months now and it has helped an incredible amount with all of the phlegm in my throat and a bunch of coughing I might not be the best to answer your post, but people here have helped me too. Maybe you could try messing with your diet or try some medications stated from the earlier posts.

I hope you have good luck with your problems. Hope I can help.