Living with LPR (or not so Silent Reflux)
Posted , 113 users are following.
Dear all
I have read with great interest many posts over the past couple of months with regards to LPR / Silent Reflux and I hope you don't mind me sharing my story. Even if nobody responds or reads this post at the very least, for me personally, writing this has been very therapeutic.
My story begins around early December 2017. It was actually my wife that pointed out to me that I was constantly clearing my throat. At first I thought it was just a sore throat and as such started taking the usual cough sweets, throat spray etc but it didn't seem to go away and indeed it started to get a bit worse. Constant clearing of my throat and also a strain like pain in my throat whenever I was talking. Eventually after Christmas I decided to go and see the GP who examined my throat etc. She said it looked a bit inflamed. She also did some blood tests and asked me to come back in a week for the results. At this stage she said it sounds like reflux but let's wait for the results.
I went back to see here a week later and the blood test was fine apart from the liver result which was higher than normal. She then asked about my drinking and I said that I drank a couple of glasses of red wine in the evening after work. That confirmed it for her. She said, in her opinion, it was acid reflux and the drinking was partly to blame. She gave me some omeprazole, 20g, to be taken 1 per day, and told me to cut back on the alcohol. I actually gave up completely and to begin with the symptoms seemed to disappear. I hadn't changed my diet at all at this stage. I finished the 28 day course of omeprazole and carried on as before minus alcohol.
This brings me up to early April when I decided to go back to see the GP. My throat was really painful when I spoke and the throat clearing was back with a vengeance. It was really affecting my work as i need to speak quite a bit to clients. I saw a different GP this time and he also said it was reflux but let's do a stool test just to make sure there is no infection in the stomach. That came back clear. He said no need to see a specialist. Take some more omeprazole and change your diet. It was at this stage, frustrated with the advice and guidance I was getting from my GP, I decided to do my own research. I did what I'm sure all of you have done and googled the symptoms. Whoa!! Pretty scary what you find however I came across LPR and I thought that sounded exactly what I had. I read everything I could find on LPR and the general consensus seemed to be that a change in diet was absolutely essential. I found a good book online and decided to follow the eating plan. This was a massive change for me. It seemed as though just about everything I liked eating and drinking had to go. I started this diet on the 8th May 2018 and have now been on it for just over a month. The other thing that I read was that the most effective way to treat LPR was to suppress the acid as well as changing the diet therefore I have combined this with taking omeprazole for the last month. For sure there have been improvements. The throat clearing has almost gone and the pain when I speak, although still there, is not as bad and not there all the time. I feel as though it's moving in the right direction albeit very slowly. I do have some discomfort in my left ear. In fact the pain in my throat is on the left had side as well. I went back to see my GP last week as planned and she seemed pleased with progress. She did say it can take a while for the esophagus to heal. How long she didn't say. She has also suggested I see an ENT specialist just to be absolutely sure. That I am doing this week.
So here is what I have learnt over the last 6 months, in no particular order:-
- GP's are not experts on this. They seem to be quite happy to prescribe some PPI's and then send you on your way.
- There is so much conflicting information on the web. Eat this, don't eat this or eat that, no don't eat that. It was driving me crazy to an extent where I have basically stuck to some core foods over the past few weeks.
- I have been eating a lot healthier. Plenty of fruit (non acidic of course), veg, lean meat and only drinking water. That's probably been the hardest part. No tea or coffee. I've also lost weight through a combination of no alcohol over last few months and the low acid diet over last month.
- These forums are excellent. Hearing from others with similar symptoms just gives you some comfort that you are not alone. I know everyone is busy but it would be great if people posted updates more often. One thing I noticed when reading one of the forum posts was that there was an initial steady stream of 'conversation' which then seemed to suddenly stop.
- Everyone is different. What works for one person might not necessarily work for someone else. For example PPI's can work for some people and for others it can make the symptoms worse. Taking certain foods works for some and not for others.
- There definitely seems to be varying levels of suffering with LPR. Reading some of the stories on the forums makes me think my symptoms, although annoying and depressing for me, are not nearly as bad as other people. My heart goes out to everyone suffering with this.
- I haven't read anywhere online where someone has said they are completely cured. Hopefully there is and I've just missed it.
- I couldn't find anything online to advise on how long the esophagus takes to heal.
- I tried Gaviscon Advance and it didn't work for me.
- My symptoms seemed to get a bit worse whenever I had some wholemeal bread or even wholemeal pasta. My GP now wants to do another blood test to rule out wheat intolerance.
- This is a global problem. I live in the UK however have read many, many posts from fellow sufferers in the US and beyond.
- LPR is horrible and I want all of us to be rid of this awful affliction NOW!!
I'm sure there are many more learnings and I could probably ramble on here all day however I better do some work. I am going to keep this post / blog whatever you want to call it updated as much as I can. If it helps even 1 person then it will be worth it.
Would be great to hear from other people. Please feel free to post or ask any questions. If I can help in any way I am happy to do so.
Best wishes to all
30 likes, 98 replies
william23409 tcb9
Posted
Hi, thank you for this post, have suffered from this affliction for many years but finally this morning decided that LPR/silent Gerd is what i have.
Hopefully i can now deal with it by omitting some foods and trying various antacids, i cant take PPIs.
shs96512 tcb9
Posted
Hi tcb9
So relieved that I found this forum.
Just been diagnosed with LPR/silent reflux a week ago and am trying to work out what foods I can eat and what I can't as so much conflicting advice on internet and in books.
Was advised to adjust my diet. I have severe pain in middle of chest and severe sore throat which is continuing but was not prescribed anything, I'm not sure why because have read how effective Omeprazole is. I was a bit overcome when the Consultant told me and couldn't think straight so I didn't ask all the questions I should have. He just told me to change my diet and sent a letter referring me back to my GP.
I'm feeling very worried and stressed by all of this. Been even more miserable after reading it can be chronic and lead to other things.
How are you doing now? I hope you are well.
pauline74074 tcb9
Posted
Not sure if this is still live. I hope so. I had the camera down my throat and was diagnosed with LPR. I was prescribed proton pump inhibitors but they messed up my stomach and digestion so stopped taking them. I have a problem with really bad breath which is making my life a misery. I have decided to radically change my diet. I'm not overweight or smoke but do eat the guilty foods. I am looking at bed wedges and wondered if anyone had any recommendations or advice.
tcb9
Posted
Hi folks
its been over 3 years since i first posted my story. i have to say that through a mix of dietary changes, short term ppi use and nasal sprays things have improved quite significantly for me. I still have the odd day where I can feel post nasal drip but nowhere near as bad as it used to be. I'm not sure it will ever go away completely but I wanted to at least offer up some hope to those that are just now being diagnosed and who feel there is no end in sight.
My biggest issue has been the lack of support / knowledge from the medical profession. I actually had to tell my GP what the diagnosis was and the Consultant was so unfriendly and unhelpful it left me feeling really low and fairly depressed.
Be strong, be well, be positive and keep the faith
best wishes
shs96512 tcb9
Posted
Hi tcb9,
Thank you for your reply and giving us an update, I'm so glad that things have improved for you and you sound so encouraging, it has given me hope and made me feel more positive.
Over the last two weeks I have changed my diet and whilst I have noticed a slight change, I can still feel a sore throat from all the acid reflux there, a lump in my throat, difficulty swallowing, post nasal drip, etc. I guess it will take a lot longer to feel any significant difference or improvement.
I agree, the doctors and ENT Consultant have not been very empathetic and with all the worry, I would have liked to have been kept under review rather than just discharged from the ENT Consultant after one appointment. I also felt low and depressed after simply being told to "change my diet and lifestyle" and no support in how to go about doing this. I had to do all the research on the internet (the non-UK sites led me to some very depressing reading in particular) and I've made a core list of foods to avoid, as well as keeping a food journal. In addition, people don't seem to understand and think LPR is just "some heartburn" when it is actually much more than this. I'm not looking forward to family get-togethers/barbeques when everyone will be eating spicy food and I'll be eating my plain, bland food! It's already hard making food for my family that I can't eat, eg. fajitas, chicken curries, sausages and chips, etc! I love chocolate and the box that my husband brought me for Valentine's Day is still sitting there unopened!
If you do return to this forum, I just have a few questions - how long were you on the PPI's for before you stopped and over the last three years, have you been able to return to eating any of the "foods to avoid" eg spicy food, etc., or have you remained on the bland LPR diet throughout? If you have been able to return to eating these foods, even if only occasionally, how do you manage it?
Thank you for your time and positivity.
God Bless and take care.
tcb9
Edited
Hi there
not a problem. happy to answer any questions. it sounds as though you have very similar symptoms to me.
To be honest it took me quite a while to start eating 'normally' again. I would say for the first 2 years I was following a strict acid free diet.
I gradually started introducing foods that I liked. As an example I hadn't been eating tuna and mayo but I seem to be ok with that now. I still don't eat really spicy foods or spicy hot food like tabasco sauce or hot indians but I seem to be ok with most other food. I've just eaten a chicken tikka and I'm ok with that. I've also been ok with having the odd gin and tonic and beer. One thing I don't seem to be ok with is tomato based foods. I've had to refrain from eating those.
As I said I'm not 100% but I would say probably 95% ok.
I only stayed on omeprazole for about 3 months and then came off. I do believe they helped but I didn't want to stay on them longer term. That doesn't mean you shouldn't. It really depends on how they are working for you.
I'm not a big facebook user but there are a couple of good forums on there which are really helpful.
I'm very happy to answer any questions you may have. It's important to know that you have some support. I found a lot of friends and family were quite dismissive but I think that was ignorance.
Let me know if I can answer any other questions
Take care
shs96512 tcb9
Posted
Hi Tom,
Thank you so much for taking the time to reply, I really appreciate it.
You must have had a lot of self-control to manage on the strict acid free diet for those 2 years, but I'm glad you have been able to re-introduce some of the foods you like, that must seem like such a treat now! I don't know how you managed to refrain yourself at family functions, eating out, etc. - must have been hard but you did it!
I finally managed to speak with an ENT consultant yesterday after leaving a message a few weeks back, and expressed my concern that nothing seems to have changed over the last two weeks. I was prescribed Omeprazole once daily - I took the first one this morning - and also advised to take Gaviscon after each meal, then to report back after about 2 months. I'm careful to keep a more detailed food journal now too. She did say however, that improvements will take longer than two weeks to come about, so to be patient!
I am eating mainly vegetables and fruit (nothing citrus), some chicken for the protein, nothing spicy or tomato based such as bolognese or pizza. It's hard when the kids get takeaway pizza whilst I munch on my sad little jacket potato! I also drink almond milk rather then semi-skimmed.
I can still feel the acid just sitting there at the back of my throat causing the sore throat, and that worries me, together with the constant swallowing, burping, nasal drip and ear pain, but I'm hoping the longer I follow this bland diet, together with the meds, the better I'll feel. Like you, I don't want to be taking the Omeprazole for too long a period, but will see how it goes - of course, I understand that each person is different.
I just have a couple more questions:
Did/do you take any gut friendly bacteria (eg 3 billion/10 billion) tablets or probiotics such as yoghurts to help ease your symptoms/improve your gut health? My tummy feels bloated and gassy, I don't know if you had that.
How about multi-vitamins or any other supplements?
Have you been able to find any alternatives to margarine/butter/cheese (fatty products) as toast/bread is so dry otherwise! Can't seem to find any fat-free alternatives! I don't know about jam as that's very sugary.
Did you have any more endoscopies after the LPR was diagnosed, if so did they show up the improvements that you feel?
I don't use FB much either but will have a look at LPR sites. I would never have considered this, so thanks for the suggestion.
Thank you also for giving me this opportunity to ask questions, it really helps and it's so encouraging that you feel you are 95% ok now. I am so happy for you as it seems your hard work and persistence is finally paying off - 3 years is a long time but you are managing it, and managing it well - well done Tom! You've given me hope that there is light at the end of this long tunnel.
Take care and God Bless.
Sherrie
shs96512 tcb9
Posted
Sorry Tom, a follow on from my post just now - I forgot to ask - I remember you said early on that you purchased an acid diet book - I think the Acid Watcher Diet or something similar. I read that it's targeted more towards the American market and there are several ingredients that you cannot purchase here in the UK. Did you find that? If so, did you just follow the recipes without whatever you could not obtain? I have not got any recipe books yet but am considering it as what I am having is very simple/basic, pretty much straight out of the fridge.
Many thanks.
Take care and God Bless.
Sherrie
shs96512 tcb9
Posted
My apologies Tom, a couple of further questions I just thought of - for the two years that you were strictly following the low acid diet (and maybe even now), did you eat little but often, as is advised? If so, every 2/3 hours would you say? Would you have snacks in-between meals to ensure you had something in your tummy to prevent acid build-up?
I'm finding this particularly difficult to do as usually go about 4 hours between meals. May have to set my watch on a timer to alert me so I don't go so long between meals, perhaps have snacks in-between.
Were there any signs for you that it was time to eat again, e.g. burping due to acid coming back up to the throat? Or sounds coming from tummy due to hunger or acid build-up?
Sorry about all these questions, it really helps to be able to talk to you about this.
Thank you!
Take care and God Bless.
Sherrie
tcb9 shs96512
Posted
Hi Sherrie
Apologies for the delay in answering your questions. I honestly tried every probiotic and supplement you could think of. I was so desperate for an improvement I would have done anything. Did they work? I'm not convinced. Cutting out acidic food and being really strict with the diet, in my opinion, is what gave my throat the chance to heal. I did lose quite a bit of weight during the first 6 months. I have put some of it back on again as I've reintroduced some food.
Regarding the alternative foods I did try soya butter but didn't like it therefore gave up on it. I was actually ok with cheese. The one food that seemed to trigger a reaction was tomatoes. A few months ago after eating tomatoes again on a regular basis I had a bit of a relapse. I stopped with the tomatoes and all was good.
You are correct about the US v the UK in terms of the recipes however I found that most of the time I could get pretty close so wasn't a particularly big deal. Definitely worth getting a couple of recipe books. The bigger challenge for me was eating out with friends but more so colleagues at work. Often when attending events etc for work I would need to plan ahead and take my own food.
I did try to eat smaller but more frequent meals but tried to refrain from eating beyond 7pm.
It's now July 2022 and it must be almost 4 years since my post. I do feel as though I've come a long way and have seen huge improvements. I still don't eat very spicy food, tabasco sauce etc but I can have a beer or a gin and tonic and I seem ok. For the most part I'm living a normal life. Clearly everyone is different and as such we are all impacted differently. Some people suffer more seriously than others and perhaps I have been one of the 'lucky' ones.
I appreciate it's easy for me to say this but do try and stay positive
keep the faith
Tom
nyaben tcb9
Posted
Tom, I just started having occasional voice issues in Nov - Dec 2022. Have only lately deduced that I probably have LPR. Similar to your experience I have the occasional pain on the left side of my throat (below Adam's apple) when talking. I have seen an ENT who says my throat looks okay ("no lumps, bumps", etc. - his words). I have only this week started trying to eat low acid. I am encouraged by your posts regarding your progress. I feel that my symptoms are very similar to yours.
Praying I get some relief soon and I hope you stay well.
Rob
dbuis56 tcb9
Posted
i have a similar experience and have LPR for over 6 years with nothing really helping. definitely found pantaprozole to be not helping at all, often when I take it it just makes me belch a lot. i elevate my head with a wedge and pillow but that isnt apparently helping either.
The gastroenterologist I had was in my estimation very unmotivated, telling me in the follow up that something seems to be prying my LES. A good doc would do a workup to why a person has LPR
But this is Canada.
im totally frustrated, I lost 35 lbs and changed my diet but it still haunts me and I have a sore throat especially on the left side as you stated, curiously.
Drug companies work on masking symptoms but never the root causes.
D
janew366 tcb9
Edited
First time here and thanks tcb9 above for posting her experience with LPR/Silent Reflex. As an intro, I've had breathing issues for about 4 years and have seen many, many doctors. At first , it was thought that I had asthma so I started alergy shots. Then it was a nodule on my lungs so I had a biopsy followed by a collapsed lung. Then, Vocal Chord Dysfunction. Then, GERD. And, throughout this time, I had many, many tests to rule out this and rule out that.
The current dx is GERD but I have no gastrointestinal symptoms. A month ago I was put on metronidazole. I was perplexed because I have no digestive symptoms. I probably take 2-3 Tums, at most, a year! The only symptom I have is breathing difficulty when leaning over, like to tie my shoes, or when starting a physical activity but in about 10 minutes, my breathing returns to normal. And..., I feel like I need to clear my throat frequently.
Four weeks ago, I started omeprazole. I noticed I was having many leg cramps which I didn't pick up as a possible side effect. Last week I had a horrific cramping in both legs (first time ever) in the early morning. I got out of bed, my legs flew outward and I now have a compressed T12 and have stopped the this med. I haven't been diagnosed with or treated for a magnesium deficiency but stopping this med and 4 days of eating bananas, I'm fine now.
Okay, so this is a lot of information and from what I'm understanding this is a not uncommon experience! I'm still learning...
I don't like my ENT doctor so am looking for a gastro doctor at this time. I noticed there's lots of books so plan to visit my library to look through the books they have.
All suggestions welcome!
paula2512 tcb9
Posted
I cant tell you how relieved I am to have read your post
You feel you're on your own with this condition.
I am on waiting list for a respiratory appointment.
I have now been on ppis for over six months.
Just being able to give it a name has lessoned my concern
Although I need to loose weight I'm extremely fit for my age , but I can barley run up the stairs without getting out of breath and then the cough starts.
I'm going to start changing my life style today.
I don't drink alcohol ( but was told to cut down on my drinking) I gave smoking up 30 years ago (I'm 61)
I had an ulcer in the past so I've put it down to that.
Now I realised I'm speaking to you when it should be my doctor , but we both know self diagnoses is now the norm, you have given me more positive answers in the time I took to read your post than I've had in over four years from my doctor
I live in hope now
mliber86 tcb9
Posted
Hi, it looks like it's been 4 years since you wrote this blog. Are you still suffering with LPR? I am really thinking that we need an advocacy group to help us since the gastro and otarylaryngology communities are really clueless on how to treat this illness.