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
j5698 tcb9
Edited
Hi i think i have lpr been suffering for the past 3 months which doesnt seem long but has been awful throat constantly needs clearing and always feel like theres a lump in my throat or im choking on mucus its awful makes me feel like i cant breathe been to a&e multiple times and my gp just say the same old stuff and with covid going on all the over the phone appointments dont really help been given omerprazole didnt really do much and antihistamines they also gave me an inhaler but nothing has really eased the symptoms they just seem to get worse and its causing me really bad anxiety keep having panic attacks when the symptoms get really bad and its making me just want to stay in all the time now out of worry .
luke54671 tcb9
Edited
Hi Everyone,
I have suffered from LPR before and am now. My previous symptoms were lump in throat 24/7 and burning in my throat. Now I just have mainly burning and mucus.
I will just add, that my previous bout in 2017 was my first ever experience of it and caused me severe anxiety, (I suffer severe health anxiety), anyway what actually happened is I tried everything for months to get my symptoms to disappear but eventually once my anxiety left me, my LPR did also and never reared its head until now when I am suffering another anxiety bout.
My first bout I am not sure if the LPR caused the anxiety or what is most likely I was anxious before, now though I can say with certainty that my anxiety preceded any symptoms. I will also say that my health anxiety is severe, I shut down as a person and believe I will die, my life falls apart.
In my specific case I truly believe my LPR is directly related and caused by/made worse by my anxiety. I don't know if this is the same for others but getting on top of anxiety should be one of the top priorities. In 2017 my symptoms totally disappeared once I became fulfilled in life and happy once again, which caused my anxiety to die. I could eat and drink everything again whenever I wanted up until a month or so ago, when it is now back with vengeance.
Just my 2 cents and experience,
Thanks,
Fearfull luke54671
Posted
Hi There
You are not alone I have severe health anxiety and have had for about 6 years (it is soo tiring).
I have been suffering with a sore throat for about 9 months and it is almost unbearable, not the pain as this is just a mild annoyance but the health anxiety.
I have had so many unnecessary procedures over the last 5 years all showing that I am fine except for a hiatus hernia ( A prime reason for the LPR) I have a scope again in a months time which has flared up the the anxiety. I have started my journey on a low acid diet and I am on 40mg Omeprazole hopefully this will help the healing.
The specialist has said that he does not recommend the scope as it points in the direction of Acid reflux (Due to weight, Hiatus hernia and symptoms) he has suggested lifestyle change and continuing the omeprazole as well as trying to get my anxiety under control as it also sounds like I suffer from Globus hystericus. However he will do the scope for my reassurance. (This may not be the best for health anxiety as you may know seeking reassurance is part of the horrible cycle) I am overweight so this is a needed life style change, I just suffer so much with the anxiety of it all! how do you cope? The throat sensation is constantly there and so is the anxiety. forums like this help as you can see that there is a lot of people in the same boat that have been through what I am going through.
konstantin35109 tcb9
Edited
Hi and thanks for all your comments....
My "adventure" began during lockdown, late March '20, with a sore throat and pain at my voice box after eating too much before bedtime. Of course, the 1st thing to consider was covid19 symptoms as I never had experienced this situation again. Until this moment i was able to consume every food I wanted, though I was never a smoker or a drinker. I was examined by a gastroenterologist because the sore throat followed by pain at the centre of my belly and my guts. He priscribed me omeprazole and suggest having a CT scan to check pancreas etc. Fortunately, the CT scan was ok and I was improved taking medication for 20 days and eating very conservative.
As I stopped the medication because I felt ok again (I shouldn't, I supposed to have it for at least one month), the sore throat returned one night while I was sleeping after starting eating again tomatoes. This envolved to a severe laryngitis incident for 4 days . I couldn't speak or swallow at all. Then an otolaryngologist examined me (not with a flexible endoscope though) and diagnosed inflammation at my throat and vocal box probably due to LPR. I started again medicine omeprazole and I saw improvement, I could speak again and stopped feeling a lump in my throat.
I had a gastroscopy July ’20 at a different doctor and I was diagnosed with septal hernia and loose gastroesophageal sphincter (type 3, ranging 1-5). That doctor suggests stopping taking omeprazole and prescribed me pantoprazole and domperidone.
Now, late August ’20 and already 1.5 month somedays I feel ok but others don’t (unease swallowing and voice box pain). The pasτ week I feel pain under my chin or the chin line like a lymph node got swelled and I feel pain at my left or right side of my neck. The pain is not constant, but it comes and goes…. Of course, I feel my throat burning after eating and my voice sometimes struggles to come out sometimes. I am starting to think the worst-case scenario because I have not had a nasal endoscopy yet. Has anyone experienced these symptoms? Especially lymph nodes that hurt or swell?
I must add that from March until now I am very stressed, because I am afraid of the corona virus. My dark thoughts are that I have undiagnosed cancer and got infected by corona and die eventually…
P. S: I am sorry for my poor English….it is not my native language obviously 😊
JonW41 konstantin35109
Posted
Hi,
I do hope your symptoms improved. I've only just joined on here and i know some posts are quite old so I'm not sure who is still on here.
I really struggle with my voice. It's not sore, but when i try to speak little or nothing comes out. I then have to clear my throat to be heard. I've had investigations and a camera down my nose and throat twice. The consultant is sure that i don't have anything like cancer, but like you, it did play on my mind for a while. I hope you managed to get checked out in the end.
I'm just now starting to change my diet so hopefully i'll see some improvements in time. I guess its a process of elimination really.
All the best.
eilS12 konstantin35109
Posted
READING YOUR POST IS LIKE I AM READING MY OWN STORY AND SYMPTOMS
I ONLY GOT DIAGNOSED WITH LPR RECENTLY BY MY DOCTOR WHO SAID THESE ARE CLASSIC SYMPOMS
I HAVE NOT YET HAD AN ENT AND HAD TO REQUEST MY REFFERAL
GOING TO WAIT A WHILE FOR IT . ID LOVE TO HEAR HOW YOU ATE DOING
HOPEFULLY YOURE FEELING BETTER AND HAVE FOUND GOOD COPING METHODS **
janet37689 konstantin35109
Posted
Hi All, I just joined today so am not sure if anyone is still on here reading.
I have had LPR for a little over 20 years and am experiencing many of the LPR symptoms as everyone else: mainly sore throat and pain, sores on roof of mouth, coughing at night, constantly clearing my throat, mucus and feeling the acid rolling up through my esophagus. I also experience the same symptoms as konstantin35109 in regards to having pain also that comes and goes under chin/chin line on my left side. I also thought I had a swollen lymph node. This just started a couple of weeks ago. I have had anxiety because of all this. For awhile I was feeling feverish every day but with no temperature. I googled this in and found it was due to an underlying condition or anxiety. I have had polyps removed twice in my esophagus, five years apart.It has been up in my throat for the past four years. I have been checked by an ENT 3 times, twice with a scope, as I am nervous about throat cancer.I don't drink or smoke but obviously have had too many acidic foods or something not agreeing with me. I got the Acid Watcher Diet book on Amazon and started a few weeks ago. Along with taking 20 mg of Omeprazole once a day it is slightly better.It's such a struggle for us and hope we all find some relief and that it will eventually go away.
lara40847 tcb9
Edited
Hi,
I've just come across this post, which resonated with me a great deal. I'm a 28 year old woman living in London and have been suffering with LPR for the past 6 months. After a period of very bad anxiety which triggered a week long bout of painful acid reflux, i was prescribed 30mg PPI.They helped for a while but then i started experiencing a number of throat symptoms - namely a sensation of there being a lump in my throat, post nasal drip, sore throat and ears and silent reflux. after numerous telephone appointments to my doctor (this all happened in the height of COVID) i was finally referred to a specialist ENT who confirmed LPR, looked in my throat and found mucosal inflammation, inflamed voice box and chronic granular inflammation - these are like small cysts on the back wall of my throat. My PPI dosage was upped to 80mg - 2 pills a day.
I am now being referred to a gastric specialist for further examination.
when i explain LPR to people, they dont seem to get how unbearable it can be.It totally impacts my life - i have taken recipe ideas from The Acid Watcher book and have cut out all dairy, caffeine, alcohol, and various other trigger foods
i take Gaviscon Advance which soothes my throat after meals and I have recently startee having dinner before 7pm.
slippery elm is a good natural relief from LPR symptoms , although not the easiest thing to drink!
i am now having CBT therapy to help me manage my response to this condition
For all of you LPR sufferers out there, I understand how hard it can be but it will go away in time.
Has anyone else discovered any good remedies?
sallyann2968 tcb9
Edited
Hello fellow UK LPR sufferer! I'm on the south coast - Southampton to be exact 😃
I've had GERD for at least 3-4+ years but, in the last year or so, the symptoms have shifted to most definitely to more typically LPR and it's gotten to the point where it's making my life totally miserable. From the moment I wake up to the point of falling asleep (it can also wake me in the night) I have post nasal drip (slightly helped by my Rinatec nasal spray), I am incessantly clearing my throat which now feels sore/raw and occasional voice hoarseness.
My GP is clueless and just keeps telling me to take my tablet daily (Lansoprazole 30mg each morning), not to get stressed and then the GERD will go away. I keep telling him, it's LPR and he just says it's all part of the same thing...it's not!
So I'm being proactive and throwing everything I can at finding some solutions for myself. I'm already vegetarian (have been for near on 10 years) and stopped drinking alcohol a while back but I have toyed with the fact that wholemeal bread (I eat 2-4 slices a day) could be irritating my throat, so once my current loaf has gone (I hate to waste food), I'm going to go try and avoid wheat and see what happens.
I'd love to hear from anyone with any tips to help reduce my throat clearing - I'm prepared to give anything a shot! Also, has anyone experienced an increase of mucus linked to taking propranolol?
rachel80937 tcb9
Posted
Hi
New here but stumbled across your post. I am awaiting a diagnosis but over the past 3 weeks suffered from reflux and chronic sore throat. I am on lansoprazole and gaviscon. I am experiencing pain in 1 side of my throat and pain to my ear. I feel so down as the pain has been bad. My doctor prescribed amoxicillin to rule out throat infection. These haven't worked. I have a scratchy throat and what feels like lumps at the back of my throat (these do seem to be smaller). My bloods have all come back clear and I'm waiting for a ENT appointment for a camera. Sat here now and burning in stomach and throat burning. How long can this last.? Why do we have ear pain??
Would be good to hear from anyone with updates?
joshuapryce1987 tcb9
Edited
oesophagus is bone surrounded by throat muscles, its important to be relaxed on how you deal with this important body function. Muscles heal over time, i would say in 3 months you should be healed. Its important to promote muscle healing. Its good to take alot of time to relax your body and let the muscles naturally heal.
christopher1974 tcb9
Posted
Hi,
Just read your post and very interesting. I first started getting these awful symptoms about 5 years ago. I went through various tests including endoscopy and the ENT doctor said yes you have the reflux. I told him I was a heavy drinker and he said without doubt that is what it is. I was on ppis etc and cut down and I felt so much better. Thing is about a year and a half ago I was drinking again each evening and my throat started to need clearing each day. Ive been back to doctors and now on 30mg once a day Lanzopromol. Seeing the ent this Thur and hopefully he will check my vocal folds. I am worried I may have polyps on the vocal folds but hopefully will all be ok. I am going to also try to kick the booze and see if I can get better again. Regards Chris
nicolanix tcb9
Edited
Thanks for your post.
I was diagnosed by phone consultation 10 days ago and put on esomeprazole 20mg a day.
I contacted the doctor as I'd had nausea at night and sometimes after breakfast for 3 weeks in January. I'd just started using oat milk so put it down to that and gave it up. However the nausea returned after 2 weeks despite avoiding the oat milk. The nausea went straight away once I started the tablets. I nearly stopped the tablets after a week as I felt terribly bloated and had a sour taste in my mouth but that has gone now.
However... I've actually been suffering nasal drip and throat clearing for a year. I'm asthmatic so assumed it came on as a result of being at home in lockdown. It did continue once I went back to work outside and I spoke to a doctor about catarrh who suggested doing a sputum test which I messed up as I couldn't bring enough up. The throat clearing comes and goes so I left it until I had my asthma review which was a few days after the doctor diagnosed silent reflux. Reading up on the condition, I realise its a classic symptom.
I've given up caffeine, alcohol, most fruits, garlic, onions etc and reduced dairy (hate margarine). The nasal drip is still there so I'm going to try giving up wheat next . I'm finding lunch options difficult to choose so I've ordered a cookbook. The good thing is I've lost a few pounds so I'm hoping that carries on and I soon find the trigger foods (and praying chocolate, tomatoes and dairy aren't included).
I did see a You Tube the other day which suggested drinking a swig of alkaline water before eating so I'll pick some up when I next shop. Anyone tried it? He also suggested coconut oil swilling or a teaspoon of bicarb in warm water.
mike77906 nicolanix
Posted
Tomatoes are probably the worst thing out there. They activate the Pepsin in your throat which is what makes so sore. Citrus etc does the same. Chocolate relaxes your sphincter so lets more acid up from your stomach, as does tea and coffee. LPR never really goes away,but can be managed so get used to not having those foods
teckapoo1 tcb9
Posted
I finally know what is wrong with my throat. Thank you so much for sharing your story.