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
angieob tcb9
Edited
Hi
wow, I'm so glad I found this forum. This type of disease/condition is very isolating, unless you've experienced it, no-one can imagine what its like.
I started with a sore throat March 2020 which lasted a good two weeks. After that my throat felt as if a hand was constantly over it. I seem to have always had a postnasal drip and constant throat clearing, but for at least 3 -4 years. I saw my GP in May, strange appt, we were both masked and visored. He sent me for a thyroid scan, again an odd experience due to covid restrictions. Results from bloods and scan were both negative. I'd been diagnosed with Hiatus Hernia in Nov 2018 and was taking Omeprazole when symptoms got too bad, so I continued taking those, on and off for the next 8- 9 months, I didn't do much more about it until last month. I'd been gradually getting worse, my symptoms were becoming more varied and my throat was constantly sore. I'd done a lot of internet searches for some of my symptoms and blimey; when I came across LPR it was describing me to a 'T' Two weeks ago I saw the Dr again, he sent me for a nasendoscopy proceedure and an MRI scan. I'm currently waiting for the results. I seem to have one good day and then three or four bad days. I've not given up alcohol, I did 'dry January' and it didnt make any difference. Ive since stopped eating tomatoes as they definitely affect me, as does fizzy drinks(tonic water) and citrus. I only drink 2 cups of coffee per day anyway but I've cut that down to 1. I'll look at the low acid diet, I need to sort this as its really getting me down. So far I sleep OK, my only respite from it all is sleep. I'll update with my results when I get them.
chrisRd angieob
Posted
Have you looked into Irritable Larynx Syndrome (or Laryngeal Sensory Neuropathy)? The symptoms are very similar to LPR. It sounds like you've had a sensitive throat for a long time, and so have I. People who suffer from LPR for years despite lifestyle changes, etc. all describe neurological symptoms, so it seems addressing them would be the next logical step. The only people on here who have fixed long-term LPR symptoms were prescribed antidepressants for neuropathic pain. I just made an appointment to try that because I've been dealing with a sore throat for almost 3 years and I no longer believe it's from LPR.
isabel64484 tcb9
Edited
💜
carolyn44266 tcb9
Posted
LPR is a complicated disease. My story began this year when I had continuous sinus infections. After seeing primary care x 2 for sinus, I went to see an ENT doctor. I had already taken one round of antibiotics, and ENT doc prescribed a heavy round of steroids and another antibiotic. Said I had LPR, tried me on Pepcid which I had a bad reaction to. Then Cimetidine which cut my appetite in half. Primary care gave me another antibiotic for a different issue.
All these antibiotics caused loss of appetite which resulted in a severe loss of weight and gastric distress so was put on Protonix 40 mg. Due to + 25 pounds weight loss, was referred to GI to have an endoscopy done which showed erosive esophagitis and close to an ulcer. ( This has all happened over a 4 month period)
My life feels like it has been turned upside down. I have the increased mucus production, and post nasal drip, and lump in throat sensation. I also get short of breath . It terrifies me that once the mucus starts , it will not stop.
Everybody's experience is unique and I totally agree what may work for one person will not for another person. Many people try different supplements, or low acid diet. Because of other health issues I have, I am unable to experiment with different supplemental capsules due to drug interactions. Also, because my appetite had decreased so dramatically, I am terrified to even try foods out again to see what I can and cannot eat. ENT doc gave me typical GERD diet to avoid spicy foods , etc......I still don't have the appetite to eat . And it frustrates me terribly that I cannot enjoy a meal anymore.
I bought a low acid cookbook by a well know NY otolaryngologist and the food choices did not offer many things that I would eat. and not designed for an average consumer. And I feel like I get conflicting information on low acid choices by other sufferers. For example, one person says ok to eat natural peanut butter, another one no. I am afraid to try food choices that will set off the round of symptoms.
My anxiety is at an all time high and I wish I could enjoy life again. And I totally empathize with other people who are struggling with this disease.
julie38951 tcb9
Posted
Hi all
I'm don't feel so alone now I've read some of your posts re LPR.
my story begins back in November 2019 after having a nasty cold virus with a violent cough and sore throat. my sore throat never healed and some times my larynx was very painful. I have played flute and saxophone for over 20 years and have sadly had to give up as playing just aggravates my throat.
January 2020 my GP referred me to ENT. I was examined with a tiny microscope up my nose and into throat and told I had acid reflux. I was sent away with 40mg of omeprazole per day, gaviscon advanced and told to cut out coffee, tea, alcohol, chocolate, onions, garlic and citrus fruits, keep a diary and see you in 6 weeks when I can guarantee your symptoms will have gone. wow famous last words....I wish!!
Now 15 months on i'm still on a really bland acid free diet. my sleeping pattern is destroyed after so many sleepless nights. I'm taking Mellatonin which helps me to relax, but never get a full night's sleep. I'm now on 30g of Lanzoprazole as omeprazole wasn't working even after taking 80mg for 3 months. I sleep almost upright, with my bed head on blocks and minimum of 3 pillows.
I live in the UK and paid privately in August 2020 for an endoscopy which revealed a small Hiatus Hernia, gastris and stomach polyps. I was told all ok and hernia is manageable, so discharged.
Although my throat has improved over time I'm still uncomfortable at night with a sore throat after 4 hours in bed. my mouth is very dry and foul taste. when it's at its worst I get what I used to think was allergy symptoms I.e. post nasal drip, cough, sneezing, earache, mucus and hoarse throat.
My GP has basically told me to get on with it. he has no magic cure. I'm not sure I can manage like this for the rest of my life. it plays havoc with your social life. I'm 66.
can anyone give me any more advise. Has anyone had surgery? If so, would you recommend it.
Best wishes and God bless x
mike77906 julie38951
Posted
Hi Julie. Read my post above about PPIs and why the dont work for LPR. GPs know so little about this. I went to a specialist for manometry testing and they basically told me to stop taking them. It won't be easy as the effects of coming off them make your LPR worse for a while, but she was dead right..
mike77906 julie38951
Posted
Hi. It's a similar story for me. See my post about PPIs above. I was on the same drugs as you until I saw a specialist..
JonW41 tcb9
Edited
Hi,
I just wanted to thank you for taking the time to write your post/blog. I've had LPR, or at least what I've been told is LPR, for around 18 months. If i'm honest, most of that time in denial, and avoiding making the changes I know might help. Reading your post really resinated with me though, as my symptoms are similar and it feels like youve been through a similar thought process.
I made up my mind at the weekend that i need to take things more seriously from now on. The first thing i did today was to look for a forum with other people suffering from LPR, hence seeing your post and a number of others, all of which have been really helpful.
I now need to make the changes that I keep promising myself - eat the right things, stop smoking, etc. I cut out chocolate and caffeine a month ago, but have not seen any improvement. i guess i was hoping those small changes would make a difference somehow, but they were obviously not enough and i know i was kidding myself.
Ah well, the hard work starts here and its down to me, but thanks again for your story as its given me more drive to succeed and to keep checking in on here to see everyone's progress.
All the best.
zoeb27 JonW41
Edited
Hi. I've just joined this forum and found it to be so helpful too. I believe I have had LPR for just over a year and made some changes a couple of months ago to my diet initially. I cut out sugar, fried food, all citrus fruits (only bananas, mango), reduced my tea intake, changed to almond milk. I did however carry on drinking my favourite white wine, cider, gin and tonic at the weekends. I didn't noticed much difference in my throat soreness/hoarseness/slight out of breath feeling but it did help with the globus sensation, bloating and mild heartburn. I then decided only 4 weeks ago to totally cut out wine,cider, tonic water and just switched to vodka with soda water and cucumber. I have to say it really helped with my throat soreness/hoarseness. I had a couple of glasses of wine 2 nights ago and woke up with the same hoarseness, so I definitely feel that for me the high ph levels of wine etc really affect my throat. Like many people have mentioned, its finding your particular triggers and cutting them out. Its a bit of a minefield to start with but I found that a food diary helped me pinpoint my triggers. Good luck
amber20884 tcb9
Edited
Hi there, I just found this website and I am pretty sure I have LPR.
I have been having problems for about a year and it is getting worse.
I know I have acid reflux already and am on Nexium, and I do not eat spicy
food etc.
The Doctor told me to take aspirin everyday, and it really messed up my stomach :0(
I went off of it now, but my voice is hoarse and coughing a lot.
I am getting a endoscope this coming Friday, and so glad I am getting checked out.
I am going to order this diet book to help me out.
Thanks for posting.
gina53089 tcb9
Posted
Thanks for writing this. I was diagnosed in the beginning of 2020 by an ENT doctor. He gave me meds, didn't tell me much about LPR. The meds made me feel better after about 4 months. It came back with a vengeance about 9 months later. I have this now since March, red larynx and sore throat with ear pain on right side. Throat clearing and post nasal drip symptoms. I will be changing my diet again and hope that it will clear up soon. I am happy to not feel alone, but sorry for everyone else who is suffering. if anyone has suggestions, I could use the help!
mike77906 tcb9
Posted
My LPR started about 3 years ago. I've done all the usual things: Acid Watchers Book, adjusted diet, weight loss etc, but I'm still stuck with it. I recently had the tests to see if surgery was the right way to go, but after having a discussion with the surgeon today, they recommended carrying on as I am as the last camera down the throat showed no damage and the downsides of the op at the moment outweigh the upsides. That means I have to live with it. In case it helps anyone, here's what I've learned so far:
cheryll1968 tcb9
Posted
My GP was misleading me the last two things I had wrong so I took this matter into my own hands, I get my scope tomorrow, up until now I have never heard of LPR and was told very confidently I have GERD but the more I read (the day before my scope can you believe this?) I am certain without a doubt this is what I have. I do drink a few drinks a day, and I do enjoy my morning coffee followed by tea all day, and I do not eat right, but I don't eat so so wrong.
I guess if this is what it is and this is how you have to cure it, I will have to take steps, heck, I may lose a few stubborn pounds (U.S.) but it sure sounds vexing to give up all the 'fun stuff'. *Sigh
barbara75884 tcb9
Posted
I have horrible ear pain with this condition, in addition to hoarseness, sore throat, sinus problems. From what I've been studying, my problem is not enough stomach acid. However, you cannot begin supplementing with HCL until you heal the esophagus and stomach lining. I also have gastritis & hiatal hernia. I'm attempting to use the Acid Watchers Diet with my own modifications and taking slippery elm, marshmallow, DGL licorice, Zinc carnosine & glutamine before meals to heal the linings. Had no success with the acid reducing drugs; they have such serious side effects & would rather heal than use a band-aid approach. This disease is so frustrating & depressing. ENG's and gastro doctors sometimes don't have answers so we have to be our own advocates with trial and error. Thank goodness for these sites enabling us to obtain help from other sufferers.
JammyCox tcb9
Edited
I'm new to LPR, but suspect ive had it a few years. I noticed it first about a year ago in Darwin, the day after a couple of Guinness, jug of Sangria and a spicy Thai. I work in Sales and talk for long periods, and i noticed mid meeting that my voice just gave out... the audience were sympathetic and after a cuppa tea and a change of pitch i made it thru. It was then the holiday season in Oz and things calmed down, but after returning to work i found my voice strength was reduced and sometimes at night i could swear i was weasing a little? Things came to a head a couple of months ago, after a really stressful period at work and around 15 hours of presenting in 3 days. My throat was shot and it was painful. working in I.T i sadly enlisted google as my source of knowledge... Scared the s**t out of me. So off to the doctors i went, telling him my diagnosis that ranged from Barretts, Throat Cancer to LPR. The back of my throat looked like a lobster and he thought i had a throat infection. The usual game of AntiBiotic Smarties ensued and i was back at his door in less than a week. So off to the ENT and an endoscopy, which confirmed i have LPR. I'm 49, but suspect ive had this for 10 years. ive always struggled with weird 'clear' mucus, generally at night or first thing in the morning and have had a few ear issues, along with questionable digestion, slow transit and bloating. I've always been a bit of a boozer, love curry and adore Coffee and Chocolate. I'm gutted really. But my ENT gave me a diet, Alkaline Water and told me to raise my bed. Im on week 7, no booze, coffee, chocolate or spicy stuff. TBH its made little difference, so suspect i'll be on PPI's soon. Ive also read that its a lack of Acid thats the problem? I'm not sure i can live the rest of my life without a drink... but sadly i think thats were im heading. Im in denial clearly... Im not sure i have the discipline to control every aspect of my diet, so like most of us i suspect im looking for the silver bullet that doesnt exist. I might explore the Diary or Gluten route, as Gluten does seem to mess me about a bit. Keep posting, its great to learn of others experience with this 'silent beast'.
pauline74074 JammyCox
Posted
Dont give up jammycox. Ive just looked in my fridge and have everything which is bad for lpr. I have read that people who do successfully change their diet do see positive changes. You are in Australia for heavens sake. I'm from the UK but stayed in Oz for a year. You have melon and mango by the barrel load and sunshine so salads should be a delight. I believe we can be addicted to food we are allergic to so that could be why you crave lpr guilty foods. My lpr has caused bad breath and there are times I have just wanted to stay at home and hide. I am currently looking for a wedge bed as it is supposed to stop acid creeping back from the stomache during the night. Good luck.