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
Spring250 tcb9
Posted
hi feb, can i please ask your symptoms before you found relief from Amitriptyline . For instance did you have acid taste in your mouth or acid in your nose. Did you have mucus / throat clearing. I have these symptoms & most classic symptoms of LPR but the symptom that causes me the most distress is spasms in my throat, when it's happening all the way through the night its impossible to sleep. I've seen other people on forums find relief through Amitriptyline so I'm wondering if this would be a good thing for me to try x
emmac23 tcb9
Edited
I am 22 in the UK and have suffered from Acid reflux in an aggressive form over the last 4 years.
It has been hell but at times I can cope.
Sometimes there will be days when I want to rip my throat out or there can be days where I don't experience it at all (rarely).
I have had at least 5 endoscopy's and tubes from my nose to my stomach done and I have just about got it under control.
When I first knew about GERD, I was 18, so I had 1 year of having these symptoms but not knowing what it was and this left a lot of scarring in my esophagus.
I still have a lot of scarring but my new meds will probably leave time for it to patch up (I pray).
I just wanted to reply to this because I feel your pain and I guess it's nice to chat to people who also suffer from GP's not quite focusing as much as you'd like them to.
I often feel like a number rather than a person with my surgery.
Anyway, I can see this was posted a while back now and I hope you are getting better.
I'm also trying new diets.
Emma
theresa87319 tcb9
Posted
I love your post and it's helping motivate me to try a better diet long term. My whole life I've struggled to talk for very long without losing my voice. About 6 months ago, I had pains in what felt like the left side of my voice box and below so bad that it hurt the breathe deeply and swallow. I also couldn't talk at all for 2 wks. The doc finally scoped me and saw I had an infection at the back of my throat causing drainage that inflamed my voice box. They put me on antibiotics and I felt better after a few weeks, only I still had a sensation, almost like tightness on that left side of my larynx that lasted a few more weeks. So I went back to an ENT this time who said it was LPR. Cutting out alcohol and caffeine and eating 3 hours before bed helped it to go away. Then a few weeks later, I had an intensely itchy sensation like a tickle on the right side of my voice box this time. I stayed on a strict diet for a couple weeks and it went away.
There were a couple weeks that I felt totally normal and began drinking and having coffee again. Then I got that same tickle in my throat sensation so for 4 weeks ate completely healthy like before but this time, the symptoms stayed. I lost motivation to eat healthy, since it didn't seem to be working so starting eating out and having sweets again, but have not been drinking alcohol or caffeine. I started taking omeprazole. It's been 7 weeks now and I still have this slightly itchy irritated sensation on the right side below my voice box.
My doc says to give it 8 weeks on omeprazole before she wants to up the dose. I'm also going to get scoped again.
The hardest part is continuing to eat healthy and not drink alcohol. It's so hard to stay motivated when there doesn't seem to be any relief. Especially when everyone around me always wants to eat out and drink. Do I just need to be more patient? Is this going to develop into some sort of cancer if it doesn't heal?
I'm also a teacher and have had to use a microphone since January. Talking for more than a few minutes at a time is rough on me. I honestly don't know if I could do my job if I didn't have a microphone. The thought of losing my job is really scary.
It does help to write it all down. Thanks for you info and support. Best wishes to all.
-Theresa
theresa87319
Edited
It's been a few months now feeling healed. My main symptom was painful talking for months. It felt like I was always bruising my voice box and had a burning sensation when I talked. This went on for almost a year. I wanted to share with you that voice therapy was surprisingly the main thing that helped me. Turns out I do have severe acid reflux (demeester score of 54 when normal is less than 14). However, my throat naturally compensated by straining when speaking. One week after voice therapy the bruising and burning pain was healed.
I'm sure painful talking is not the same symptom many of you have had, but if it is, please consider voice therapy. It changed my life.
I also take just 20mg of Nexium every night before bed and eat small meals and that helps too!
Gillian1956 tcb9
Posted
hi I was wondering how you are getting on have you found the acid watchers diet book be the answer to your problem s
ricoshay tcb9
Posted
Hi, and thanks for your clearly written post.
I am a sufferer since my early 40's and now I'm 65, so lots of info to share. Not cured....yet. I am much more controlled but the acid is still leaking and giving me all the usual symptoms as it plays havoc with all the tissues in the throat, alters the nervous systems responses to swallowing and even affects my ears as the increased acids appear to make their way via the middle ear tube Always felt the diagnosis was never there. That GERD or LPR or whatever are just shorthand for the observed symptoms. That doctors were just following each others lead and never ever performing any observation that led to a true functional understanding of the causes and effects.
Our cells are reacting or our tissues or our nerves or combination, or its a weakened muscle or ligament. No one specialist or doctor is definite because it seems the required diagnostic equipment is just not used. I had fun with a small acid monitor lowered via my nose into the throat and down to just above the LES. Whilst wearing it I actually felt much better!! I have taken PPI's to reasonable effect (probably saved my life!). However I am not impressed with the lack of any creative thought or true exploration of cause and effect.
regards
Lelwal ricoshay
Posted
hi - ive had symptoms for many years also and am now 67. my main symptom has always been acid taste in mouth which gets me down, coughing and throat clearing. occasionally i get pain in my ears and sinuses which i now realise are caused by the reflux.Ive researched the condition until im blue in the face and im so confused at the contradictory information on the internet. I take rabeprazole 20mg every day but the symptoms only left me for a few weeks and now its back. I'm going to ask for the acid monitor. can you tell me if its sore to get fitted as im nervous about the procedure. im very stressed having this condition so my anxiety is probably not helping. I m afraid of the damage to my throat causing cancer although i dontthink my lpr is as severe as many others. Thanks in advance.
lebod tcb9
Posted
I too have just been diagnosed with lpr, but apart from the lump in the throat and constant throat clearing my main problem us the chronic cough I've developed over the last ten months, i also have crohns, so trying to find a diet that suits is driving me crazy, I too have spent many hours researcing different diets, with what is goid and whats bad, its a niggtmare with many conflicting things, so I have started to read these such forums with the hope that it will help.
Hootie tcb9
Posted
Hey guys. Been living with LPR for 4 years now. the worst part about LPR for me is the ear pain. I get one-sided ear pain that flares up easily. I got the stomach flu a month ago and it's been insanely bad since. Unfortunately I cant take ppi's or probiotics as they interact with other meds I'm on. My diet is perfect but it's still there. What can I do?
christine101957 tcb9
Posted
I have read some of these posts with great interest as i find myself suffering in the same way and need to talk about it and how to overcome the feelings i am getting. I have this persistent slight burning feeling inside and up to y throat and mouth. I am now trying to lose weight with the help of a low acid diet but i would like to ask how you tackle the mental strain of it. How can i put it to the back of my mind so that i am not stressing about it all the time as i know this only makes it worse.
Any words of wisdom would be mush appreciated. Thanks
susan71759 tcb9
Posted
hi all: my non stop throat clearing episodes occur for 3-7 hours . usually from 11 pm into the early am hours. this is all new to me in the last week. i am changing my diet drastically. but is there anything i can do to ease things during the hours long episodes? they are so distressing. thank you. susan
ray68221 susan71759
Edited
unfortunately these symptoms take a long time to improve after you make the lifestyle changes....normally 2 months or longer. Be sure not to eat or drink for three hours before bedtime. Try drinking alkaline water. throat clearing is my main symptom so I empathize with you.
susan71759 ray68221
Posted
thank you ray. much appreciated susan
Maggie1962 tcb9
Edited
HI, i have read your article with great interest and thank you so much for all the information you have given it has helped me so much.i was out of my mind with worry because i only developed this condition a month ago.It started with the nasal drip and then slight sore throat that continued constantly .After a week i rang my Doctor and due to Corona virus only had consultation over the phone.She prescribed an antibiotic which did not help at all so i rang again a week later and had an other consultation.This time she said she taught it could be silent reflux and prescribed Nexazole 40mg twice a day. After two weeks i was still the same no change and no relief. After much frustration and anxiety i rang the Doctors again and asked would they give me a letter to see the ENT specialist .Another week later and still no change i was lucky to get a cancellation appointment to see the specialist.At this stage it was constantly going on almost a month and i was beyond myself with worry.I had all the sypmtons of silent reflux (still do with not much relief) feeling of something stuck in my throat,sore throat slight chocking feeling,sometimes heartburn raw or straining at the back of my throat.The ENT specialist confirmed there was nothing in my throat to worry about and said he taught it might be Gastroesophageal and suggested an ultrasound to check the neck and thyroid so i am waiting for that appointment .He also said that down the road if all fails there is a little procedure that can be done .After googling everything i could possibly find i have decided to change my life style ,its only been two days so far so nothing has changed but hopefully i will start to feel the benefit of change.I cut out dairy ,fried foods alcohol and just eat small portions at a time.I never had anything like this in my life and it just came on overnight but woah is it horrible,it affects your life so much.I lived a reasonably healthy life , I dont smoke exercised regularly but probably was too fond of my food but that all has to change,but if it helps i will do it.I did not realise until now how many people are suffering with this condition and your information has helped me to realise i am not alone on this and will keep researching till i get relief .Thanks again and please keep us updated it would be brilliant to find a cure or at least some relief from a raw throat.
saleh93888 tcb9
Posted
dear tcb9
tnx for sharing. my english is bad . i just wanted to say tnx and tell you that i have lpr to with exact symptoms like you even pain when talking only on left side 😄 my dr prescribed esomperazol in the morning and famotidine for the night. so far so good. i can see improvment in my throat and coughs. tnx again